What follows is a transcription of a Boston Herald article by Michael Lasalandra. It outlines a patient protest concerning the National Institutes of Health (NIH) honoring Dr. Alan Steere during its "Astute Physician" program.

This is followed by reader comments in Mr. Lasalandra's Guestbook. They have been preserved here, since the Guestbook has finite resources; Mr. Lasalandra writes regularly for the newspaper, "old" entries roll off and are lost. Hence, we are saving the responses with some permanence.

Intensity of emotions are the property of the originator, but shared with the same passion by many.

Wednesday, November 3, 1999

A renowned Boston doctor who is credited for naming Lyme disease in 1978 is expected to run into a group of hostile patients when he gives a talk on the illness today at the National Institutes of Health.

Members of the Lyme Alliance, a group of activist patients, say they will protest Dr. Allan Steere's talk, claiming his conservative approach to treatment discredits them and the doctors who believe them.

"He's giving a talk as part of a series honoring people for being astute clinicians, and that's really a slap in our faces,'' said Ellen Lubarski of New York City.

The protesters say Steere's guidelines for diagnosis and treatment of the illness are "obsolete, biologically unfounded and ethically suspect.''

Steere, of New England Medical Center, says Lyme Disease is being overdiagnosed and overtreated. He says it can be cured fully with four weeks of antibiotics.

But members of the Lyme Alliance believe the Lyme bacteria can linger in the body, causing problems for years, and that such patients must be treated with powerful antibiotics for months, years or even a lifetime.

They say Steere's emphatic opposition to the possibility of lingering illness has caused their insurance companies to refuse coverage and say that his testimony against their doctors before medical licensing boards has caused some of them to stop giving aggressive treatments.

Steere's 1993 paper, which claimed the disease was being overdiagnosed and overtreated, "was the turning point,'' Lubarski said. "The insurance companies jumped on it.''

Rita Stanley, a patient from Portland, Ore., said doctors who prescribe long-term antibiotic treatments are being harassed "by Steere and his cronies.''

She noted Steere testified at a hearing against a Michigan doctor who ended up being disciplined for mistreating patients and for fraud based on allegations he took money from insurance companies by falsely diagnosing patients with Lyme disease.

John Coughlin of Mashpee, state coordinator of the Massachusetts Lyme Disease Coalition, said many patients who plan to attend the protest "have gone to (Steere) and have been told they don't have Lyme Disease, only to find out afterwards that they do.''

A delayed diagnosis, he said, "is a big problem. If you don't get treated right away, it gets into your central nervous system and becomes difficult to eradicate.''

Steere's talk today on Lyme arthritis is part of the NIH Director's Astute Clinician Lecture series, established to honor an American scientist who has observed an unusual clinical occurrence and by investigating it has opened an important new avenue of research.

That occurred in the 1970s when Steere, then a rheumatology fellow at Yale, looked into a cluster of juvenile rheumatoid arthritis cases in Lyme, Conn., and eventually showed that the illness was the result of a tick bite.

Steere said this week that the criticism directed at him is based on politics, not science. "It's not rational,'' he said.

He said he is rigorous about requiring scientific evidence for the diagnosis of Lyme Disease and said there are people sick from other illnesses that persist in saying they are Lyme victims.

While some patients may have persistent pain and fatigue syndromes after their treatment for Lyme Disease, he said, "my experience is that those pain and fatigue syndromes can be treated more effectively in other ways'' than with antibiotic therapy.

He said his opinion is in step with the Infectious Disease Society of America and with the majority of the studies on the illness.

Concerning his testimony against the Michigan doctor, Steere said he was asked to do so by the state's attorney general and said he joined a number of Michigan doctors.

Public Guest Book responses:

Thank You For Signing The Guestbook

Thank you for filling in the guestbook. Your entry has been added to the guestbook.

The principal author of the Nantucket Lyme study sounded a lot more sympathetic in your article than in the scientific article published in Annals of Internal Medicine. Their conclusion was that the outcome for these Lyme sufferers was good, because the tests did not show otherwise. My question is whether those tests would be used to evaluate the outcome of any other infectious disease. I doubt if they would be applied in the case of TB or syphilis. The researchers (and a lot of doctors these days) seem to think that patients cannot be believed so they make up these (sometimes very silly and inappropriate) tests to appear objective. If it can't be measured in a test, it doesn't exist! They don't question the merits of this kind of testing. Furthermore, the Nantucket study was biased toward the Steere point of view. As you will recall, this man is anethema to people with chronic Lyme. I say the Nantucket study was biased because at least 3 of the co-authors have previously collaborated with Steere. Of the Lyme related studies in the reference section, more than half were authored by Dr. Steere. Three more were on the subject of "post-Lyme syndrome." This is what the Steere people call continuing infection and they say it doesn't respond to treatment. Not a single reference was to any of the studies which show the spirochete being found after treatment. And finally, Dr. Steere is thanked for reviewing this manuscript! I doubt if the people of Nantucket Island are thankful about the results of this study. It is a disgrace that our government health institutions keep sending all the research funding to the Steere camp.
lou <overman74@hotmail.com>
- 01/03/00 14:17:04 EST

What silliness!!!And that includes eveyone involved:Dr. Levine, Mayo Clinic,NEJM,and you for making a mockery of your pulpit
Joel A Saperstein MD <Sapmd@yahoo.com>
- 12/30/99 13:53:36 EST

I've just been sitting here reading some of the comments.I have been comp illiterate also.Ive had lymes for 2 yrs. after being hospitalized with menengitis when they figured it out. well it is not gone but noone will listen.I'm currently looking for a dr.who will hear me.This is insane what is it going to take.people are dying and no one will help us. They are treating us for all kinds of other aliments but not for what is really wrong.God Help Us!
rainbow <rainbow2ld@aol.com>
- 12/28/99 21:20:58 EST

Dear Mr. Lasandra: I am a victim of Lyme disease and Dr. Steere. In 1984 I moved from Staten Island, New York to California. Before moving from New York, I had developed flu, join pain y many other simptoms. I had many diagnosis mainly connective tissue disease and since Lyme patients taste positive for R/A, I was finally dignosed with it. In 1989 I saw a program in 20/20 describing Lyme, there it was a rash exactly like the one I had back in 1984, what my room mate had calle a "hikey" because it was it in my neck. I started to read as much as I could about Lyme,and then, just as you do now they credited Dr. Steere with discovering this disease when in actuallity all what he did is recognized what the Europeans already knew. I called his office to get an appointment to see him. It was impossible for me to find a doctor that even heard about this disease. He will not give me an appointment unless a doctor had already "dignosed the illness", however, he was kind enough to referred me an specialist in Lyme here in California. I was happy to find a doctor that knew about Lyme. When I called this doctor's office I was told to bring all my records so Lyme could be RULED OUT. It was ruled out. I had no doubt that this doctor had written, as his office stated, articles about Lyme but surely he was not interested to learn about this disease. Now that I attend a support group for this disease I met another disable person who was diagnosed by this same doctor as not having this disease. I was computer illiterate until last year when I got into the internet. I thought I was going out of my mind. I did not understand why I could not find a doctor to help me. I did not know that Lyme doctors are obstracized, ridiculed and persecuted. Most of these doctors had been themselves, or very close member of their families victim of this disease. I thought I was the only person that I went thru that brain wash from all those doctors, I thought that just because I have an accent they had that attitude, no, all tha Lyme victims go thru the same thing and there are thousands of us. Read Personal Stories in the internet. From being a hard worker tax-payer citizen, I became a disable tax-user person. In March 1998, I got so sick with is called "trombocytophinia", in order to save my life, I was told, they had to take my spleen out, they did. Read the New England Journal of Medcine of July 15, 1999. The skeptical doctors they still insist I have R/A because I tested positive for it and I have the similarities of it. I only know that now thru the internet, I finally have found a doctor treating me with megadosage of antibiotics, my arthritis is dissapairing and I am starting to live again. I am olny affraid that my doctor like other Lyme doctors sooner or later would become a target and become persecuted. Do we live in a democracy? It is unforgivable how this illness have become politicized.
Myrna Vallejo <myrva@yahoo.com>
- 12/28/99 02:24:37 EST

When I read this article I knew I had seen this sort of Borrelia Spin (BS) before here in Southeastern CT. I laughed the first time I saw it. We *patients* exposed the fact that these Rheumatologists screwed up the vaccine by recommending the only thing that they have been able to marginally substantiate as the source of causing a potential autoimmune disease, the vaccine, OSP A, or LYMErix. So now they are going public with the information. What a laugh. This article is part of that whole spin campaign. They screwed up the Lyme vaccine, now they are trying to cover their asses. We also knew these Rheumatologists were trying to sell (spin) Lyme disease as an autoimmune disease to pharmaceutical companies. Pharmaceutical companies LOVE autimmune diseases because the treatment is chronic use of antiinflammatories. For every new autoimmune disease, dollar signs shine in the eyes of the new drug development team managers, as well as the stock holders. Antiinflammatories are the bread and butter of Pharmaceutical companies. It is not "pain" that disables us. It is the chronic Lyme meningitis, a somatic symptom set like the flu, and various inflammed and damaged nerves from a spirochetal illness for which these Rheumatologists, like Allen Steere, have no concern to cure us. Should there be a cure for chronic Lyme disease, or chronic spirochetal illnesses, Steere and his friends would run out of free NIH money to run rampant over the planet patenting new tick-borne diseases and diagnostic kits to test for them. It (money) is the motive to spin this disease as a either an autoimmune disease or as a character flaw, and not a real illness. Steere spends time in Russia now, and other European countries should be wary of his activities. He seeks only to exploit their populations, not to cure their people. The NIH condones this and is as guilty of this human rights violation as Allen Steere and Dr. Steere's friends in the American Lyme Disease Foundation (not to be confused with the real Lyme Disease Foundation). The disability of Lyme disease is caused by the manifestations of a spirochetal illness that affects the nervous system, just as syphilis does. There is no cure for it. The NIH does not fund people interested in discovering a cure for it. A country not attempting to treat its citizens for an epidemic of a chronic disabling illness is an international human rights violation. Proclaiming to the world that we chronic Lyme patients have a character flaw will (stating that chronic pain is the source of our disability) is discriminatory- also a human rights offense. This spin campaign will not succeed. The truth will come out. The NIH is responsible for this deception and it will be for the countries of Europe to recognize the threat these American scientists pose to the health of their people. It is a human rights violation to deny people antibiotics for an infection. It is a human rights violation, as a physician, to avail one's services to perform independent medical evaluations for insurance companies when the outcome is predictably "No further antibiotic treatment needed" Physicians who perform this service are the paid whores of managed care. If there was actual intelligent life within the insurance industry they would see that they will have to pay and pay and pay for this disease, one way or another and Steere's spin of it is not helping their financial future, no matter how they interpret it. Either they pay for antiinflamatories or antidepressants or long term diability, etc,.. whatever. Insurance companies will pay for this disease. They should be petitioning the NIH to find a cure for Lyme disease... It is unethical for LifeSpan Insurance company to be involved in Allen Steere's Chronic Lyme study, when it is in the interest of the insurance company to not treat Lyme disease with expensive antibiotics. Steere's study is destined to conclude that antibiotic treatment of seronegative (negative blood test) Lyme is experimental and therefore should not be paid for. His study only includes seropositive Lyme patients. Patients with Lyme disease test negative about half the time. This study was designed from the outset to serve the desired results of LifeSpan -- not to treat patients with the best available care for for an illness- a human rights violation.... It is not "pain" that disables us. It is the neurological symptoms which are by no means subtle - the results of Lyme encephalopathy is similar to Alzheimer's disease - that disable us. For any physician to buy into anything Allen Steere has to say, or participate with him in any of his vaccine trials or other studies about Lyme disease is to invite future indictment for human rights violations. Guaranteed. Ask these Rheumatologists do for their own patients? Patients with Rheumatoid arthritis? They are able to help them very little. All of their treatments are empirically derived, just as Lyme has been all these years, by trying various antibiotic treatments to find one or a set that kill most of the spirochetes. Look at what these Rheumatologists do in their own specialty. They do nothing. Besides, patents for new vector-borne pathogens and diagnostic test kits come along more readily than anything they have been able to discover in Rheumatoid arthritis. Lyme disease is a gold mine for them - the health and wellbeing of others are dispensible. If they can spin Lyme disease to the public, anyone can spin any disease to effect the swelling of their personal fortunes. These US Patent Hounds are a scary bunch. If it takes international pressure to bring about a correction in the spin of this disease, so be it.
Kathleen M. Dickson <kathleen.dickson@snet.net>
- 12/26/99 15:21:37 EST

Michael - Your work re LYME is very much appreciated. I understand you are merely "reporting" this study and this Dr.'s findings. It would seem, however, that you have a responsibility to see if the LLMDs - - Donta et al - - have anything to say vis-a-vis the findings of this study.
treatedbutstillinpain <shct99@aol.com>
- 12/23/99 10:35:30 EST

Thank you for your latest article on Lyme disease. It is interesting that if patients are treated with antibiotics for longer than the conservative 4 weeks, that improvements in pain, cognitive function and other problems with this disease are seen. If patients still show continued symptomology following this so-called curative therapy, it is very likely they have persisting disease. No studies have ever ruled this out; the researchers have only "declared" that persistance of infection does not exist. This is unacceptable, and the conclusions drawn from such research are not only ethically suspect and faulty extrapolations but lousy science. Rita L. Stanley, Ph.D.
Rita Stanley, Ph.D. <ritastan@worldnet.att,net>
- 12/22/99 23:25:00 EST

I would like to comment on the article regarding pain and Lyme Disease. I live in TN where Lyme "does not exist" (ticks don't cross the state lines you know). I contracted Lyme here, and I went through a ridiculous and unnecessary amount of heartache to get diagnosed. I now must travel out of state to get the treatment I need. A lot of time was wasted--time I could have been receiving treatment instead of becoming increasingly ill. I never knew anyone could experience such intense pain on a daily basis and still wake up the next day. When I recently got my prescription filled, the new pharmacist was appalled at the price of the antibiotics I take. When I told him it was all because I was bitten by a tick, he told me a story that both breaks my heart and makes me determined to educate people about the very real and serious threat of Lyme Disease. His lifelong friend's 19 month old daughter just died. They found a tick embedded in her hairline. This poor baby, too young to speak, had bullseye rashes over her hands and arms (as you know only about 50% of people with Lyme get the rash), and still no one knew what was wrong! Her pain did not persist, it died with her. She died due to ignorance. She died because she was bitten by a tick, and no one knew the obvious signs of Lyme Disease. I believe health practitioners are afraid to admit that Lyme Disease is a growing public threat. I think they believe if they ignore it, it will go away. The only thing going away are the lives and health of too many people. Who else must pay the ultimate price before this is taken seriously?
Mary Ann <ko_@bellsouth.net>
- 12/22/99 21:18:34 EST

Response to: Pain persists in treated Lyme patients. Another quote from the CDC "New, Reemerging, and Drug-Resistant Infections.... The AIDS pandemic and a host of "new" infectious diseases, such as Lyme disease and Escherichia coli O157:H7 infections, have affected millions of people. The incidence of a number of serious diseases (including malaria, cholera, and tuberculosis that were once under control in many parts of the world) is increasing. Illnesses whose causes have not been understood (e.g., peptic ulcer, cervical cancer, Kaposi's sarcoma) appear to result from microbial infection. New or reemerging infectious diseases, such as hantavirus pulmonary syndrome and hemorrhagic fevers (e.g., Ebola, Lassa, and dengue) continue to pose threats. Foodborne diseases are increasing because of changes in food sources, processing, transportation and diet. Infections caused by drug-resistant organisms prolong illness, and if not treated in time with expensive alternative antimicrobial agents, can cause death. New or increasing drug resistance has been recognized in organisms that cause malaria, tuberculosis, gonorrhea, pneumonia, middle ear infections, diarrheal disease, and hospital-acquired infections.
Jeff <jaj123@netzero.com>
- 12/22/99 20:44:06 EST

Response to: Pain persists in treated Lyme patients I don't get it! And neither do a lot of others! If Lyme Disease can be cured so easily then why does the CDC (Center of Disease Control) have so many references to Lyme Disease being a dificult disease to treat and mention Lyme Disease in the same sentences as AIDS????? Read a sample from the CDC website below: "Infectious diseases are a continuing menace to all people, regardless of age, gender, lifestyle, ethnic background, and socioeconomic status. They cause suffering and death and impose an enormous financial burden on society. Although some diseases have been conquered by modern advances, such as antibiotics and vaccines, new ones are constantly emerging (such as HIV/AIDS, Legionnaires' disease, Lyme disease, and hantavirus pulmonary syndrome), while others reemerge in drug-resistant forms (such as malaria, tuberculosis, and bacterial pneumonias)."
Jeff <jaj123@netzero.com>
- 12/22/99 20:36:29 EST

Thank you Michael for doing another story about Lyme, I appreciate it!! And it's very true. I am a 10 yr. Lyme patient and although I am not sick all the time, when I get flares one of the worst things is the arthritis so it was nice to read that others also have the same problem. Thank you again for the Lyme articles!!
Jean An <jeand@tisd.net>
- 12/22/99 14:01:36 EST

The testing sensitivity and the diagnosis, based upon testing is the key. I was a lymerix vaccine participant and so were many people on Nantucket. I was asymptomatic and tested negative according to CDC and Doctors in charge of the "study" and then became so.. very ill I almost DIED! They look the other way when you begin to report problems occurring with the "study". None of the information is unbiased. I have NOTHING to gain by disclosing this information, but all the doctors would be exposed, God forbide, and so much time and $$$ has gone into this. They can't afford to be caught lying , not NOW! Please understand that medicine ISW a business and people with letters behind their names have lots of power! LL
Lynn Lane <bljst@aol.com>
- 12/22/99 12:52:13 EST

How may I read on-line or otherwise your article on Nov. 3rd re a Lyme disease protest, along with letters to the editor and possibly e-mails which followed?
Ann Latimer <abclatimer@iquest.net>
- 12/14/99 16:40:37 EST

I am commenting on the Steere honored at NIH article. Are you aware that until 1980 Steere insisted that Lyme disease did not respond to antibiotic therapy and that antibiotics should not be used? Steere published that in his papers up to 1980. He is a little embarrased by that. My point is that if was so totally wrong then, why put any faith in what he says now? If you do a furture article please emphasize that Steere has a history of being wrong. He would not treat most people with antibiotics in the 1970's, and more people have been denied antibiotic therapy for Lyme disease by Dr. Steere than any other Dr. that exists.
Peter McFadden <frisbeeman@mindspring.com>
- 12/13/99 23:17:48 EST

where can i find your article on lyme disease, would love to read it, as i have also a nightmare story about being misdiagnosed,as do thousands of people. thankyou
chris teubner <cjt48@aol.com>
- 12/13/99 21:46:38 EST

I was diagnosed with Lyme Disease in August when I came down with Bell's Palsy. I am taking Suprex and lot's of herbs and vitamins. My face is almost back to normal. The Lyme is about 25% better now (December 99).
Tammie L. Rushton <TammieLR@aol.com>
- 12/11/99 19:30:45 EST

Mr. Lasalandra,

I would like to thank you again for publishing your article about Lyme disease, and the patient protest against a Dr. many LD sufferers consider the enemy.

You may not know, but following the lead of the NIH protest, there was also a protest December 8, 1999, at the NYC offices of the OPMC, concerning the harrassment and revocation of licenses for Lyme treating doctors who are not considered the enemy.

While I could not be there, some of my thoughts about that protest are a direct result of your article, and the guestbook comments it generated:

I am NOT a resident of New York State; I AM a Lyme disease (LD) sufferer. While I cannot be in NYC the day of the protest, my LD damaged heart will be with the protestors. That is why I am sending this letter early.

The reason for the OPMC protest, calling attention to the harassment and license revocation of Lyme treating physicians, has already happened here is Texas, with disastrous results. Physical, emotional and financial harm has overcome patients and physicians alike. Permanent disability is not my idea of fun. Bankruptcy of a physician’s practice affects the patient, physician and physician’s family, and any other compassionate physician thinking of including LD patients in their practice. It is a very vicious cycle that is triggered by anonymous allegations.

In the license revocation case of Dr. Perry Orens, the OPMC seems to ascribe to the antiquated opinions of a small group of the-insurance-industry-captive-specialists (hereinafter referred to as TIICS) with the opinion that:

LD is easily diagnosed and treated
LD is over-diagnosed and over-treated

This TIICS opinion is so valuable to the insurance industry that they are paid to provide that testimony; always against patients seeking treatment, and against other physicians that provide that treatment.

To the TIICS, I say BUNK!

If LD is so easily diagnosed and treated, why do LD sufferers spend an average of 5 years, and see in excess of 10 doctors before receiving diagnosis and start of treatment?

At the very basic level, LD is:

"Lyme disease is a chronic, multisystemic, neuropsychiatric, incurable disease caused by a tick bite. Lyme disease causes functional, chemical, and structural changes in the brain and affects nearly every body system. It is a cyclic disease, meaning that treatment regimes must address the ever-changing manifestations of the disease. This treatment process requires careful monitoring by a Lyme-disease specialist -- usually a neurologist or infectious disease specialist."

Misunderstandings about the patient's condition are common because often the patient "doesn't look sick," yet there numerous psychological, physiological, and brain chemical changes taking place constantly. Lyme disease can normally be treated very effectively with early detection and appropriate treatment. The patient does not have to be relegated to a life of suffering."

Without early detection and appropriate treatment, it affects joints, internal organs, and has central nervous system (CNS) involvement during the untreated progress of the disease. The TIICS will tell you most of the symptomology self-resolves over time without treatment. What they don’t tell you is that if left untreated, LD goes on to the next, more debilitating stage or cycle. It is this on-again, off-again symptomology, coupled with physician ignorance, that makes it so difficult to receive a timely, effective diagnosis. LD can mimic up to 200 other diseases.

DR. 1 – "You have rheumatoid arthritis (RA)."

DR. 2 – "Who told you you have RA? RA is incurable. You don’t have RA, you were misdiagnosed. You are better now, go away."

DR. 3 – "You have inflammation/enlargement of the heart/lungs/liver/spleen/etc."

DR. 4 – "There is no sign of current inflammation of your (you fill in the blanks.) You were misdiagnosed. You are better now, go away."

DR. 5. – "There is something wrong with your nerves or brain. How much stress are you undergoing at work and in your family life. Listen to these stress-reduction tapes. Go away."

DR. 6 – "Chill out. Take these anti-depressants. Go away."

DR. 7 – "Beats me what you’ve got. Let me refer you to another specialist. (Go away)."

DR. 8 – "Nobody can have that many symptoms. It’s got to be in your head. See a shrink. (Go away)."

DR. 9 – "I don’t give Lyme tests. I don’t believe in Lyme. Your daughter doesn’t meet the age criteria for LD (actual Dr. statement!!!!). GO AWAY, I DON’T WANT TO LOSE MY PRACTICE."

DR. 10 – "I see by your LD Symptom Checklist (https://www.angelfire.com/biz/romarkaraoke/Lymekjr.html) that it is Highly Likely/Likely/Unlikely that you have been exposed to Borrelia burgdorferi (Bb). Although LD remains a CLINICAL diagnosis, there are some tests for Bb and other co-infections that will help determine WHAT YOU DON’T HAVE."

If LD is so easily diagnosed and treated, why was so much time and tax-payor monies used to develop and market a vaccine?

If LD is so easily diagnosed and treated, why do so many of the TIICS not use the vaccine in their own practice?

If LD is so easily diagnosed and treated, why have the CDC, NIH and others spent so many years and tax-payor monies studying the chronic, long-term effects of LD?

If LD is so easily diagnosed and treated, why has TIICS-prime (Dr. Alan C. Steere) spent so much time and effort changing his position on what that treatment should be? (https://www.angelfire.com/biz/romarkaraoke/BUMSTEER.html).

When TIICS-prime was questioned by a fellow scientist about his position on LD treatment and replied in essence "…that perhaps there is an over-reliance on my opinion...", did he not publicly call to task those that have that over-reliance?

I feel that the reviewers at OPMC have failed their charter in this case. While the public at large MUST be protected from unethical and unprofessional conduct in the medical field (remember this headline?: 28,000 – 48,000 medical mistakes lead to death in hospitals annually), the reviewers MUST take the both the objective and subjective viewpoint when evaluating anonymous allegations, not "would I do this in my practice?"

As I previously stated in a recent letter to NIH:

"You must use both the objective and subjective viewpoints when arriving at your "proof":

The objective – "There is no evidence that…"
The subjective – "It cannot be ruled out that…"

You scientists go ahead and keep studying until you find the evidence you so sorely need.

In the meantime, remember that many treating physicians and patients have benefited from aggressive antibiotics treatment. This is not anecdotal.

"There is overwhelming evidence to support the hypothesis that some patients are not cured with short courses of therapy; that persistent disease can be demonstrated both clinically and in the laboratory, and that such patients in many cases respond to aggressive retreatment. One could convincingly argue that a doctor who failed to treat a patient presenting with symptoms of chronic Lyme disease might fall below the standard of care given what we now know about persistent infection and treatment failure. Until clinical trials are completed, this issue remains open for argument; in the interim, the standard of care must continue to make room for both approaches."

In other words, since it cannot be ruled out that benefit is derived from aggressive antibiotic therapy, the NIH and Dr. Astute should abstain from taking the position that just because you wouldn't treat this way doesn't make it wrong."

I, for one, call for the immediate reinstatement of Dr. Perry Orens’ medical license; I further call for an immediate investigation of the OPMC reviewers, their industry/institution affiliations, and the OPMC standards of review.

R. James Martin Euless, Texas
James Martin’s Lyme Disease Horror Story How Lyme Disease And Exploitation of ERISA Laws Can Ruin A Life https://www.angelfire.com/biz/romarkaraoke/james.html
R. James Martin <rjamesmartin@yahoo.com>
- 12/09/99 17:36:02 EST

Thank you very much for covering the Lyme Disease controversy. I hope that you will continue to explore this issue. Like so many others, I developed frightening neurological symptoms as a result of Lyme Disease. Despite two positive blood tests and two lesions on my brain, I was told (by the head of the Lyme Disease clinic at a major NY teaching hospital) that I did not have Lyme Disease because my joints were not swollen. I lived with the nebulous diagnosis of fibromyalgia/chronic fatigue syndrome for three years, all the while coping with cognitive difficulties, muscle pain and stiffness, dizziness and intense fatigue. Eventually, I had a third positive test and was treated for six weeks. Unfortunately, my symptoms only worsened during this period. Six months later, after many expensive tests (the lesions had increased in number), I found a wonderful doctor who put me on intravenous antibiotics. I improved dramatically during the five weeks they were administered, only to relapse upon completion. Over the next couple of years, I was given a number of short courses of antibiotics but was never cured. During this period, my doctor handed me an article by Dr. Steere. He explained that, according to Dr. Steere, I had developed fibromyalgia as a result of Lyme, and that further antibiotic treatment was not warranted. Nevertheless, I continued to decline mentally, so much so that I was finding it difficult to speak and follow simple conversations. My ability to work and even to read was very much compromised. Eventually, I had neuro-psych testing that proved I had become seriously impaired. I had also developed oligoclonal bands. With these results, I was able to convince my doctor that I had late-stage, chronic Lyme. I have been on antibiotics for two and a half years with remarkable results. Unfortunately, I cannot miss a dose without feeling the effects. But I am very grateful to have my mind back. Please investigate this controversy further. I have met dozens of people who are suffering terribly as a result of an initial misdiagnosis or a subsequent diagnosis of post-Lyme syndrome/fibromyalgia. In my highly endemic neighborhood, I meet people every day who continue to feel dreadful despite having Steere'sequivalent of a curative dose of antibiotics. My own experience points to the highly effective use of long-term antibiotic therapy. I do not want to see others suffer as I did. Thank you again for your coverage of this topic-
Yvonne Kosakow <kos1@earthlink.net>
- 12/03/99 23:36:08 EST

Considering the fact that I have VERY late lyme, I am really glad that a paper is covering this very volatile issue. Due to my brain damage, I get very upset with those who want tretment options only for early lyme as well as finding out that there are those mds who lose their licenses. Lyme has affected not only me but has also impacted upon my whole family. In fact there are many things about my children's childhood which are gone from my mind. Upsetting? yes. Slowly, I am learning to retrain for the damage lyme caused me. I just hope my granchildren can appreciate the few things I do have left as I have to do everything long distance now as we have moved from New England. Incidentally, NE is where I got bit initially, & I am not even sure when.
sue tiffany <quincy@datasync.com>
- 12/03/99 08:34:54 EST

In reading your article about a Lyme disease specialist, I was interested if you know the Dever Post printed an article that the National Institute of Science (check that out) reccommends that medical doctors and other health care profes- sionals be monitored more closely. If so, instead of relying on thier paperwork, could advocates or omsbudsmen be placed on site who have knowledge of conditions and have experienced illnesses and poor treatment themselves? Also, could there be free treatment for people who are not cared for correctly? Either through fines, malpractice to specific Drs, etc. What happens is Drs. hide behind hospitals, private corporations they surround themselves with, and their ultimate responsibility ends when the patient dies and the family or insurors pay the doc's the bill. Sad. Thank you for your interest, I hope, in this matter. December 2, 1999.
Lauretta Lowell <Lauretta Lowell@yahoo.com>
- 12/02/99 16:24:44 EST

I am writing to ask you to help us with lyme disease. The license of Dr. Orens being revoked is absolutely unimaginable. It is so wrong, there are so many people. I am secretary to the Michigan Lyme Disease Assoc. and also have a support group. We cannot keep up with the problems that lyme victims have. It runs the gamet from losing their health, families, homes, loved ones, jobs, ect. It is awful coming home from work so tired I can't get up my steps and then have to help others. Our phones are always full, our toll free number gets 500 to 700 calls a month. There has to be and end put this conspiracy. Yes, that is what it is. These people are ill and need understanding, not their doctors afraid of getting their license revoked. I hope you cover the protest on December 8th at 5 Penn Plaza, New York. That would be a tremendous help. Thank you for listening. Sorry if their typos, lyme brain me. By the way our organization just got a Resolution in the Michigan Congress for our educational efforts. Thank you, Connie Siese
Connie Siese <Cslyme@aol.com>
- 12/01/99 19:36:45 EST

Dear Boston Hearld, At the risk of being pretentious, here is my story involving a very political disease. There has been a protest at the NIH involving Dr. Alan Steere, an advocate of the insurance companies and the people Lyme has effected. In addition, if you are looking for people who have used the internet to find medical diagnosis and treatment, that is how I reached my diagnosis. 3 year ago I started to have problems walking down stairs. I set up an appointment with my neurosurgeon as I had a history of several herniated discs (HNP) in my back. He ordered an MRI of my lumbar and thoracic back. The MRI showed 2 new HNPs. He decided to be throe and ordered a cervical and brain MRI. The brain MRI came back plaque/artifacts demyliating disease (MS). He refereed me to a neurologist. The neurologist reviewed the MRI and believed the MRI showed artifacts. He said that even if they were plaques, the plaques were in the wrong spot for MS. He ordered an audio and visual EMG, did a spinal tap, an evoked potential test and a follow up MRI, all negative for MS. At this time (March 97) I began to surf the internet for information on MS and the neurological conditions as MS was not completely ruled out. One person on a web page (University of Georgia) recommended test and retest for Lyme disease. I asked my neurologist for a Lyme test and he ordered an ELISA blood test which was negative (this test is only 14% accurate). The symptoms slowly got worse. The neurologist did say that I had compression of the spinal cord (by MRI and evoked potential) and recommended surgery. I had a micro discectomy at T-T11. I had relief from the steady decline in my ability to walk for about 10 days, then the symptoms came back. I had another brain MRI several months after the surgery (January 98) that again was negative. I continued to serf the web for medical information (I continued to research Lyme disease as the information that I looked at represented that Lyme was curable) for neurological diseases. I then saw my GP and asked him for another Lyme test. Again, only an ELISA was done and again it was negative. In April of 98 my neurologist sent me to Phoenix, AZ to the Mayo Clinic for a second opinion. They redid most tests and a few more. The Mayo's diagnosis was neurological problems etiology unknown. They ruled out MS. I asked the neurologist at the Mayo about Lyme and showed him a rash on my leg (the rash was showed to all previous doctors), a very telltale symptom of Lyme. After the Mayo, my neurologist ordered another brain MRI. The radiologist diagnosed MS as the film sowed some shadowing on the brain stem, however, my neurologist examined the film along with a neuroradiologist and opinioned that the shadow was just an artifact. He ordered another evoked potential in November 98, however my partner canceled my health insurance and the test was not done. During this time researched MS and Lyme on the internet. After the first of the year, I decided to use the internet for a referral to a Lyme literate doctor. I searched the main Lyme pages and it lead to a support group in Las Vegas. I spoke to person representing the group an she set me up with a visiting doctor. He immediately ordered a Western Blot and a LUAT urine test. He sent the blood and urine to Igenex, a lab specializing in Lyme testing. Both tests came back strong positives. These tests along with the rash lead to a diagnosis of Lyme disease. I have been on assorted antibiotics since, searching for the right one that will be effective against the strain of spirochete I have. The quicker Lyme is found, the quicker relief is found. I currently walk with a cane (the short distances I can walk) and have weakness in my left arm. My doctor has said that I will be cured, that it may take up to 2 years. If this is a story you are looking for, you can reach me at larryy@lvcm.com or (702) 435-3615 (evenings), (702) 837-4202 (days). Larry Yenko
Larry Yenko <larryy@lvcm.com>
- 12/01/99 15:09:26 EST 

I just wanted to thank you for the article on Lyme Disease and the reprehensible actions of Dr Steere and his peers. Thanks to him and his cronies, it is becoming more and more difficult to find a doctor willing to treat Lyme Disease patients. Doctors now fear for their licenses if they treat Lyme Disease more aggressively than the conservative camp dictates. In fact, just last week, we lost a brave doctor who was courageously treating people very sick with Lyme Disease. The New York medical review board revoked his license for over diagnosing and over treating Lyme Disease. This is really quite perplexing considering there is NOT ONE research paper or scientific study that has ever been able to prove that short courses of antibiotics completely erradicate the spirochetes. What HAS been proven, in MANY papers, by some of Dr Steeres associates even, that Lyme Disease, in some cases, can come back without any additional exposure to the disease. Clearly, short courses of antiobiotics are not effective in wiping out the disease in some people's bodies. Just as short courses of antibiotics are not effective at wiping out Syphillis (another spirochete illness) or Tuburculosis, for that matter. So what frustrates Lyme Disease patients is that their bodies are telling them that they are still sick, many of their tests indicate they are still sick and yet according to Dr Steere - they MUST be cured! Consider this, my aunt had cancer twice and lyme disease once. She said having lyme disease was worse than the cancer. Can you imagine a doctor turning away a cancer patient because their cancer returned? Would a doctor tell them that they don't have cancer again because they got "X" doses of chemotherapy? Don't we all know that bacteria are great at mutating, just like cancer, and they can quickly form a resistance to antibiotics? Wouldn't a compassionate doctor try to treat a patient with resistant or recurring cancer with different therapies or chemotherapy? Why would treating a bacteria be any different? I've got to tell you - it defies all logic. PLEASE look at this closer - there is much much more here. Plenty to write about. Thank you again for your article.
S Douglas <JGood246@aol.com>
- 11/30/99 22:15:56 EST

Your article about Steere was so true. If the people with the disease do not see Steere as an authority with their best interest first, then that has to be taken seriously. His stance has caused so many people to be inadequately treated. Steere is not an authority or a spokesperson for Lyme.
Stacy <Freeland1@prodigy.net>
- 11/30/99 00:23:04 EST

Thank you for the article on Lyme Disease. My son has been very ill with Lyme Disease for about 3 years. He presented with a fever, malaise, flu like symptoms and a rash on his chest. I didn't realize that a rash could be indicative of Lyme Disease at the time. So I thought that he had the flu. About 3 weeks later he had such severe abdominal pain that I took him to the ER. He had an emergency appendectomy that evening only to find out that his appendix was normal but, according to the surgeon, his pelvis was inflamed. He continued to have severe abdominal pain and was unable to attend school. He was diagnosed with colitis. Then he was diagnosed with arthritis of the hip and spine secondary to bowl inflammation. And put on prednisone 60mg per day for 3 months. He had been ill for 2 months at this point and was getting worse every day. By this time he was having such severe spasms that he was literally thrown to the floor. The spasms were lasting from one to two hours with a break of perhaps an hour or two. The process would then start all over again. This went on from mid September of 1997 until August of l999. He truly was living a life of constant crippling pain. During this time he was being seen at Yale After extensive testing for everything imaginable (except Lyme Disease) and several hospital admissions later I was told that "he was trying to be the perfect child and was crying out for help". This despite the fact that they themselves had admitted him the first time they saw him because they were concerned that "something might be about to rupture" because he was in such severe pain. During that year he was admitted to the hospital 10 times - always in severe pain. At one point he was taken to the hospital by ambulance in cardiac and respiratory distress and was given IV Morphine in the ambulance. The final outcome at Yale was that, after seeing three psychiatrists and having all of them say that he was a normal goal -orientated adolescent with depression appropriate for the pain he was enduring, Yale was still adamant that he was having psychological problems. As I became more adamant that there was something wrong Yale decided to test for milk allergy. Although the tests were negative they still wanted to pursue the possibility. Needless to say we left Yale. I often wonder why the same institution that insists that if a Western Blot is negative you couldn't have Lyme Disease but if a milk allergy test is negative they still want to pursue it. After leaving Yale we finally got a diagnosis of Lyme Disease. He was dealing with constant abdominal pain; swollen knees, hips and hands; short term memory loss, severe migraine type headaches, confusion and red rashes that appeared and disappeared regularly. He was unable to walk frequently and was forced to used a wheel chair to be mobile at all. He also had sleep disturbances - he rarely slept at night and slept fitfully during the day. His skin became so sensitive that if he was touched it caused pain. Any noise set off spasm and seizure. In short his life became a living hell.. He went through several rounds of IV and oral antibiotics Then the decision was make to start him on Flagyl. At first he was extremely sick then slowly he began to improve. He is well enough now to return to school part time ( two courses) but he still misses school sporadically. He is unable to write because of the arthritis in his hands. He still has times when he is very confused and unable to think clearly. One day in school he became so disorientated that he wasn't able to find his way to the elevator. Luckily, he happened upon his brother and was escorted to the car where I was waiting for him. Some days he can't walk because his knees are so sore and swollen but the frequency of these events has diminished greatly. He now has problems about every 4 or 5 weeks. Those times are very difficult for him but he does have days when he can function. The symptoms that plagues him most often at this point are the ever-present pain and the fatigue that never seems to leave. He gets exhausted after a few hours of activity. . Noise and light are major problems. They invariably set off confusion and mild seizure and spasm. I have seen him staggering as though he was "drunk" . I have seen him on the floor flailing and twitching in pain. I have seen his eyes go blank as the confusion sets in. I have seen him struggling to get to a chair before he falls on the floor (frequently not making it before he fell). I have seen him fall off a chair that he was sitting on. I have seen him struggle to perform a simple task that was made unattainable for him because of the "brain fog" or confusion or the pain that he was dealing with. I have seen his hands and knees so red and swollen that he couldn't move because of the pain. I have seen blood under his skin as the force of the spasms tore soft tissue. He still has those marks on his skin and they fill with blood to this day when he is having spasms. I have seen him struggle to figure out where he was in relation to the rest of the room. I have, most of all, seen my son fight with everything he has in him to just keep going. Finally I have begun to see him improve --very slowly with set backs but he has begun to improve. No one could begin to understand the toll Lyme Disease takes on the lives of the patient and the family unless they have been there. When I hear it said that Lyme Disease can be "cured" in 3 or 4 weeks I wonder who could believe that -- only those who haven't had to deal with the persistent infection that Lyme Disease can be. Perhaps there are cases where that can happen but in my experience that isn't the case if Lyme hasn't been diagnosed right away. In my sons case it was almost a year before he was treated. We are now in the third year and he is just beginning to improve. He has missed his early teenage years. So far they have been spent in pain and isolation from his peers and all the things that kids his age are doing. He has told me on several occasions that the worst part of Lyme Disease is the isolation. He is far from what he was before Lyme Disease, hopefully that is in the future for him. Right now he still needs medication and isn't able to live a normal life by any means. Please continue to inform the public of the other side of Lyme Disease - the untold side of the suffering of the patients and their families. Anita Field Southbury, Ct.
Anita Field <anitafield@earthlink.net>
- 11/28/99 20:26:58 EST

Dear Mr. Lasalander, I was diagnosed with chronic lyme disease in 1991. I was doing okay, with only mild symptoms, until I was bitten again in 1994. Then, my chief complaint became tooth pain and pain in one small part of my upper mandible. I saw dentists and then lived with the pain for four years more. This past year, all heck broke lose with my health and I began showing classic symptoms of lyme, so much that my GP and neurologist both bet I had Lyme without even any positive blood tests. I wasn't convinced, though, because the first time I had Lyme, my symptoms were different from this second time. Finally I had a spinaltap and the results were also negative through the regular lab, but positive through the research lab which my dr had access to. I was also tested for ehrlichia and babesia and have both. Last June, my condition was so bad that many parts of my body were numb and my brain was mush. I was like an alzheimer's patient. I would watch TV all day and not think there was anything wrong with it. I made mistakes with the simplest tasks and got lost five minutes away from my house. I would watch my daughter eat her breakfast and then ask her if she had eaten breakfast. I started rocephin, 2 grams per day and stayed on that for nine weeks. Then, I went on oral doxycycline, 400 mg per day. My doctor ordered a peak and trough test and my levels weren't high enough and ordered 600mg per day. Now I'm also taking flagyl, 1500mg per day. My doctor said that I would be "Herx-ing" every day on the flagyl, but he also said that a small percentage of patients get completely cured on it. I feel lousy every day, but have had little windows of feeling better, my old strong self. The improvements are not outweighed by the symptoms I still have, but so far, I am much clearer-headed, TV is boring, thank heaven, and I have less fevers and lower temperatures. I had been running constant fevers for seven months. That spot in my upper mandible only hurts occaisionally, now, which is great, in comparison to how it used to be. When I started my IV Rocephin, I thought I was going to be cured in six weeks. I know now that I will have to be on antibiotics for much longer. I am lucky to have a doctor who understands lyme and who is treating this aggressively. I believe I will stay on antibiotics until I have a full month free of symptoms. Lyme Disease is not the first disease which ever existed which can require long term antibiotic treatment, so I don't see this as ridiculous, but as logically necessary. As long as I see improvement, which I monitor, by writing daily symptoms (or lack of),I will continue antibiotics. Doctors who say this disease is easy to diagnose and treat and cure are so mistaken. Between my own personal experience, and that of friends and family members who have lyme, it is the opposite - difficult, difficult, difficult. I hope that the medical profession, who I thought takes an oath to help people, will realize the seriousness of this disease and the need for rigorous treatments which, though harsh and hard to take, are Lyme sufferers only hope. Thank you.
Eva <artistemhgd@AOL.com>
- 11/27/99 01:40:12 EST

Dear Mr. Lasalandra, I live in Texas. Many doctors here believe that we do not have Lyme Disease in Texas even though there is information available to the contrary. My son has been very ill with Lyme Disease for several years. He is only 10 years old and has experienced things that have broken my heart. I had a bull's eye rash in January 1995 and was diagnosed and treated with the standard short course of antibiotics. I thought I was over it because the doctor said that I should be. I never realized that the migraines I because experiencing on an almost daily basis in April of that same year were caused by the Lyme Disease. Now after over a year of treatment I am no longer having migraines. My son had a very similar looking rash six months after mine and I took him to his pedicatrician. She diagnosed local reaction to an insect bite and he got no medication. His health deteriorated slowly until March of 1997 when he became ill and has not been well since. He has been treated for two years now and just suffered a relapse because he had finally begun taking only oral medications and those apparently were not strong enough for him. I really wish there was someone who could come and witness his life as it is today. I dare anyone to tell me he is cured. He continues to respond to antibiotics which is an indication of an ongoing infection. Because of our experiences I have become very active in Texas. I have started a group called the Texas Lyme Coalition and we are working with the Texas Legislature. The Texas Senate is going to conduct an interim study which will begin right after Christmas to look into the problems people with Lyme disease are experiencing in Texas. There will be several hearings around the state. We have a Senator who has suffered with Lyme disease for several years and who attributes his serious health problems to Lyme. The teaching of Alan Steere have caused unbelievable suffering all over this country. The numbers reported in Texas are very low. I do not believe they can be accurate when everyone I talk to knows someone with Lyme Disease. I appreciate your article on the Lyme protest. Lisa P. Johnson in Cedar Park, TX
Lisa P. Johnson <lisa@txlyme.org>
- 11/26/99 16:28:36 EST

Thank you! I had sent an earlier memo regarding your artical, however it did not appear, thus this one. As a Lyme Pt. since 1987, and founder of the Lyme Borrelia Out-Reach Foundation circa 1987 I have had the opportunity to reac some 125 million people world wide as to what this disease is doing. In the past 12 years I have personally interviewed no less than 10,000 pts. Their stories all the same, misery, financial, emotional,and mental horror. I just returned from Europe a few weeks ago, once again meeting with many there. I had lectured in Graz Austria as a guest of Dr. Robert Gasser MD, PH.d at the Dept of medicine a feww years back and then on to Australia three years ago. The same holds true there, pain and suffering. With the emergence of Ehrlichiosis and Babesiosis and various viral pathogebns, all I can say at this point in time, in this unfolding drama is : Please keep telling it like it is. I work with Lyme Pts. seven days a week, childen are being robbed of their childhood, the middle age, robbed of their productivity and the older generation being robbed of their golden years! May God bless you in your endeavors , keep telling it like it is and Lyme Patients, we are legion, continue to speak out against the evil that attacks us. Truth shall prevail. Stephen
Stephen J. Nostrom R.N. <Borrelias>
- 11/25/99 12:51:19 EST

Dear Mr. Lasalandra, Thank you for your article on the Lyme protest. I had chronic Lyme disease for two years before doctors could figure out what was wrong with me. I received long-term antibiotic treatment from a Lyme-literate physician, and have been well for about 6 years now. My mother also suffered terribly for many years and is doing much better after long-term treatment.
Tami Sutherland <suther18@pilot.msu.edu>
- 11/25/99 01:34:36 EST

Dear Mr. Lasalandra, I am a 43 year old female with 2 college degrees. It takes much effort for me to compose a letter because I have late-stage Lyme Disease. I removed an embedded deer tick in January, 1989, after deer hunting on the King Ranch in S. Texas. My hunting partner was hospitalized a few weeks later with a diagnosis of acute Lyme disease. despite these facts, I was misdiagnosed for 7 years. I had many diagnoses: Meniere's, Chronic Fatique Syndrome, Fibromyalgia, Toxic Encephalopathy, and MS, and of course, psychosomatic. I did ask several about Lyme, but it was always dismissed. While the doctors wrote up their opinions, my life was slowly destroyed. I have now been 90% bedridden for 7 years, have lost my home, career, friends and hobbies. I have brain damage, a seizure disorder, heart block, pain, constant pressure and dizziness in my head, and much more. But what does Alan Steere care; it's not his life, he's not waking up to this nightmare every day. Those that want to keep the epidemic of Lyme hidden cannot succeed forever because our numbers are growing larger every day. Today another Lyme doctor had his license revoked for treating Lyme. He was tried in front of the NY Office of Professional Medical Conduct on the basis of one doctors testimony that Lyme is always cured in 3 weeks. This same doctor has numerous published papers in prestigious journals that directly contradict his own testimony. There is a movement to destroy the leading Lyme doctors in this country that don't tow the Steere line. Other Lyme doctors are now afraid to testify on their behalf because it marks them for reprisal, puts them on the list. No amount of clinical evidence to the contray seems to matter. I hope the 2 (only 2) Lyme doctors in Texas are allowed to continue practicing--they have had some hassling in the past themselves. Living with this disease is living hell. Insult is added to injury by public misunderstanding and political maneuvering. By the way, the CDC just replied to my story by telling me there is no Lyme in S. Texas--quess I'm not sick, after all! Sincerely, Cary in Austin, TX
Cary <CaryKatz@aol.com>
- 11/24/99 21:36:50 EST

Dear Mr. Lasalandra, Thank you again for the even handed article on Alan Steere and his undeserved award from NIH. Your article cannot help but to inform others that there just might be more to Lyme Disease than they've been led to believe by a relatively powerful but non patient oriented group of physicians and others involved in the Lyme Conspiracy ongoing all these years and testimony given before Congress in 1993. Would you please consider writing an article on what you may find when you investigate the number of doctors nationwide who have been set on by their peers, state medical boards, and other similar authorities, had their licenses revoked, suspended, or restricted. The very compassionate doctors who treat the growing Lyme Community at large, who work with Lyme patients on a daily basis are being persecuted by these authorities to keep them from treating those of us who have late stage Lyme Disease because we've never been diagnosed and or treated till late in life, or have been treated with minimal antibiotics as per the very harmful Steere medical guidelines, which anyone with any degree of basic knowledge knows is wrong. Too many years Baby Boomers and those who came after have been fed antibiotics through foodstuffs by the cattle, swine, poultry, and dairy farm industries, because they learned it cut down on loss and increased profits. Causing bacterial infections, some, to become resistant to antibiotics. It is not morally right to persecute these doctors who are only helping us in the only possible way they can until someone discovers a cure for Lyme Disease. The rich insurance companies don't want to pay for the antibiotc treatments and infusions necessary when Lyme Disease has not been caught in time to cure right after the tick bite. Instead they deny us treatment with antibiotics on the basis that treatment with antibiotics for a bacterial infection is "experimental medicine". The longer each of us goes without proper treatment with antibiotics the greater chance for our immune systems to fail completely, leavins us open for opportunistic diseases to take hold. I am willing to bet, the insurance companies (some not all) are betting on this then they won't have to worry about treating us too long if we then contract a terminal illness. Please help bring the persecution in the United States Of America, of our compassionate physicians treating Lyme Disease patients to light. Thank you.
Sandra Smith
- 11/24/99 14:22:46 EST

Thank you Dr Steere for ruining my life.I am 32 3x positive western blot in Mississippi, but according to him I am supposed to be cured. Well i'm not and have been fighting the so called "cured" state for a year now.I just want my kids to know that this is truly a fair government and doctors really do HELP.
Teresa <moongrlxx@aol.com>
- 11/23/99 12:01:59 EST

Dear Michael, I am a TV executive who contracted Lyme Disease in 1996. I wanted to thank you for your article, and point out to you, from one professional to another, that you could be the next recipient of the Pulitzer Prize if you have the courage and wisdom to blow open the disgraceful methods used by Dr's such as Allen Steere that are not only counterproductive to patients, but have had direct negative influence in tragic losses of life, career and health. I have access to information that you would find startling at best and downright scary. Dr. Steere is only the most visible of the doctors and university-based researchers who have colluded with insurance companies to prevent patients from getting the care they desperately need. I went from six figures to six doctors in six days. I'm still fighting Lyme three years later. The toll it has taken is unestimable, and Dr. Steere's archaic (and, in my opinion, evil) positions and testimony on behalf of insurance companies and against fine, informed doctors has resulted in an environment where we, the rational patients who led active lives until we got this disease, must fight not only the disease itself but the brutal political fallout from the corrupt and fear-based practices of Steere and others like him. Where the hell is Dan Rather when you need him? Is there even a little of Dan Rather in you, Michael? I hope so. My email is pjarvis1@earthlink.net if you wish to continue a dialogue. Thank you.
Patrick Jarvis <pjarvis1@earthlink.net>
- 11/22/99 18:34:44 EST

Dear Mr. Lasalandra, I do not have the eloquence to show you the devastation of chronic Lyme or how long and how deadly serious the story of Lyme has been going on. As you will see below, the senate has been aware of this since 1993. I hope the enclosed information will help you in an investigation of how Allen Steere, MD, did not deserve to receive ANY award much less one from the NIH for an Astute Cinician. I attended the protest because I was/am appalled to see him honored. Both my husband and I have chronic, late stage Lyme disease and our lives have been ruined thanks to Allen Steere, MD http://www.lymetruth.org dodge@lymetruth.org LYMETRUTH Issue_#_020--July-August, 1999 Unless otherwise noted, all letters, comments, and articles including book reviews are the work of Douglas S. Dodge. They may be disseminated in any manner, but not modified or abridged.) INDEX I. PROPOSAL FOR A NATIONAL LYME DISEASE TASK FORCE ### I. Proposal to Senator Lieberman, with Enclosures ### August 27, 1999 The Honorable Joseph Lieberman One State Street-Suite 1420 Hartford, CT 06103 Proposal For A National Lyme Disease Task Force Dear Senator Lieberman: Promises and pledges made at the 1993 U.S. Senate Hearing on Lyme Disease have not been kept. Disinformation and cover-up from Washington and several academies still shatter the quality of life for millions who will go to their deaths not knowing that they were hit by the fastest-growing infectious disease in this country. The Centers for Disease Control and Prevention admits to tallying and reporting perhaps only 10 percent of actual cases of Lyme disease. It is hard to believe that since 1883, when Lyme disease was first recognized, no public or private agency has come up with dependable tests, or shown much concern about a cure for this plague. Many of us in the camp for truth beg you to form a national task force to address these issues. It may require only "a negligible amount of money," according to Senator Metzenbaum in 1993, "absolute pittances of dollars as far as money in this town is oncerned." It may even turn out that the taxpayer has already paid for research that was hidden or neglected by self-serving scientists. Too many seemingly loyal public servants and academicians are engaged in discrediting our side: many have interests in research grants, patents, and consultants' fees that lead them to disinform, to lie, to break their vows to heal. Some of them won't identify themselves. Most are driven by arrogance, guilt, greed, and only perhaps by ignorance. We are asking you to execute the action sworn to by Senators Dodd, Kennedy and Metzenbaum, plus others present at the 1993 hearing. I, and hundreds, if not thousands, of concerned people out here can propose members for your team. They will include Connecticut Attorney General Richard Blumenthal, who engineered the first legislation of health insurance for Connecticut Lyme disease patients, that will show the way to more comprehensive treatment benefits for millions nationwide. Other soldiers will be named: physicians and patients, scholars and scientists from around the world, members of the Armed Forces, investigative reporters, and media bigwigs. It shouldn't take your office more than an hour to riffle through the enclosures, pull up a few issues of www.lymetruth.org, and feel the pulse in the newsgroup sci.med.diseases.lyme, to see how much we need you to lead us. Respectfully, Douglas S. Dodge Encl: Curriculum Vitae "A Brief History of Lyme Disease," and "Lyme Disease Probably Is Curable," second editions of those originally published in Issues #1 and #8 (March and September 1998) of www.lymetruth.org cc: Richard Blumenthal *** Douglas S. Dodge Curriculum Vitae b. Christiania, Norway, 1920. Kent School, 1938. Clifton College, England, 1939. Yale University, B.A. 1943. Destroyers, Pacific, 1943-46 m. Christine F. Henriques companion: Professor Blitzen of Pow Wow Resident Director, Bertrand Freres, Ltd. (Essential Oils), Anglo-French subsidiary of Unilever U.K. Retired. UC, AOS, CYC, MFGP Research collaborator in the Entomology Division of the Peabody Museum of Yale University. Private pilot, single engine, land, instruments. Hybridizer in the genus Phalaenopsis Publications: NEWS of the Lepidopterists' Society,(Jan./Feb. 1985): "The Monofilament Method (And Other Aids to Mounting and Spreading Lepidoptera)" The Astrograph, vol.7, no.3. (December 1975): "M8 and M20 on 103a-F film (yellow filter)" Gray's Sporting Journal, Summer 1988: "South of No Man's Land" (under the pen name of Bruce Croghan) Verbatim, (Autumn 1992): "French Spoonerisms" New York Times Letters, February 10,1993: "For the Depressed, It Isn't All in the Mind" New York Times OP-ED, February 20, 1993: "Our Breast Cancer" New York Times Letters, July 12, 1994: "How Can We Instill Democracy in Haiti?" Various Forum\Opinion pieces and Letters to Editors on Lyme disease: Vineyard Gazette, New Haven Register, New York Times, Washington Post, Boston Globe, TIME magazine, New York magazine, Yale Alumni Magazine, Connecticut magazine, USA Today, Prevention magazine; 1992 through 1999. Awaiting publication: Passports to a Second Youth The Common Cold of Mental Illness Star Hunting in Winter Skies Star Hunting in the Summer Milky Way Why All Living Things Have Latin Names The Joy of Motoring
Lymefightr <Lymefightr@aol.com>
- 11/22/99 10:07:05 EST

thank you michael, Well it has been since 92 that my husband and I have been dealing with LYME, like most at that time he was treated per/steere protocal 30 days doxy. At that time it seemed all was well. Suprise/ a year later he presented with symptoms of fatigue, aching joints, motor problems, passing out, low heart rate/35-45 bpm, low blood pressure well you get the picture. He was placed in the hospital for monitoring of heart. after 5 days he was released. things continued to get worse. the color in his face was gray, a symptoms all lymies can identify with. he seemed to be disoriented had trouble talking and so on . I was concerned and started asking questions, only to be put off. After visits to 5 different hospitals, some very well known hospitals, we were basically told "there is something wrong with your husband but it is something new or not identified as yet". yeah right. After months of traveling to those hospitals my mother found an article in a "woman's day magazine" that told of lyme. She dropped what she was doing and came over to our house. Our search began that day. I went to the library and checked out books on lyme. sure enough right there in those books was the story that fit my husband. after a trip back to our local doctor with the information he agreed to treat him, 30 days IV rocephin. that completed we felt a great sense of relief because he had improved. Surprise again/ he relapsed yet again about a year later. Our local doctor was at least honest with us saying he would like us to find someone who knows what they are doing with the LYME. then he could help treat him with advice from another dr. well we found a great doctor finally in Feb. of 96. He went under treatment at that time but because of prior steroid use from Johns Hopkins he is chronic late stage. He has applied for disablity and been denied and we are now in the appeals council awaiting an answer. Meanwhile in 97 I removed a tick from my abd. I watched and waited and finally showed symptoms of flu like illness, joints aching, sore throats, then a 7 inch bulls eye rash I went straight to our Lyme literate dr. and was put on meds. i have had a positive Western Blot. So here we both are lymies from West Virginia where there is no lyme according to the Infectious Disease Docs. here. We live very close to the PA border where lyme is some of the worst in the country. I guess those ticks need to learn how to read signs. Some of this has seeemed like a dream but then reality sets in and you realize things could be worse. I would like to thank all the supporter of the message boards for posting and e-mails i have received . they have been most helpful. This whole dialogue needs to be laid on the presidents desk. then an arrest warrant needs to be issued for Steere for endangering our lives. Please keep fighting this illness with everything we have mentally, morally and finacially. thank you again Michael and may we all be cured some day soon.
k.simpson <pansyrip@aol.com>
- 11/22/99 04:16:33 EST

My husband and I are both Lyme patients. We live in eastern PA where "Lyme isn't a problem." HA That's why there are 5 Lyme suffers on just two blocks of my street. I have have had slowly worsening neurological symptoms since the early 90s. I've been to the "average" 5 doctors before being diagnosed. BUT the thing is, like so many of the stories I've read in this guestbook, I diagnosed myself using the internet....then began the search for a Lyme literate doctor. I wound up traveling 3 hours one way to Lyme Disease Center in southern NJ. I had even been to a major research hospital in MD where I was told I had peripheral neuropathy for the second time...and was told that Lyme was one the things NOT causing my problems. After all, I had a negative blood test! I'm not going to drag this on with more of my story. The point I think this overwhelming response to you article points out is that the word has to be gotten out. There are so many victims out here whose lives have been DRAMATICALLY altered for the worse by this disease. It is scary to think how many more are undiagnosed or misdiagnosed. Like the previous letter, I too watched the CNN report on Legionaires Disease. Not to minimize the suffering caused by Legionaires or the loss of the families mentioned. But there are so few affected by it compared to Lyme. The annual total of reported cases increased 25-fold between 1982 and 1997, with a cumulative total of more than 103,000 cases reported during that period. More than 12,500 cases reported by 48 states to CDC in 1997. This is in the US alone. It also occurs in Europe and Asia. Lyme disease, a major public health problem rising in 46 states is more common than mumps, measles or meningitis. In fact, it is considered one of the four largest epidemics in the world: Lyme Disease, AIDS virus, yeast infection and the common cold. Lyme disease is 2nd only to AIDS in growth rate. You have got to help get national attention such as CNN or other major networks. Get your article and the extent of the response put out as a national newspaper article. Contact the NIH. The Federal government. Help us. Cathy
Cathy <cjdeschuhotmail.com>
- 11/22/99 01:07:22 EST

Hello Mr. Lasalandra- I would like to thank you for your article. My wife was diagnosed a year ago with Lyme disease and I appreciate your interest. I agree with you on every point you make and found it interesting to see what you chose to print of the 45 minutes of Dr. Steere's presentation (my wife and I were also at his lecture). CNN just did a story on Legionaires Disease (as I sat to write this). They are finding it in our hospital's water supply systems (11 out of 12 recently in San Antonio). Turns out there is no public law or mandate that hospitals test their water. Left as an option at $12,000/yr the testing doesn't get done. They find out the system is contaminated when people get sick and quite possibly die (three just recently died here in Maryland)! Dr. Richard Besser of the CDC stated that the CDC did not want to mandate the testing because they were afraid that the doctors would stop looking for the illness in their patients. They didn't want the hospitals to incure additional costs to decontaminate water, when the only people that are considered at high risk to get infected are those with a reduced immune system. Instead they have special precautions that they take for those patients that "require it". My wife stated that it was so sad that a disease that it so easily tested for and is curable still infects people. Especially when it is commonly accepted that the bacteria will be routinely found in the hospitals' water supply! (For that matter it is likely that it will be found in any large facility's water system!) Unfortunately the same logic is being applied to Lyme Disease. Dr. Steere says that once it gets into your central nervous system its difficult to eradicate. Once that happens, you're going to be sick for a very long time. One of Dr. Steere's paitents showed signs of the bacteria 4 years after treatment first started. Unlike Legionaires Disease, Lyme is difficult to test for and difficult to treat, especially if you don't start treatment right away. Dr. Steere told me that they can only report what they find. "How can I test to see if this bacteria has gotten to the brain?" he asked me. He also told me that some of his patients continued to show the non-arthritic symptoms like fatigue and forgetfulness after the study was concluded. In other words they didn't all recover completely, but the arthritis eventually went away and they couldn't find the bacteria in the synovial fluid any longer, which triggered the end of their treatment for Arthritic Lyme. . This fact was, and continues to be missed in the reporting. My wife has been on antibiotic therapy for a year and hasn't gotten better. The system to deal with infectious disease needs a tune-up. The way to recovery is through public awareness. Thanks again. -Ant
Anthony Ferraro <ferraroa@us.hsanet.net>
- 11/21/99 22:51:25 EST

THE NIH, THE CDC, AND ME: '"The U.S. does not have a biological warfare program. Period."' -- Roger Breeze, Director of Plum Island from 1987 to 1995 in a statement to the audience at the public hearing in Waterford, CT Nov 18, 1999. Which is to say, there is no "Biological Warfare Program", but no doubt, there is an agency that considers bio offensive and defensive strategies. PLUM ISLAND DOING RESEARCH ONLY ON ANIMAL VIRUSES, RESIDENTS TOLD AT HEARING. Perhaps they assume the general public doesn't know viruses jump species. Animal viruses have to be studied. And as long as the govt already has the facility, they should go ahead and work there. And they should lie to the public about it. What choice do they have. What choice do the citizens of this country have. None, really. We have seen individuals exercise an abuse of biotechnology on populations within populations (Japan subway and Saran, the recent availability of Anthrax in the US scare). It isn't possible that the US govt does not have a program for dealing with abuse of deadly chemicals and biologicals on multiple levels. What I'm not sure of is whether they have a program for dealing with biotech business/ insurance business abuses that are not outwardly agressive. Technology and international business practices exceed the ablity of our government to identify abuses of the inherent power of these. Today we have some of this technology quasi-managed by government officials whose friends own biotechnology companies. And we have businesses such as insurance companies managing the interpretation of technology. It may be time to consider inviting our government to be less reactive and more proactive regarding identifying sources of abuse in the biotech industry. They could start by discouraging formal contracts between insurance companies and university hospitals. And universities from encouraging researchers to seek NIH funding to support their private biotech enterprises, such as SUNY. Another example would be LifeSpan and the Yale/Tufts/NEMC Chronic Lyme Study. What possible motivation would there be for LifeSpan to become involved in the Chronic Lyme Study except to use the information to their advantage? If insurance companies were to invest in any human health research would it not be in hopes of discovering ways to cut costs? There are two ways to cut costs: Minimize disease states and reclassify diseases such that they need the least expensive treatment. It should be no surprize that insurance companies are closely aligned with people who perpetrate the deception that spirochetal infections are self-limiting or become auto-immune states. The government allows this to happen by allowing those closely aligned with big business/medical biotech business to manage the NIH. Our system of government was based on the need to separate the power of the church from the state, but our needs have changed. Our personal freedoms are now threatened by the union of big business (like health insurance) and science. When the NIH chooses to honor Allen Steere of Tufts (Lifespan) for his work with Lyme disease we can only see it as an attempt to spin the media such that big business and biotechnology can continue to abuse the ignorance of the citizenry of this country. The NIH condones this abuse. It's time to shake down the NIH. They've become too powerful in their alignment with big business.
Kathleen M. Dickson <kathleen.dickson@snet.net>
- 11/21/99 08:42:25 EST

I would first like to thank you for providing much needed media attention to this illness. My history with Lyme,like so many others posted here, proves that this disease is anything BUT easily diagnosed and easily treated. In summary, from July 1996 to March 1997 I saw 5 internists, 2 cardiologists, 1 pulmonary specialist ,1 infectious disease specialist and 5 neurologists. All of these were supposed 'top' doctors from New York City teaching hospitals. The difficulty in getting an explanation for my ever growing list of symptoms is best exemplified when I was given a diagnosis of MS in the morning by one doctor and then advised to seek psychiatric help, in the afternoon, by a different neurologist. In terms of being easily treated,I have been under treatment since March of 1997 and am still not back to normal. Having Lyme is like being sentenced to a prison term of unspecified duration. I believe a great disservice has been done to those of us afflicted with Lyme by honoring Dr. Steere. I also question how many people suffer with this illness but receive either no or a wrong diagnosis because of the 'theories' Dr Steere espouses to the medical community. How many more people need to become ill before the severity of this disease if recognized?
judy <nnysmj@excite.com>
USA - 11/21/99 07:03:14 EST

Michael, thanks for writing on the Lyme Disease protest. You see, I would not be in this world if I would not have been treated with the "overdiagnosis and overtreatment protocol". Two years of madness and no end in sight. Veronica Parcan
Veronica Parcan <vierkapar@erols.com>
- 11/20/99 18:24:14 EST

Is this where I put my story? I was diagnosed with LD in 1988. Let me go backwards and then I'll try to go forward. A year before in 1987 I had optic neuritis, lost the vision in my right eye for a few days, was in the hospital, had a cat scan and had spinal tap that was negative for MS, and had a group of neurologist standing around my bed saying they would like to diagnos MS, but they couldn't because only one lesion and negative spinal tap, but they felt sure it was MS. I left the hospital, decided to stay away from MD's for a while, and did my own amateur research into MS. What I founs was that nobody knew what MS was. It seemed mainly based on descriptions. I wasn't going to let anyone pidgeon-hole me with no etiology. I recognize that I'm the hero in my own drama. I think the people that have LD are all heroes. This is a hellacious(sp) thing to go through especially without the suppoet of the medical community. A year later because of reading abou LD and because of the encouragement of a chiropractor, I began looking for an MD to give me the LD blood test. I heard many times we don't have it around here. This was Atlanta GA. One doctor gave me an arthritis scan. (These are two important misconceptions about LD--that it only exists in endemic areas. It is a pandemic, all over the world. And that it has primarily an arthritis presentation. As you can see from the stories, chronic LD has many faces.) Fortunately, I didn't fall victim to the other primary misconception--that it is easily diagnosed with a blood test. (It only shows up on a small % of blood tests.) My doc gave me an elysa, which came back highly positive. She tested again and crosschecked me for syphillis. At the same time that I had the Elysa I also had an MRI, ehich came back consistent with MS. It is known now that MS and LD look the same on an MRI. My doc prescribed 2 weeks of iv rocephin. Emory was doing MRI's for free, because they wanted to see what LD looked like. On my first MRI after the abx, my MRI came back completely clear. Oh happy days. Some troublesome symptoms went away too. After a few months the symptoms came back along with the plaqueing on my MRI. My doc prescribed a few more wks. of iv. Then my doc told me she was following the protocol of the country's leading expert on LD and I had had enough abx to cure LD. She thought I had LD coincidental with MS. I knew there wasn't any cincidence about it. There I go being my own hero-detective again. I'm sure the expert my doc was referring to was Steere. I'm going to finish up. I'm getting tired. If you've gotten this far, I suspect you are too. Going backwards maybe 6 or 7 years or more; my husband and I were on the panhandle of FL riding our bikes on the beach and were playing in a area where trees were growing out of the ocean. We were driving home the next day and I notied or was alarmed by a big red bulls-eye rash on my thigh. I couldn't find it in a medical book. Doc's wouldn't have known what it was then anyway (early '80's). I didn't associat the awful summer flu I got later with the rash. I am resisting writing about other times I could have been infected. Dr Sam Donta (head of infectious disease at Boston U Hospital and provider of support for many in this country with chronic LD) says that he sees the bulls eye rash mainly with reinfections. I suspect I was infected at least once before. Going forward. I found the newsgroup on LD about 6 0r 7 yearafter my last treatment in Atlanta, and began many years of oral abx and some more iv. I don't think this has helped. It is probably too late for me. I talked to my doctor in Atlanta a few years ago. She said, "If we had known back then whar is coming out now, I would have treated you for much longer." This was heartening in a bittersweet way. Janie
Janie Westmoreland Horn <JRWest47@aol.com>
- 11/20/99 17:46:10 EST

My family has beenbeset by lyme disease for about 20 years. We live a good part of the year in Northern Westchester where 80% of the ticks carry lyme and other associated diseases. Because my doctor's didn't know about tick born illnesses other than those carried by dogs, I was first diagnosed with,Fibromyalgia, which has many of the same symptoms and meanwhile my lyme went undiagnosed and untreated and became more entrenched. When I knew more about lyme I had to fight with my infectious disease specialist to treat me for "non-specific" lyme and that would only be for several weeks at a time.. It is only in the last year that I have I have been treated more aggressively with six months on antibiotics that I have felf the return of some my energy to live and work. My husband was hospitalized with lyme and lyme meningitis is northern westchester in 1992 and with Lyme and Lyme meningo-encephalitis in 1995, and almost died both times. He has had a loss of cognititive functions. Both times after his initial recovery we went to neurologists and infectious disese specialists so that he could have follow up treatment. We were told that this was not necessary. Now we know better. ...I could go on and on but it is truly too painful to go on about the losses to quality of life that my entire family has sufferred due to bad tests, undertreatment, and inadequate treatment for lyme.
Judy <Katonah2@aol.com>
- 11/20/99 15:58:50 EST

thank you. Getting well and staying well after diagnosis is so difficult with this disease. Very hard going with very little help.
susan mcgown <robrunner@aol.com>
- 11/20/99 15:52:55 EST

I am sure that my situation is all too familiar, so I won't bore you with the specifics. Suffice it to say, that I had the bullseye rash, but not knowing the cause I didn't seek treatment. Years later, I exhibited symptoms ranging from parathesia to vertigo. After ten various doctors, including 2 neuros, I turned to the internet for help. Both neuros refused to test me for Lyme or provide antibiotic treatment. I paid out of pocket for a specialist, who put me on doxycycline for 7 months. I am into month number 5 of treatment, and all my symptoms have dissappeared. I only hope I don't relapse...
L. <tcljgr@aol.com>
- 11/20/99 00:31:28 EST

Dear Mr. Lasalandra, I hate Lyme.I have had it since I was 12 and now I am 15.I can't play football or basketball because my knees hurt so bad I can't run. I want to be well so my mom said to write to you to thank you for telling people how this being sick stinks. I want to be well and to play ball again. I hate LYme and I hate the doctor who didn't treat me right. Maybe he will get Lyme. Dan
Dan Melillo <danmelillo@hotmail.com>
- 11/19/99 23:11:12 EST

Dear Mr. Lasalandra, My mom showed me your article and I thank you for writing it. I am 19, have had Lyme for 3 years, spent most of my Junior year at home and am still struggling daily with chronic Lyme. My life is different then my friends here at college. I don't have the energy and sharpness I once had. My whole family has changed as we are all sick. If the doctors' had caught our problems early we may have had a chance. Now we just seek relief from the chronic pain and cognitive problems we face daily. My mom said you printed the truth. Ask the right questions, don't be afraid to expose the lies. Many lives could be changed by you. Christiana Melillo
Christie Melillo <melillcj@jmu.edu>
- 11/19/99 23:08:06 EST

Dear Mr. Lasalandra, I am a 20 year old Lyme patient whose life has been changed forever. Once a bright and promising world was open to me, now, due to misdiagnosis and treatment I can not even read. I must dictate my ideas to others who type them for me, I must listen to my textbooks on tape. Even then, I can not learn. What does my future hold for me? 4 weeks of antibiotics were supposed to cure me? Why doesn't Dr. Steere come live in MY body and mind now. He would then know how wrong he is. We, the Lyme community, need public awareness and proper treatment from the medical profession. Please continue to help us by printing the truth. Mike Melillo
Mike Melillo <mmelillo@excite.com>
- 11/19/99 23:03:34 EST

Thank you Michael: I want to thank you for your article as it showed the politics that have been responsible for many very ill people because we are being refused adequate medical treatment. I have had LD for over 10 years. I did not get a proper diagnosis until 1993 and I am now unable to hold a job and can barely keep my home and family in order. We so appreciate you opening up this subject to the public and hope you will continue to look for the truth. It is out there! Sharon Melillo
Sharon Melillo <melillo1@rcn.com>
- 11/19/99 22:58:59 EST

Dear Michael, Thank you for your recent Article on Lyme disease and Dr. Steere. I have had Lyme disease for over 3 years because, although I saw the tick and received treatment within 2 weeks, the treatment was not enough - either in the dosage or length of antibiotic treatment. And this happened because Dr. Steere's propoganda has too many good doctors either confused about appropriate treatment, or afraid to prescribe appropriate treatment for their patients. Early, aggressive treatment can work - my husband has had two deer tick bites over the past 3 years, and both times I was able to get him on Doxycycline 300mg/day for 6 weeks. To date, he shows no symptoms of having Lyme. But, for those of us who didn't have someone who knew the "right" thing to do and have doctors who would listen to reason, the consequence is chronic Lyme and a loss of our lives as we knew them. If Dr. Steere is so certain that Lyme is cured after one month of antibiotics, WHY are we still so ill, and WHAT do we have, and HOW should it be treated? Funny that I haven't seen any such information from Steere and his pals. We are NOT antibiotic seeking hypochondriacs - we are genuinely sick, and we don't want to be - we want to be well and we want our lives back. The only true statement that Steere made in this article is that Lyme disease has become a political, not medical problem, and he is the cause of this tragedy. Just as with Agent Orange, Aids, and Gulf War Syndrome, in the beginning, no one believed that these people had legitimate illnessess, but time and the heroic efforts of the victims of these illnesses eventually proved their existence. I believe that the same will happen for us - the victims of Lyme disease - but how many lives have to be destroyed and lost before that happens? Well, the first step towards that goal is to rid the medical profession of doctors (and it pains me to refer to them as doctors) like Steere, and others like him, who would sit back and see us suffer so that they can collect the big dollars from insurance companies by denying the existence of chronic Lyme, thus allowing them to deny coverage for appropriate medical treatment for this disease. Ours is a difficult and ongoing battle and, medically and politically, and I thank you again - for validating our existence and for giving us a voice. Patty
Patty <pattymcd@olg.com>
- 11/19/99 21:02:54 EST

Mr. Lasalandra, I would like to bring to your attention the fact that Dr. Steere had nothing to with the discovery of Lyme disease. He happened to be in the wrong place at the wrong time, much to the detriment of Lyme disease patients. The disease has been recognized in Europe for over 100 years by the names Acrodermatitis Chronica Atrophicans, Bannwarth's Syndrome, and Garin-Bujadoux . Lyme disease was first recognized, although the cause was unknown , in 1883 by a German physician named Alfred Buchwald. [1] In 1895 the first U.S. cases of ACA or late stage Lyme disease were described by an American dermatologist. [2] In 1909 a doctor in Sweden described the rash associated with Lyme disease, erythema chronicum migrans, now called erythema migrans or EM. He connected the rash to the bite of Ixodes tick. [3] In 1922 " French physicians Charles Gariin and Charles Bujadoux describe an association between EM and a painful neurologic condition called meminingradiculoneuritis (meningitis and severe radiating nerve pain and paralysis of the deltoid muscle, now known to be a cranial nerve palsy)." [4,5] In 1945 The Mayo Clincic followed cases of ACA or late stage Lyme disease. Although some of the patients had arthralgia, arthritis, and heart problems [all well known symptoms of late stage Lyme] before they came down with ACA the researchers concluded incorrectly that the symptoms were unrelated to the ACA.[6,7] The year of 1949 is especially significant. Sven Hellerstrom of the Karolinska Institute in Sweden presented all the known information on what has become know as Lyme disease in this country. He was literally laughed out of the room at the the Southern Medical Association of Ohio. He reported that antibiotics were sucessful in treating the disease and was ignored.[8] Another physician by the name of Niels Thyresson of Stockholm reported on 57 patients with, what is now known as Lyme disease. These patients improved with antibiotic treatment.. Some of their symptoms disappeared , while others improved . [9] In 1955 the first proof that this bull's eye rash was an infectious disease. [10] In 1956 a detailed description of what is now known as Lyme disease was "provided in a in a medical textbook in the United States, making information about this disease accessible to the United States medical community for the first time." [11,12]. In 1963 a patient with ACA, or late stage Lyme disease, with a positive rheumatoid test was described.[13] In 1970, Rudolph Scrimenti, a dermatologist connected to the Department of Dermatology at the Medical College of Wisconsin , as well as an expert in skin infections of Lyme disease described a case of Lyme disease from Wisconsin . He mentions the various symptoms connected to the disease and the use of antibiotic to treat it.[14] In 1975 patients with Lyme disease were found to have bone damage and radiating nerve pain once again showing the many systems involved in the disease. [15] In 1975, A Connecticut mother, Polly Murray, contacted Allen Steere at Yale. She was concerned about her children. They had been sick with various ailments since the 1960s. She thought the ailments could be connected to a tick. At one point in Mrs. Murray's search for the cause of her family's strange afflictions, a doctor had the audacity to say to her, "I suppose you think this is some new disease,..Why they might even call it Murray's disease."(page 86. The Widening Circle -A Lyme Disease Pioneer Tells Her Story by Polly Murray) In 1977 Allen Steere did a study of children with with Lyme disease. When the four children treated with shorterm antibiotics developed arthritis, Steere concluded that antibiotics did not work and treated the children with aspirin. In a follow up study "The researchers decide against treating the patients with antibiotics, despite citing numerous European studies attesting to their effectiveness and just one claiming they are of no value. Steroids and aspirin are used as treament." [16] therapy and the children, of course, continued to have symtoms. The researchers decided not to treat the patients with futher antibiotics and treated them with steroids and aspirin, drugs that suppress the immune system and allow bacterial infections to spread throughout the body.[17] In 1981 "Willy Burgdorfer, an entomologist at the Rocky Mountain Laboratories" discovered the spirochete that causes Lyme disease in a tick " collected by Edward Bosler of the New York State Department of Health . [18] Dr. Burgdorfer went on to become a founding member of the Lyme Disease Foundation.[18] Since the discovery of the spirochete that causes Lyme disease, a discovery that coincided with the goverments's decision to sell the patents on living organisms, a certain segment of scientists involved with Lyme disease research have gone out of their way to prevent the seriousness of the disease being presented to the public. These scientists are making money off the suffering of Lyme patients, They are involved with biotech companies that have financial interests in the treament of symptoms of Lyme disease and are not all interested in finding a cure, let alone a reliable test. Cured patients are of no use to these researchers and the biotech companies. Research funds dry up if a cure is found. Dr. Steere knows that Lyme disease not adequately treated returns to torment the person unlucky enough to contract i the disease another day. His knowledge of this is obvious in the Book The Medical Detectives by Bertron Rouche. The last chapter of the book, " The Foulest and Nastiest Creatures That Be", is about Lyme disease. There is case history of a patient in East Hampton in the summer of 1982. The patient descibes her nightmare encounter with this horrible disease. Her husband describes her condition and says at one point he thought she was dying. "..I suppose this sounds a bit silly,...But there was a time, when Priscilla was at her worst, when I had an awful thought: We had never talked about death as something that might happen to one of us. I realized that I didn't know if she wanted a burial or cremation....It gives you an idea of how sick I thought she was." The author, Bertron Rouech'e reports , "Dr. Grunwaldt told me that he had only seen one case of RMSF in his thirteen years of practice on Long Island, and only twenty cases of babesiosis. But he had seen and treated at least four hundred cases of Lyme disease." (1982) Earlier in the chapter Dr. Grunwaldt tells the author about an EM rash he saw on Shelter Island in 1975 and again in the summer of 1976. He talks about taking the trouble to search the literature- " most of the reports I found were Scandanavian,some of them going back to the nineteen twenties. I found a 1962 paper by three researchers at the university of Helsinki which discussed a possible relationship between Ixodes ticks and the erythema chronicum migrans that was then associated with meningitis. But you can't count on a rash as an infallible clue. For one thing, as we know now, it isn't always present. For another it only appears several days after the bite and the intial symptoms . In any event, I started treating my cases with antibiotics, and that seemed to do some good. I followed Steere's work as it was published, and that's when I realized that what I was seeing was his Lyme Disease. I remember a telephone conversation I had with Steere in 1978. He had decided that in certain cases Lyme disease was self-limiting---that it cured itself and after a while just vanished. That's true, of course ,in a way. It seems to go away, but it really just goes underground, and then emerges in a much more serious way. The late complications usually take one of three forms......arthritis.... neurological....The third form affects the heart. When Steere assured me that the disease was self-limiting, I stopped using antibiotics. But then he dug deeper and changed his mind. We now know that prompt treatment with a penicillin can GENERALLY prevent the later manifestations." "...The laboratory work--the most significant work---was done at the Rocky Mountain Laboratories, in Hamilton, Montana, by a team headed by Willy Burgdorferi.....As you know the cause of syphillis is also a spirochete. Not the same one...And untreatedsyphillis, like lyme disease, can later reappear, with very serious consequences. "The laboratory findings were published in Science and in the Journal of Clinical Investigation in 1982 and 1983. And that's about where we stand right now. We have the disease as an entity, we have the causative organism, and we have the vector---the tick.And we have an effective treatment. There are still some loose ends....." The chapter ends with an author's note " A report published in the June 14, 1990, issue of The New England Journal England of Medicine suggests that the avoidance of ticks or tick country may not be enough to avoid exposure to Lyme disease. Dr. Steven W. Luger.. offers both laboratory and anecdotal clinical evidence that biting flies--deerflies and horseflies ---- may carry the Borrelia burgdorferi spirochete and transmit it to human beings. He does,however offer a word of consolation:"In contrast to the painless bit of I. dammini, the bite of flies is painful and not likely to be overlooked." There is more than adequate proof that Lyme disease is not easily diagnosed, is rampant and spreading at an alarming rate, seronegative Lyme disease is a common problem and Lyme disease follows closely the course of it's fellow spirochetal disease, syphilis. If not treated properly the disease will return. The late stage of a spirochetal disease is not a pretty picture. the disease attacks the CNS. The patient, in particular , and society, in general, will suffer for years to come as a result of the criminal actions of these so called research scientists. We are facing another much larger Tuskegee Study and there will not be enough "I'm sorrys" to go around this time. Our insane asylums were filled with syphilis patients at the turn of the 19th century. I suggest you research the number of Lyme patients residing in prisons as we end the 20th century. Georgia Wissmiller My main source for the quotes and information in my letter is the book Everything You Need to Know About Lyme Disease by Karen Vanderhoof-Forschner. I have relied on the Appendix 1 on page 159 for a condensed version of the history of Lyme disease and a thorough bibliography referencing the information. 1. 1883 "German physcician Alfred Buchwald describes a degenerative skin condition lasting 16 years in one patient which he names diffuse idiopathic skin atrophy. This is the first record of what we know as acrodermatitis chronica atrophicans (ACA), which is a late Lyme disease skin condition......" "source: Buchwald 1883...... ...referenced in Weber/Burgdorfer (1993), chapter by Weber/Pfister." 2. Bronson, E.B. (1895). "A case of symemetric cutaneous atrophy of the extremities. " J Cutan Dis, 13:1-10. Referenced by Scrimenti 919950. 3. Afzelius A. Verhandlungen der dermatologischen Gesellschaft zu Stockholm. Arch Dermatol Syph 1910;101:404 Referenced in Weber/Burgdorfer (1993), chapter by Weber/Pfister 4. Everything You Need To Know About Lyme Disease by Karen Vanderhoof-Forschner. pg. 161 5. Garin CH, Bujadoux CH. Paralysie par les tiques J Med Lyon 1922;71:765-7 Referenced in Weber/Burgdorfer (1993), chapter by Weber/Pfister. 6. Everything You Need To Know About Lyme Disease by Karen Vanderhoof-Forschner. pg. 165 7. 1945 "Mayo Clinic researchers present additional cases of ACA. Although some of the patients had arthralgias, arthritis and heart problems prior to ACA the researchers conclude they are unrelated to the skin disease. source: Montgomery and Sullivan (1945) "Acrodermatitis atrophicans chronica." Arch Dermatol, 51:32-47. Referenced in Weber/Burgdorfer (1993). chapter by Weber/Pfister 8. Hellerstrom S: Erythema chronicum migrans afzelius with meningitis. Southern Med J 43:330, 1950. 9. Thyresson N. . The penicillin treatment of acrodermatitis atrophicans chronica (Herxheimer). Acta Derm Venereol (Stockh) 1949;29:572-621 10. Gotz H.. Die Acrodermatitis chronica atrophicans Herxheimer als Infektionskrankheit (Erganzung zur l. Mitteilung). Hautarzt 1955;6:249-52 11. Everything You Need To Know About Lyme Disease by Karen Vanderhoof-Forschner. pg. 169 12. Sutton (1956) 13. Brehm, G. (1963) "Symptomatische Makro- und Kryoglobulinamie bei akrodematitis chronic atrophicans. " Hautarzt, 14:75-79. Referenced in Weber/Burgdorfer (1993), chapter by Webster/Pfister. 14. Scrimenti RJ: Erythema chronicum migrans. Arch Dermatol 102: 104-105, 1970. 15. Everything You Need To Know About Lyme Disease by Karen Vanderhoof-Forschner. page 173 Hopf, H. (1975) "Peripheral Neuropathy in acrodermatitis chrinica atrophicans (Herxheimer). "Journal of Neurosurg Psychiat, 38:452-458. Referenced in " Acrodermatitis Chronica atrophicans". e. Asbrink, A. Hovmark and K. Weber. Aspects of Lyme borreliosis. Editied by K. Weber and W. Burgdorfer. Heidleberg, Germany: Springer-Verlag, 1993. pp. 201-204. 16. Everything You Need To Know About Lyme Disease by Karen Vanderhoof-Forschner. pg. 174 Steere et al (1977a) 17. Steere et al. (1977a) 18. Everything You Need To Know About Lyme Disease by Karen Vanderhoof-Forschner. pg. 174
Georgia Wissmiller <jwissmille@aol.com>
- 11/19/99 20:45:48 EST

Dear Michael' Thanks for the article. Here's my story if you are at all interested: At the risk of being pretentious, here is my story involving a very political disease. There has been a protest at the NIH involving Dr. Alan Steere, an advocate of the insurance companies and the people Lyme has effected. In addition, if you are looking for people who have used the internet to find medical diagnosis and treatment, that is how I reached my diagnosis. 3 year ago I started to have problems walking down stairs. I set up an appointment with my neurosurgeon as I had a history of several herniated discs (HNP) in my back. He ordered an MRI of my lumbar and thoracic back. The MRI showed 2 new HNPs. He decided to be throe and ordered a cervical and brain MRI. The brain MRI came back plaque/artifacts demyliating disease (MS). He refereed me to a neurologist. The neurologist reviewed the MRI and believed the MRI showed artifacts. He said that even if they were plaques, the plaques were in the wrong spot for MS. He ordered an audio and visual EMG, did a spinal tap, an evoked potential test and a follow up MRI, all negative for MS. At this time (March 97) I began to surf the internet for information on MS and the neurological conditions as MS was not completely ruled out. One person on a web page (University of Georgia) recommended test and retest for Lyme disease. I asked my neurologist for a Lyme test and he ordered an ELISA blood test which was negative (this test is only 14% accurate). The symptoms slowly got worse. The neurologist did say that I had compression of the spinal cord (by MRI and evoked potential) and recommended surgery. I had a micro discectomy at T-T11. I had relief from the steady decline in my ability to walk for about 10 days, then the symptoms came back. I had another brain MRI several months after the surgery (January 98) that again was negative. I continued to serf the web for medical information (I continued to research Lyme disease as the information that I looked at represented that Lyme was curable) for neurological diseases. I then saw my GP and asked him for another Lyme test. Again, only an ELISA was done and again it was negative. In April of 98 my neurologist sent me to Phoenix, AZ to the Mayo Clinic for a second opinion. They redid most tests and a few more. The Mayo's diagnosis was neurological problems etiology unknown. They ruled out MS. I asked the neurologist at the Mayo about Lyme and showed him a rash on my leg (the rash was showed to all previous doctors), a very telltale symptom of Lyme. After the Mayo, my neurologist ordered another brain MRI. The radiologist diagnosed MS as the film sowed some shadowing on the brain stem, however, my neurologist examined the film along with a neuroradiologist and opinioned that the shadow was just an artifact. He ordered another evoked potential in November 98, however my partner canceled my health insurance and the test was not done. During this time researched MS and Lyme on the internet. After the first of the year, I decided to use the internet for a referral to a Lyme literate doctor. I searched the main Lyme pages and it lead to a support group in Las Vegas. I spoke to person representing the group an she set me up with a visiting doctor. He immediately ordered a Western Blot and a LUAT urine test. He sent the blood and urine to Igenex, a lab specializing in Lyme testing. Both tests came back strong positives. These tests along with the rash lead to a diagnosis of Lyme disease. I have been on assorted antibiotics since, searching for the right one that will be effective against the strain of spirochete I have. The quicker Lyme is found, the quicker relief is found. I currently walk with a cane (the short distances I can walk) and have weakness in my left arm. My doctor has said that I will be cured, that it may take up to 2 years. If this is a story you are looking for, you can reach me at larryy@lvcm.com or (702) 435-3615 (evenings), (702) 837-4202 (days). Larry Yenko
Larry Yenko <larryy@lvcm.com>
- 11/19/99 18:21:43 EST

Dear Micheal, I want to thank you for the article that brought attention to the problem that we as Lyme patients face with proper treatment. I as diagnosed with Lyme Disease after 2 1/2 years of infection. This was due to the unreliable tests that are available. When I was finally treated by my PCP, I received 4 weeks of IV antibiotics and was told that I had had enough.... I moved on to another LLMD and have been treated since last January with a variety of antibiotics for both Lyme and Babesia. Although not yet in "remission", I have seen great improvement in the past year... I would hate to think of how I would be now if I had stopped at 4 weeks of treatment. Again, Thanks for bringing attention to this problem... Mary
Mary Rock <MaryLuRock@aol.com>
- 11/19/99 18:10:20 EST

Dear Michael, Thank you for your story on Lyme Disease. It is aggravating to see so much suffering and heartbreak going on because of this devasting disease and to have chronic lyme called non-existant by doctors like Steere, who have little or no experience in treating it or any other microbial diseases for that matter. There is an epidemic going on in this country (Lyme disease is the fastest growing infectious disease in the US), and the general public is being misinformed by these individuals that this disease is easily curable. Instead of focusing on finding cures or understanding lyme, conservative elements in this society find excuses to persecute those who aren't blind to the unbearable level of suffering occuring in the Lyme community, hidden from the general public's eyes.
Anna <acp@lanl.gov>
- 11/19/99 16:41:20 EST

Dear Michael, Thank you for your insightful article on Dr. Steere. The treatment of Lyme patients in America today is appalling. I have recovered after 12 long months of antibiotic therapy and treatment by a great M.D. I am one of the very lucky ones whose Lyme was both recognized and treated aggressively. I am especially lucky because I live in Illinois where we supposedly don't have any Lyme disease -- even though we have tons of deer and white footed mice and are right next door to Wisconsin which is one of the Lyme hotspots. Thank you again for your journalistic courage and for taking on an issue which is bound to become hotter as the years go on.
T. Brockman <normcat@aol.com>
- 11/19/99 15:24:49 EST

Dear Michael, Thank you for the well-balanced article on Lyme Disease and Dr Steere. I am late in sending this message because I was only diagnosed as having Lyme Disease yesterday... after being sick for 13 years! So now there may be hope for getting my health back. BUT, there will be no hope for me and others that follow me if Drs like Steere continue to perpetuate old and outdated protocols. There will be NO HOPE for me if they continue to prescribe short courses of antibiotics claiming that ALL people will be cured on such protocols. People continue to suffer because our Drs are poorly educated in Lyme Disease diagnosis and treatment. They are being misinformed and mislead by these "respected" doctors, these so-called leaders in the field. You have done an excellent job with this article. You have merely touched the tip of this iceberg. I think it would be well worth your while to dig deeper into this topic. There is a lot more you could cover and would be an excellent expose' in the area of medicine, politics and money. Once again, thank you.
Sharon Goodman <ShaGoodman@aol.com>
- 11/19/99 14:43:02 EST

I just want to add my thanks to those of the others who appreciate your efforts to bring more light to these thorny issues. I have had neurological symptoms of Lyme for 10 years, but never a positive test because I received 3 days of IV antibiotics when it first began (right treatment; wrong reasons, thus not enough of it). The latest, and most severe relapse, had me in a wheelchair and in the care of a new-to-me HMO that, needless to say was skeptical of my belief in Lyme. Fortunately, since the symptoms were so sudden and severe, they gave me antibiotics again "just in case" I was right. Three weeks later I was walking again, and meanwhile other tests showed it was almost certainly not MS. I had to twist arms to get those meds, and it wouldn't have been that way had it been "politically correct" for so long to think that Lyme means a positive test and a few weeks of treatment. Too many people have stories like mine for that simplistic view to be true, and it's high time we did what we could to pry open some inflexible minds. Thanks again for your help in that.
CB Nelson <hyperthought@hotmail.com>
- 11/19/99 14:03:27 EST

Hi Michael: Nice story. Sandy
Alexander "Sandy" Fleming <sandyboard@aol.com>
- 11/19/99 11:56:59 EST

Dear Michael, I was so intent on getting the information written about Steere and his sycophants that I neglected something very important when I posted before. I forgot to thank you for writing the article so that others would learn more about this disease. And, to thank you and the Boston Herald for providing this forum where Lyme Disease pateints, loved ones, friends, and others can verbalize our angst, dispair, hope, etc. in a way that might just touch some of the cold cold hearts refusing payment for necessary medical treatments, denying Lyme Disease exists beyond a "wastebasket diagnosis" apparently inherited from Fribromyalgia, as that syndrome has finally had some studies performed that show it to be a neurotransmitter dysfunction instead of it's "all in our heads" as too many of us with Lyme Disease were diagnosed with Fibro and told for so many years! It simply amazes me that so very many people who are supposedly intelligent can fall for this whole hoax of Lyme Disease being both over diagnosed and over treated, or that the patient really doesn't have any more infection from Lyme, it's just "Post Lyme Syndrome", or my personal favorite for being one of the stupidist things I've ever read or heard, that the Lyme patients are simply "addicted to the antibiotics" and thus why we continue to want to be treated. Addicted to antibiotics, now that's really something, don't you think? Yet, these are the reasons being used to deny very sick people the necessary medical treatment they need to keep from getting worse or suffering permanent damage to their bodies. Lyme Disease is a multi-systemic disease, and it can and does affect every part of the body. Yes, we are people with a Pandora's Box of symptoms, and most doctors do not want to even talk to us, much less listen to us, and they tag us with the first label that comes to mind write us prescriptions for anti-depressants and NSAIDS (non steroidal anti inflammatory drugs) and shove us out the door as fast as they can, never bothering to test to rule out anything else and never telling us that Lyme Disease is a differential diagnosis for the same kind of symptoms and medical history we have presented with to the doctor who we sought out for help. This is a quote from the doctor heading the NIH (National Institute of Health) Study on Late Stage Chronic Lyme Disease: Volume 6 / Number 05 / 20-MAY-98 LymeNet Newsletter QUOTE OF THE WEEK: Volume 6 / Number 05 / 20-MAY-98 "These [chronic lyme] patients are in a condition worse than patients with marked congestive heart failure. They are two and a half standard deviations from normal - among the most deviant of any chronic illness." -- Mark S. Klempner, MD, NIH Extramural Chronic Lyme Study Principal Investigator This quote came out about one week after I had become so debilitated, totally exhausted and my body wracked with overwhelming pain and I was forced to seek short term disability as my body would no longer do what I had been forcing it to do with growing limited mobility, minimally treated overwhelming pain, and a plethora of incidents I now know were neurological in origin since Sept. 1997. Yet, when I became so fearful of losing my job and forced myself to go to an ER to be checked, the doctor stood in the doorway looking a my brand new chart and told me that since I'd had these same kind of episodes before he saw no reason to perform any expensive tests. Yet, I was having near sinking spells at work out of the blue where my blood pressure would go from such extremes that I would feel like I was going to pass out. Without ever examining me he made a medical diagnosis of "stress" and it ended up costing my insurance company over $300, for nothing. The same thing happened at the after hours clinic I had tried a couple of weeks prior to my visit to ER. These doctors did not want to be bothered and just wanted to get rid of me and collect they payments! At this point I was waking in the night paralyzed unable to move any part of my body except my eyelids or to call out for help with my husband right next to me in bed. The wonderful doctor who referred me to the Lyme literate doctor to "rule out Lyme" as a causative factor in the chronic pain I'd suffered for almost a decade, really helped to save my life. I saw the Lyme specialist, though I did not think of the doctor in those terms yet, and I was off the wall at our first meeting quite emotional and very upset about things. Instead of throwing me out of the office the doctor very gently invited me in to talk and suggested that we might as well check everything out since I was already there. That very gentleness after the years of nightmare doctors blaming me for still having the audacity to be in pain and having decreased mobility and greater debility, made all the difference in the world to me. I consider that I had been mistreated by the majority of the doctors I'd seen in the past decade and ever since the all over joint pain started 20 years before. No one cared that I suffered from sleep deprivation due to the pain and what I now know to be Lyme Disease. Or that I'd had horrible headaches since age 19, upper back problems since 30, acute lumbar sacral strains at ages 35 and 40, the last one bringing the all over body pain that was called Fibromyalgia and Myofascial Pain Syndromes, where were not wrong, the doctors just did not check deep enough to rule out other possible diseases. So, I took the blame for not getting well, was labeled as a hypochondriac, and other less lovely things, and told I needed to go into psychological counseling or one of the doctor's, a specialist in Fibromyalgia, and co-author of a book on it, would not see me as a patient. I had never asked the doctor for ANY pain medication, yet he wrote on my chart that I was drug seeking! Physician's should be made to pay for this kind of harm they cause patients because they failed god101 in medical school and mistakenly think they are gods and know all and see all. Lyme Disease can be misdiagnosed as many different things, Alzheimer's, ALS, MS, Fibromyalgia, Parkinson's Disease, Lupus, and other diseases and syndromes as well. I truly believe the insurance companies who truly are the richest corporations in the world as a whole, basically rule the world and not really our governments and Lyme Disease and it's well and truly botched handling is only proof of my statement. The whole medical/insurance/pharmaceutical industry complex seems to me to be driven solely by greed and avarice. May God help us all if we don't reverse this trend asap, or else we'll all end up being euthanized because we can't get medical treatment, relief from pain, or become mindless idiots because no one believes we are sick and it's all in our heads, so it will generate money for some and save money for others. I do indeed have Fibromyalgia and Lyme Disease too, my Lyme literate doctor believes (and studies back this up) that the undiagnosed and untreated Lyme disease probably stemming from 14 years of age, resulted in the Fibromyalgia. Please understand Lyme Disease can co-exist with other syndromes and or diseases and a Lyme diagnosis does not negate another diagnosis, it is just more accurate as the underlying disease causing or making another medical problem worse. Wishing us all health and freedom from pain, both physical and emotional.
Sandra Smith <swsftwtx@earthlink.net>
- 11/19/99 11:13:12 EST

Another thought...if the "Lyme literate" doctors are so money motivated as implied by the ignorant, then how do you explain the fact that an average visit with a Lyme pt is 40-60 min...sorting out meds, symptoms from the meds vs the disease, etc...most other docs usher pts in/out every 15-20 min...add to this the difficulty of getting paid by insurers and being turned down when ordering tests etc...believe me taking Lyme pts is a burden NOT a boon...it would make far better economical sense to go back to their osteoarthritis or flu or rheumatoid pts...yet these doctors--too few and far between- continue to see us and treat us and await payment---that is until good ol' Dr Steere tries to remove their license just because he doesnt "agree" with them...hmmmm I wonder how many have stopped to count Dr Steere's bank account from all those hearings he "volunteers" to testify at, all those insurance companies he represents, and his affiliation with the horrid and dangerous vaccine...Id like to match that dollar amt to any acct of any "Lyme literate " doc around!!!!!USA medicine-Money talks, the sick cant get treated...the system is immoral,unethical and just plain nauseating!!!!like Steere himself.
Finette Russak <FinRussak@aol.com>
- 11/19/99 01:17:45 EST

Michael, I applaud your coverage of the "Lyme situation" and ask that you continue to bring to light the plight of those patients who are not so easily cured by the "steere method". Anything released by Infectious Disease Physician groups is now "suspect" becasue they have decided to ignore diagnostic procedure ("not founded" "innacurate" they say despite statistics otherwise) and I think much is sour grapes at not having "their own" discovering this...embarrased naybe that they dropped the ball on this??? In any case there is much evidence that the PCR tests the brain SPECT scans and the LUA tests are NOT voodoo or hokus pocus but performed under scrutiny and provide accurate results which SHOW the persistence of actual infection, and not just "post Lyme" symptoms as Steere would have us believe. Yes, he did add to the positive treatment of this illness IN THE BEGINNING but soon became full of himself and refuses to examine anything from others. While I do agree that hysteria and overdiagnosis is a probelem I have experienced that UNDER diagnosis is far more prevalent with more dire consequences. I am a victim of the latter having been diagnosed as having post partum depression and anxiety...and whattya know when on antibiotics for SEVERAL MONTHS I improved!!! I relapsed after a few yrs (may have been bitten again,unsure) and for past 5 yrs have been VERY ill. Pieces of spirochete have DEFINITELY been detected in my body fluids...and I have spent months at a time on many different antibiotics...we all cant be manufacturing this info...as a fellow scientist I too examine studies with a skeptical eye but c'mon folks, if it has feathers and walks like a duck quacks like a duck and has ducklings hatch from its egss it aint no chicken
Finette Russak <FinRussak@aol.com>
- 11/19/99 01:00:23 EST

Dear Michael, Good reporting. I think it is ignorant for any individual, physician or not, to summarily say certain sysmtoms couldn't be attributed to a disease. If this were so, many advances in science, medical technology and pharmaceutical products wouldn't have been made. I d like to find out from Dr. Steere what other diagnosis he has come up with on individuals who have positive lyme titers and he feels they do not have the disease; Dr. Steere, put your money where your mouth is minus the rhetoric!
Shazy <m2smlvr@bellsouth.net>
- 11/18/99 23:10:26 EST

hi..i didn't know i could write my story here either so here it goes...on july 4 1997 i got majorly sick..then broke out with the bull eyes rash on my legs...and not just one spot three ugly things...i went to one doctor...he said oh u have lyme disease...i said no kidding..so he give me doxcyline for 3 weeks..said take this and u will be cured...well it made me sick...so back to this guy i go...by that time the neck pain, the pain in my joints, the heachaches, the anger and mood swings, the fatigue...was awful..so i jumped on line to do my own research...finding a list of meds i could try...finally after some major talking..i told him i wanted ceftin...he said i will only give it to u for 3 weeks..so i tried it..once again it didn't work...by this time i was so sick i could hardly get back to him...but i go once agian..he said let me send u to a lyme speicalist in easton..by the way i live in PA...so i go..my hubby goes with me...well he told me NO lyme...it's fibromylia..no kidding been diagnosed with that and cfs 5 years ago...duh???? he tells me i need to go to a shrink...i was so mad i almost hit him...we come home...i'm a mess crying my eyes out...i tell my hubby i'm going back to my family doctor...he reorders test...every thing comes back..western blot tells me i have every strain possible..he orders iv recephin to start right away...well the 30 days was great..never felt better...i did good for a while...august 1999 hits...major stress in my family...everything comes back and worst...i go back to the my doctor..he told me lets try ceftin for 3 months...i said what do i have to lose...so i have gotten rid of the headaches...the chest pain in now here...the joint pain is still around...the mood swings are unbelieveable...i can't go anywhere...my driving is so bad...my brain feels like it hurts..i get stabbing pains in my head...my spine is now curved from this...we are now getting a handicap license plate for one car...and going to try and get a wheel chair..i can no longer do my own shopping...i use to go...i use to walk 3 miles a day...i use to be able to do things with my family...i miss this stuff..so much...why can't people see what we are going through and try and help us...we are all out here crying for help but it's like we are all talking to ourselves...i just don't get it...what's wrong with this picture...it's like our government doesn't care...doctor's are blind to all of this...and my family...they don't understand at all...they just add more and more stress on me...anyway..everyone keep pushing for us...maybe one day there will be some help for us...connie
connie <lacie@ptd.net>
- 11/18/99 14:54:47 EST

Dear Mr. Lasalandra: Thank you for providing Dr. Allen Steere an opportunity to express his view on "Politics" in Lyme disease: "Steere said this week that the criticism directed at him is based on politics, not science. 'It's not rational,' he said." Who should know more about politics than rational Allen Steere, MD, a National Institutes of Health-nominated "Astute Clinician"? When he's not busy accusing Lyme disease patients of having a political agenda, Dr. Steere can be seen: - Wielding major political power in US and international Lyme disease health bureaucracies; - Influencing leading medical journals, monopolizing control over editorial content of Lyme disease research and publication; - Manipulating public perception of Lyme disease via effective media campaigns like, "The Overdiagnosis and Overtreatmnet of Lyme disease," which created more than two decades worth of widespread complacency and ignorance about Lyme disease, instead of promoting Lyme disease education and prevention, and more intelligent research into treatment and cure. If this were not enough, Dr. Steere's current role in the development of the first Lyme disease vaccine, a product whose value and safety are matters of great controversy, reinforces the observation that, clearly, the party more patently motivated by politics is none other than NIH's "Astute Clinician". One can't help wonder about the strides in Lyme disease research that could have been made, had Dr. Steere focused 20 plus years of his time and energy on the Science, not the Politics, of Lyme disease.
Milo7 <Milo7@aol.com>
- 11/18/99 11:40:09 EST

Thank you for your article Mr. Lasalandra. Dr. Steeres award is an absolute disgrace.I and my entire family are long term Lyme patients and although we are getting better slowly it will most likely be 2 or 3 more years before we can resume our normal lives. Please keep this guestbook open and thank you again. Glenn Kerler Langhorne, Pa.
Glenn Kerler <Ishtar68@aol.com>
- 11/18/99 10:46:27 EST

After reading your article and the many guestbook responses, I also sent out a plea to other media. Here it is:

An open letter to:

Dateline NBC: dateline@nbc.com
Nightline: niteline@abc.com
Montel Williams: montel4@aol.com
Oprah Winfrey: harpo@interaccess.com
Leeza: mail4leeza@aol.com
Sally Jesse Raphael: sally@sallyjr.com
Today Show: today@nbc.com
Meet The Press: mtp@msnbc.com
Good Morning America: netaudr@abc.com
This Morning: andsvcs@cbs.com
Later Today: latertoday@nbc.com
Crosstalk: go to http://www.crosstalk.org and select "contact us"
48 HRS: 48hours@cbsnews.com
60 Minutes II: 60II@cbsnews.com
Dear Abby: go to http://www.uepress.com/ups/abby/html/askabby.html
Ann Landers: go to http://www.creators.com/lifestyle/landers/writelan.asp
Geraldo Rivera: geraldocbs@aol.com
Karen Heywood (Producer-Dateline NBC) karen.heywood@nbc.com
President Clinton: president@whitehouse.gov
Hillary Clinton: firstlady@whitehouse.gov
The Dallas Morning News: letterstoeditor@dallasnews.com
The Fort Worth Star Telegram: features@star-telegram.com
J.R. Labbe: jrlabbe@star-telegram.com
Senator Phil Gramm: http://congress.org/cgi-bin/oo_compose.pl?dir=congressorg2&mailaddress1=txsr
Senator Kay Baily Hutchison: http://congress.org/cgi-bin/oo_compose.pl?dir=congressorg2&mailaddress1=txjr
Representative Joe Barton: http://congress.org/cgi-bin/webreturn.pl?link=www.house.gov/barton/&dir=congressorg2
Dr. Ian Smith : ianmedical@aol.com

I, and many others like me, are writing to you today for one reason. HOPE. As in last hope.

Our plight concerns Lyme disease (LD). It is a controversial subject within Federal agencies, medical communities, insurance companies, even family and friends. As individuals, we have lost our careers, committed suicides, exhausted ourselves financially, terminated relationships, lived a hellish life, and ultimately, a whimpering death.

As a medical community, it has become open warfare. Doctors that openly treat LD patients are subjected to ridicule, victims of extensive "professional" investigations that resemble McCarthy-style witch hunts, and loss of their practices. We cannot even begin to estimate the loss to the families of these doctors.

For those doctors that toe the "official" line, the result is lucrative consulting contracts and paid testimony for insurance companies. The NIH even lauds the worst enemy of LD sufferers, and uses erroneous citations that are reminiscent of Dr. Goebel’s Big Lie.

As a community, we have written to newspapers. Some excellent ONE TIME articles appear, and the reporter is never heard from again on that subject. They are greeted with a chorus of bless you from the patients, and derisive snorts about know-nothing-reporters from the insurance/bad-doctor community. Guess which one keeps their attention? Yet, I still remember the historical outcome from "The Octopus"; the regulation and remaking of an entire harmful industry.

As a community, we have written our State and Federal representatives. The Senate held hearings in 1993 concerning LD. Following the hearings, Senators Dodd, Kennedy, and Metzenbaum made promises concerning a Lyme Disease Initiative for funding research and cures. This has not happened.

As a individuals, we have written our State and Federal representatives. This is usually met with silence, or irrelevant form letters. "As always, your views are important to me."

As individuals, we have fought, and fought, and fought with insurance companies. Within the "treating" medical community, the preferred treatment is four to six weeks of IV antibiotics, with repeated courses if the symptoms persist or reappear. The "official" position, if even acknowledged by insurance companies, is 4 weeks IV antibiotics, and you are cured. Yet, if you have juvenile acne, they will allow up to two years for treatment WITH THE EXACT SAME ANTIBIOTIC.

Doing battle with insurance companies is only part of the battle. Most of us must also fight our employers. Thanks to the Employee Retirement Income Security Act of 1974 (ERISA), most employers became self-insured. They pay (pay?) from company assets, use employees and third party administrators (TPAs) to run the show. As in "The Rainmaker", their policy is deny, deny, deny. Your recourse? Federal court, no damages allowed.

As individuals, and as a community, we have exhausted all the remedies open to us. That’s why we are writing to you, asking you to use your clout, your media presence, and yes, some of your money. You are our last hope.

Taken individually, our stories would seemingly be easily dismissed as whining "poor little me." However, if an enterprising staffer accumulated all of the stories, performed statistical analysis, plotted the demographics, interviewed the entities that are "keeping us down", there is more than one-hell-of-a-story here. You have a major health catastrophe coupled with a blockbuster expose.

You have my permission to use any and all information contained on my web site.

R. James Martin
501 Sycamore Lane, #327
Euless, Texas 76039

R. James Martin <rjamesmartin@yahoo.com>
https://www.angelfire.com/biz/romarkaraoke/james.html

11/18/99 10:43:53 EST

Dear Mr. Lasalandra, After reading the many replies to your article, I would like to add one more thought/comment. Having received this National Institutes of Health award, Dr. Steere has been promoted to his level of incompetence.
Martha Agricola <RMAgricola>
- 11/17/99 21:18:37 EST

Dear Mr. Lasalandra, Thank you for writing an excellent piece. Like most of the others who have written I have suffered greatly with chronic late stage Lyme Disease. I won't go into the details, as the stories tend to be the same. I have been under treatment now for close to four years. And, while for the most part I am much better, I am not close to the person that I was. Long term treatment has given me whatever relief I have known. To question the fact that this thing is still livng is idiotic... something dead and gone would not "spring back to life," causing unbearable relapses; ones which coincidently respond to further treatment. Thank you again, for shedding some light on this often overlooked and largely misunderstood problem. And doing it so well. Craig Hartglass
Craig hartglass
- 11/17/99 10:28:59 EST

I'd like to say that I don't think the term "easily diagnosed" can be used in the same sentence as Lyme Disease unless you add the word NOT. My son was seen by his pediatrician with the rash in Oct. of '95. The doctor said "Yup, He got bit by something". Now, four years later, he is 15 yrs old, in a wheelchair, has no short term memory, and doesn't even have a tutor. We have gone through over 20 doctors in our HMO and have gotten nowhere for four years! We finally realized what was wrong ourselves and changed insurances so we could see a Lyme Literate Docter. She diagnosed him with Lyme and started antibiotics. We just started treatment a month ago. He is now able to remember what day it is. If it is so easily diagnosed, why are doctors having such a hard time diagnosing it?
Rae Siemssen <siemssen@teleport.com>
- 11/17/99 02:48:20 EST

Hello, thank you for this article. My name is Debbie Davis. A year ago my live was pretty normal. I work as a nurse in a busy family practice office. I worked out 3 days a week. I loved to cross-stitch, walk my pug, sew and craft projects. I have a 16 year old son and a 13 year old daughter. I have been happily married for the past 17 years. But as I said, my life was normal and fulfilling a year ago, until I was bitten by a tiny tick in September of 1998. In November of 1998, I started having flu-like symptoms. I was tested for Mono and it was positive, so it was assumed all my symptoms were coming from this. My symptoms worsened over the following months. I had no energy, could not walk my dog or work out. I had headaches, body aches, joint pain, lightheadedness, difficulty concentrating, difficulty thinking. I could no longer cross-stictch, craft or sew because these require concentration. In August 1999, I developed Bell's Palsy, and my other symptoms worsened, this was very scary. The diagnosis of Lyme Disease was brought up, since I had a lot of the symptoms and I had a dime size round rash at the tick bite site. My Western Blot came back with 3 bands positive. The CDC requires 5 bands, so my doctor did not believe my symptoms were coming from Lyme. In September of 1999, I was seen by a doctor who has experience in treating Lyme disease. It was his opinion, that yes, I do have Lyme. I was put on Amoxicillin to start out with, my stomach could not tolerate this, so I was put on IV Rocephin. It took weeks before by symptoms started to improve, my mind is finally clearing from what we Lymies call 'brain fog.' I still suffer from severe fatigue and joint pain, headaches. I may never fully recover. Why is it that this disease has been around for a long time, but no cure? While it is true that this disease may not kill, it leaves its victims disabled, in pain and destroys their lives. Where is the funding to research this disease?? Please help us get the word out, educate people on this disease, and get the funding we need to find a cure.
Debbie Davis <DJinMECH@aol.com>
- 11/16/99 20:53:45 EST

I have written a small book about my experiences with Lyme Disease in Western Michigan. I suffered 7 long years till I went east for a diagnosis. Had a positive on my csf (pcr test) Getting treatment. Mayo Clinic gave me major brain surgery, which was useless. Told all neruologist about my tick bite, but since this is not a Lyme Disease area, no one helped me. My story's good, what do I do with it? Gail
Gail Weigel <gweigel@zeeland.ki2.mi.us>
- 11/16/99 19:58:26 EST

Dear Mr. Lasalandra, I wrote you before about your article on the protest at NIH/Dr. Steere "Asute Clinician Award", and I thank you for that article. I wanted to let you know we (Chronic Lyme Disease victims)haven't received the public attention we need as of yet, but your article certainly helped. It was therapy for me just to read everyone's stories. I beg you to also read these guess book stories, in order to see just how many of us need your help. My previous response wasn't very personal because I wanted you to understand other facets of this Disease, i.e. needing better diagnostic tests, no more politics, more science, and funding, changing CDC guidelines,etc. But today I received a call from my employer telling me I had exceeded the Family Leave and Medical Act 12 weeks, and basically they were no longer obligated to keep my job and therefore "just wanted to let me know I was being terminated". It devastated me. It was the last shred of hope for a normal life that I was holding on to. Along with losing the job, I lose my dental insurance, my full vestiture in my 401K plan, and I am sure I'll be seeing more results and the full impact of that, once my mind clears. Now I feel like a totally worthless person. I'm only 39 years old and have only been married to my wonderful husband for five years, I have three children from a previous marriage. My husband knew me before I contracted Lyme Disease, so he sees the difference in me, and its so unfair to him and my children. I feel like an eighty year old women, and not only that (which causes me daily pain and fatigue that you could never understand unless you have Lyme)now even if I do get better I have no job. I'm losing hope, and this disease, and controversy surrounding it seems to be winning. I don't think I'll see a cure in my lifetime due to all the politics involved. I have extreme pain everyday, but I am one of the lucky ones because my wonderful doctor is still treating me with antibiotics. However, I sense his apprehension in doing so. He believes in a Clinical Diagnosis of Lyme, and that is how he diagnosed me, after I went five years with an original sero-positive Western Blot, that I was told was a false positive. My LUAT (test that detects Bb antigen instead of our immune system's antibodies) came back highly positive recently, and that was after 9 months of antibiotic treatment. And I had a positive Western Blot IGm, but a negative Elisa and Western Blot IGg.So I do have Chronic Lyme. But not according to Steere and his associates. I just sense my doctor is worried about his practice, if it only took one anonymous call to investigate Dr. Burrascano and others now and in the past,I don't blame my doctor for being hesitant. We can't afford to lose anymore good doctors that are willing to diagnose Lyme Disease Clinically and be able to treat their patients, without fear of retribution and loss of their livelihood. On one hand doctors won't treat you if you have negative tests, and on the other hand doctor's don't trust the diagnostic tests available to them, since they are highly unreliable and vary from lab to lab. The good doctor's like mine are dwindling in numbers. I'm sorry this post became so long, I did not intend it to. I would like to say just two more things. 1) When will the doctors simply be allowed to ask "how do you feel", and treat based on how the patient feels? 2) many "Lymies" can not write to you that would like too, because they are just too sick. I am very sick too, but so depressed today due to losing my job, that I was compelled to write. My final feelings about Lyme Disease is that it is a disease that Crushes ALL HOPE. But it doesn't have to be that way. Thank you for any light you can shed on this disease through your newspaper, and for any future follow up you may do. If just one person that doesn't already have Lyme Disease, can read these posts and learn something to help them not to take this disease so lightly (not their fault), then I'll feel good about that and you should too. Thank you, Sincerely Vicki
Vicki Ferraro <ferraroa@us.hsanet.net>
- 11/16/99 19:37:55 EST

Treating Lyme disease for 3 to 4 weeks with anribiotec is a bunch of crock. I have Lyme for 2 and one half years. I have been the most complient patient there ever could be. I am still sick. I have a positive PCR for Lyme after 2 years. You can see that Lyme is a persistant infection and antibiotics are not completely erraticating the disease. It is aboyut time Dr. Streere find out what Lyme disease is in reality. Too bad he does not have Lyme or he would be singing a different tune.
Nadine Lingo <dufalo@aol.com>
- 11/16/99 15:26:07 EST

Alan Steere is a pompous, ignorant ass who thinks he knows what lyme disease is all about. I can only wish him a case of lingering untreated lyme disease that ruins his life both physically and financially like it has ruined the lives of so many of us sufffering from this horrid illness. I am sure he would quickly change the guidelines if this were the case! It is bizarre that he gets credit for naming an illness that has been around since the late l800's. Do people actually think he discovered lyme disease? He is a blight on the medical profession and his guidelines have caused some of the best doctors in this country to be investigated. These are the doctors who truly understand and treat very sick lyme patients. These are the doctors we need more of not less of. Most so called lyme specialists are truly lyme illiterate and treat patients as if lyme disease were a toothache instead of a horrible infectious disease equal to MS in level of suffering and similar in type of infection to syphlis and malaria. The doctors who use his guidelines keep patients sick and suffering and doctors uneducated about the realities of lyme disease Alan Steere's guidlines have allowed the greedy insurance companies to jump on the bandwagon and tell us that all we need to get better is 4 weeks of treatment and that's all they are going to pay for. He is ruining our lives or whatever is left of them. Who is he to make decisions for the millions of lyme sufferers when he is ignorant of the true extent of the suffering and sickness caused by this monstrous tic. I have been sick for at leat l5 to 20 years undiagnosed, misdianosed and untreated until last year. I truly know what I am talking about. I wish Alan Steere would get educated about lyme disease and then spout his thoughts to the world about the truth about lyme disease. I am sure this is not going to happen. There has to be some way of getting rid of him in his present position. It also makes me wonder if he is not being paid off by the ever-greedy insurance companies to keep his guidelines as they are. I wish someone would look into his financial life maybe we would find something interesting there! Lynne
Lynne Stolper <stolper@idt.net>
- 11/15/99 23:34:48 EST

What I find most interesting is that the doctors who will diagnose and treat Lyme Disease successfully usually have had a personal encounter with it--either they or a relative have it--while those who are not diagnosing and treating suitably have not had such experience with the disease. There needs to be more research done on the local level involving treating-physicians and patients. These people have worked hard in developing a truly serviceable perspective on the issue. For the patients, it's a matter of survival. For the doctors, it's ethical and responsible. The general public lacks an adequate awareness of prevention and diagnosis. Education is key here. There have been suicides over the disinformation associated with the disease. Thanks for your input. There really doesn't need to be all this suffering.
ms <n/a>
- 11/15/99 19:13:27 EST

Thank you for your wonderful article on Lyme Disease. I wrote a response to your article probably on 11/3 and I have not seen it. I wonder if you have received it.It is strange because several people told me they read it. I would write another reply but I am just not up to it. Thanks again for your story and please dig further into this lyme conspiracy. Lynne
Lynne <stolper@idt.net>
- 11/15/99 15:01:46 EST

Thank you so much for your story on Lyme Disease. Dr. Steere gains more publicity for his ideas on Lyme Disease, while new research continues to be discovered which contradicts his theories. One official study which directly contradicts Steere (and there are others) : The journal "Infection" has documented a new culture method where 91% of the patients defined as having Chronic Lyme disease were positive, compared with 0% of the control group. " Abstract: A method for reliably and reproducibly culturing B. burgdorferi from the blood of patients with chronic Lyme disease was sought by making a controlled blood culture trial studying 47 patients with chronic Lyme disease. All had relapsed after long-term oral and intravenous antibiotics. 23 patients with other chronic illness formed the control group. Positive cultures were confirmed by fluorescent antibody immuno-electron microscopy using monoclonal antibody directed against Osp A, and Osp A PCR. 43/47 patients (91%) cultured positive. 23/23 controls (100%) cultured negative. Although persistent infection has been, to date, strongly suggested in chronic Lyme disease by positive PCR and antigen capture, there are major problems with these tests. This new method for culturing B. burgdorferi from patients with chronic Lyme disease certainly defines the nature of the illness and establishes that it is of chronic infectious etiology. This discovery should help to reestablish the gold standard in laboratory diagnosis of Lyme disease. Source: Infection 1998 Nov-Dec;26(6):364-7 Authors: Phillips SE, Mattman LH, Hulinska D, Moayad H Organization: Greenwich Hospital, CT 06830, USA.
jaxx88 <Nclorenz@aol.com>
- 11/15/99 14:30:51 EST

Dear Michael- Thanks for your recent article about Lyme disease and the protest at NIH. I have been recently diagnosed with Lyme & after the horror stories of misdiagnosis I have read, I am extremely grateful to have what I consider to be good medical care. I am currently being seen by a team of doctors - my general practitioner, a neurologist and an infectious disease doctor. I was diagnosed about two months ago based on a positive blood test, and through testing to eliminate other possibilities for my symptoms (which make me look like a victim of stroke, Parkinsons or Multiple Scerlosis.) I now have a home health care nurse, and give myself intravenous antibiotics daily. My nurse has seen a great rise in the numbers of Lyme patients she treats. (I live in the suburbs of Washington, D.C.) I wonder if we are on the cusp of an epidemic? I cannot comment on Dr. Alan Steere's ideas, but am wondering why patients are condemned for wanting to regain a normal lifestyle? The people who have written to you are desperate for help. And why shouldn't they be? Their lives have been changed, maybe forever, and the one thing that make them feel better, at least temporarily, has been denied them. They have been unfairly dismissed and branded with the scarlet letter 'A' - for Antibiotic Abusers. There are many people, good and smart physicians and improperly diagnosed people, who could benefit from interviews with those who are living with Lyme, and by reading the stories of doctors who are doing the best they can to treat Lyme patients. Is it possible for you to run another article? There must be trailblazing doctors out there - what does effective treatment look like? I have no doubt that the cure for Lyme has not been found, but I am hopeful that through honest research there is a chance for me to regain my formerly full & vibrant life. Keep up the good work.
Chris A. <ccander@bellatlantic.net>
- 11/15/99 11:54:09 EST

THANK YOU soooo much for giving LYme disease press. This is what we need - so the government listens and funds are put toward finding a cure. Can you influence The Washington Post to do anything?
Nancy Chapman <ndieter@aol.com>
- 11/15/99 09:08:35 EST

Michael, GREAT Article -- I'm going to send it to all the Reps. on Monday!! This bill may have a chance...this piece increases those odds! Thanks Jenn
Jennifer Mansfield <jmansfie@heart.org>
- 11/14/99 21:01:02 EST

Dear Sir, Having been asufferer of LYme disease for over 26 years I can personally attest to its powerful and long lasting symptomology. I was misdiagnosed as having Rheumatoid Arthritis while in the USAF. The arthritis was unmistakable with swollen knees, elbow, hip and TMJ joints. Doctors immediately injected cortisone and the pain subsided temporarily. As we now know steroids and lyme can be a very bad mix. Still I was one of the few that had the bulls eye rash followed by swollen joints 9 months later. Only after my insistence on being tested for lyme did I receive any abx treatment whatsoever. I have 7 positive WB bands and a high titer ELISA. I had to go outside my HMO to get any ABX over the initial 30 days. I believe this is due to the improper belief propagated by ill informed doctors. The world scientific community must deal with this in a factual way. I have read all studies from both sides in America and Europe and cannot ignore the animal studies which indicate early CNS involvement and an uncanny self preservation element that allows Bb to alter its form to escape our immune systems defenses. A.C. Steere would have the world look for other reasons for the myriad of symptoms that lyme represents. Until he has lyme and really experiences it first hand A.C. Steere should not boast of any knowledge he has concerning it. A.C Steere did not discover anything that was not known over a hundred years before in other parts of the world. Even after his initial interest inlyme he has stated that it was a difficult disease to erradicate. Why did he change his beliefs so fast? What was the scientific fact that caused his abrupt turnaround? A.C Steere knows but is not telling. When in question I always go to motive. I thank you for your honest portrayal of our plight and appreciate your courage for printing both sides of the story. May truth prevail. LCP
Larry Paradis <lasrryparadis@mindspring.com>
- 11/14/99 08:05:19 EST

I was bit in'88,classic bulls-eye rash treated for 10-14 days,don't remember which,told not to be paranoid about lingering disease. My husband used to say after that,"You've never been the same"since the Lyme disease -- , physically or mentally. My cognitive skills and memory powers were dramatically. Some what better with long term treatment stated in 1991. MRI of brain in 1998 show damage to white matter .Just a coincidence? I've never shown completely positive on blood tests. Steere would say I was in the overdiagnosed cases catagory--more of my brain would have been destroyed. I have no other explanation perhaps Dr. Steeres does.There alot of people like me
Dawn Logan <maryme@mailexcite.com>
- 11/13/99 11:12:46 EST

There are so many people with Lyme who think they have another illness. I can't speak for others, but I can tell you how easy it would have been for me to be misdiagnosed. I received a large insect bite rash like no other I had ever seen. It was at least four inches across, deep red, warm, and lasted for three weeks. I had been in a park with many deer, in June. Since there is little public awareness about Lyme, I was not aware that one could be bitten by a tick and not be aware that the tick was attached. I wish I had known that some ticks are as smaller than a seasame seed. I proceeded to get sick, and went to two doctors, who never even remotely suspected Lyme disease. When I developed strep throat and swollen glands, the doctor asked me no questions about other symptoms. After taking the 10 days of antibiotic for the strep throat, I felt almost well again all over, but the doctor did not think a systemic infection was a possibility. As I began to slowly decline, I happened across some information about Lyme. When I went to the doctor to be tested, he told me that Lyme was unlikely, although I had many classic symptoms. When the test came back negative, he had no answers, no suggestions, just a conclusion that it was not Lyme. I could have stopped there and eventually become disabled. I went to the next doctor, who diagnosed Rheumatoid Arthritis. He noted a slightly positive ANA, and concluded that it was also likely systemic Lupus. I could have stopped there and become a Lupus patient. The problem was that I had been completely healthy and athletic prior to the mysterious insect bite. I proceeded to an ID doctor trained at Yale. She said my symptoms were too severe to be Lyme, but agreed to put me on a low-dose antibiotic. I could have stopped there when the low-dose did not take care of things, but proceeded to a Lyme specialist far away from my city at great monetary expense. I am now feeling quite healthy and am active again. How many people stop at the first negative test?
Traci <Lymie@aol.com>
- 11/13/99 09:43:37 EST

please contact the company i work for and share the story of the statehouse ranger who saved a life by using the aeds defribillation machine to save a life ? i work for www,lynnplastics.com and am a heart patient who knows how important such a machine is.and to the rangers, bravo, i tip my hat to you guys. please dont use my name nor e mail address in this venture ? great story.
bob
- 11/13/99 09:17:22 EST

Thank you for that article, keep them coming! We need much, much more media attention to what I believe to be a huge health emergency. Even though we are sick and down, we have got to do something! Steere and other fellow Lyme morons need to be kicked in the head and wake up to see how many lives they are ruining. Think of how many people are suffering with un-diagnosed, under-treated Lyme Disease that will could have permanant health impacts and totally ruin lives. Human arrogance is detrimental, and people like Steere, and Dr. Rush, and Wormser are literally giving Lyme victims death sentences by ignoring the clinical symptoms. Lyme Disease is supposed to be a clinical diagnosis, lab supportive data only. We need to unite and hit these money hungry ignorant so called Lyme doctors where it hurts. Thank god there are dedicated Lyme doctors out there who realize that yes, it is in our heads, in our brain, and central nervous systems, they're right, its definetly in our heads, thats the whole point we need long term treatments that get into the brain! We're gonna beat this disease together. What goes around comes around, and the Bum Steere and fellow morons will get whats coming to them.
Allison Richards <Allisonrich@yahoo.com>
- 11/12/99 23:33:49 EST

Doctors like Dr. Steere are contributing to the suffering of thousands of lyme patients. I, like thousands of others, was misdiagnosed and underdiagnosed for two years. My life has come to a halt, and I havent been able to work. Thanks to doctors like Steere and Dr. Rush in Westchester, NY people are suffering without any help. Where is the debate if almost all lyme suffers respond to long term antibiotics and continue to decline without them. It is a national disgrace how many people are turned away doctor after doctor, only to be referred to a psychiatrist. Isn' it a doctors duty to make himself aware of the symptoms of a health epidemic. I have found that I know more about the symptoms and treatment of lyme disease than most doctors. How sad. We are suffering, losing our mental faculities, the use of our limbs and eyes, financial livihood and well being while they are making money.
Rosanne P. Barrett <Rosanne56@aol.com>
- 11/12/99 22:33:03 EST

Thank you for writing article describing this side of Lyme disease. I have Lyme disease (and babesiosis, a protozoa, from the same tick bite. I was treated with 4 weeks of IV antibiotic, and my doctor said I was done. He followed Dr. Steere's guidelines. I was still sick, and found other doctors to continue my treatment. After 5 more months of antibiotics, I was able to work part time. 10 months later, I still need antibiotics or the Lyme symptoms come back to the point where I can no longer work. I hope that with enough antibiotics (or the 'right' antibiotic) I will finally be back to normal. I feel lucky in that I was able to find doctors willing to treat me, and have health and disability insurance willing to cover my expenses during this time. Thank you again for this article. Getting this kind of word out is essential to getting all us 'lymies' appropriate treatment in a timely fashion.
Loretta Goudie <lorie@sco.com>
- 11/12/99 22:07:38 EST

As with all new medical discoveries there needs to be quite a time of evolution as new information is discovered. As there is a controversy here by a group of people who would much rather have good average health but are sick indeed, isn't it time to come off of a high horse and meet the people? Thank you, Doctor for discovering the connection, thank you but let us move on, that was only part of it. I am very sick with Lyme and so is my five year old (who contracted it from me in utero) his hearing is leaving him quickly, please let's wake up and move onto fresh new information, we have had enough time now for 'new' discoveries. Thank you, Kristen
Kristen <Dannkris@prodigy.net>
- 11/12/99 14:45:50 EST

My husband has had Lyme Disease for 13 years and was untreated for 8 years. He now needs 24 hour care, is on oxygen 24 hours per day, is in constant pain and has a multitude of psychological problems. He has not worked for 6 years and will never work again. All because of Lyme Disease and the ignorance of physicians who misdiagnosed him and did not treat him. After many month of antibiotic therapy over the last few years, guess what? He still has active Lyme Disease, documented. So where is the 4 week treatment idea here? In the garbage can with all of Dr. Steere's other expertise. This individual is hurting Lyme patients, their families, their doctors and those without Lyme who will get it in the future. Wake up America! Get the truth and protect yourself - and lets get Dr. Steere out of business.
Billi Jo Kirk <bjk@earthlink.net>
- 11/11/99 22:48:03 EST

Reading the article about Dr. Steere has promted me to respond. To quote from the article "A delayed diagnosis, he said, "is a big problem. If you don't get treated right away, it gets into your central nervous system and becomes difficult to eradicate.'' How, then, can he say lyme disease can be cured with 4 mos of antix -this is working on assumption, and if not mistaken, the article also states that the criticism directed at him is based on politics, not science. "It's not rational,'' he said. Well, assuming is not a science either. The test for lyme disease is less than 40% accurate!That leaves a lot to be desired Drs. Now, a vacine is being welcomed with open arms. Y? If indeed lyme is over dx etc. Why is there a need for a vacine. Why is it not also reported - what would happen if u already have lyme,unknowningly, and go for the vacine.There r just too many whys,imo, for any dr to make statements as to over diagnosed/over treatment, just not rational. DN, yes I have lyme disease (much delayed diagnosis) and co infection
D.L. Morgan <DNadeja@aol.com>
- 11/11/99 19:12:38 EST

I learned in college, "If it bleeds, it leads." And so the media loves words like "overdiagnosed." Most irresponsible, media-seeking doctors know that. So when an irresponsible doctor says "Lyme is over diagnosed - and over treated." They not only scare up headlines, they also scare their colleagues into putting the disease at the end of the line when symptoms are presented and tests need to be ordered. Case in point is my 8 year old daughter, who had a blood-test confirmed case of Lyme treated immediately at age 3. Now at age 8, when she presented with Lyme symptoms again, the doctor ran a test for mononucleosis - and got a positive result. 4 weeks later, when arthritic Lyme symptoms set in, and went on for more than a month, the doctor wanted to run tests for rheumatoid arthritis, Lupus, and lots of other "not over-diagnosed" diseases. But Lyme was not on the list. In fact, at my request, a Lyme test was done, and she did, indeed, have Lyme. Unless we have more real education about the symptoms of Lyme, and less flamboyant headlines, more children will suffer. My advice to the media is when you need medical comments or information, stop quoting doctors who use inflammatory, overgeneralization words like "overdiagnosed" "underdiagnosed" or "ineffective" - and start calling some good doctors who are more interested in helping people - rather than making headlines.
Eileen <Emmc2@aol.com>
- 11/11/99 18:35:18 EST

Quick note to say I have chronic Lyme (going on three years) and was told to try bio feedback for stress after an emergency room diagnosis. Instead of treating my early Lyme infection for more than 28 days, the Navy quacks told me not to come back into the clinic. I'm getting better after aggressive out of state treatment that I sought on my own and have had to pay for on my own as well. I'm an athlete and a proffesional and hate to be ill. Lyme has devestated my life.I was bitten in Mississippi(along w/ many other military personel & dependants), where my husband is a Navy jet pilot. You think the civilian world is slow to come around on this...try the military. Thanks for the article. Andi
Andrea Howey <Whowey77@aol.com>
- 11/11/99 17:17:16 EST

"Steere said this week that the criticism directed at him is based on politics, not science. "It's not rational,'' he said." I beg to differ with Dr. Steere, who seems fond of portraying those who disagree with him as "irrational." He has consistently chosen to ignore the substantial amount of evidence showing that chronic Lyme patients are suffering from a persistent infection. It is well-known that spirochetal diseases can be very difficult to cure, particularly in late stages. For example, in the highly respected text used by all medical students -- "Current Medical Diagnosis 1999" by Appleton & Lange -- it says that in late stage syphilis, the treponeme (the spirochete that causes syphilis) cannot be eradicated from the body. Why then does Dr. Steere continue to deny even the possibility that the same is true for Lyme Disease, when SO many patients relapse after they go off of antibiotics (only to improve when antibiotics are resumed), and when SO many studies have found evidence (by culture and PCR) of persistent infection in treated patients? And what of the studies that have found Lyme INSIDE of cells, when it is known that conventional antibiotics do not penetrate inside of cells well? There are more than 20 published studies from many many different research labs that disprove Dr. Steere's contentions. How many more are needed for Dr. Steere to admit he has been misleading the medical community, and that he is responsible for thousands of patients going untreated based on his protocols? --Joanne
Joanne, from PA <Joanne822@aol.com>
- 11/11/99 17:16:17 EST

My daughter was 18 months old when she was bit by a Lymne-infected tick. She was treated, as per Dr. Steere's protocol, with amoxycillan for 10 days. Her symptoms persisted and when I returned to the pediatrician, I was told that my daughter was merely making up these complaints of joint pain to get attention! Finally, I found a lyme-educated doctor who put my daughter on a longer and stronger trial of antibiotics. Slowly she is improving. It has been a very difficult three years for us. It frightens me that Dr. Steere is so unwilling to look at the complex behavior of the Lyme spirochete. It has been documented that the spirochete can change and mask itself, making certain types of antibiotic treatment ineffective. Treatment protocols vary with each individual. Dr. Steere's rigidity and lack of ability to learn from both anecdotal and empirical data regarding CURRENT Lyme treatment puts patients who are sick at risk.
Lisa Furman Cott <zebramoon9@cs.com>
- 11/11/99 16:17:36 EST

How long is it going to take for all our voices to de-bunk the theory of easy cure lyme? How long will we have to shout the same sad stories of chronic illness? Our children are contracting it - our families are shriveling up from the financial,emotional,physical drain - perhaps when more physicians have it? More senators? A governor or two? It seems only the ones who have it have an inkling of the suffering going on. Year after year more support groups pop up - with the leaders (most times)more aptly prepared to diagnose you than the local ID/MD. So much needs to be done - the forum needs to move on to how can we cure and how to treat - not stagnate on does this person really have it?
Kyra <kyraadele@excite.com>
- 11/11/99 15:58:41 EST

I appreciated the lyme disease story. I have suffered from lyme since 1991 and I am can tell you with 100% certainty that chronic lyme will not always be cured with a 4-6 week course of antibiotics like Dr. Steere contends. I was treated initially with a 6 week course of IV rocephin - I did not improve from this -- it was only after several months of antibiotics that i began to improve. Lyme is a devastating disease - many people out there of suffering tremendously - it invades the central nervous system and brain - causing severe nuerological problems - Dr. Steere's theories are absolutely wrong and many people are slowly dying because of the treatment contoversy.
James Whicher <flslat@aol.com>
- 11/11/99 11:26:22 EST

Thank you for presenting a clearer picture of lyme to the public. Although I have only experienced it's devastating effects for just under 2 years, it has completely turned my life upside down. It has taken this long to be identified by a well known expert. I am fortunate to have had training in medical research, yet the multiple symptoms and severity of the illness have been overwhelming. I can only hope to someday return to my job and former life... which has literally come to a standstill. I have less function than my grandfather did at age 104. I move slower... WHEN I AM able to move. It's impact has been dramatic. I fear not only for my own future, but for the future of all lyme afflicted... knowingly, or yet unknown. I am far too ill to travel, & am housebound >90% of the time. I am sure there are many in the same boat. I regret being unable to attend, but grateful to those who did so on behalf of all of us. I realize the price they will pay and residual effects of energy depletion. Many thanks to them, and to you, Michael- for speaking for those of us who cannot. Renee,R.N.
renee <renee@medscape.com>
- 11/11/99 03:38:51 EST

I have watched my life as I knew it steadily trickle away since May 1995, 5 months after receiving the first booster during the Connaught Lyme vaccine study. As I sit home now and try to remember what it was like to be a vibrant, active, pain-free person, I often wonder where I would be today if I had been less trusting and more educated back then. The only thing that keeps me going is the hope that one day I will see my "executors" inside a court of law-and it saddens me that the motivating force that keeps me going is hate and revenge because by now I have given up all hope of regaining my former life. I don't think I will ever again know what it is like to have a day devoid of pain, a day that I accomplish what I set out to do or manage to retain a coherent thought. The best I can hope for is that there will be real, meaningful Lyme research conducted in the future and stories such as mine will be one of the rare few "horror" stories instead of the one we all hear every day.
Alison E Schettini <alison7@worldnet.att.net>
- 11/11/99 01:11:23 EST

Thank you for writing the article about the Lyme Protest. I have been suffering from Lyme Disease since I was 17. That entire time I was told I had CFS. Now, 10 years later, after losing so much time, what shouldd have been the best years of my life, I find myself still in shock! I have finally been diagnosed with Lyme disease, and had a major response to IV antibiotics. I was about 95% cured and back to my old self, when I got re-infected this summer, and contracted Lyme once again. And boy did I ever know it! For the past 4 months I have suffered tremendous hardships, and been put thru hell by the so called "astute clinicians" that claim to know all about this complex illness. We are human, and my 2 cents on this is, that there is no way that Steere or anyone else can say that Lyme is "cured in 4 weeks" that is so ludicrous! We need to be treated until we are well and them some! If only these docs would admit they dont have all the answers, and admit each case is different, we could go a long way in healing ourselves.
Brooke Winters <Brook007@hotmail.com>
- 11/11/99 00:37:44 EST

The reason Steere's ideology is in step woth the Infectious Diseases Society because he wrote their protocol. Steere has hurt a lot of people; more than can ever be counted, because of his Overdiagnosed and Overtreated article in JAMA 1993;269. The fact is that the Rheumatologists screwed up Lyme disease by recommending the severe immune irritant OSP A as a vaccine for Lyme. It's tough to admit you stepped on your...pencils. Steere continues to hurt people with Lyme disease by improperly diagnosing them deliberately, which is criminal. The reason the NIH chose to honor him is' because the rest of the world knows he is a buffoon and is continually criticized by people capable of independent thought and who can read. The NIH was recently hit with an onslaught of data that proved Steere's point of view is driven by a need to contain an infectious disease within the description of an autoimmune disease as Steere has friends in the NIH and his buddies continue to be funded by the NIH to discover ways to make money off of this disease by focusing this research money in the discovery of newer vaccine candidates and test kits for this infectious disease and not in a cure. The NIH asked him to speak an honored him as an astute clinician out of fear that Steere and his unscrupulous buddies were losing ground in the Integrity Department. As long as Steere and the NIH can postpone discovering a cure for Lyme disease, the more money they can make. Currently Steere is involved in studying Lyme disease in Russia- no doubt so he can grab a patent or two (he doesn't have any yet, but his friends do) and participate in more vaccine trials. I believe the going rate per enrollee is $1000. Here in CT he offered to sample EM rashes but made no offer of treatment or follow up although his own data demonstrates that 34% of people infected with Borrelia do not recover within the first round of a 3-4 week antibiotic regimen. Astute? Yes, definitely. Astute means shrewd and crafty. He is that, when it comes to stealing a fortune from the deserved investment in a cure for Lyme disease.
Kathleen M. Dickson <kathleen.dickson@snet.net>
- 11/10/99 20:15:28 EST

I have Lyme disease, and have had it since 1994. I was only diagnosed in 1996, and have been receiving treatment for the past two and a half years. I would want, more than anything, to be able to get off antibiotics. However, when I have tried, the symptoms have returned with a vengeance. It was an easy choice, really -- going on disability and having no life, or continuing with the meds, so that I could work, and have a quality life. It incences me that people like Steere would take that away from me. If it weren't for these meds, I would be a huge burden on my family and society. With them, I can survive. I am very lucky. Not everyone benefits as much from meds, and indeed, I have had to switch meds several times when they seemed to stop working. Anyway, thank you for the article. It is good to bring attention to this issue. Again, as far as I am concerned, Steere is the public's worst nightmare. Lyme disease is very serious, and needs to be treated very aggressively. Hiding your head in the sand and denying it won't help anyone. Stephanie Nitsche
Stephanie Nitsche <nimue@ibm.net>
- 11/10/99 18:17:16 EST

Mike: Wondering if I could get permission to use some of these replies you've received for an article on the Steere protest I'm doing for the Lyme Disease FOundation's newsletter. I'm going to make reference to your article and will of course give the Herald full credit. Sincerely, Chris Malinowski Communications Director Lyme Disease Foundation Hartford, CT
chris malinowski <www.ldfcm@aol.com>
- 11/10/99 13:53:04 EST

I am glad to see Lyme disease getting some media attention! I know of so many, including myself, who are suffering due to Lyme disease. I would like to see more media coverage of what Lyme disease is really about. Many folks are to sick to get out there and be heard! I experience pain on a daily basis because my diseas was not found untill it was too late. I hope there will be a cure or at least help for Lyme in my lifetime. Thank You
J. <JCsLamb@aol.com>
- 11/10/99 13:51:58 EST

I am glad to see Lyme disease getting some media attention! I know of so many, including myself, who are suffering due to Lyme disease. I would like to see more media coverage of what Lyme disease is really about. Many folks are to sick to get out there and be heard! I experience pain on a daily basis because my diseas was not found untill it was too late. I hope there will be a cure or at least help for Lyme in my lifetime. Thank You
J. <JCsLamb@aol.com>
- 11/10/99 13:51:55 EST

I am one of the first DIAGNOSED cases in my area. In April of this year I was hiking on Monte Sano Mountain State Park. 3 days later I developed a red "bull's eye" rash. by the 4th day I was limping. I was treated for a spider bite. 6 weeks later I started losing bladder control (I am 32 years old). After many tests my doctor recommended that I see a urologist. That visit was of no use to me. He said that what I was describing didnt make any sense. I began to spiral downward with no bladder control, a constant fever, falling asleep at work. And the pain!! I sought medical attention again and I was told that I was "depressed". Not only that...I was in "denial" that I was "depressed". I had an antibody test for Lyme. It came back negative. I was told by the receptionist that this was the only test for Lyme and that since it was negative I didnt have Lyme Disease. I now drive 5 1/2 hours to see a doctor who finally gave me the Western Blot. It was positive. Lyme is not overdiagnosed. Doctors dont even know what tests to give!!
Kara Kyriaka Tyson <omni@hiwaay.net>
- 11/10/99 13:22:19 EST

I liked your recent article about the Lyme disease patient protest against Dr. Steere. You presented a fair discussion of both sides of what should not really even be a controversial issue. Dr. Steere's teaching that 3 weeks of treatment is enough has led many doctors astray and caused many cases of chronic Lyme that may have been preventable. His erroneous belief that there is no such thing as chronic Lyme has caused many doctors to deny continued treatment, leaving many patients disabled and unable to work. If I had received more than 3 weeks of initial treatment, and higher doses of the medication or initial treatment with IV drugs, perhaps I could have been cured. I was still getting sicker while on the medication, so the dosage was probably not high enough. After 3 weeks of treatment, I was unable to convince my doctor to treat me any longer, even though I was still very sick and was still developing new symptoms. Two days after the initial treatment was stopped, I was so sick I had to spend a month in bed until I was abe to resume treatment under a different doctor. I have been on continuous antibiotics for over a year now. I have had two more breaks in treatment; but, both times, I had a full return of all symptoms after just 2 days off antibiotics. That makes it obvious to me that I need continuous antibiotic treatment to lessen symptoms and prevent a full return. Even on antibiotics, however, I'm too sick and tired to work. I had to quit a job I enjoyed. I spend a lot of time in bed and miss the social interaction of friends, co-workers, and neighbors. I have neurological symptoms similar to multiple sclerosis and feel chronically numb in my legs, face, and some fingers. I can't use my little fingers to type anymore, and sometimes I can only type with 6 fingers. I walk with a cane. My words and syllables get all mixed up in the wrong order when I speak. I communicate better by typing, because errors can be corrected. Dr. Steer also seems to deny that Lyme disease is a problem throughout the U.S., causing patients all over the country to be denied treatment because their doctors say "There's no Lyme disease here." My doctor told me that, too. I have since heard of many cases in my city. I live in the middle of the U.S. Most cases don't get reported to the CDC, because some strains of the Lyme bacteria don't show up positive on the test the CDC uses, although we may get positive results on other tests and get all the Lyme symptoms after a tick bite. Another reason cases don't get reported is because doctors say "There's no Lyme here" and don't diagnose the disease correctly. I think it's disgusting that Dr. Steere's ignorant statements continue to be quoted, causing such extreme suffering in many thousands of Lyme disease patients throughout the country , who could possibly get well or at least better if their doctors would believe in the disease and provide adequate treatment.
Kathy White <ksw@planetkc.com>
- 11/10/99 13:17:12 EST

As a person who survived advanced Lyme disease, I feel that Steele's views aren't compliant to the behaviors of this disease. One supposition carries the possibility that Steele's endorsements are for the benefit of a medical culture which, for reason's that are obscure to me, has opted to underestimate, and often undertreat, the trauma of this disease. Add to this that the American medical community has intimidated physicians, who have shown a willingness to engage this illness using more appropriate methods, enough to stop treatments for Lyme disease. As an American medical center in New England attempts to create a feature, so too do they create a target for the frustrated patients of a disease which I could, at least personally, describe as one in which you can wonder whether survival was the better outcome.
Rich DeBoe <radman@aracnet.com>
- 11/10/99 11:17:37 EST

My 5 year old daughter, was recently diagnosed with Lyme Disease. It has been a terrible nightmare finding the best treatment for her. Every doctor that I spoke to has given me a conflicting opinion and I fear that my daughter's health may be at stake for her future. My husband was recently diagnosed with severe Dilated Cardiopmyopathy, yet he had NO symptoms. This baffled the doctors, but no other options for his condition were explored further. Not until I pushed him to be tested for Lyme, one year later, was he treated for Lyme Disease. Dilated Cardiomopathy can be a symptom of Lyme, yet every time I mentioned this to doctors, my inquiries were quickly dismissed. The cardiologist referred us to Dr. Steere...Thank God I didn't go see him and went to a Lyme Disease Specialist! He has been diagnosed with Lyme Disease and is being treated with antibiotics. We are praying for his recovery!
Wendy <Pittfarm@aol.com>
- 11/10/99 10:50:53 EST

Dear Michael, Thank you for the media attention & factual reporting on lyme disease. This is an insiduous disease & the politics of it are so unbelieveable... We've been refused bloodtests (by Mayo doctor & others), been to "supposed experts" who are nothing but lyme antichrists - have a letter from a doc near Chicago that said my 16-yr old daughter does not fit "AGE" & minimum clinical system requirements for lyme. (Do ticks "card you" before they bite? This is a child who volunteers at a wildlife rehab center - or used to until lyme disease STOPPED her life in it's tracks!) Please, sir, continue your efforts to report on this & give it all you've got. My straight "A" high school student, all-star / multi-sport athlete / musician's dreams of becoming a doctor are being threatened by this disease! God Bless you for caring! Chris Jones
Chris JOnes <Dobelovr1@AOL.COM>
- 11/10/99 10:39:15 EST

As a mother of a patient who has been couregeously battling the Steer "non-existent Lyme disease" for 3 years, my primary thought is WHO IS PLAYING POLITICS? Could it be that Steere initially was playing politics with the diagnosis & treatment proceedures in 1978? Did he reach a plateau & find that it would be more advantaheous to him i. e. money, prestige, other forms of personal gain if he completely reversed his views. What did he receive from Tufts, insurance companies, NIH to rescind his beliefs. If he can testify against colleagues who are following his original beliefs- Someone has to be paying him- What price- what did it take to sell his soul? POLITICS --yes-- definitely. Dr. Steere appears to be a MASTER OF THE ART.
Jeanne Kelly <jkelly6403>
- 11/10/99 08:27:28 EST

Michael, thanks for your coverage of the NIH's "Astute Clinician" award given to Allen Steere, MD, for his contributions in the field of Lyme disease. And to help give you & your forum readers a clear idea of just how flawed the "astute" Steere's work is, I have included two letters to the editor that were published in response to his [Steere's]1993 paper "The Overdiagnosis of Lyme Disease". Letter to the editor by Joseph J. Burrascano, Jr., MD from The Journal of the American Medical Association Dec. 8 1993 p.26829(2) To the Editor.--The article by Steere et al (1) on the overdiagnosis of Lyme disease has caused a great deal of concern and anger among physicians and patients alike. Lyme disease is a clinical diagnosis,(2) for it is the patient's histories and symptoms that are the criteria on which the diagnosis is made. This fact is discounted by the authors, as are results of serologic tests done elsewhere. However, the authors obviously lend great weight to their own test, despite well- documented awareness of the unreliablility and variability of serologic test results.(3) Indeed, there is no proof that their laboratory is any more accurate than the many others tested. Their own T-cell proliferative assay, used on some of their patients here, misses 55% of confirmed cases. (4) My experience in a practice that serves as a referral center for thousands of patients with chronic Lyme disease from all over this country and other countries is that the predominant problem with these patients is underdiagnosis and undertreatment. By and large, these patients are chronically ill and many are disabled, and a typical history, heard repeatedly, is that years had gone by before proper diagnosis. Alternatively, they were treated with ineffective regimes that were not able to control their infection, but were then declared cured and further treatment was not given. These people went on to see many physicians, spending thousands of dollars, and were diagnosed with a plethora of conditions, including fibromyalgia, depression, osteoarthritis, rheumatoid arthritis, multiple sclerosis, organic brain syndrome, and the like. Some were even considered malingerers. Many were referred to psychiatrists when their medical physicians lost faith in the validity of their patient's complaints. The tragedy that is chronic Lyme disease today could and should have been prevented, but the fact that these same errors in medical care are still occuring is only reinforced by articles such as the one by Steere et al. The large, vocal, and at times militant Lyme disease support group movement in this country exists in part because of these very problems. I now plan to tabulate my experiences formally so they can be reported . I strongly recommend that other clinicians whose experiences are similar to mine do likewise. Until we primary physicians who provide the day-to-day care for these unfortunate people do this, the tragedy that is chronic Lyme disease will continue. Joseph J. Burrascano, Jr., MD East Hampton, NY (1) Steere AC, Taylor E, MuHugh GL, Logigian EL, The Overdiagnosis of Lyme disease. JAMA 1993;269:1812-1816. (2) Diagnosis and treatment of Lyme disease: NIH State of the Art Conference. Clinical Courier. August 1991;9:5-8. (3.) Bakken LL, Case KL, Callister SM, Bordeau NJ, Schell RC. Performance of 45 laboratories participating in a proficiency program for Lyme disease serelogy. JAMA. 1992;268:891-895. (4.) Dressler F, Matalino H, The T-ceproliferative assay in the diagnosis of Lyme disease. Ann Intern Med. 1991;115:533-539. Letter to the Editor by Craig P. Cleveland, MD. Cinncinati, Ohio To the Editor.--I was dismayed to read that Steere et all (1) ignored many of the basic principles of the practice of medicine as well as of good research. First, they ignored the accepted guidelines as published by the National Institutes of Health (2) that Lyme disease is a clinical diagnosis. Their insistence on eliminating cases that had not resulted in positive Lyme disease tests ignores this fact. Second, Luger and Krauss (3) showed that the interlaboratory variation seen in their studies reinforced the concept that the diagnosis of Lyme disease must be made on a clinical basis. The inconsistencies were again shown by Bakken et al (4) when they reviewed 45 laboratories. Why do Steere et al believe that their tests are better than any others? Is it in order to promote their own hypotheses? Third, since there does not exist a test to demonstrate a "cure" in Lyme disease, how can they state that recurrence of symptoms is explained by other diagnoses (chronic fatigue and fibromyalgia) rather than the more more likely explanation of peristent infection secondary to inadequate treatment? In addition , since the other diagnoses as stated above also do not have definitive tests for their diagnosis, how have the authors ruled in these diagnoses and ruled out Lyme disease? Preac-Mursic et al (5) demonstrated that patients with symptoms of Lyme disease, after being treated with antibiotics, can still be culture positive for B. burgdorferi, with or without positive serologic results. With many patients, retreatment with antibiotics results in improvement in symptoms, not showing the gradual extinguishing benefits as seen with placebos. The published article further perpetuates the medical community's insecurity with the diagnosis of Lyme disease and ignores the substantial morbidity and disability seen in individuals with chronic Lyme disease. Further denial of the lack of effective late-stage treatment and the long-term complications of the disease heightens the tragedy of Lyme disease since the most effective approach to the disease is prevention. Without acknowledgement of these facts, adequate preventive education and early consideration of the disease at a time when antibiotic therapy would be successful will not occur. Craig P. Cleveland, MD Cincinnati, Ohio (1.) Steere AC, Taylor E, McHugh GL, Logigian EL, The overdiagnosis of Lyme disease. JAMA 1993;269:1812-1816. (2.) Diagnosis and treatment of Lyme disease: NIH State of the Art Conference. Clinical Courier. August 1991;9:5-8. (3.) Luger SW, Krauss E. Serologic tests for Lyme disease: interlaboratory variability. Arch Intern Med. 1990;150-761-763. (4.) Bakken LL, Case KL, Callister SM, Baordeau NJ, Schell RC. Performance of 45 laboratories participitating in a proficiency testing program for Lyme disease serology. JAMA. 1992;268:891-895. (5.) Preac-Mursic V, Weber X, Pfister HW, et al. Survival of Borrelia burgdorferi in antibiotically treated patients with Lyme borreliosis . Infection. 1989;17:355-358.
Annonymous <annonymous@secret.com>
- 11/10/99 07:25:34 EST

Dear Mr. Lasalandra, Thank you so much for your article on Lyme Disease. I am a Chronic Lyme Disease sufferer and went mis-diagnosed for almost six years. So now the its pretty bad and difficult to treat. But what is worse, is the controversy going on with Lyme; is there such a thing as Chronic Lyme, or is it Post Lyme Syndome (an immune system reaction)? We also need better tests, and most of all we need a cure. But this disease has become a political battle. Dr. Steere thinks we all just "want more antibiotics", yeah, like antibiotics are narcotics are something. The only reason we want them is because they provide us some relief, but we know they do not provide us with a cure. What we want, is for the battle to stop, and funding for real Lyme studies and research to find a cure. This disease has robbed us of our lives and therefore have also robbed our families of their normal lives. My twelve year old son doesn't know what its like to have a normal mother, and my husband has the extra stress of worrying about me, and the finances, since I can no longer work. Please do a follow up report on this, there are thousands of people that would be willing to provide you with material, and research documents. If you need any assistance, just ask, you will be amazed at the response. Thanks again for the article. Sincerely, Vicki Ferraro & Family ferraroa@us.hsanet.net
Victoria Ferraro <ferraroa@us.hsanet.net>
- 11/09/99 22:05:30 EST

That was a great article. Dr. Steer should not be practicing medicine. Nor should several doctors in Florida. Because of them, I am now "trying" to stay as well as a lyme person can, having to leave the state for treatment. My first treatment was 7 months after the tick bite. We need HELP! Thanks, Helen.
Helen Diegel <Heldiegel@aol.com>
- 11/09/99 20:57:41 EST

I have a fully documented Lyme disease by CDC critera, so this is not some other disease. Over a period of a few years I went to several physicians who told me that I was fine. I finally quit going to doctors until I was so ill that I thought my life was over. I also had to give up my job because of 'something' that was wrong with me. When I was finally diagnosed, I discovered the controversy about this disease, and decided that I had to learn what I could about it and the reason for the disagreement. I believe that due to the long delay in my treatment that I am one of those with Chronic Lyme Disease. I am significantly better, and am back at work but do not believe that I will ever be the same. I do experience relapses for which I know that antibiotic therapy definitely helps. Without it who knows what my life would be like? In my opinion Dr. Steere does much to malign those of us who have not had a full recovery and give those HMOs, PPOs and insurance companies a good excuse not to pay for treatment to keep us well enough to lead as productive a life as the antibiotics allow us to live.
Jill Auerbach <auerjill@aol.com>
- 11/09/99 20:50:17 EST

I live in a state where most docs would tell you there is no Lyme - North Carolina. I didn't have a clue that Lyme had so many politics and didn't have any idea that I would have difficulty finding appropriate treatment. Luckily, I found a doc who was willing to read up on it and take that chance. But I am faced with going up north for treatment if it becomes more complicated. I have read and heard so many sad stories and it scares me to death to think of what I may be up against. Thank you for your story.
Connie White <Conniew40@aol.com>
- 11/09/99 19:20:31 EST

Dear Michael, I am deeply disturbed but not surprised to learn from your article Dr. Steere's stance on the Lyme disease treatment controversy. I am new to this arena, but am old with this disease that i share with all three of my precious sons. Apparently, a cover-up regarding the Plum Island biohazard facility (which is being reopened to a level 4 biohazard unit by the Dept. of Agriculture)is in the makings. How ironic that one may use the title, doctor, yet never become proficient and continue to practice medicine in the fashion dr. steere sees appropriate. neither ignorance nor arrogance has any place in this arena, and eventually all the perverse bed linen will be hung out in the broad daylight for all to see. these lies smack of Socialist Realisim that flourished in the USSR during Stalinism. i am sadden to say i am afraid to leave you my name and e-mail address. big brother is listening.
virginia
- 11/09/99 16:15:36 EST

I have lyme disease. I have negative blood tests, but highly positive urine test. If I was Alan Steere's patient I would be in a wheelchair diagnosed with MS, incontinent, with a pronounced stutter and unable to remember the names of my children. After 6 months on IV I can walk and lead a (mostly) normal life. Alan Steere's narrow view of the effects of the disease has harmed many of us.
Anna Burbank <burbank@voicenet.com>
- 11/09/99 14:47:01 EST

In the fall of 1994 my husband and I moved our two young children from Manhattan, NYc to Northern Westchester County, NY. We had heard of Lyme Disease, and were initially somewhat concerned about the risk of aquiring it. My husband, a research psychiatrist, asked several colleagues what their knowlege was, and the general consesus was that it was easily diagnosed, and easily treated. I shared my concern with our pediatrician, who I know had a house in the upstate suburbs, and he assured me that it was nothing to worry about. Within one year of our move my husbands health began to decline, and he presented with a series of symptoms he had not experienced before. He took himself off to a series of physicians, all of whom noted a robustly positive Lyme Elisa test, and all of them dismissed it as a probable false positive, and offered no follow up advise. In time, we others developed different presentations, ranging from Psychiatric to arthritic, and were all eventually diagnosed with Borrelia and Babesia. Dr. Steere's publications reach a wide audience. Clearly his tenets of overdiagnosis and overtreatment have trickled down and become the standard chorus most doctors hear when they think of Lyme. Even the name, Lyme disease, is a pathetic attempt by Steere to spin this illness into a category it does not belong in. It's not rheumatology, and its not just Conneticut. He is a cancer upon science, and the fact that the NIH honors him for his devious role implicates them in the plot as well. The governwment doesn't want to see this illness. Will you help us force them to look? We need help. Thanks for a great start. Terry
Terry Baldwin Lautin <bpcagent@aol.com>
- 11/09/99 13:44:05 EST

Dear Mr. Lasalandra, I am being treated for Lyme disease and have been for 1.5 years now. I came very close to loosing my life as I know it. Dr. Steere's mis-information and unprooven oppinions on Lyme was a significant factor in the problems that I had with getting an early diagnosis and treatment. Thank you for your article. regards, Bob
Bob Levine <omicron@erols.com>
- 11/09/99 12:02:24 EST

Dear Michael, I was just e-mailed your publication and am saddened to discover that Alan Steere is apparently still trying to claim notoriety for being the so-called discoverer of Lyme Disease...he is not, nor ever has been the discoverer...Willie Burgdorfer (after which the bacteria for lyme, Borrelia Burgdorferi, was named) is the discoverer. Mr. Steere received some acclamation in the early days of this newly emerging infectious disease, but as is common with those average physicians such as Mr. Steere, that was the end of his capabilities. However, he has continued to prolong his fame via any avenue he finds available, even if it is one which does not serve the patients and medicine to the full advantange, or in fact, hinders and falsely misleads the medical community with inadequate and dangerous diagnoses techniques, prescriptions and treatments.. or in the case of Mr. Steere, the withholding of treatment from suspected diseased patients (much to their detriment, and often, infirmary and death). This gentleman (if I can be so bold to offer him that title) should not be given any media attention, as he has a personality disorder which decries necessity of attention-getting...and as long as the media permit him to display his outmoded commentaries, you as the media, are also doing a disservice to the American public, by misinformation of the highest rated infectious disease (reportable) now in America, and emerging worldwide. Hopefully, you won't permit yourselves to continue to be waylay-ed by this medical camp..they are trying to hold on to their antiquated and ineffectual dissertations (which were published) so as not to admit to themselves and their peers that they were mistaken..as modern and cutting edge dx and rx are proven, with material evidence, in today's advanced technologies. Thank you for your time, Deborah Smith
Deborah Smith <csure1@erols.com>
- 11/09/99 10:53:34 EST

I also just want to thank you for listening and writing the article on lyme...as with the others I have been suffering with this for over 7 years...as a single mom and trying to work it it very difficult to find support...I travel over 600 miles a month to see my lyme literate doctor...I appreciate your taking the time to review the FACTS. Kriss O
Kriss Ohlhaver <MGerm629@aol.com>
- 11/09/99 08:23:27 EST

Thank you Michael for writing the article on Lyme. My story is like so many of the other Lyme patients. Please help us in any way that you can. Lyme disease needs as much media attention as possible if there is any hope of finding a cure. Thank you for the help you have given us so far with your article, but we need you to continue.
Charise Ott <jandcott@aol.com>
- 11/09/99 02:13:01 EST

I have been chronically ill with Lyme disease and its 12 symptoms for 6 1/2 yrs., having been first exposed 23 yrs. ago. Lyme often co-exists with other infectious organisms, in my case HHV-6 an immune suppressing herpes virus. Antibiotics continue to give some relief, but never a cure because my stomach cannot tolerate their side effects and my inurance comapny will not cover any more IV antibiotic treatments, because of Dr. Steere's outdated and unfounded remarks about the simplicity of destroying this bacterial infection within 4 weeks of antibiotic treatment. I have a 13 yr. old daughter with congenital Lyme disease that is severely disabled. The bacteria caused her brain to stop developing in utero. Take one look at her and tell me Lyme is not a horrendous disease!
Kathy Cuddeback <mstarfarm@se-iowa.net>
- 11/09/99 01:23:24 EST

Dr. Steele is a fraud. I was properly diagnosed with Lyme Disease and got my 8 weeks of doxycycline. If I hadn't gotten both the proper diagnosis and correct amount of anti-biotics I could now be suffering like many other patients with chronic, untreated, undiagnoses Lyme Disease. Shame on Dr. Steele for hurting so many patients and doctors with his insurance company fraud!
Rona Trachtenberg <Rpm17@aol.com>
- 11/09/99 00:42:29 EST

continued certainly we dont. Do the insurance companies benefit, since they dont have to pay for help for us? certainly we dont benefit. I travel to Mexico to buy antibiotics there. I live in America, where I should be able to go to a Dr., tell him my symptoms, and receive the best medication in whatever amount I may need, without the Doctor being afraid of the "medical establishment" calling him a charlatain for "over prescribing".
S. McGrady <goforit@bendnet.com>
- 11/08/99 23:51:07 EST

Mr. Lasalandra and Boston Herald, I have had lyme disease for 2 and 1/2 yrs. now. It all started 10 days after being bitten by a tick in the summer of 1997. I was at the time a healthy 46 yr. old who rarely had a sick day. That all changed. My symptoms started immediately, have never gone away and probably never will due to the political situation that controls the medical establishment. Sore throat, swollen lymph glands in my throat and groin area, arthritis, sinus problems, body temperature of 97.1 to 97.6 (98.6 is considered normal), skin abnormalities such as many liver spots and constant rashes, cloudy vision, extreme fatigue with limb weakness, hair loss,extreme pain in my liver and spleen area, intermittant chills etc. etc. etc. etc. This disease has been termed arthritis by the doctors who dont believe in it....does the arthritis foundation benefit from this? continued
S. McGrady <goforit@bendnet.com>
- 11/08/99 23:44:59 EST

Dear Michael, Well now I finally understand why the politics of Lyme have my physicians so frightened. I must say, it frightens me, as well. I greatly appreciate your article and plan to contact my local politicians to urge for action. I am only 31 y.o and I refuse to let this disease or any person take away my life and my future. If you have any other suggestions about how to fight this, please let me know. Thank you, Michael! Sincerely, Victoria
Victoria <VB@olg.com>
- 11/08/99 21:33:54 EST

As a developmental biologist I, too, inspect studies and treatment outcomes with a critical eye. As a Lyme patient who has suffered with this for many YEARS I also know that some "science" is just politics. How can you ignore PCR testing, brain scan results and other objective measures?? There are MANY other illnesses that are never fully cured or have the potential for relapse..to wit: The chicken pox virus later emerges as shingles, relapsing fever, syphilis, Tb, etc. I have a big problem with those so-called medical professional who either call all that is unexplainable "Lyme" but an even bigger problem with those who insist that concrete diagnostic positives, clinical presentations,and knowledgeable patient documentation is to be ignored only becasue they "do not believe in it".I group them with those who didnt believe the world was round!!!"Educated morons" all!!
Finette Russak <FinRussak@aol.com>
- 11/08/99 19:19:08 EST

hi..this is unreal that there are so many of us out there that have this illness and no real doctors that will help let alone our government...it's really sad for all of us..but thanks for the page i did get more info that i needed...connie
Connie Singer <lacie@ptd.net>
- 11/08/99 18:42:10 EST

I passed out while driving my car and ran off the road. From that point on I started having migraines. I was plagued with arthritis and fatigue so much that my basketball coach had to make the JV players tie my hi-tops as I would be too tired to then play. I was captain of the bball team, played vball and tennis, ran cross country, drum major, junior and senior representative of the band, vice-president of FHA, president of the computer science team, senior counsel on Drug awareness, drama team, Texas Scholar, Junior Historians Representative, Leadership council member, Army Reserve Scholar Athlete and resipient of the Texas A&Ms Mother's scholarhip. After I graduated I was so sick I could not stand up for a shower. I could not wash my own hair. I slept for 4 mos. straight when I was diagnosed with Epstein Barr. I was told if I got tired to sleep and when my body was rested I would not be tired any more. Seven years later I am still tired. My mother had to register for me, I was sick. I wrote a paper my English teacher sent to the Texas Board of Education and was exited to be in college and learn, to write. I was admitted to the campus leadership council. I soon dropped out of school. I got a little better and started to work eventually part time. I went to Los Angeles to start with a modeling agancy but was not able to get out of bed. With my symptoms worsening and my life down the drain after all I had worked for to succeed, I became depressed and attempted suicide. I started to feel better for a few months and then got worse. I had lost sensation in the right side of my body, had tremors so I could not walk, my heart would skip beats and slowed to make me start passing out when I would stand or stoop, my back was in pain, my nose dripped, my temp was 95 in the a.m., I was throwing up in the a.m. I had severe cramps with PMS, extremely bad circulation and swelling of my limbs and TMJ. I started to visit the Emergency room every couple months with severe headaches. When I asked my doc for a referral to a neurologist for the loss of sensation and headaches he yelled at me, telling me when I realized my psychological affected my physical I would stop having headaches. He sent me to a psychologist. I went because I would do anything to feel better. The psychologist called the doctor saying it was not in my head and advised my doc to give me a referral. He declined to my face, but not her's. I saw an article on Fibromyalgia and had all of those symptoms. Starting to read on the Web I found an article titled Lyme disease misdiagnosed as Fibromyalgia. This is, of course after 5 General practitioners who do a CBC, Chem7 and thyroid. Finding nothing they ignore me. One GP would not see my when I had a passed out in her waiting room from pain, she said it was from stress. One GP didn't think I should be tested for lyme because a tick from a deer would have to jump on me. Neurologists would do an MRI and find nothing and then ignore me. One guy told me he did not believe in the whole lyme thing. I went to a lyme doc who had me check off a list and told me all these things were from stress but ordered tests for lyme. She would not let my speak but only answer her yes/no questions. I gave up, tired of going home from the docs crying. I finally found help from lyme people on the web and a good doc just two months ago. He referred my to a pain specialist who negated my lyme diagnosis and second opinion. He wanted to shoot me up with steroids, which luckily I knew could kill someone with lyme. I lost my dream of going to college. That hurts the most. I could have been somebody, my doctors would have known. I never knew what lyme disease was and thought nothing of being bitten at least five times in the woods where I lived and ran daily. I hurt and want more than anything to be able to think. I was tutoring in Calculus and now I cannot subtract. I could run 8 miles and now I cannot get out of the bath tub. I wrote a thesis published in Texas Monthly and now cannot finish a thought process. I could dream of my future and now I fear it.
Amber <putnam_amber@hotmail.com>
- 11/08/99 18:00:30 EST

Used Rocephin for six weeks AFTER they found out that I DID have Lyme Disease . It took Doctorts several week to discoover that I had Lyme Disease
Genevieve W. Schultz <wvschultz@aol.com>
- 11/08/99 16:07:49 EST

Mike: Really enjoyed your report on the potential for growing heart valves. The next question, however, is the potential for growing complete hearts. Has anyone commented on this possibility? Thank you
Robert J. Donovan <robert.donovan@fmglobal.com>
- 11/08/99 14:59:06 EST

Thank you for your informative article on Lyme Disease! I was bit by a tick 16 years ago and within a day or two my life was forever changed. I just recently started reading up about Lyme and figured out why I had had a steady decline in my health since 1983 (Fibromyalgia, EXTREME Fatigue, Dizziness, and a long list of other symptoms). I don't have health insurance to see a Dr. but even if I did they are so hard to find because of this so called "Dr"! Nobody wants to treat it because of him!! Thanks for bringing this into the light! Sincerely, Valerie Green
Valerie Green <NOSPAMmomof4z@angelfire.com>
- 11/08/99 14:07:24 EST

Thank you, Michael, for your coverage of Dr. Allen Steere and Lyme disease, a miserable illness which (as it turns out) is both difficult to eradicate and easy to get. Of course one would never know it to listen to Allen Steere or read his articles. For him Lyme disease is easily cured and more of an annoyance than a disease. I've had Lyme disease for more than 15 years. Of course, thanks to the treatment suggested by Allen Steere, I never got more than a token dose of an antibiotic and suffered for years and years going from doctor to doctor, spending lots of my insurance company's money (and mine too). Although I often mentioned to doctors that I had tested positive for Lyme disease, I was patted on the head and told that it couldn't be Lyme any more - I had been treated for it . Then in 1998, I got a new tick bite with a bull's eye as big as I was, and I was given another short course of antibiotics. Three months later, I was still really sick and the doctors I went to were clueless. Eventually, I had a doctor run another Lyme titer test which came back completely positive. Great, I thought, now I know what it is and I will get treated. W-R-O-N-G!!!! Allen Steere's teachings had so permeated the medical community, that doctors I went to said that the test must be a false positive. NO WAY could I still have Lyme disease after 3 weeks of antibiotics. I eventually found someone who would treat me with a longer course of antibiotics (approximately 6 months) and I improved dramatically. I know I will need additional treatment in the future, but I will have to find a new doctor, as my current one is not interested in treating me further. Showing up at NIH last week was the only option I had to show that what this man is teaching is both wrong and hurtful. It is bad medicine to promote a course of treatment that leaves countless people under treated virtually without recourse. What's to celebrate??
Penni Korb <pkorb@excite.com>
- 11/08/99 09:46:25 EST

After having led a very active life,dancing,mnt.climbing,caving,ect.At 29 I was bit by three hidden ticks,in my navel,while hiking in Mamoth Cave National park.I found them days later,when the site became very red,inflamed.I had extreme pain in lymph nodes,in the bite sight area,Followed by allmost every Lyme Symptom.I was diag.8 years later after extreme torture,for years.Three months IV.Rocephin helped but didn't cure,the Lyme.I now take oral antibiotics,about 6 months a year.And every erbal remedy I can afford.I can hardly work,and suffer because I do.I fear that someday I will have a terrible crash,driving to work,impared by blindness,MS type paralasis and weakness.Sometimes it is hard to hold down the brake petal,and I have to shift into park at trafic lights.There are good times allso,but the Lyme allways comes back. MADDOG
M.Bowser <maddog@infinet.com>
- 11/08/99 05:10:10 EST

Lyme disease is an illness that goes way beyond a disease. It is like serving a life sentence with no appeal. We must learn to live with constant pain in our bodies, pain from family members and friends who don't understand, pain from doctors who call it a fad, pain from insurance companies who won't approve your needed medications; or who cut off your disability payments, pain watching the doctor who helps you get harrassed for treating you, pain from lonliness, pain from losing your career, pain from spending all your money on treatments that at best can put you in remisssion, pain from keeping you from having children, and it goes on and on and on. Thank you for your interest!
Karen Strandberg <KarenLee7@aol.com>
- 11/08/99 03:05:23 EST

I attended the NIH Protest against Dr. Alan Steere being awarded "Astute Clinician Status." How did I come to that personal decision and how did I get there? My Lyme story starts many years ago, my stepson experienced a knee swollen to the size of a basketball which was diagnosed as Lyme Arthritus. He received infusion therapy in-home which cost $1000 per day, for 81 days. Luckily the insurance company did pick up 80%. Unluckily the insurance company only picked up 80%!! In those days there was quite a bit of price markup going on and eventually the FBI did get involved in investigations of these types of situations. To me, the Lyme Arthritus, the swollen joint, was something to be avoided at all costs, but who knew? Three years ago I didn't seem to have any risk factors for Lyme. The most outdoor work I did was working in my vegetable garden, over 1000 square feet in a suburban NJ environment. Starting May, 1996, I began getting sicker, sicker, sicker, and making rounds of many doctors with complaints too numerous to elucidate. Finally in July, 1998 I was awakened from a dead sleep with a sharp stabbing and crushing heart pain so strong that I could not breathe. Then my heart stopped. Yes, stopped. And I knew that it had stopped. I prayed for many seconds, begging "Please Beat" and then finally it gave several irregular and uneven beats and started again. I continued to experience heart problems for over a year. My resting EKG;s were normal, so the doctors said. For the year following that, I went from doctor to doctor, saying "I think I am dying, I feel so badly in so many ways." I trotted out my list of symptoms each time. I was patronized, consoled, told it was all in my head, life with children can be stressful, lose weight, eat less red meat and cut desserts (I do neither), and mostly "here, take this antidepressant." I tried every antidepressant known to humankind, and none worked, and I kept saying "but these are PHYSICAL problems..." and no one heard me. In desperation I went to my OB/GYN, as her last patient for the evening, and she was distracted due to personal situations. After she left for the evening, as the nurses drew blood, I told them that she had authorized Lyme testing. They questioned me and thought to call her but she was out of reach, in her car. Finally they accepted that "she said to after she had written the orders" and they threw the test on. I must have been divinely inspired because to me, Lyme was that huge Basketball Knee of my stepson. Not the anxiety, panic attacks, dizziness, nausea, foot and ankle pain, swollen lymphs, swollen ankles and legs, distended abdomen, 50 pound weight gain on the "air-fern" diet, and constant, unremitting exhaustion worse than I had ever experienced when 9 months pregnant with 7 children in my home due to foster parenting! The exhaustion became so overwhelming that I only had a few good hours a day, and I tried to save them for face time with my children. An hour or so in the morning, and then late afternoon/early evening when they were home. I was bedridden for the rest of the day and night. My marriage deteriorated. To this day my husband does not accept my illness, despite many many highly positive results. After the office of the OB/GYN called my daughters to tell them my tests came up positive and I returned home to find "Mommy I think you have cancer" I called to find the Lyme testing, which I had forgotten about, was highly positive, not even borderline. In the month that followed I spent much time trying to find a doctor who knew about Lyme disease. Eventuallly I was referred to one over an hour from my house but could not get an appointment earlier than two months, so I did make that appointment and meanwhile went to a super specialist, an Infectious Disease Specialist affiliated with Mt. Sinai hospital. This doctor waved aside my list of symptoms, and told me that most of what people think of as Lyme IS NOT, in fact, Lyme disease. That Lyme disease can be cured in 30 days, maybe 6 weeks for serious cases. After I had explained that my foot and ankle pain was so severe that I was often unable to walk and my children and my husband had to "work my feet" rubbing and twisting and massaging them, the Good Doctor proceeded to tell me that I had early stage Lyme disease since I had no joint problems!! He put me on a sub-standard dosage of Doxycycline, 200 mg. per day. This would not cure a cat! The short version of the story is that eventually I found my way to the original doctor as time passed, and he treated me cautiously, and then finally not at all, as I believe he was frightened, both by being dropped by my insurance carrier for unspecified reasons, and then by the harrassment of a leading Lyme Disease physician, Dr. Burrascano. I was referred to another doctor who had no openings sooner than a month. My previous doctor would not even prescribe antibiotics to hold me over for that month and so I went medicationless. While I was under treatment with Flagyl on an experimental protocol ,(it is a medication used for STD's, which are spirochetes and Lyme is caused by a spirochete) I was making some significant progress although there were difficulties still. My heart difficulties diminished, I then had a full set of heart tests done (previously I had not wanted to hear the bad news) and the results were very good. Finally my heart difficulties had ceased completely, my lung inflammation had stopped, I had stopped huffing and puffing, I was conscious for a good portion of the day. I often had days where I could move without pain and begin to plow through the accumulation of neglect our home had experienced. All of this changed, reversed, shot in the opposite direction within two weeks of being off medication. Thus I became angry, in making calls to find a physician willing to take an agressive approach to Lyme disease treatment, to find that many were quite frightened to even see a Lyme patient and would prefer not to. Thus when the opportunity to make a statement in protest at the NIH arose, I felt like I had been divinely called. Without overelaborating, I travelled there by car, by Speedline, subway, train, Metro, and shuttle, with considerable walking interspersed. My account of that day in NIH history is recorded earlier in this Guestbook. Since I returned my e-mail has been flooded by people who wished they could go, who were afraid to go, who were afraid to publicly post their opinions, etc. As I sat composing an article the following morning, The Angel of the Protest smiled on me, and I received a call that a cancellation with my new Lyme doctor had opened up. I went the following day and received the results of my most recent Lyme testing, a very thorough panel run 2 weeks prior. After 6 months on antibiotics - - - I am still HIGHLY HIGHLY positive in all aspects. I believe a more accurate word might be INFESTED. Knowing this, knowing Dr. Alan Steere's "overdiagnosed/overtreated" take on Lyme patients, knowing his "30 days antibiotics is enough" philosophy, knowing I have now lost an additional 8 months to this disease on top of 3 years trying to get doctors to diagnose a medical problem with very obvious symptoms, I am so VERY VERY grateful that there were 35 other brave souls who put aside all of their very important work and obligations and marched with me at the NIH to draw attention to the lack of adequate research, funding and treatment for Lyme Disease, and to charlatans being awarded prizes for cooperating with insurers and the Lyme Conspiracy to broadcast misinformation concerning the true status of Lyme Infection and disease response to treatment. OUr many groups of Lyme disease sufferers will be acting in coming months to increase public awareness of this vector-born threat to human health which is rapidly outpacing all other infectious diseases currently known to humankind. The question, Michael, that you and all other news experts should be asking is "Why the Coverup?" What conspiracy exists to keep this epidemic low profile, undertreated, and unseen. Why physician harrassment in every state with a preponderance of cases. How do insurance carriers persuade state health agencies to attack caring and compassionate Lyme doctors with charges of Fraud. Lymes is the New AIDS of the New Millenium. Only with appropriate press exposure do we have any hope of bringing needed resources, public attention and government intervention to this epidemic and to those who are shamefully profitting from engaging in the conspiracy to keep the public in the dark.
jeannine der Bedrosian <Jeannine Der Bedrosian>
- 11/08/99 01:49:17 EST

I would like to thank you, Michael for taking an interest in our plight. I have been suffering with Lyme disease for more than 45 years. Unknowingly, I passed it to two of my children and had to stand by helplessly watching them suffer the physical and emotional scars of a disease not yet named. My second child died because patronizing doctors said, "Do it our way," they did, it was too late. Arrogance and stupidity are the only reasons I don't have three living children today. I have been living with as much illness, chronic and acute pain a victim of this disease could possibly suffer. The bacterium has slowly, methodically, and severely attacked every major organ in my body. My story is much too long and painful to relate here. So I will pose these questions. Why do "the Powers that Be" continue to stifle advances in the studies of chronic Lyme, better testing and a cure? Cured in twenty-eight days? No such thing as chronic Lyme? If this were so why has an unsafe "FDA approved with reservations" vaccination been foisted on the American public? Are we a larger part of the Tuskegee Experiment? I don't know what the motives of the Dr. S's of this world are . . . whether it's greed or delusions of omnipotence, they should not be applauded and rewarded for their behavior but should be tried and convicted for experimenting on the human race.
Liz M <L10Graham@aol.com>
- 11/08/99 01:28:10 EST

My 10 year old daughter tested positive for lyme. The treatment suggested was 10-14 days of antibiotics. I reasearched and researched and had to choose a course of treatment for her. Ten days of treatment which may cure, or long-term treatment that will aggressively cure it. Which would you choose for your child? What would Dr. Steere choose. Also, after switching doctors, it was found that my daughter also had coinfections from the tick bite. The original prescription would not have treated the erlichiosis or babesia. I never knew much about Lyme before this. I have always trusted y pediatrician to know best. BUT, in this case he didn't, and still doesn't have the knowledge. Comments like DR. Steeres are an insult to my daughter and her illness. She is doing great now. But I don't think she would be if I hadn't found a knowledgeable doctor.
Cathy <mugface@epix.net>
- 11/07/99 22:34:48 EST

Michael, Thank you for your interest in the Lyme Disease Issue. My entire family suffers with chronic lyme disease, and I am a young mother who has to live with the reality that I gave this horrible disease to my two prescious children during my pregnancies. I too went many years misdiagnosed wtih psychiatric disorders. I was a very active person: competitive gymnast, varsity softball player, and a dean's list student in college. When I became chronically sick and almost paralyzed in my legs I was told that it was due to depression and anxiety. My children were premature and diagnosed with many health disorders including: siezures, heart, bladder, kidney, growth and thyroid disorders. Finally, after many years we got a correct diagnosis and blood cultures to prove it. My children improved dramatically on antibiotics. We desperately need our voices heard with this issue. The doctors are in the dark when it comes to the severity of this disease and its clinical presentation. Please help us get our voices heard. I personally know people who have died from lyme. THE TRUTH NEEDS TO BE HEARD AND UNCOVERED. THE PUBLIC DESERVES TO HAVE AN ANSWER TO THEIR MANY MEDICAL PROBLEMS INCLUDING CFS, FIBROMYALGIA, MS, AND THE MAIN CAUSE OF MANY PSYCHIATRIC DISORDERS. LYME DISEASE IS DESTROYING LIVES.
Karen and Scott Sallee <ssallee@desupernet.net>
- 11/07/99 20:22:16 EST

Michael, I read your article with interest as a Lyme Disease patient for 10 years. It needs to be brought out to health care providers the importance of not only using a clinical diagnosis but the need in so many cases of continous treatmentwith antibiotics. Like so many otherLyme patients I was not diagnosed properly even with an initial borderline positive and history of a bulls eye rash. Had I been given a course of treatment I might now be cured. As it is I am on antibiotics for a few months at a time and always seem to relapse. We need to get the word out to doctors to fight the HMO's and opinions of some and treat their patients as they see fit. How sad for the sufferers of so many diseases when treatment must be dictated by the few
DW <DW126@hotmail.com>
- 11/07/99 19:46:14 EST

Dear Mr. Lasalandra, Thank you so much for your excellent article on Lyme Disease. As you know, I was involved in organizing this protest against Dr. Steere. The telephone calls I made to dozens of Lyme Disease patients, left me heartbroken about the incredible suffering that has largely been unnoticed by the media. There are so many other issues about Lyme Disease that remain unpublicized. Few people are aware of the discovery that the Lyme Disease tick carries several other infectious diseases and that many Lyme Disease patients are further disabled by lack of diagnosis and treatment of these diseases. I recently found a physician who was willing to treat me aggressively for Lyme Disease and to test for and treat the co-infections. The result is that for the first time in years I have had a few weeks in which I am no longer completely bedridden. While I remain very ill and still unable to get out of bed much of the time, and while I have come to accept that this is a chronic relapsing illness, I am grateful for the days that this physician has given me. This physician was recently reported to the Office of Professional Medical Conduct for professional misconduct for overdiagnosing and overtreating Lyme Disease! The physician who misdiagnosed me and then undertreated me for seven years before I was finally (but too late) treated aggressively by another MD is still happily practicing. Because of the NIH and CDC and their backing of Dr. Steere's conservative treatments, she is not as vulnerable as the doctors who finally treated me. The fact that I and others have spent years in bed and will probably continue to do so, does not seem to make much impact on the Steere medical dogma, dogma which is still actually medically controversial with much research literature to oppose it. We need as much help as possible in publicizing our illness. Most of us are too ill to be able to go out to protest. Some of us can go on a good day, but those are so few and far between that it is difficult to be able to build a movement on it. Meanwhile, research is not being done to find a cure, and thousands of people are being infected each year who will be underdiagnosed and undertreated and join the ranks of the chronically disabled. Thank you so muc, Ellen Lubarsky
Ellen Lubarsky <ellenlu@webtv.net>
- 11/07/99 17:55:56 EST

Michael, Thank you for your article on the Lyme protest. I am a chronic lyme sufferer and the only treatment I have found helpful over the years is prolonged antibiotic therapy. I just got out of the hospital for the second time in a month because insurance will not pay for my Lyme treatment. I encourage you to continue to follow the Lyme protest story and to continue to write articles on Lyme Disease. Thanks again!
Cheryl =o) <cheryl@aero-vision.com>
- 11/07/99 17:37:46 EST

People whose lives are devastated emotionally and financially because of a tick bite; a medical community that is not educated - or is afraid - to properly diagnose and treat Lyme disease; woefully inaccurate tests; insurance companies that take advantage of these tests to deny treatment - these are some of the realities that our organization and others deal with on a daily basis. Volunteers across the country devote unbelievable hours of their time trying to help victims of Lyme disease. Why? Because there is no one else to do it. The medical community and health departments on all levels who had our trust are not there for us now. Only Lyme organizations and a handful of courageous physicians are helping the ever-increasing causulties of this disease. With the persecution of these few physicians who are putting their professional and personal lives at risk, our already limited resources may soon be depleted. Media coverage is essential for focusing national attention on the true story of Lyme disease . Someday, someone is going to blow this story wide open. Will you accept the challenge and help us, Mike?
Sharon Smith, President Lyme Alliance, Inc. <sjsmith@frontiernet.net>
- 11/07/99 15:30:16 EST

Thank you for your interest and concern regarding Lyme Disease. What a mess. As a family, we have learned so much from the experience of having a daughter with late stage Lyme Disease. It became late stage because of insufficient or incorrect information by physicians. At age 17 and a senior in high school, her world became one of needles, operations, hospitals, and pain. Because of the nature of the disease and the unbelief and confussion created by people like Steere, Jillian suffered innumerable assaults against her both physically and psychologically by medical professionals. Had she not been such a strong person with a large support system, this young vibrant life would be over, she would surely have taken the path so many with this disease have chosen. Death isn't the worse thing that can happen to a person once you have lived with Lyme and the reactions to it. Even while she was lying in an ICU bed, in a major Eastern medical center having been flown there in a helicopter with 24 hours to live if she didn't respond to certain meds, she had two "doctors" tell her she needed a psychological evaluation. Had they read her chart they would have noticed one in there which said any movement in that direction would be a complete waste of time because this young lady is quite healthy mentally. We have lost total respect for the medical profession and the pharmacutical companies as a result of this wake up call for us. The treatment Jillian has received at the hands of the medical "helping" profession has caused as much damage to her and her family as the disease itself. I hope that medical schools take a long truthful look at the products they have and are spitting out into the community and forcing onto the people. We are actually looking toward lawyers now to save us from the doctors! I hope this is your wake up call medical world because you, not the disease, are becoming the enemy to many of us.
Sandra M. McKeehan <SanMcGeorge@aol.com>
- 11/07/99 14:32:37 EST

I have read your article about Doct. Folkman's Research. My Father is sick of cancer. Please Help me to find a right treatment
Gianni Consorte <gincon@tin.it>
- 11/06/99 22:47:06 EST

In Maine we are facing cuts of 77 positions and there is an uproar of concern. Since Veterans Day is next week- won't someone PLEASE ask the presidential contenders what their plans would be for the VA health care system-close us down or continue the slow strangulation or keep the promise??? Check out Maine Kennebec Journal 10/28/99 for our response to cuts....
Helen Hanlon <Handkraft@aol.com>
- 11/06/99 21:32:34 EST

The Reduction in force lists had to be handed into the VISN by October 22nd. The Procidence, Manchester, Newington, and Togus VA unions have all seen these lists. Most are close to 100 positions. Mr. Malphurs , the interum director is considered a "head hunter." Bad times are coming for a veteran population that is already suffering from neglect due to shortages!
Laurie <lawor16@aol.com>
- 11/06/99 21:00:02 EST

Mr. Lasalandra, thank you for your efforts in the research on Lyme Disease. I am a mother of 2, and worked hard for 20 years. I have late stage, chronic Lyme Disease. It took 8 months, and 6 Doctors to get an "extremly positive" test result for Lyme Disease. Lyme Disease is not new. It can be researched as far back as 200 years, or so. So, why is it so difficult to obtain the proper treatment? We can send the Space Shuttle out into orbit, and bring it back, but we can't diagnose Lyme Disease. All we want, as Lyme folks, is to feel better, to rejoin the life around us. The few, thin spread, Lyme Literate Doctors are our only saving grace, or even hope of feeling better. The political issues here are so minor compaired to the damage done by Lyme Disease. A "Lyme Disease" diagnosis carries a heavy and dark cloud, probably forever, for the victim. This may not be a true comparision, but, "Viet Nam" carries a heavy and dark cloud, forever for the Veteran, also. I know, my Husband is a Veteran. There are several simularities between the two. Things don't have to be so complicated.
SS <sstanton@jps.net>
- 11/06/99 18:24:27 EST

I have had chronic lyme for at least ten years, possibly longer. I did not respond to 4 weeks of antibiotics but have respnded to much longer courses. When I go off medication for any length of time I become very ill again.My kids also have had Lyme and have had to have long term treatment. This is a much more serious illness than Dr. Steere's camp wants to admit. Many folks are suffering , especially here in Jersey. Thanks for the forum. Ruth Genne, Flemington, NJ
Ruth Genne <rufie710@rcn.com>
- 11/06/99 18:10:54 EST

Michael, Thanks so much for reporting on the Lyme/NIH/Steere protest. I hope that you will continue to follow this story. You will hear that this is not a life threatening illness, rarely causes death, but how does anyone know this to be true when there is so much misdiagnosis and terrible testing? How often does someone die of respiratory failure or heart failure without known cause? Please realize that we are the informed minority. I believe some people are living and dying with Lyme without ever being diagnosed. I once read that more illness is misdiagnosed than diagnosed. I believe this statement. I had six years of late stage Lyme, before diagnosis by the 13th doctor in 1993, explained to almost every doc that antibiotics were all that helped me, but I was continually refused or given no more than ten days of treatment. I am college educated, caucasion, middle class, always had medical coverage, and could often pay out of pocket. God help the uneducated,poor, elderly, minority, etc. These people rely on the media to educate them. Please do so and responsibly, someone has to start reporting the LYME TRUTH. Susan Mac Namee
Susan Mac Namee <aqua920@aol.com>
- 11/06/99 17:07:41 EST

Hello Michael, Thank you very much for your interesting article about lyme and the current politics of it. I too have chronic lyme disease. i am from the RHODE ISLAND area, and it seems very underated in the news media. The story you presented is only the tip of the ice berg, and an investigative type series of stories would enlighten your readers and of course, sell newspapers. I know your article has gotten many responses, and this as itself would warrent more stories pertaining to lyme disease. I would be happy to answer any questions you may have on a patient's perspective. Thank you again, KAREN from R.I.
KAREN <SPIRORAIDER@webtv.net>
- 11/06/99 16:01:17 EST

Well, in my house there is no love for the Boston VA. Although I can feel for those being laid off. My poor mother was so vicitimized after 16 years of loyal service to that insitutiion, but in about 1993 - a young "white" supervisor in her ward came in angry one shift and started yelling about what "those nurses" should do with :their Black asses." My mother was one of those nurses, and perhaps the only one within hearing of his remakrs. She was greatly offended. He was younger than her youngest son, my little brother and had no business nor authority making such remarks. My mother complained to his superior, who told my mother not to complain about the guy, that he was a "good guy." So she went over their heads and filed a complaint with the union (federal) - who before they began any investigation, went and told the guy about her complaint. Apparently he had "friends" in the upper echelons of that union, and from that day forth, for four years - this guy subject my mom to the most cruel reprisals. Even his supervisor participated. I have written her sotry and the matter went before a federal administrative law judge. During all this time, under such strees, my mom became ill, and had two major surgeries. When she recovered and went back to work, this guy staged a fake patient abuse incident and demoted my mother to being a pharmacy delivery person, knowing that she had doctor's written instructions that she could not do much walking. We have since retained an attorney who pushed the matter before the EEOC and now it is in federal court. Personally, I think the country should know what happened their to such a beautiul woman as my mom. On the walls of our living room are all sorts of awards for performance and merit she earned in her years their. But these evidently meant nothing when she accused a white man of making racist and sexist remarks at her or in her presence. She was forced to retire early as she could not perform the duties of a pharmacy delivery person, and even as she was transfered to another department on another floor, this guy was always at her new department talking to he new supervisor and co-workers, telling them god knows what. Personally, I pray for god's curse on that insititution, and this entire nation for things such as this. Such as I myself suffered at the Central Artery Tunnel Project and then at MIT. My parents, their parents and yes even my generation still suffer from injustice in the workplace and in this society in general. If you would like more info on what happended to my poor mom, please e mail me, and I will forward the docs I have, or put you in touch with her attorney. One day, it will become public. I will see to it. That people know the kinds of injustices that go on everyday- though we try to pretend that everything is okay in America. Thank you for reading my words. T. Poindexter
Thom Poindexter <sonsofafrika@netscape.net>
- 11/06/99 15:48:44 EST

We, French Lymies, suffer a lot from the Alan Steere's position, which is followed by the French infectious diseases specialists. Having received the basic treatments Mr Steere recommands, and being still symptomatic, I was declared hysteric, when I was only a chronic Lymie needing more treatment. As a consequence, I lost everything that once made my life : health, friends, family, work, income, reputation, and I have been fighting for years now to survive and get an accurate treatment (which is still not the case). I have to beg all the time for medications, always given in too small quantities. Though finally I am more lucky than most of my Lymie compatriots : having studied sciences once is probably the only reason why I am not in a wheel-chair by now.
Sylvie, from France <rapetou001@aol.com>
- 11/06/99 15:16:33 EST

I am a Canadian (in Winnipeg, Manitoba) with Lyme Disease. My husband and two of my three daughters also have Lyme. I was diagnosed with probable MS despite the plethora of symptoms that didn't fit with "typical MS" (heart palpitations and severe chest pain, stiff & grinding neck, vasculitis, rash, etc.). It was only after presenting several doctors with enough information to support the possibility that I "could have" Lyme Disease (despite seronegativity) that I received treatment. Had it not been for the internet, and all of the fabulous people out there like those who have written to you about their experiences with Lyme, and those who courageously headed out to protest, I would never have received any form of treatment. So thank you to all of you for your dedication to helping others, and for your heroic efforts! As Canadians we are told that we cannot have Lyme, because the vector does "not exist" in our area. We were only acknowledged because we had traveled extensively within the United States. An interesting 'ticbit' of info.....oooops I meant 'tidbit' - our nextdoor neighbours' dog had a tick on her the other day, and after urging them to send it in for analysis, we had a positive ID returned on Ixodes (deer tick) yesterday! We have to wait for the lab analysis next week regarding infection. Fortunately (as odd as that sounds) our doctors do not have any experience in treating Lyme, and have not been exposed to the teachings of Dr. Steere. We hope that our Canadian doctors can begin to learn how to treat this disease that has changed our family's life forever through reviews of objective medical literature, and through listening to the patients. Thank you for your article, and for providing the opportunity for people to share their stories.
Kathy Crang <kcrang@ms.umanitoba.ca>
- 11/06/99 14:20:37 EST

Dr. Steere is a rheumatologist, not an infectious disease specialist, so it is odd that he is testifying in court about the presence or absence of a bacterial infection. His ideas are backed by most studies, however, most studies are old studies. The most recent studies show that Lyme bacteria are hard to kill because they convert to a dormant form that is resistant to antibiotics. Persistent Lyme infection has been proven in peer- reviewed studies of patients by using PCR DNA sequencing. Many people have suffered a host of serious, debilitating medical problems due to inadequate treatment, and Dr. Steere's disproportionate influence has contributed to this suffering.
Mary J. Wirth <mwirth@udel.edu>
- 11/06/99 12:14:33 EST

All I can say is that this Dr. has not had the disease himself! After fighting recurrent cyclic episodes for over 2 years - I continue to cycle but the symptoms are finally less severe and the cycle is shorter. Where would I be without an excellent physician who has worked dillegently with me in this battle?! I have cardiac changes, eye change, joint deterioration - all of which were not present before those deer tick bites (2 at same time) - received while in a building! This physician needs to touch bases with reality! This is a nasty disease that has devestating results without appropriate treatment!
Joyce Oldaker - Akron, Ohio <JBOldaker@aol.com>
- 11/06/99 10:36:30 EST

Local doctors said I could not have Lyme disease because "There is no Lyme disease in the area". Those doctors were wrong - I found county reports and U.S. Army studies that proved Lyme disease indeed existed in the area. See the story of my battle with Lyme disease relapses even after conventional IV and oral antibiotic treatments at the link below. Lyme disease personal history for Art Doherty http://www.geocities.com/HotSprings/Spa/6772/my-lyme-disease-history.txt Also see: Lots Of Links On Lyme Disease http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html Art Doherty Lompoc, California
Art Doherty <doherty@utech.net>
- 11/06/99 10:33:13 EST

Regarding the theory that Lyme disease can be cured with 4 weeks of antibiotics, I tested positive for Lyme disease after 3 months of antibiotic treatment and again after well over a year of additional antibiotic treatment (oral and IV). How can anyone claim that I'm "cured"?
Bruce Goulding <BRGOULDING@AOL.COM>
- 11/06/99 10:16:08 EST

Thank you for keeping us informed about the endostatin phase one trial. I hope that this is the drug to erradicate cancer in humans. Good luck and God bless
George Lucas <georgejjl@aol.com>
- 11/06/99 09:58:43 EST

I am a disabled 23 year career emergency physician who never missed a day of work until I got tick borne diseases otherwise known as Lyme disease. It started with profound fatigue, creaking joints, headaches and ringing in the ears but quickly spread to the horrendous pain between the shoulder blades. Surgery for neck disc disease and then steroids led to a rapid neurological spread of the disease. All the manifestations of the disease were missed despite seeking help from a multitude of specialists. Finally, after three years of wheel chair trips to psychiatry, the correct diagnosis was made in Boston by a compassionate and knowledgeable physician-Dr.Donta- and I have recovered incrementally but steadily following his care. Throughout this disease I can only attest to what all the other victims are stating- the disease is common, it is often much more neurological than joint disabling, the fact that it is a spirochete more advanced than syphilis or leprosy goes unrecognized, it is a persistent infection just as these cousins are, there is adequate testing available but it requires a diligence and expense that doctors looking for a "yes" or "no" test can't understand, and it requires a diligent multifaceted treatment plan aimed at many coinfections, rehabilitation of metabolic and endocrine havoc from the microbes, emotional support, symptomatic relief, and physical therapy. The two greatest errors made by Dr. STEERE et al for victims are that an ELISA test can determine who has the disease and who doesn't and that short term monoantibiotic treatment is effective. He continues to state this missinformation despite a multitude of studies that confirm persistent microbes hang around persistently. There is no study demonstrating cure or eradication with his short term treatment. In fact, short term treatment with the wrong antibiotics induces chronic disabling states of infection in the patients he dismisses. The concept he eschews of persistent immune response is certainly true- but not astute- what long term infection isn't involved with and mediated by a complex immune response? He can study this fact forever with our tax dollars- but it won't get anyone better. Now writing that the disease is overdiagnosed and overtreated- that is a different matter and does not involve science. Please stop giving time to this man and focus more on scientists such as Preac Mursic, Brorson and Brorson, Donta, or Brian Fallon to name a few. Of course, Andrew Balfour said most of it nearly a century ago, 1911, in the British Medical Journalwith the article on early observations of spirochetes and granular forms. He even mentions the importance of ticks!! But of course Dr. Steere discovered the disease-what a joke. He has made major errors at every step of the way and victims continue to suffer due to his mistakes. Please put him back in some dusty library with a pile of studies from Europe over the last century so he can catch up to reality.
Harold A. Smith M.D. FACEP <haroldsm@sunlink.net>
- 11/06/99 09:23:37 EST

Mr. Lasalandra, thank you for reporting on the protest of the NIH's "Astute Clinician" award that was bestowed upon Allen Steere, M.D., this past Wednesday in Bathesda. I would like to share some of my thoughts with you on this subject and Lyme disease in general. Currently, there is no gold-standard test that can delineate whether or not a person has an active Lyme infection. Until such a test does become available, I think it is unreasonable for Dr. Steere and like-minded doctors to maintain the hard-line position that Lyme disease is easily cured with 30 days of antibiotics. On what do they base their theory? Could it be that they haven't been made aware of the numerous reports and peer reviewed journal articles demonstrating persisting infection following antibiotic therapy? Well, I'm fairly certain they're not basing their hypothesis on the numerous complaints coming from their patients either. It defies any reasonable logic for there to be so many people coming forward telling the same story over and over of how they continued to be sick well beyond one month of therapy but that long-term treatment provides them with real benefit. In the absence of a gold-standard test and with the CDC acknowledging the unreliability of currently available tests with their recommendation that Lyme disease be a clinical diagnosis, it is unconscionable for doctors, most especially an "astute clinician", to continue to ignore the cries for help that have been coming from this ever-increasing patient population for many years. Finally, I would like to touch on another disservice Steere et al provide with their assertion that Lyme is difficult to acquire. Please allow me to share the most recent numbers tallied in my home state. During 1998, the State of Connecticut received 3,435 new case reports of Lyme disease, however according to Matthew Cartter, M.D., Connecticut Department of Health, the best estimate is that for every case of Lyme reported, nine others go unreported. This means there were approximately 32,000 actual new cases in our state last year alone. With Connecticut's population at 3.2 million, these numbers indicate that one out of every one-hundred state residents (one percent) contracted the illness during 1998. If you were to add 1998's total to the overall number of Lyme cases that occurred prior to 1998, you can quickly appreciate the scope of the problem. I suspect that my Massachussetts neighbors as well as many other states' residents are living in areas that are similarly affected. As you can see - Lyme disease is not so difficult to acquire. And as the many who are not disgnosed early and appropriately treated can attest, nor is it easy to treat. Despite incontrovertible evidence to the contrary, Dr. Steere has apparently chosen to defend his position to the death. I think that since he's painted himself into a corner at our expense, it's only fair that we be there for him just as he has been for us- Everybody grab a brush! Brian Carroll - Lyme disease patient circa 1994
Brian Carroll <BCLyme@aol.com>
- 11/06/99 08:47:17 EST

I was wounded in Viet Nam. I am 100%disabled. It pisses me off everytime I hear about another VA cutback.Medical treatment in the VA is deplorable now. What will it be like when they make additional cutbacks. I feel like such a sucker to have fought in that war. It really breaks my heart!
Edward M Buckley <EdBuckley5@aol.com>
- 11/06/99 08:17:48 EST

When my primary care physician finished with short course of treatment, I called Dr. S's office because I still felt horrid and my MD treated me as if I was crazy. is response "send blood Sample" I did...He said I did not have Lyme...so...I made contact with Yale through inside source...response when I went there ... no swollen joints...you don't have Lyme...finally went to MD recommended by co-worker who does clinical studies here on Cape Cod. Yes I have it ...have had it for a long time...I have been through many bouts of oral and IV therapy...at least someone listened. Meanwhile, it has nearly ruined my life, but nowhere near as much as many of your respondents. I do not get the Herald .... just read some stuff on the internet. I hope you will try to get your articles out through other media. But...thanks for at least being on top of this subject.
Valorie Rand <Valorie_R@hotmail.com>
- 11/06/99 04:12:14 EST

Dear Michael: I wrote a response to your very much appreciated article the day of the Steere talk but somehow it never appeared here, so I will try again. My history includes two incidents for which I was treated for Lyme disease previously. In 1991 I found a bulls-eye rash on my thigh. Though I didn't feel sick at the time I brought it to the attention of my doctor during a routine yearly exam. He told me the tests were erratic, so treated me with a 10-day course of doxyclycine, "just in case" I might have Lyme. In 1995 I discovered what I thought was a new mole, which happened to fall off in the shower four days later. Again, I was treated with 10 days of doxyclycline. Again, I was not sick at the time. The middle of April this year, I had the LymeRix vaccine, thinking it would be a good idea, given my history, and because we have so many deer where I live. Two days after the vaccine I developed a severe headache. About two days after that, I got a stiff neck. To make a long story story short, about six weeks after the vaccine I was so sick I thought I was going to die. My head pounded all night long, and I felt like I was either going to have a stroke or a heart attack. I had rapidly gained weight; my stomach bloated and my ankles swelled. My mouth was so dry my tongue nearly stuck to the roof of my mouth and I had thrush. My eyes and skin became terribly dry as well. My stiff neck never subsided, (and still hasn't to this day). My gait changed and I could barely walk in a straight line. My arms felt exceedingly heavy. The need to sleep overwhelmed me. In near-desperation I went to my former physician and asked to be tested for Lyme. The results of the ELISA and Western Blot came back negative. I had to beg to be treated for 30 days. He made it very clear that that was as long as he could prescribe antibiotics for me. I developed a 102 degree fever, had horrible "electrical" experiences, awful night sweats, erratic blood pressure, heart palpitations and all kinds of other ailments, but eventually, because of the antitiotics. I improved dramatically, and even dropped a total of 17 lbs. within three weeks. But, when I switched to another antiobiotic because of a pin-prick rash, once again I started feeling worse. Through the internet I was able to find a "Lyme literate" physician who has prescribed antiotiotics which, thankfully, have kept me going. But they haven't kept me ahead of the disease, so far: my vision is blurry, I have crawly sensations over my scalp and body, swollen lymph nodes, (that I understand is a "good" sign, actually), and difficulty concentrating. While conversing I can see a picture in my mind of the noun I want to say, but can't think of the word for it. In September I blacked out after feeling faint several times. Because of heart palpitations, I had to see a cardiologist who has recorded evidence of "super ventricular tachycardia." He wants me to undergo an "ablation" procedure -- the sooner the better. I KNOW it's the Lyme disease that is causing this electrical short-circuiting. But so far, no one is willing to treat me with i.v.antibiotics, first, to see if I can get better. Can it possibly be because of pressure by peers and the insurance companies to avoid going this route? The prospect of risking possible heart perforation seems to be less significant than the dreaded "expense" of iv. antiobiotic treatment. Where do I turn? And, I'm one of the relatively lucky people. I've actually tested positive on a PCR test, can relate my problems to a specific "Lyme-related event", have access to the internet and at least am on an oral antibiotic regimen! Thanks to the internet I've found support and consolation from other people who share the same experiences and understand the terrible manifestations and ramifications of this disease. On the other hand, I reported these vaccine "adverse events" to the federal govt.'s (VAERS) office, and haven't heard word one from them. I've had an infectious disease doctor tell me that he has only once seen a case of advanced Lyme. Morale-breaking experiences with doctors who are so ideologically averse to this disease that it's obvious that the doctor thinks the patient is a malingerer, a "nuisance", or a hypochondriac? I've heard about them and experienced them. This disease breaks down the body, the mind and the spirit. Cudos to those of you who try to better understand and who help others understand what a monster this disease can be. Believe me, the disease knows no limits. I wonder whether Dr. Steere et al would consider my situation a case of "post-Lyme" syndrome (brought on by this vaccine, which doesn't "infect" one with Lyme) or maybe might just once give consideration to the reality of CHRONIC LYME DISEASE which was activated by the vaccine....
Carole Mekjian <camek@ix.netcom.com>
- 11/06/99 03:40:48 EST

If we do not speak as legion, we will be put assunder. We must cry out in a loud voice, and NOW! so as to put the evil that besets all too many of us where it belongs, and that is: Hell! If we are silent,we collectively suffer. If we "stand for truth" we will be counted for our endeavors, not in heroics, but in honesty! It takes but one match to get a fire glowing, and as shared in past, we can light a "fire" of truth, and integrity, morality, honor...if we simply stand up so as to be counted! If silent, we repeat the down side of history! I believe , and have shared in past, that this "spirochete,Borrelia b. aka Lyme disease, the pathogen bacterium did not "at all" surface from some sort of spontaenious "whatever"! Pasture affirmed this eons ago! I believe that we are at the root of a more "diabolical" enemy, and without our continued endeavors we will continue to be ignorant as well as suffer. I see suffering every day, I put in a 17hour day today working with Lyme Pts. , we must be vocal, we must be intollerent of the lies , yes lies provided as well as the in and un-justice afforded all too may Lyme Pts. as well as their famalies..>Stand up and stand up NOW...Stephen J. Nostrom, RNC. Infusion Therapy, Founder/Director, Lyme Borrelia Out Reach Foundation, circa 1987
Stephen J. Nostrom RNC Infusion Therapy <Borrelias@aol.com>
- 11/06/99 00:37:01 EST

Thank you so much, Michael, for your article. Those of us who suffer with Lyme Disease for months and years, and have had to fight to get treatment, which is usually too little and too late, applaud you with enormous gratitude. I am a former New Englander, born in Bar Harbor, Maine, so I am especially pleased that the only article we "Lymies" know of to date, is in a Boston paper! I watched the local D.C. news stations eagerly the night of the protest, but of course, it was not mentioned. A recent article on Lyme stated that the average period of time to diagnosis and treatment after being infected is 22 months, and number of specialists seen is 7. This is just about right. I have been sick for 3 years now, and have been on intravenous antibiotics via a central line in my chest for 18 months. As soon as we begin to withdraw the IV meds, all my symptoms return. They are all pervasive, and leave virtually no body system intact. I take an additional 15 other medications to control conditions caused by Lyme, yet I am one of the very fortunate ones. My insurance company pays $187 a day for my IV Rocephin, and supplies all syringes, sterile bandage kits, etc. The insurance industry, in actively discouraging a Lyme diagnosis in the face of overwhelming evidence, is costing lives, untold suffering, and eventually costing themselves in dollars far in excess of what would have been easily treated in the first month after infection. I saw 3 infectious disease specialists, all of whom refused to consider Lyme as a diagnosis. I am being treated by my GP, who thankfully is up to the minute in appropriate treatment protocals. One local I.D. specialist began diagnosing Lyme to the enormous relief of patients here, who flocked to him as a savior in a storm. But within a few months he was forced to write his Lyme patients that he could no longer treat them. His insurance claims were enormous. My doctor has one Lyme patient - me. She was unable to treat a friend's daughter who also has Lyme because of the time and length of treatment and insurance company pressures. Thanks for your article, and thanks for listening. One day this disease will be treated appropriately, and doctors like Dr. Joseph Burrascano who have risked their careers for the sake of their patients, will not be chastized for speaking the truth.
janie henderson <adonai@erols.com>
- 11/05/99 23:54:27 EST

Hi there, I cried reading all the letters in your guestbook. Although a lot of us sound alike, I felt compelled to write. I believe I was bitten by a tick in about 1987 but it wasn't until this past year I was diagnosed. My life fell apart when I was 29 and became sick. I was depressed, tired, sucidal, psychotic and in chronic pain. I was in and out of psychiatric hospitals for 3 years with repeated suicide attempts. All the time I had joint pain, fatigue and neurologic symptoms. Although I managed to pull myself together and to go back to work after 4 years of disability, I still remained very ill. Last year, it progressed so bad, I started blacking out and having severe neuro pain on my face as well as twitching and a drooping eye. I went to about 10 different doctors and it was a big mystery. They knew something was wrong because I had a very abnormal sed rate and also spinal tap. I was misdiagnosed with CFIDs, Epstein Barr, MS, lupus and fibromyalgia. The truly sad thing is that I diagnosed myself. I was doing reading trying to figure out what could be wrong and then asked a doctor to test me for Lyme. Thank God it came back positive and I found a great doctor. I live in the southwest and there are very few people here with Lyme. I believe I got it in Minnesota. It is a shame I lost over 10 years of my youth, my life. I feel for everyone who goes through this. I am still hoping for a cure although I am still quite ill. Thank you for doing a story on Lyme Disease. People don't undersand it.
Lisa <bailieboy@aol.com>
- 11/05/99 22:17:15 EST

My family also has been adversely affected by Lyme Disease. Chronic Lyme patients feel like they have no where to turn. Their lives are turned upside down. And the CDC honoring someone like Dr. Steere is like a slap in the face. I could tell you all the misery that Lyme has inflicted on my family, but after reading most of the previous stories, you must have a good picture of the torment and pain Lymies endure.
Jennifer Bradley <buzzard7@flash.net>
- 11/05/99 21:58:58 EST

Keep up the good Lyme work! Hang in there! Good article.
Mary Distler <mdistler53@aol.com>
- 11/05/99 21:45:42 EST

Are you an MD? Are you a reporter? Do you know any person with Lyme Disease? What is your interest in this disease?
Mary Distler <mdistler53>
- 11/05/99 21:41:41 EST

I have Lyme Disease even though "they" say that it doesn't exist in Missouri. It is hard to believe that most doctors won't even deal with this disease and that we have to travel miles to find help. I have had Lyme Disease for over a year. The first three doctors that I saw told me that there was no way that I had Lyme. I went to an infectious disease doctor who claims to be setting up a major Lyme clinic at a state university and he refused to test me for it. He told me that my symptoms were from aging and stress. I finally found someone who would help me and tested me. I tested positive on all the tests that I was given. By that time, the Lyme had attacked my neurological system though. I now have chronic Lyme Disease. I did not know that Lyme Disease was so prevelant until I got it and started talking to others. This disease makes you so sick. It is hard to believe that doctors ignore it and refuse to treat it. I hope that they never get Lyme Disease. I bet that they would be clearing out the pharmacies trying to cure themselves if it was their body that was failing on them. Thanks to everyone who is trying to bring Lyme awareness to the world. It is everywhere and it really makes me sad that doctors are so dense and uncaring to help people.
Lynn B. <Bocklee@aol.com>
- 11/05/99 21:34:20 EST

Thank you for your article on Lyme disease. It is so important for the public to know the controversies surrounding this disease. I am 42 years old and contracted Lyme disease in Massachusetts in 1989. (My kids were 1 and 2 at the time.) The very first doctor I went to suspected I had Lyme disease but the infectious disease doctor I saw in Western Massachusetts didn't agree. He thought I couldn't handle my kids and that I needed to see a psychiatrist. Four other doctors diagnosed me with CFIDS. Six years and 20 doctors later, I was tested for Lyme disease and the test came back positive. I went again to an infectious disease doctor for treatment and was told that my Lyme test was a false positive and that I could not possibly have Lyme disease because it was so rare (this was in 1995). It was at that time that I saw a documentary on Connecticut Public Television called "Lyme Disease: Not Out of the Woods Yet." The documentary exposed both sides of the Lyme disease controversy and as a result of that show and with the help of other Lyme friends I was able to get to a doctor who would treat my Lyme disease for longer than 4 weeks. Not only did my Lyme disease doctor treat me for Lyme disease but he also discovered that I had Babesia, another disease carried by ticks. I have had repeated treatments of antibiotics over the past few years and this treatment has literally turned my life around. I have gone from being 80% bed ridden for 6 years to working 30 hours per week, jogging 3-4 miles several times a week, and being able to take care of my house and family. I have to travel 8 hours round-trip to see my doctor but it is worth every second. I could not get the help I needed from a single doctor I went to in western Massachusetts. I can't believe they would rather let you suffer, to such a devastating degree, than give you antibiotics. I believe that Dr. Steere and other researchers/doctors who promote his theories are impeding important research that will result in a cure for this horrible disease. We certainly don't need Yale squandering more research dollars on a study to say that we are suffering from depression. I've been on four weeks of antibiotics and it wasn't enough. Longer treatment helped immensely. Carla Colson
Carla Colson <Rhausta@aol.com>
- 11/05/99 21:12:12 EST

Thank you for your article. Lyme disease deserves media focus as it is the #2 infectious disease in the country behind Aids. To those of you reading this, if it has not affected you or someone you know yet, it may in the future. I believe that Alan Steere, while having done us all a good service in discovering Lyme disease; is now unfortunately, part of the problem rather than the solution in helping people who have Lyme. I too have Lyme disease. I have had it for 5-1/2 years. There is nothing like it in zapping the life from your body and causing it lots of pain. I was treated with the protocol of antibiotics (that Alan Steere would suggest) and it did not work for me. I am currently still searching for a cure.
Linda Sechrist <sechrist@netnitco.net>
- 11/05/99 21:05:42 EST

Dear Michael, Thank-you so much on behalf of the vast number of people suffering advanced Lyme disease due to mis-diagnosis and/or undertreatment, whose many voices are weak but unified are strong on this very issue. I have both met and counseled people who were terribly ill with Lyme disease but were refused diagnosis or treatment at Yale. In CT there is no longer a known doctor east of the CT River that will treat advanced Lyme disease long term. I was one of the last few to be seen by one of the best who has now shut his door to new chronic Lyme patients due to the ugly politics and potential threat to his practice. So many of us wished we could have gone to Bethesda to join our brothers and sisters with Lyme disease in protest of Dr. Steere's false ideologies about diagnosis & treatment. The incredible response to your article is indicative of that. Thank you for listening and representing this ugly situation so well. I truly hope and pray that your article will force some light on the subject to the many doctors who refuse to be more objective and scientific in evaluating and treating us, and to those designing and approving of research for prevention, diagnosis and cure. Blessings to you and the handful of courageous healthcare providers who are doing the best they can to help us out of this deep pit. Nancy Berntsen, RN, BSN, Tick Related Illnesses Self-Help Alliance, Eastern CT (www.oikourgos.com/trisha) (Reposted from 11/04/99 19:02:00 EST)
Nancy Berntsen <berntsen@altavista.net>
- 11/05/99 20:49:05 EST

Dear Michael, I am a member of the National Insitute of Health study on Chronic Lyme Disease. It just so happens that the week Dr. Steere was to speak at the NIH I would be going for my six month exam at the NIH. Lucky for me I was able to participate in the protest and hear Dr. Steere's lecture. Here is a case study of myself...I was diagnosed with MS by two very well known doctors in NJ. I was suspect of the diagnosis as my white blood cell count was unusually high in my spinal fluid. I got a third opinion and blood was taken and sent to a reputable lab. Color me suprised, I met the CDC requirements for a positive Lyme test. That was in 1997. I began treatment in 1998 and was limited to 3 months of IV antibiotic treatment (pennicillin sp). I continued to take oral antibiotics. While on the IV my white blood cell count in my spinal fluid went from a high of 25 to 1 (0 to 5 is normal.) After I was refused more IV I continued with oral antibiotics. Within 16 months of being taken off IV my white blood cell count in my spinal fluid has slowly returned to a record high number (as of yesterday it was thirty). I am being placed on IV antibiotics next week to try to get a handle on the infection. My doctor will once again have to fight the insurance company to get this approved even though this is overwelming evidence of persistant infection. Also, I forgot to mention, I have a new brain lesion, another symptom of late stage lyme disease. If Dr. Steere does not think persistant infection exists he should have stopped by the infectious desiease ward at the NIH, I would have been happy to share my case study with him. The reason I have agreed to be in the NIH study is so that I may be able to chart my progress or regression with this awful disease. I am subjected to spinal taps, MRI's, blood work, physical exams and a myriad of other tests every few months. Do I want a spinal tap, no, but do I want to be part of the team that is able to prove peristant infection, yes. Dr. Steere and the insurancew companies would rather let me die, then to admit there is mounting evidence that persitant infection exists. My childhood summers were spent in Nantucket, Block Island, Nova Scotia and out west. I was an avid fisherperson and outdoors woman, leaving plenty of opportunity to contract this illness. As of Thursday I have had 10 spinal taps, 14 MRI's. probably two gallons of blood drawn, painful EMG testing, EKG's etc. all to prove that the Lyme persists. I just want to live, thats all. Thank you for taking the time to read my missive. Annie Richmond
Margaret Richmond (Annie) <mrichmond8@home.com>
- 11/05/99 20:01:39 EST

Dar Michael, I am a member of the National Insitute of Health study on Chronic Lyme Disease. It just so happens that the week Dr. Steere was to speak at the NIH I would be going for my six month exam ath the NIH. Lucky for me I was able to participate in the protest and hear Dr. Steere's lecture. Here is a case study of myself...I was diagnosed with MS by two very well known doctors in NJ. I was uspect of the diagnosis as my whirte blood cell count was unusally high in my spinal fluid. I got a third opinion and blood was taken and sent to a reputable lab. Color me suprised, I met the CDC requirements for a positive Lyme test. That was in 1997. I began treatment in 1998 and was limited to 3 months of IV antibiotic treatment (pennicillin sp). I continued to take oralantibiotics. While on the IV my white blood cell count in my spinal fluid went from a high of 25 to 1 (0 to 5 is normal.) After I was refused mopre IV I continued with oral antibiotics. Within 16 months of begin taken off IV my white blood cell count in my spinal fluid has slowly returned to a record high number (as of yesterday it was thirty). I am being placed on IV antibiotics next week to try to get a handle on the infection. My doctor will once again have to fight the insurance compnay to get this approved even though this is overwelming evidence of persistant infection. Alo, I forgot to mention, I have a new brain lesion, another symptom of late stage lyme disease. If Dr. Steere does not think persistant infection exists he should have stopped by the infectious desiease ward at the NIH, I would have been happy to share my case study with him. The reason I have agreed to be in the NIH study is so that I may be able to chart my progress or regression with this awful disease. I am subjected to spinal taps, MRI's, blood work, physical exams and a myriad of other test every few months. Do I want a spinal tap, no, but do I want to be part of the team that is able to prove peristant infection, yes. Dr. Steere and the insurancew companies would rather let me die, then to admit the mounting evidence that persitant infection exists. My childhood summers were spent in Nantucket, Block Island, Nova Scotia and out west. I was an avid fishe person and outdoors woman, leaving plenty of oppurtunity to contract this illness. As of Thursday I have had 10 spinal taps, 14 MRI's. probably two gallons of blood drawn, painful EMG testing, EKG's etc. all to prove that the Lyme persists. I just want to live, thats all. Thank you for taking the time to read my missive. Annie Richmond
Margaret Richmond (Annie) <mrichmond8@home.com>
- 11/05/99 19:54:22 EST

Thank you for taking an interest in Lyme Disease. There are so many of us who suffer from it, and doctors like Steere only make it harder for us to get the treatment we need. Something you missed in your article is that there are many, many doctors who agree with the Lyme Alliance, and they have research to prove that long-term treatment is often necessary. I hope that you will continue to think about Lyme Disease and publish stories about how serious a disease it is. The public needs to know. And SO DO INSURANCE COMPANIES. It has become a political game with financial undertones instead of scientific like Dr. Steere wants to say. I would advise you to look at Dr. Burrascano's 12 edition of his research on Lyme. It can be located on a search engine on the web. It is highly educational. But unfortunately, it is dangerous to stand up for the more costly means of treatment, whether it is best or not. And the more conservative doctors are too proud to admit they were wrong, and don't want to lose their patients to the aggresive doctors, so they attack them. It has become shameful! I encourage you to talk to patients and aggressive-treating doctors.
Jennifer McCarron <jennmc@usa.net>
- 11/05/99 17:49:46 EST

Thank you for your article....After reading a few responses, I decided to include mine. All of us have been through basicly the same...so why can't some eyes be opened, instead of wool constantly being pulled over them...How many responses does it take to get drs to realize, that we don't want to feel bad all the time...I live near the coast of N Carolina, and have been told by 4 docotrs that Lyme is not in NC. In 2.5 years I have been to 17 doctors, and am amased at their practices. Like many, I found the engorged tick on my side that left me with an 8 inch bulls-eye. Three weeks later came slow symtoms and fever and a horrible rash that consumed my entire body. My health was so bad I was almost wheelchair state. After nine months I found a doctor who treated me for 3 weeks on IV's. I regained my health to my great surprise, but relapsed after 3.5 months. I then stayed on doxy. for about 1 year just to function. Having good and bad days I was too afraid to come off of the medication. In two years these are the symtoms I have learned to live with...Facial numbness right side daily, low grade fevers, eye sight very bad, and glasses do not correct, tingling arms/legs,twitching fingers, shoulders/neck aches, stiff neck, extreme fatigue, painful/stiff joints,sleep problems, swallowing problems, very bad thinking and reasoning abilities, and array of other symptoms...I have always been very hyper and hardly ever been sick.... This past July , with my money almost depleted, I journyed to NJ to a doctor there. With a positive Eliza 2 years ago, and a positive PCR they ordered 9 weeks of IVs. Though some symptoms are lingering, I feel like all the others, I will never be healthy again..... We have all become advocates with this disease, and hate to know that other people will suffer because they are in the wrong place at the wrong time.....We do not need to lead them to believe this disease is hardly nothing to combate....Instead we need to be putting posters all over the windows of every business in the US and warn everyone...We don't need Steere or any other doctor to try to convince otherwise...Thanks again....May all disbelievers just listen to all the stories....Barbara Fleming
Barbara Fleming <jimmyfleming@coastalnet.com>
- 11/05/99 17:35:10 EST

Thank you for the article describing the controversy surrounding Dr. Steere's Lyme disease views. Dr. Steere's theories about Lyme Disease have caused a lot of harm to those of us who actually have Lyme. Lyme is not "over diagnosed" as he claims. Most of us have received several incorrect diagnoses before being diagnosed and treated for Lyme. These delays often allow the bacteria to affect our brains and bodies very thoroughly, causing chronic and incurable disease. I was misdiagnosed for two years, while suffering greatly. My Lyme Disease symptoms were classic, and even included the "telltale" EM rash! There was no excuse for my doctor's lack of awareness and belief that Lyme is easily cured. His beliefs reflected Dr. Steere's outdated theories, which are not accurate. Dr. Steere's inability to listen to the people affected with Lyme makes his research highly suspect. Thank you for bringing this matter to the public's attention. Susan Lo Los Angeles, CA
Susan Myers Lo <Whovian@earthlink.net>
- 11/05/99 16:20:59 EST

I am appalled that anyone can make statements without having medical documents to prove his case. Look at the history of diseases AIDS for example infectious disease doctors did not beleive in AIDS. People with aids died with out a diagnosis, CANCER my grandmother died of that there was no name so there was no disease. ask yourself why because they did not entertain the thought of a new disease or an old one these people are very foolish. In there foolishness people will die and be buried without the cause of death being LYME DISEASE, just like they buried my Uncle who had Aids back in 1980. Lets look into the past and look into the future and learn from these horrible mistakes to find a disease we need to know it exist we need a test. The lesson this is a disease and it has a name and we suffer every day, I talk to so many people who like me have a disease called Lyme Disease and I wake up with it and I go to sleep with it . I suffer
Jacqueline Di Leo <LYME DIVA>
- 11/05/99 15:48:45 EST

My case is a case not to be ignored. I have evidence that Dr. Steere theory is wrong. We have to remember that some things are based on theory but some take it as fact. His theory just happens to be wrong. I have a documented tick bite, ER report with diagnosis EM rash etc etc. I have records of all medications, Doctors notes, Lab results with all the different types of testing from over the years and from varied labs all of which show high out of range, i test neg for all other diseases, illnesses and allergies. I have a chrono-bio. All of which was published in a Demark medical journal. I have been diagnosed by several from General Pracs to Experts from both the west coast and east coast. I have the evidence and willing to share it with Dr. Steere or any MD or Publication.
LDWCC <lymedisease@juno.com>
- 11/05/99 14:01:00 EST

Mike, Thanks for the well-balanced article on Lyme. My husband and I are Lyme patients who have suffered from the disease for many years. We were probably infected with Lyme in our early thirties. We spent a great deal of time outdoors, hiking, canoeing and camping. It took 9 years of failing health for me to obtain a diagnosis and during that time I was seen by 12 doctors (including 4 neurologists, a cardiologist, and a specialist in Infectious Diseases ). At the time of my diagnosis I was suffering from seizures, tremors, involuntary jerking, numbness in fingers and toes, difficulty with speech and writing, experiencing crushing fatigue, perpetual headaches, severe nerve pain, spastic gait and bouts with paralysis. I was originally diagnosed with MS, then told by a neurologist that my MRI showed that I couldn't possibly have MS, I was just depressed. Once I was finally correctly diagnosed my husband was tested and also found to have Lyme. I thought getting diagnosed was going to be the hardest part, but getting treated turned out to be even more difficult. Even with positive tests I was subjected to ridicule by doctors who told me 6 weeks on antibiotics was enough to cure me. A neurologist told me that if I was still feeling sick I must be imagining it. We could not find anyone in the medical community to take our positive Lyme tests seriously. We were finally able to locate a Lyme literate doctor who agreed to treat us, but each time the antibiotics were stopped, our symptoms returned with vengeance. Then we lost out Lyme literate doctor. The insurance company started to hassle his practice because he was treating too many Lyme patients too aggressively (i.e., expensively). The partners kicked him of the practice and he chose to move to a state and practice medicine where there is still little Lyme. The harassment of our Lyme literate doctors who choose to think for themselves rather than follow Dr. Steere's antiquated guidelines concerns me a great deal. Doctors are being harassed for treating chronic Lyme patients in an aggressive way that produces positive results for their patients. I have never met a chronic Lyme patient who improved under Dr. Steere's "4 weeks on antibiotics and you're cured program." Please consider writing more about the Lyme controversy . We have stories that need to be heard and you can help.
Anita Ranucci Brandon <AniLuBrdn@aol.com>
- 11/05/99 13:53:57 EST

I have had LYME DISEASE since June 1990 and still have it. It is difficult to find a Dr who knows anything about LYME
Tom Harbison <tbharbo@aol.com>
- 11/05/99 13:36:13 EST

Thank you so much for your article on Lyme Disease. As you can see by the many comments (which are actually just the tip of the iceberg), you've touched on a very serious problem. Due to the stated controversy surrounding Lyme Disease, and being diagnosed too late, I've suffered severely with this disease for over ten years now. My story in many ways is unbelievable and yet so common. We need the media to research the truth of what is going on here and to courageously fight with those who are too ill to do it alone.
Diana <hispilgrim@jps.net>
- 11/05/99 13:25:52 EST

Dear Mr. Lasalandra: Thank you for your article on the politics of Lyme disease. Add me and my daughter to the seemingly endless list of persons with Lyme disease which has persisted well beyond the treatment recommended by Allan Steere. Dr. Kenneth Liegner wrote an article, "Persistent Denial of Chronic Persistent Lyme Disease," which addressed head on the fallacies of Dr. Steere's position. See also Dr. Joseph's Burrascano's testimony before a Senate commitee on which Ted Kennedy sat, regarding "The Lyme Disease Conspiracy." There are obvious financial incentives (in the form of grant monies) for Dr. Steere and his associatees to take the position they do that LYme is easily diagnosed and easily treated. There are thousands of Lyme patients across the country whose experiences are to the contrary. And, without sounding paranoid, the insurance companies and even our government has more to gain by denying the existence, persistence and wide geographic incidence of this disease. Lyme disease has been reported in all of the continental states in the US. Yet, many of us are told by our Health Departments, "Oh, we don't have Lyme disease here." Many of us are told we don't have Lyme, or used to have Lyme or that further antibiotics won't help. We know we've been exposed, have the symptoms, positive blood and urine tests (discounted by Steere if not done in a lab he approves of), and relapse without treatment. Please keep this story line going. Remember L-tryptophan and EMS? This is an area of investigative reporting that you can really sink your teeth into! We in the Lyme community desperately need to have our stories and those of our children heard. We are disabled. We are sick. And unlike AIDS patients, we don't succumb quickly, but lead lifes of ongoing fatigue, muscle and joint pain, neuropsychiatric illness, heart and brain abnormalities and a host of other ill effects. I could send you many many references on the persisitence of Lyme disease in spite of "adequete" treatment, if you like. In any case, thank you again for the article. At least some will know that those most affected by this illness do not honor the academic who scorns their pain and life experience. Sincerely, Veronica R. Medina Albuquerque, NM 87110 (505) 266-0527
Veronica R. Medina <Vrmedina@aol.com>
- 11/05/99 12:16:56 EST

Mr Lasalandra, I too suffer from lyme disease. My family Dr. chose to put me on steoirds for 18 months because he like a lot of other Michigan Drs. do not recognize lyme as a threat to our health, this by itslelf gave this disease a chance to take a nightmarish hold on my life and the lives of my family. Dr. Steere seems to have placed his head in the sand and in doing so has put at risk proper diagnosis and treatment of lyme. It is because of people like him that it is so hard for people like me to get treatment. Each lyme patient has their own horror story, i am not different. We need to be recognized in a positive and healthy way, this can not be accomplised when a quote "learned physician" puts out such dribble. Thank you for this opportunity to share our dilemma. Sandy Darnell
Sandy Darnell <SDarn30204@aol.com>
- 11/05/99 09:20:32 EST

Lyme disease has robbed the health of four out of six family members, including myself. Doctors do not understand the faulty testing and the manifestations of lyme.They look for positive tests which are unreliable, joint pain which may have progressed to neurological and physciatric complications. Lyme mimics many disorders and the bull's eye is not always present. My family was diagnosed very late. We all have sleep problems, arthralgias,depression and joint pain. Husband has severe loss of blood flow behind eyes causing blurry vision. Sons have anxiety,panic and one developed alopecia areata. I have severe lyme arthritis, migraines,and extreme stress causing tachycardia and high blood pressure. I am apalled about New England states not addressing this invisible illness. I have taken my family out of network in insurance to get a lyme literate md to treat us. We are all improving albeit very slow in some regards.We live in Stamford,Ct.
Deborah Procaccini <Debtoo2773@aol.com>
- 11/05/99 08:17:23 EST

Dear Mike, Thank you so much for providing this forum! Are you as amazed as all the rest of us at the severity and scope of this disease. The end of my original message got scrambled and repeated. I had concluded that as long as there was no reliable,difinitive test for Lyme disease, people like Dr. Steere could say anything they wanted and be taken as experts on this disease. And insurance companies could rely on his faulty opinions to deny patients life-saving treatment. Thanks, Ann
Ann <mhhirsch @aol.com>
- 11/05/99 08:06:59 EST

I am a Lyme and babesia patient who is tired of all the doctors who don't know how to treat me. When are the doctors goint to wake up and realize how many people have this disease and are truly suffering? I have decided the only way I am going to get better is to take the holistic approach.
Sue <dansue1999@snip.net>
- 11/05/99 07:39:22 EST

Dear Mr. Lasalandra, you must be somewhat surprised at the response to your Lyme article. I, too, published an article on Lyme in my local Newspaper, The Darien News Review, a couple of years ago. People are still responding to it, and the general public seems just as confused as ever! There are many, many people simply suffering with this disease. I have heard through various sources that the "good" Dr. Steere has, in fact, treated and retreated a few select patients for persistent Lyme Disease. I find it interesting and worrisome that he hides this fact. Polly Murray, author of The Widening Circle, is utterly uncomprehending of Steere's views. Ms. Murray is one of the Old Lyme mothers who initially brought Lyme Disease to Steere's doorstep. He is incredibly lucky to have been at the proverbial "right place" when she and other mothers asked for help. How bizarre that Steere would launch an impressive career defining Lyme Disease, only to turn on the very patients who turned to him!!! What would be this man's motivation to maintain such a staunch and non-scientifically based opinion? Firstly, he has spent too many years and too much money to retract, or even alter, his views. Additionally, and probably more importantly, who pays his bills? Seems like it always comes back to the almighty dollar. Thank goodness for insurance companies!!! Dr. Steere and these companies surely enjoy a warm and mutually profitable relationship. Fame and fortune... Thanks for your work. Would love to see a follow-up, or even some investigative reporting on the finances of Lyme Disease . Dr. Vanderhoof of Columbia U. has done some extensive studies on the costs of Lyme Disease. Good luck to you. Marie Ciasullo, R.N.
Marie Ciasullo <Ciadarien>
- 11/05/99 06:07:58 EST

Michael, thank you for writing the well balanced piece on Lyme Disease. Many of us Lyme patients have found and supported each other online. There are so many other people without computer access who need to be informed about this hideous illness. You are serving a different literate audience than we can reach on our computers. To throw a monkey wrench into the current debate of diagnosis and treatment of Lyme disease, there are other tick-borne illnesses such as ehrlichiosis and babesiosis which can be contracted with a single bite from a Lyme disease carrying tick. This is a serious situation which will gather future attention and even more controversy. I, unfortunately, have experienced the three co-infections first hand. You have reached more masses than we stricken patients could ever hope to reach. There is so much to be learned. Please accept a pat on the back. I'm gladdened that you had the courage to write such an article, and I'm hoping that you'll continue in this positive vein.
Eileen <EileenLR@aol.com>
- 11/05/99 01:55:23 EST

Mr.Lasalander,How are you sir? I don't want to take up a lot of your time,but I must tell you that there are a lot of sick people who can prove Dr.Steere wrong if we could only get the right people to take an interest in this disease..I myself never even tested positive but I had every symptom and after 14 doctors I finally found one to treat me and within 2 weeks of treatment I was able to return to work after being out for 3 months.Its been about 9 months now and Im stil not 100% yet but if I followed Dr.Steere's guidelines for treatment I would probably be in a wheel chair right now.There are lot of similar stories that need to be told.Hope I didn't bore ya to much..Take care Scott Dever
Scott Dever <Billmad@webtv.net>
- 11/05/99 00:18:28 EST

Thank you for writing your article. I'm in my 8th year of being very sick and only recently been properly diagnosed. Not being diangnosed on time turned my life and everyone around me completely upside down. This is a serious disease and needs to be properly addressed as it is very easy to get. Thank you to bring such an important issue to the awareness of the public. Lillian S.
Lilian S. <Yarohe@aol.com>
- 11/05/99 00:04:24 EST

I want to thank you for writing such a great artical about Lyme Disease. This disease is obviously being undertreated and misdiagnosed in so many people! I think that the root of the problem is that there is too much politics in medicine and that doctors are not able to care for thier patients as they deem fit. Instead they must be lead around on a leash guided by HMO's and the governments! What right does one doctor have to decide what is best for so many ill people? Surely, this is unethical! Please continue to write about this disease, thereby shedding light on a subject that has been in the closet for so long.
shelby emenheiser <dierdra2@webtv.net>
- 11/05/99 00:02:38 EST

42 years untreated Lyme equals a particularly low-quality life. In 1983 I asked the doctor who dx'd fibromyalgia if it could be Lyme. He responded as a good little robot should. The past year I have been sliding quicker down the slipperly slope.
MA <not available for spammers>
- 11/05/99 00:00:33 EST

Here is another story from another Lyme sufferer. I would love to have been cured from this horrific disease! After months of antibiotics, I have seen a little improvement. There seems to be a cure, or at lease relief, for many illnessess, but Lyme sufferers are expected to 'endure' the pain and suffering that accompanies Lyme Disease. When can we expect to see reliable research? How many will suffer? This is crazy!
Janice <JCsLamb@aol.com>
- 11/04/99 23:35:20 EST

Mr.Lasalander,How are you sir? I don't want to take up a lot of your time,but I must tell you that there are a lot of sick people who can prove Dr.Steere wrong if we could only get the right people to take an interest in this disease..I myself never even tested positive but I had every symptom and after 14 doctors I finally found one to treat me and within 2 weeks of treatment I was able to return to work after being out for 3 months.Its been about 9 months now and Im stil not 100% yet but if I followed Dr.Steere's guidelines for treatment I would probably be in a wheel chair right now.There are lot of similar stories that need to be told.Hope I didn't bore ya to much..Take care Scott Dever
Scott Dever <Billmad@webtv.net>
- 11/04/99 23:32:25 EST

Thank you for noticing us! I am certain that this is our "one small step...". Please don't stop...We could use an ambitious investigative reporter on our side!
evelyn obrien <bin2india@aol.com>
- 11/04/99 23:21:04 EST

Dear Michael: You can tell from the wrenching letters that you have received in this guestbook what devastation Dr. Steere has caused with his blindness. Thank you for writing your story and please, please do not stop now. The doctors who are treating us --not in one State but in several, and AT THE SAME TIME --are being investigated by the state Office of Professional Medical Conduct (three docs in New York and seven in New Jersey, and in other states too). These agencies have the power to pull the doctor's medical license. The question to investigate is what role, if any, Dr. Steere has in these suspiciously simultaneous actions. On Nov. 3 Steere said that he had received an NIH grant every year SINCE the 70s. How come the money only goes to HIS failed theory of treatment? Another question for an investigative reporter. Blessings on you and thanks. Joan
Joan Green <jgreen1471@aol.com>
- 11/04/99 23:01:36 EST

Mr Lasalandra,Your piece re:Patients to protest talk by lyme disease discoverer was welcomed and balanced. Thank you for helping to bring such an important public issue to the light of day. The issue is, whether or not and to what degree, Dr Steere (and those he leads) are responsible for a tremendous amount of suffering in this country.
SJ <onboard15@aol>
- 11/04/99 22:53:43 EST

I suggest that Dr. Steere infect himself with Lyme disease. He then can let it disseminate through his body, establishing a firm foothold in his nervous system and musculoskeletal system - then "cure" himself with four weeks of antibiotics. After that, if he still has any symptoms he can be offered antidepressants, Tylenol, and a "support group" to help him deal with his imaginary problems.
Julia Sager <SagerSkate@aol.com>
- 11/04/99 21:59:26 EST

Mr.Steere's faulty ideas about Lyme's Disease have caused many people with Lyme's Disease to suffer without medicine and insurance coverage. The symptoms after Lyme treatment are real and antibiotics should not be stopped after a few weeks. His ideas might change if he gets Lyme's Disease. Although I would not wish that on my worst enemy. It is a living hell!
Marilyn Kintner <MAK5540@Aol.com>
- 11/04/99 21:58:04 EST

What illness goes away from all people that have it without remaining in some people? Why would lyme disease be cured in all patients with antibiotics without remaining in at least some people as with other diseases?
Leo Schaperow <yarohe@aol.com>
- 11/04/99 21:37:00 EST

I'm thankful I had a dr who believed in me. Luckly he didn't follow Dr. Steere's recommendations, or I would be dead. There can be no timeline in treating Lyme, what works for one person does not work for everyone. Dr Steere needs to get off the fence, and see what Lyme patients are going through, instead of trying to make a name for himself, at the expensive of human lives.
Carol White <CarolB47@aol.com>
- 11/04/99 20:16:56 EST

Michael, Thank you for the excellent coverage presented here. It is indeed frustrating to see people that you love not getting better.. to know in your heart that if they received proper treatment early on that perhaps they might have escaped the ravages of Chronic Lyme. I myself have been sick for over ten years. I have had to leave my job as a psychotherapist and am now on Disability. If proper treatment had been permitted and encouraged, perhaps our tax dollars could be spent more wisely. I just pray that somehow the light will shine on those who are devoted to finding a cure and who support their patients emotionally and physically through these dark times.
Joan O'Brien <moonweb@aol.com>
- 11/04/99 19:30:07 EST

Last May I waas bitten by two ticks in Texas. Within a week I developed the classic bullseye rash and was instructed by my doctor to go to the emergency room for a test and antibiotics. The doctor on call agreed that the rash looked like a bullseye and looked up the "proper" treatment for Lyme disease as prescribed by the CDC. I was given 200 mg/doxycycline for 3 weeks. The Lyme didn't go away. I then had to find a specialist who was willing to treat Lyme aggressively and he suggested that I should take 300mg/doxy for 3 months. I still was not able to rid myself of the disease. According to Dr. Steere, I should've been cured of the disease after the first prescription. As I had the classic textbook symptoms of Lyme Disease, I don't see that it could've been anything else. I never was able to find a doctor that would treat me through traditional medicine. Most are too scared to go against the recommendations put forth by the CDC. Recommendations which were stongly advocated by Dr. Steere. I've been using an alternative treatment to rid myself of the disease and I'm thankful that it seems to be working. I appreciate your article because the methods commonly used for Lyme Disease are obviously not working and I hope that things will change so others won't have the problems I have had getting proper treatment.
Robin Barber <barber@homer.phys.uh.edu>
- 11/04/99 19:28:50 EST

Dear Mr. Lasalandra: I agree with the Lyme Alliance. I probably had Lyme disease for 6 years before I was diagnosed. I was an anesthesiologist, but now am considered permanently and totally disabled by the neurological damage. I had a positive serology (Elisa) in 1997, with acute swelling of my hands and wrists, and numbness, tingling, & burning in my hands. Before that, I had been told that I had chronic bacterial sinusitis, a common misdiagnosis for Lyme patients. I had abnormal perfusion of my brain, and neuropsychological testing that showed my working memory to be 2 SD below normal. That means that 98% of women 45 years of age had a better working memory than I did. That's what forced me to stop working. I realized it was dangerous. I went on IV antibiotics (of course denied by the insurance company because they said I didn't have Lyme), and with a 3rd appeal they sent me to a neurologist (I had my choice of ~ 14 names) who agreed with the Lyme diagnosis. Treatment was limited to 30 days, so I appealed that. I was then sent to a "hired gun" who said I couldn't possibly have Lyme disease, because my Elisa had been only weakly positive and only one time. This despite positive Borrelia burgdorferi specific IgG bands on multiple Western blots, all my Lyme symptoms (which he listed), and the fact that he mentioned that my daughter, who has congenital Lyme disease, "carries a diagnosis of congenital Lyme disease." My daughter was born with a congenital cataract and optic nerve atrophy on the same side. Optic nerve atrophy is seen in congenital Lyme, and we're fortunate that she wasn't born blind. My husband also has it. I heard that Alan Steere testified at that Michigan review that there wasn't any Lyme disease in lower Michigan. I guess the deer and mice know the boundary of Upper and Lower Michigan. Alan Steere has done more damage to Lyme patients than any other individual. I had a positive blood culture for Borrelia burgdorferi in Feb. 99, after 11 months of intravenous antibiotics. How does one explain that? Is there any other infectious disease that isn't treated when the blood culture remains positive? No. Is there a conspiracy? Yes, I think so. I never would have thought so until I was forced to become "involved" with this disease that can suck the life right out of you and you don't even realize it. I also tested positive for Babesiosis, but the hired gun said I couldn't possibly have it because it isn't in New Jersey. I would have to live in Nantucket. Well, if you want the article citing the Babesiosis microti found in New Jersey, I'll dig it up for you. I hope this wasn't too long; thanks for doing the article and calling attention to the controversy. Too many people are suffering. Feel free to contact me for any other information. Sincerely, Eileen McInerney Glaessgen, MD
Eileen McInerney Glaessgen, MD <emcinerney@earthlink.net>
- 11/04/99 19:26:33 EST

Thank you for presenting the other side of the story: the other side to the conventional Lyme blather. I live on Nantucket Island where you could stand on a street corner and collect Lyme stories from passersby all day long. We have so many folk still suffering the effects of Lyme after being treated in the way Dr. Steere would recommend. And this is in a "tick-enlightened" area where tick diseases are primary suspects for all sorts of conditions that get you to a doctor's office. Thank you for publishing info on your enlightened views of this disease which really is becoming a major public health issue.
Mary Keller <maryharp@cape.com>
- 11/04/99 19:24:13 EST

Thank you for your coverage and attention to Lyme Disease. Thank you also to the LD sufferers who were able to attend the protest on behalf of those of us who were not. I am a 36 year old woman, who's neurological system has been ravaged by this disease for the past 19 months. The first 12 months I had 70 appointments with 18 docs, and no idea of what was taking the life from me. Through assistance of many caring Lyme sufferers I finally located a doctor who has a keen understanding of this illness. He actually knows enough to know that even he doesn't have all the answers, and yet unlike the nototorious Dr. Steere, my doctor is willing to continue valuable work that enables him to help us, as opposed to putting his able hands in his pockets to feel his wealth of change. The thing I would like to remind Dr. Steere, is none of us set out with the idea of obtaining Lyme Disease. Once we got it, Dr. Steere's valuable misinformation played an enormous part in keeping us from getting timely treatment. WE are upset by that, and I hope you have enough heart to understand that. Remember, also, that the extra change in your pocket now, will do you little good if one of your own family members comes down with this illness, and you are unable to help them. Finding a doctor who is knowlegeable on this disease is by far the largest task of all. My best advice, is if you fear you may have this disease, and your doctor follows Steere's protocol, run~~don't walk out of the office and save your insurance company tons of wasted money, and save yourself time you cannot afford to lose. Lastly let me say that after two months of "adequate antibiotics" I was still not able to speak or walk. So let me just say in closing, I am so thankful to the courageous docs that with stand constant pressure and investigation to give Lyme disease sufferers the opportunity to enjoy a better quality of life. Shame on you Dr. Steere for not desiring to be a part of the solution.....
Pam Hopkins aka Bomszy <Bomszy@aol.com>
- 11/04/99 18:35:16 EST

Thank you so much for writing the article on Lyme disease and the protest. i have been suffering with this for 6 years and it seems so hard to get anyone to pay attention and realize how debilitaing this disease is. People realize it only when they become infected and then it is to late. Lyme disease is the fastest growing disease in the country and I personally know of four people this year who got infected and are having a very difficult time with it. I can't even offer them any hope because kow one seems to know how to cure it once it gets into tissues and spinal fluid. I only hope more people like your self become aware of this devistating disease and give it the publicity it deserves so that patients can one day be cured. I commend your efforts and for paying attention to something has ruined so many lives. I fyou are interested in any other stories about Lyme please contact me I belong to a support group in Manhattan and have an exorbinate amount of articles and story ideas. thank you-Valerie
Valerie Primavera <valp74@aol.com>
- 11/04/99 18:29:45 EST

Thank you for the article. Thsi is just the tip of the iceberg when children are treated as objects to be controlled, restrained and forced to conform. This is not therapy, it is control
Sally Rogow <srogow@interchange.ubc.ca>
- 11/04/99 17:58:27 EST

Dear Michael, Thank you for covering the protest against Dr. Allen Steere being cited by the NIH as an astute clinician. As you can see from the feedback you have received, this protest is not a case of a few desperate kooks looking for a disease to have. Lyme disease has been shown time and again, in sound peer-reviewed research, to persist in many patients treated according to Dr. Steere's guidelines. It is time to open up the guidelines to honest academic debate and clinical scrutiny without the threat of strongarm tactics by Dr. Steere and his entourage against doctors who's medical opinion differs from theirs. The medical profession consists mostly of very intelligent, highly trained individuals, each of whom has proven a high degree of clinical and academic skill and been licensed by their state to diagnose and treat disease. Nothing makes Dr. Steere more qualified than other licensed doctors to interpret research and make clinical judgements after careful review of current research. This man's arrogant and narrow-minded approach to Lyme disease has permanently disabled countless numbers of patients who's symptoms did not fit his narrow definition of Lyme disease. My daughter was one of the lucky ones who had a doctor who has done her own investigation of the research on the disease and tailors antibiotic treatment to each individual case. My daughter has now been well for two years after a five year battle involving multiple courses of long-term oral and antibiotic therapy. This is a case of Lyme that was suspected early in it's course and probably never would have caused a problem had Dr. Steere and his collegues not been insisting at that time that 10 to 14 days of antibiotics were adequate to cure Lyme disease. When she wasn't cured after 10 days, our former pediatrician, who was relying on the information put forth by Dr. Steere, decided it couldn't be Lyme disease. Since that time, Dr. Steere has upped his magic number to 4 weeks of antibiotics with an occassional admission that some patients require a second 4 weeks to be cured. I wonder how long it will take him, and all the doctors who rely on his word rather than reading the actual research literature concerning this disease,to realize that he might also be wrong about this latest magic number. How many people will have to suffer, some with irreversible physical, neurological and psychological disability before other doctors realize that Allen Steere is not a god, but a rheumatologist who is considered the father of this disease only because he was the person that two mothers from Lyme, Connecticut approached about the possibility that the epidemic of juvenile rheumatoid arthritis in their town might be a vector transmitted disease with multisystemic symptoms. It is one of the sad chapters in medicine that this apparently non-astute, and perhaps, non-academically honest man was the one that had this disease handed to him on a silver platter. It is time for the medical community as a whole to reason with each other, keeping in mind the welfare of the patients who must rely on their astuteness.
Carolyn Cramoy, M. S. <cramoy@aol.com>
- 11/04/99 17:48:29 EST

Dear Mr. Lasalandra- Thank you for your article regarding the protest at NIH. I contracted lyme disease in South Carolina in 1992. Attaining a correct diagnosis and treatment was a difficult ordeal, thanks in part to the pervasive influence of Dr. Steere's misguided and outdated research. Current research flatly contradicts Steere's dogma, and I strongly encourage an indepth study by anyone in the media interested in bringing light to the issue. I have been involved in lyme support and awareness activities for the last several years. The stories I hear mirror the ones posted to you already. A friend lost her father to chronic lyme after he was misdiagnosed with Alzheimers disease. His illness began after a tick bite while clearing brush at his lake house. A 20 year old is struggling through college while on morphine for the chronic pain she has due to delayed treatment. She had been misdiagnosed with CFS during hight school after a tick bite acquired in a local forest. A 15 year old here has lost her childhood and nearly lost her mind from chronic lyme. The stories go on and on. Lyme disease is a serious NATIONWIDE problem. Can we allow this situation to continue?
Sue Fox <SCLyme@aol.com>
- 11/04/99 17:34:53 EST

It took me two and a half years and over ten doctors to get one doctor to admit that my son should have been treated for more than three weeks as prescribed by Dr. Steere and company in 1997. My son has sufferred for two and a half years with a multitude of symptoms. Dr. Steere should read a little more of his colleages papers and less of appearance contracts.
Patricia Eggers <PAC75@aol.com>
- 11/04/99 17:31:31 EST

I am shocked and amazed that the learned Dr would say Lyme can be cured in a month. Diagnosed in Spring 1992. I am left with heart problems and numbness in fingers and toes. This migrates up arms and legs at times. I have recently discovered very low blood platelet count (5000) and am desperate to find out if there might be a Lyme connection. Prednisone, followed by Danazol ( 2 Rx'z from Hell) have aged me. Platelet went up to 130,000 but now dropped to 21,000. Am desperate. Drs here are baffled. Help?
Phyllis B. Ludwigsen <MsTaiTai@aol.com>
- 11/04/99 17:20:10 EST

Back in 1966 I came down with the 'flu', but since I had severe pain and swelling in both my knees and fingers (looked like sausage links), I was diagnosed with juvenile RA. I was placed on corticsteroids for TOO many years. I NEVER felt totally healthy although I did have good times where I did feel somewhat human. I spent the bulk of my adolescence ignored by family and friends because I "complained to much". Accurately, I hurt too much. Over the course of years I sought help for MANY Drs. Most Drs would do a CBC and then when they couldn't find anything wrong, told me I needed a shrink. Some Drs believed by pain was real and I was tested and treated for anything and everything. I persevered and was referred by an eye Dr of all things to a wonderful, thorough human Physician. She ruled out everything and although none of my tests came back positive, I finally began to respond to only IV antibiotics. I had IBS for many, many years and could not get rid of it. When oral anitibiotics sent me to the ER, I had an extensive lower GI workup. The results were accute IBS. Interestingly, after repeated 30-90 courses of IV therapy, I didn't have IBS anymore(!?) I slowly began to feel human again and found more & more 'good' days. I went off IV for good sometime during spring '94. I once again could work and the remission lasted until summer 1996 - sudden periods of tiredness and then the pain came back. I couldn't believe it was happening again! My good days were fewer and farther between. As 'good' became only 'better', the good totally disappeared. Now even 'better' would be a dream. I can no longer work at all and waiting for Disability to make its decision. Since I was on Lyme IV therapy, I can no longer get insurance. After reading all the horror stories in your guestbook, I have serious concerns as to whether Medicaid will pay for IV or not. I would venture to think not. With now no money, no insurance and no Dr, what is left? At 45, is my life over? I am also concerned because the Dr that so ID'd the disease in me and so wonderfully treated me is now very reluctant to even discuss it.. I am forever grateful to her for lovingly guiding me to a point of understanding of this disease and for giving me at least 2 years of a 'life'. I feel a tremendous loss of my earlier life. Having glimsed for a brief time what continued IV thereapy could once again give me, I can only mourn what could have been. Please Michael, don't let this issue go. May God give you and your editors the strength it took those that exposed Watergate. Bring the truth, the REAL truth to light. All of us out here that rate our days in degree of pain need your support.
June <CADDEPT@SkyBest.com>
- 11/04/99 17:02:36 EST

My twenty-one year old daughter has been ill with Lyme disease for nine years. She has been bedridden in constant pain for the last two and one-half years. She has not been able to sit up, talk on the phone, watch television, listen to music, or even use a pillow in most of that time. She has been tested extensively for other illnesses and no other cause has been found while she also has many kinds of positive Lyme tests including recently a positive PCR on spinal fluid. She has been treated with long term antibiotics and has had remarkable responses in the past. I object vehemently to the many suppostions that have been made about this disease by Dr. Steere without adequate PROOF. The tests are not good enough to prove eradication of the illness. Patients are termed liars or psychotics on the basis of merely "we don't believe you." Or patients are given a diagnosis of chronic fatigue syndrome or fibromyalgia when there is no way to prove or disprove these diagnoses either. There is also no proof that Lyme disease develops into these two nonspecific diagnoses except for the opinions of researchers like Dr. Steere. Instead of saying to patients 'prove that you have Lyme disease.' How are we supposed to do that when they will not accept the tests? I say to them prove conclusively beyond a shadow of a doubt that we do not. And you surely cannot do that with the same tests that are ignored if they are positive.
Karen Angotti <FKAngotti@aol.com>
- 11/04/99 16:34:13 EST

My daughter wasn't treated properly for a lyme diagnosis in 1991 and now suffers from chronic lyme disease. She was later treated in 96 and went into remission, however in 98 all symptoms came back. After searching for help and visiting numerous doctors, desperate with my daughter not being able to get out of bed, having doctors trying to tell me it was depression I finally foung a lyme literate doctor who has been treating her for lyme. She is getting better. For Steere to say lyme can be cured in 4 weeks is ludicris! This may be true if treated immediately, but not if left untreated.
Julie Maguire <maguire5@ix.netcom.com>
- 11/04/99 16:25:29 EST

I am a Lyme vaccine victim and Dr.Steere was THE principle investigator. I almost died after the Lyme shots he gave me and he is lying when he says there are NO adverse reactions. I tested negative before the shots and now I have EVERY symptom in the "Denise Lang" book and have not been able to work in over 3 yrs. $$$ is behind it all! I have NOTHING to gain by telling the TRUTH, but Dr. Steere, and SKB Pharmacuticals has so... much to earn!
Lynn Lane <BLJST@aol.com>
- 11/04/99 15:41:58 EST

Dear Mike, Thanks for the article about the NIH lecture by Dr. Steere and the protest to same. As a coordinator of a support group in Ohio,I have heard over and over from patients that their doctors quoted Dr. Steere in denying any treatment beyond the very minimum for Lyme disease. Steere has been repeatedly published in the New England Journal of Medicine and the Journal of the American Medical Assn. including an article titled "Lyme disease, Overdiagnosed and Overtreated." Sadly, those are the major sources for most docs information. The NIH, the CDC, the FDA and the State and Territorial Epidemiologists group all say Lyme disease is under reported and under treated. Until there is a reliable test for this disease, people like Dr. Steere can get away with saying anything they please because they have a name in those journals. Ann
Ann <mhhirsch@aol.com>
- 11/04/99 15:07:27 EST

Having attended Dr. Steere's lecture on Lyme Arthritis at the NIH, I was pleased that he limited his presentation to the small subset of patients he recognizes as having Lyme disease, that is, those that have a significant arthritis in a large joint and positive blood tests (at HIS lab). Unfortunately, by being acknowleged as a leading expert on Lyme disease, those patients that do not present with arthritic symptoms (a majority)and/or test negative on his tests, leave undiagnosed and go on to become severely incapcitated by their infection. After the lecture I asked Dr. Steere if he knew whether his tests for Lyme done at New England Medical Center were going to be modified so as to help diagnose those patients who are infected with other strains/species of Borrelia which would cause a negative result on his tests. Dr. Steere acknowleged the presence of other Borrelia species (for instance some species in Europe cause mainly neurologic disease, not arthritis), but he was quick to disassociate himself from his own lab. He stated that the CDC was working on this but as far as I know this is a falsehood. M. Alexandra Stowe, DVM
M. Alexandra Stowe, DVM <Mas74@aol.com>
- 11/04/99 14:58:21 EST

As a Lyme sufferer in the UK I think that Steere is a DINASAUR He was brilliant in the 1970's for discovering Lyme, but his treatment is totally OUT OF DATE!
Gill Reese < gilly848@netscapeonline.co.uk>
- 11/04/99 14:48:51 EST

Hello, I believe that you can tell by the amount of Lyme related feedback that we 'Lymies' consider this an extremely serious disease. Apparently Dr. Steere is doing to much grandstanding for himself and not looking around him. I was infected wiht Lyme in approx '84-'85, I lived in Ct and moved here to Texas in '86. I have seen 17 Dr.s in 10 years, nobody untill this last July thought to test me for Lyme ,of course it was possitive. My health has gone down so markedly that I am out on short term dissability, I have to take breaks just in cleaning my house! Before this I was very healthy, I taught arobics and was a very much a tomboy. My main symptom has untill recently been heartblock, I get such bad arrythmias that I have passed out, get numbness down left side, and frequent blinding migraines. The first Dr. I saw for this was at an emergency room he patted me on the head and gave me Pepto because ''20 year old females DO NOT have heart problems' that was just the first of many Dr.s . I can only imagine what the combined total of my treatments has been. It absolutely terrifies me now to think that because of Dr. Steere's (and I use the term Dr. very loosly) ideology on Lyme can effect my treatment. Now that I have found out what I have, I do not want any problems with getting myself back on track. Already my short term dissability insurance has tried to tell me that I am cured and can go back to work, if they only knew. I would not wish this Disease on anyone, BUT if Dr. Steere feels that all we need is a short course of treatment than maybe he should be a lab rat himself and infect himself and then wait for symptoms and try his suggested course of treatment. I think, no I KNOW,he would change his mind. Thank you for your time.
Heather E Metler <rod@mexia.com>
- 11/04/99 14:38:02 EST

Having all three diseases under the "Lyme" umbrella, I accidentally hit the "enter" key before I could establish the fact that our organization grows daily as newly infected persons are being infected in Florida by ticks. There are various types of ticks that have "traveled" to our beautiful state effecting our population as well as the cattle industry. Wake Up America! Oust personages such as Alan Steere, et al who have been placed in important positions but who have become enamoured of the power of the position and prostituted by Big Insurance Money. The Year 2000 is going to be a memorable year in the life of the "Lyme" community. WE WILL MAKE A DIFFERENCE AND NOT BE IGNORED!!!
Marvina Lodge for the Florida Lyme Disease Network <lovey38@juno.com>
- 11/04/99 14:17:39 EST

Another thank you from a lyme patient for the article. This syndrome needs all the public debate it can get. I was definitely bitten by a tick several years ago, and though treated shortly with antibiotics, I feel lingering symptoms. What is most disturbing to me, however, is the lack of public awareness of this rapidly-becoming-a-serious-public-health-problem. Doctors seem to know very very little about this (I had to suggest the possibility of Lyme to my doctor, despite the clear-bullseye rash and being in upstate NY tick country), and most of information available is from panicked insurance company interests or panicked sick people who are becoming politicized -- can you blame them?
christopher c. <cc@altavista.net>
- 11/04/99 14:02:09 EST

Thank you for your leading-edge reporting of this important issue. I have had Borelliosis since 1950. Back then home remedy was the treatment of choice for most ailments. I had played in the woods, came home, developed high fevers, rash, hallucinations, etc and had to take horrible tonics for 3 years because I could not gain weight. Then came the good years, or so I thought. Not knowing I carried the spirochetes, I had two children who presented at birth with rashes and my oldest now has Late Stage Chronic Lyme Disease. In 1968 after a family camping trip, I presented with tick paralysis for approximately 7 days. I found what I thought were "sores" on top of my head and shampooed/scrubbed dilligently. I got better immediately. Another event which stands out in my memory is in 1989, after a 3 week camping trip, I had to go to the ER, presenting with BLINDING headache, spiking 105 fever, was told I must have menengitis or cerebrial hemorrhage. A spinal tap excluded those and the final diagnosis was "Well, you MUST have contracted TWO of the new asian flu strains." My history is long and I will not include all of it here, just suffice it to say, I have had many, many surgeries which probably would have been preventable if I had been aware of Borelliosis. I am now left permanently disabled. In July & August 1998 (two separate bites) I was reinfected AGAIN, only this time the tick was co-infected with Babesiosis & Ehrlichiosis. After 3 months of i.v. therapy, InterCorp of America denied extended treatment for Ehrlichiosis (which can be fatal if left untreated). They "lumped" Ehrlichiosis with "Lyme" disease which allowed them to follow the protocols established by Alan Steere. Many of my acquaintenances have been "lumped" under the prevailing umbrellia of "Lyme" in order to be denied insurance coverage, proper diagnosises, testing and treatments. Wake up, NIH & CDC! Borelliosis, Babesiosis, and Ehrlichiosis are here to stay and wreck havoc on our nation. Funding needs to be addressed to promote research for treatments and cures. Money runs our Nation! Until our voices are heard we will continue to protest, write letters, send email, make telephone calls, and generally make a nuisance of ourselves because we WILL be heard and WE WILL MAKE A DIFFERENCE in someone's life today, tomorrow, and for eternity.
Marvina Lodge, President <lovey38@juno.com>
- 11/04/99 13:47:57 EST

I am not an activist, just a lyme patient who went misdiagnosed for six years. So far, since I am being treated for lyme very aggressively, I am improving slowly. I almost died because of lyme disease, and because of doctors not knowing first how to diagnose it, and then how to treat it. Infectios disease specialists will verify that Lyme does not respond the way they think it should, to antibiotics, neither the way they were taught it would. My infectios disease doctor compared it to Polio, when it was first diagnosed. He says some day we will understand Lyme.
Pat Overton <govertons@aol.com>
- 11/04/99 13:44:23 EST

Michael, I am a lyme sufferer and I was shocked by your article. I have been on antiotic therapy for 2 mos and I am just starting to feel better. prior to the antibiotics I was in and out of the hospital and noone could help me. I was finally diagnosed in August with Lyme disease and as I've stated for the first time in 5 years I can function as a normal person again. I think Dr. Steere should focus on helping people rather than using statistics to treat people. Everyone one is different and treatment should be viewed as an individual process rather than a set time.
Bonnie A Venuti <Venutib@polaroid.com>
- 11/04/99 13:42:24 EST

I found your article very interesting. I have had, what doctor's call IBS or irritable bowel syndrom for at least 10 years, and have not had much luck feeling healthy. Is there any chance this diagnosis could be confused with lyme disease?
Sue Pepper <peppers@polaroid.com>
- 11/04/99 13:22:48 EST

Many thanks for your story on the Steere protest. There's a lot of chronic lyme cases and not much interest in the media so far. It is so heartening to have someone take us seriously and treat us fairly!
lou <overman74@hotmail.com>
- 11/04/99 12:28:33 EST

Thank you Michael for printing an honest article about why Lyme victims are orotesting Dr. Steere's lecture. I am a 47 year old RN who has been unable to work for almost three years now due to late stage neurologic Lyme disease. Eleven years ago my family moved to NW NJ. Within four months our 9 year old daughter began suffering with terrible headaches 24 hours a day. She got little relief from pain medication. We frantically took her to 12, yes 12 doctors. We were told she had everything from psychiatric problems to a possible brain tumor to TMJ malfunction. She was poked, prodded and humiliated by some doctors who told her it was "eye strain" from reading too much. Finally we found a wonderful pediatric neurologist who diagnosed her with Lyme disease. After aggressive IV treatment, about 12 weeks later our daughter came to me and said, "Mommy, my head diesn't hurt anymore". I cried with joy. She continued treatment with oral antibiotics for a good while and today is a 20 year old honor student in college. She graduated from her high school class as president. I was diagnosed in 1993 after complaining of many symptoms for a long while. Armed with knowledge I insisted that I had Lyme disease since every other problem was ruled out. I was diagnosed properly by a Lyme literate MD and treated sucessfully with oral antibitics for 9 months, I was 85-90% better. Within 2 months I became so ill I was terrified. I had excrutiating pain in my face, ear, gums, throat and neck and brachial plexus. I was so "foggy" that I could not work, drive, cook or even speak properly. My left side became very weak and I suffered with repeated bouts of "aeseptic meningitis". I couldn't turn my neck, my head felt like it would explode and I vomited sometimes 8-10 hour at a time. I was finally treated with IV antibiotics and began to feel much better. Treatment ended too soon. I was still sick. I had such horrific pain that I sought help from a dentist who performed 8 root canal surgeries. That was followed by another dentist who pulled 11 teeth. My pain was still there. I had a TMJ arthroscopy to try and again alleviate pain. It was unnecessary. I also endured sinus surgery because of severe ear pain. Finally I was treated again for a long time with another IV antibiotic. My pain slowly decreased as well as brain fog. I had to seek the help of a neurologist who specializes in neuritic pain. Thank God for this doctor. Because I was denied proper treatment for so long and diagnosed so late, it has taken a long time to regain some of my former self. I know I would be dead today if my Lyme literate MD had stopped treatment at 4 weeks. I have had SPECT scans that clearly show severe hypoperfusion in my brain in the pattern seen with Lyme disease, NOT depression. My neuro-psych evaluation was terrible. The final comments from the psychologist were, "patient shows severe deficits in many areas of cognitive abilities due to the effects of neurologic Lyme disease. It is obvious that this patient cannot work". Many "Lyme tests were positive" but somehow were missing perhaps one band in order for it to be accepted by the CDC's absurd guidlines as a definitive diagnosis. What a joke!!! Their criteria is to be used for survailance purposes only. Seven MDs have stated that I have Lyme disease. Seven. Strictly due to proper IV therapy with the correct antibiotics, I am now able to drive most days and laugh with my children and husband. I am proof that IV antibiotics past the 28 day mark have helped me come out of a "coffin". How can anyone dispute success? Briefly, our second daughter was treated with IV antibiotics after orals failed during the summer before she left for college by a Lyme literate MD. She is doing well as of today. My husband suffered cardiac and neuro problems from Lyme disease. He also has been sucessfully treated with Iv antibiotics after orals failed. He insisted that he be treated with IV therapy and during the 7th week of IV meds, he began to turn around. He now exercises daily and seems well. I am an RN who worked in the OR for many years. Because I was diagnosed so late I suffer with neurological problems but am amazingly improved because my doctor treats me according to my symptoms. Lyme disease is a CLINICAL diagnosis. NO TEST exists today that can absolutely confirm the diagnosis of Lyme disease. Why is it that myself and my entire family have improved with aggressive treatment for Lyme disease? Because we have been treated by an MD who understands this disease and knows that chronic infection exists. Dr. Steere, who would watch their children be subjected to IV treatment if they didn't need it? It worked, only much past this "28 day" absurd guidline. Lyme is a bacteria. It doesn't know it SHOULD be dead at 28 days. "IT" doesn't think. Please examine youe consience Dr. Steere. We want to be well. We are being treated correctly and carefully. We are living proof that our treatment has helped us regain our ability to function. Please don't take that away from us. I head a Lyme disease support group in NJ. We had 160 people attend a lecture given by a Lyme literate person in the medical field. So many people are suffering and in that state have to fight for treatment that helps and gives them hope. People travel great distances to see a Lyme literate doctor because we don't have enough of them. This is a travesty that must be stopped. The "witchunts" must end. Let us be treated by our own doctors who are helping us join society again. My life and untold numbers of others depend on it. Sincerely, Helen Fasy RN livieitup@eclipse.net
Helen Fasy <liveitup@eclipse.net>
- 11/04/99 12:23:35 EST

Having been misdiagnosed with MS for 9 years, I am finally getting the treatment I really needed for Lyme. I saw 8 doctors in Oregon to just get tested for Lyme! Dr. Steere needs to go back to school. He is not helping!
Tom Norris <TOJUDRALL@aol.com>
- 11/04/99 11:16:53 EST

I WAS THERE AT THE NIH demonstration Dear Michael: Thank you for your article on the demo at NIH and Dr. Steere, Lyme, etc. I returned from the demo late last night. I wonder if you would do a follow up piece on it. I have pictures. The security had quite a talke with us, at the edge of the property, standing on area owned by Metro (subway system) we were still advised of the possibility of lockup in the County Jail. Picture it if you will, all of us old decrepit folks, canes, wheelchair, I brought my little stool since I can't stand for\ too long. We moved on to the very public portion of th sidewalk, after about a half hour talk from 2 security guards and the chief of security. There were at least 30 of us, from as far away as New York, New Jersey, Michigan, and Florida. One woman lost her car in Ohio due to breakdown and the good folks there kept it for her, and drove her to an airport to pick up a rental. She continued on, and was the second one to arrive, I believe. (I waas the first). It was important to her to be there since her sister had gone into a state of dementia in 1992. She believed it was induced by Lyme disease but could not prevail upon her brother-in=law to have her sister tested. In 1996 she took the extraordinary step to take her brother-in-law to court to have her sister tested for Lyme disease. Her sister tested positive for Lyme. Too late. She has not responded to treatment. One woman and her son came on behalf of her husband and their other son. The husband, a physician, has been unable to practice for 3 years due to Lyme. All 4 family members have Lyme. Two attendees were participants in an NIH study of Chronic Lyme sufferers. Both wore shirts with Ticks and other slogans. One had been variously tested by Dr. STeere's labs and tested negative - and yet tested positive at others. If she had rec'd immediate treatment, there would have been no need for her to be in a CHRONIC sufferers study. There were over 30 people in attendance, and when you take into account the debilitated state of most of us with Lyme Disease, that is an accomplishment in and of itself, particularly for an impromtu demonstration, as this was. One woman carried a sign littered with perhaps 20 of the many, many medication containers from her prescriptions over the years. She said it was just the tip of the iceberg. One woman came in a wheelchair, others with canes. Several had to make the trip in two days and they were physically unable to sit in a train or car, stand for 2 hours, and then sit again going home, all in the same day. Two security cars parked just up the block to survey us for the entire stint (approx. 2-1/4 hours). Another security car circled around....and around. Another security TRUCK (more room to place recalcitrants) pulled up onto the lawn and up on top of the elevated portion, perhaps 100 feet above demonstrators, to wait. People from NIH "happened" by and told us they supported us including one Lyme sufferer who wished that joining us would not endanger his job. At about 2:30 we entered Building 10, the Manaur auditorium (spelling?) in small numbers. They even had a female security guard in the ladies room. Another well dressed woman and I (equally dignified) happened to be standing there and the other woman, conversationally, said to the guard "Exciting day." The guard agreed and explained that it was all about "those Lyme protesters" and continued with explanation. Extra security had been called in about 12:30. The other woman explained to her that we were some of "those protesters." We engaged in polite conversation, she was interested. I showed the pictures of my 4 children, husband and Mother-in-Law with Alzheimers, all of whom live with me and for whom I can no longer function due to Lyme disease. The Lyme sufferers seated themselves variously in parts of the auditorium. We had been well warned by security that we could not engage in any sort of protest on government property or we would be arrested. We could not carry signs, we could not carry or distribute literature or "act up" or wear Lyme Green ribbons, as we were, as that would constitute a demonstration. So subsequently all of this had been stored, and we were a nice-looking bunch, indistiguishable from the other dignified audience members. Thus when the moderator began his introduction of Dr. Steere and commented that some of his viewpoints had at times occasioned controversy and advised the audience "as evidenced by people just off the NIH property demonstrating against Dr. Steere's approach," I don't think the moderator was aware these "protesters" or as I prefer, "sufferers," were now in the audience. We all came, I don't believe anyone left. Dr. Steere gave a historical talk relating specifically to Lyme Disease. It was actually quite good, a wonderful overview on a limited topic, Lyme arthritus, with a bit on the Lymerix vaccine thrown in. As a scientist myself I recognized that some of the slides presented were flawed with respect to the Lymerix Vaccine, and particularly as I had received an overview from a few people who had experienced problems with the Lymerix vaccine and have developed what appears to be Lyme disease from the Vaccine! More info on this is available on the net. One slide in particular concerned me. Without going into too much detail, it presented two groups, control group not given the vaccine (after one and two years) and study group (after vaccine one and two years) and the incidence of Lyme disease being contracted. Dr. STeere purported to represent that after one year the study group rate of contracting Lyme was much lower (percent success was not great, I could not write fast enough to write it down). Lets say 59%. After two years, the % of study group who did not contract LYme was listed (did get this one) as 74%. Dr. Steere represented that the people who DID contract Lyme disease after administration of the vaccine, (the remainders), 41% and 26% respectively) contracted it AFTER vaccine FROM A SUBSEQUENT TICK BITE. There was no consideration given to an alternative explanation which I have heard anecdotally and specifically from 2 vaccinated - that the Lymerix Vaccine itself brought on symptoms of Lyme Disease to them. I stop short of stating that the Lymerix vaccine gave them Lyme disease due to legal considerations and the fact that I personally have not reviewed their medical records. This became the substance of a question I formulated for him for the Q/A period, which was unfortunately quite brief. After the talk, the floor was opened to questions. I ws quite tired and there were a few incisive questions and an extremely astute comment, the substance of which was that in view of the negative climate for Lyme sufferers and the impact he had produced on frightening doctors, cooperating with insurers against doctors and patients, and inhibiting the research necessary to find cures for Lyme, that it seemed that our only hope was to look outside theU.S. to France and Germany for a cure. I am extremely tired even today from the trip and so can not give the accurate quotations I would like. One questioner had an excellent question which made Dr. Steere uncomfortable, and as acamedicians do, and they become quite good at it, he gave an answer which dissembled, and rambled, and implied that the fault of his non-answer lay in the inability of the questioner to understand his more advanced medical lecture. Actually this was not the case, as a scientist, I understood both the questioner and the dodging dance the doctor was doing as an answer. Quite abruptly (i would say about 4 minutes after questions started) and with lines of 4-5 people at both mikes, the moderator terminated the questions and announced Dr. STeere had to attend a subsequent reception. I made my way to the front of the room. I am a dignified and intelligent, well dressed woman. Subsequently the cadre of personnel and security parted for me and i stood right next to Dr. STeere and spoke with him for several minutes. As I am a scientist, I will represent him fairly. He was a nice man. Everyone who is reading this can flame me if you want, keep in mind I have 4 minors in my house, so I would appreciate it if you treated me with as much dignity as I treated Dr. STeere. I explained that I was suffering from Lyme Disease which we could positively identify as starting May, 1996, and that I had seen many doctors and only been diagnosed BY ACCIDENT in April 1999. I explained that I was currently between doctors, and the old doctore would not prescribe enough antibiotics to carry me over to the new one, Nov. 9, so I was with out medication these weeks. I explained that the effect of the way he communicated his ideas was that in our part of the country doctors were very frightened and many were too frightened to even test for or treat for Lyme disease or be aggressive enough in their treatment. I briefly explained my situation. He was quite nice and apologized to me not once, but several times. He next gave an ambiguous and dissembling answer to the gist of he did not have any control over how his remarks and work was interpreted by the medical establishment, by doctors, by infectious disease specialists (i had seen one who has a serious misunderstanding), and by institutions involved with medical treatment of Lyme. I thought he was being sincere (don't scream, all) and so I asked him if he would sincerely consider broadening his communication to allow doctors to feel that there was sufficient leeway for them to treat longer than 30 days and that this was not an absolute - - I can not remember the exact words although it will come to me later in the day when I am rested. He agreed and asked me if I would in return consider that there are other, alternatives to long-term antibiotic treatment of Lyme disease. I said I would be more than happy to consider that and to even seek out some of those treatments. Could he advise me what they were. I did pursure this topic further, and only this topic. He was quite nice. He was not defensive or angry. I asked what he would advise in the case of someone who was treated for, as he stated in his lecture what he had found sufficient, 3 weeks of IV or 30 days of oral antibiotic treatment, and still exhibited full blown Lyme disease with symptoms and positiive testing. He gave an ambiguous answer to the effect that he really couldn't answer since Lyme manifested itself in so many ways and today he was just speaking of the LYme arthritus, and it depended on what symptoms were presenting, etc. So I suggested that I simplify the question, suppose your child, Dr. Steere, your child had for a few years had a list of symptoms and particularly neurological symptoms, was undiagnosed for that period and now finally was just tested and turned up distinctly positive for Lyme disease. *Your child* was treated with antibiotic for 30 days and it was not successful. Could you name me one doctor or one institution you would send her to. Two things happened at the same time. He I believe said 'here' and the offficials surrounded him, interrupted me, and hustled him off to the reception. I said my goodbyes to the other Lyme sufferers who planned to attend the reception, including a local Washington D.C. medical attorney who also runs a Lyme support group. They planned to pursue their unanswered questions in the reception. I had a time frame of one hour in which there were 2 trains available to take me home, otherwise I would have to wait for several hours and pay additional funds. When I say "home" I mean taking the Metro to the train, to 30th st. Station in Philadelphie, walking a block, crossing 8 lanes of fast traffic with bad knees and pulling luggage, walking down 3 flights of stairs, catching the Blue Line subway to 8th and market, then the PATCO speedline to New Jersey, calliing someone to bring me my stored car, and driving another 1-1/2 hours to reach my home. I reached home after 5 hours of travel. Prior to leaving NIH I gave one woman who lived nearby an e-mail to send to my children, who were wide-eyed in New Jersey over the possibility of their mother being arrested at a "demonstration" such as they had seen on t.v. (civil rights, viet nam, etc.). I had made jokes with a twinkle in my eye that maybe I would be given a "free night, all expenses paid" to lighten up my leaving but they were concerned. "Kriss" sent them a positive message and told them I would be home by 10 - 11 p.m., which I was, barely. It was so wonderful to see, on such an impromptu occasion, the group of Lyme sufferers which assembled and to hear their individual stories. I did take many pictures of them with the signs, the weather, the security vehicles, the officials explaining about the county jail. I thought perhaps you might be interested in a more extensive followup article on the demonstration and on the current controversies and medical realities of Lyme sufferers. Michael, somebody has to tell this story. Information on attendees was collected. I took more extensive notes which I plan to issue to many papers in the form of a press release. I have several articles, and through my connections, can supply you with extensive research, articles, and people's stories, although I am sure your resources are more than adequate. Please contact me by e-mail and provide me with a way to telephone you and I will talk to you personally if you are interested in pursuing this as a topic. You should also be aware that despite Dr. Steere's "overdiagnosed/overtreated" perceptions of Lyme disease which have resulted in thousands of Lyme patients being denied medical care and despite the impact on the medical community of Dr. Burrascano being "raided"/shut down if you will, and despite the fright in the caring community of Lyme doctors over taking on Lyme patients or keeping current ones or aggressively pursuing this disease and incurring wrath from insurance companies, charges of fraudulent treatment by state agencies and boards, and the threat of paid Lyme "doctor/consultants" testifying against said Doctors, despite ALL OF THIS, the NIH is pursuing a study of Chronic Lyme Disease entitled "NIH Collaborative Study of Chronic Neuroborreliosis: A National Institutes of Health (NIH) Study of Patients with Persistent Signs and Symptoms of Lyme Disease." I have the pamphlet on this from a participant. I also have the 11 questions which were formulated to ask Dr. Steere at this symposium and others by a group of patients. Perhaps later I will post this to you. Thank you for your excellent coverage. Please continue to investigate and report on Lyme disease. I will always carry in my mind the picture of that group of debilitated, sick, sincere people in LYme Green ribbons with signs, traveling under great difficulty when every step is a challenge, every breath hurts, to stand on two feet when even that is difficult, under the watchful eye of 4 security vehicles and other patrolling personnel, asking the world to take a second look at Lyme Disease, which has become The New "AIDS" of this decade and bears many similarities in terms of multisystemic infection apparently incurable, and in terms of inadequate recognition and response from the public and medical communities.
Jeannine Der Bedrosian <jder@worldnet.att.net>
- 11/04/99 11:06:33 EST

I am protesting Dr. Alan Steere's guidelines for diagnosis and treatment of Lyme's disease
Marybeth Stewart <marybeth@psn.net>
- 11/04/99 11:02:01 EST

THE PROTEST AGAINST DR. STEERE IS WELL-FOUNDED. OUR FAMILY LIVES IN WILTON, CT AND WE HAVE BEEN LIVING WITH THE HORROR AND FRUSTRATION OF LYME DISEASE FOR OVER 4 YEARS. OUR 17 YEARS OLD DAUGHTER HAS HAD NOTHING BUT HEARTACHE DURING HER TEEN YEARS BROUGHT ON BY THIS LINGERING, FRUSTRATING DISEASE. DR. STEERE IS TOTALLY WRONG WITH HIS 4 WEEK PROTOCOL.......WHAT A SHAME THAT SO MANY HAVE TO SUFFER.....PERHAPS IF DR. STEERE'S OPPOSITION WASN'T SO VEHEMENT, SOME OF THE MEDICAL GENIUSES WOULD EMBRACE THE IDEA OF PURSUING A CURE AND BETTER TREATMENT AND OTHER ALTERNATIVES WHICH ARE NOW TOTALLY OUTSIDE OF ACCEPTED INSURANCE PRACTICES AND THEREFORE, COST PROHIBITIVE FOR PATIENTS, E. G. HYPERBARIC CHAMBER ET AL
MAUREEN S. BARE <LBM187@AOL.COM>
- 11/04/99 11:00:36 EST

I don't have Lyme Disease but a very good, close and personal friend who does. Her case went undiagnosed for about year and a half. This gal was a very healthy individual, worked out every day and was into physical excersize. To see her crippled up into a ball in agony and say she doesn't have 'Lyme' or some other disease is nonsense. Something is wrong. She is the kind of person that feels a good workout is the best medicine and won't go to a doctor until she's practically crippled. She resists antibiotics until she has no choice. This is not something people are doing to gain some advantage. I mean if you could get a week off work with no pain, I could understand why some people might 'feign' a disorder. I don't think such is the case here. These people are seriously ill. I understand that the doctors don't always find traces of the Lyme bacteria in these people. Although frequently more testing later will. I don't think the medical world understands this disease or it's progression well enough to deny people treatment that do give them relief. I'll concede the point that after 4 months of antibiotics, the Lyme is dead. But something else has to account for the heart palpitations, feeling of the brain being loosened from the skull, etc. And then why does this bacteria show up again? This disease (be it Lyme or something else) has destroyed peoples lives. It seems a little brazen of the medical profession to say, "we didn't find any bacteria - you're OK". Larry Holbrook
Laurence Holbrook <Laurence_L_Holbrook@mail.northgrum.com>
- 11/04/99 10:52:25 EST

If you changed "renowned" to "infamous", you would have a more accurate leadin. R. James Martin Euless, TX https://www.angelfire.com/biz/romarkaraoke/james.html
R. James Martin <rjamesmartin@yahoo.com>
- 11/04/99 10:43:50 EST

This is just to say that I would be extremely interested in any alternate treatment that Dr. Steere has to offer, other than antibiotics. I was undiagnosed for many years and, have now ONLY gotten better after long doses of rocephin. Without the treatment, I become virtually disabled by fatigue and memory and concentration problems. As a person who has SUFFERED with Lyme disease, I resent Dr. Steere's narrow view of what constitutes adequate treatment for all of us. Clearly, he is wrong in my case.
Mary Ryan <AddieRyan@aol.com>
- 11/04/99 10:32:09 EST

I'd like to thank you for writing about the terrible controversy surrounding the treatment of Lyme Disease. I have Lyme disease and I am sickened that NIH has chosen to sponsor a lecture that Dr. Allen Steere will be presenting on Lyme arthritis. Dr. Steere, over the last years, has taken a position that has caused inestimable suffering to thousands of Lyme patients. He has clearly overlooked a great, great deal of research that indicates that Lyme disease is frequently not cured after short term antibiotic treatment. The Lyme spirochete frequently goes into a dormant state to resurface months to years later causing the symptoms to reappear and often progress. The majority of research on this issue indicates, as well, that while antibiotic treatment often fails to cure these late Lyme sufferers, it CLEARLY brings relief and sometimes years of remission from this horribly debilitating disease. And, occasionally, long term doses of antibiotics do seem to cure some. Dr. Steere strongly advocates against the the use of long term antibiotics. Dr. Steere's criminal arrogance has influenced insurance companies and the CDC to create treatment guidelines that I'm sure, in the not too distant future, will seem barbaric. As a result, there seem to be thousands of doctors that a) don't want to treat the disease because of the controversy or b) treat it, but won't report to the CDC because of their treatments don't match the guidelines - therefore Lyme disease goes underreported and many Lyme sufferers go untreated, especially in non-urban areas where there are fewer doctors. I hope and pray that more attention is drawn to this matter in the media. Researched pieces that bring the truth to light could help so many Lyme patients, including thousands of children. A great majority of the research done on this subject completely contradicts Dr. Steere's thinking. Every major Lyme organization in the country strongly objects to his position. Elisabeth Feldman
Elisabeth Feldman <elsbeth@pacbell.net>
- 11/04/99 10:08:48 EST

I join other Lyme Disease victims who have suffered because of Dr. Steere's narrow and antiquated views regarding the disease. He persistently refuses to recognize the plethora of scientific evidence submitted by highly respected Phd scientists and physicians indicating that Lyme Disease can indeed be a chronic condition, and that cure can only be effected in numerous cases by many more than 4 weeks of antibiotic therapy, oral or IV. In addition, many chronic cases are the result of UNDERDIAGNOSIS rather than what Dr. Steere persists in calling OVERDIAGNOSIS. Lyme Disease is relatively easy to cure if diagnosed shortly after exposure. When a patient in a highly endemic area presents with ANY symptoms of Lyme, even though they may not have the 60% occurrence of rash, a clinician is irresponsible if he/she does not consider and test for Lyme Disease. Oral Doxycycline is the drug of choice for early Lyme Disease, and can have dramatic effect even for victims of chronic Lyme. Doxycycline is in the tetracycline family. Tetracycline is sometimes given to young patients for years to control and treat acne. Chronic Lyme sufferers frequently have negative tests for Lyme because the spirochetes that cause Lyme Disease prefer areas of poor blood profusion. Hence there are few spirochetes detectable in a blood sample. Many physicians, particularly in highly endemic areas, will at least give a trial of Doxycyline to patients with symptoms of Lyme but negative tests. Frequently these trials provide amazing relief from symptoms of pain, confusion, exhaustion, etc. Oncologists are not criticized for using highly toxic medications to attempt cures for their cancer patients...and insurance companies willingly pay for months of IV therapy. Dr. Steere's opinions appear to greatly benefit insurance companies who do not want to pay for Lyme Disease therapy....even in the face of obvious improvement in patients receiving more than short courses of therapy. His criticism and chastisement of other members of his profession may be inadvertently contributing to the frightening spread of Lyme Disease and the resultant pain and suffering of thousands of victims of the disease. An amazing and certainly curious reason to be lauded by the NIH! I am SO grateful that I have a courageous physician who has been willing to expose himself to ridicule in his attempts (mostly highly successful) to lessen the suffering of his patients.
Beth Shonk <shonk@GLS3C.com>
- 11/04/99 10:06:24 EST

I have been infected with the Lyme tick and even though was treated with antibiotics several weeks later ,still have problems. I have pains in my arms and legs,break out in unknown rashes. The site of the bite continues to itch and break out in small lesions.I have contracted many virus since being infected and this problem continues to plague me. It does not just go away in 4 weeks after treatment. That doctor should do a better survey of people infected. I liove in Missouri and most of the doctors here don't think much about this Lyme problem. Thank God for some that do.
S.A.Symes <sasymes@tri-lakes.net>
- 11/04/99 10:02:36 EST

I am one of the people Steere talks about that aren't really sick with Lyme. How could I be? I took antibiotics for a month and must be cured! Unfortunately, I still have symptoms (for several years)....which are improved by antibiotic therapy. I do not understand what is political about being sick. And, I think we have only seen the tip of the iceberg as far as the number of cases of Lyme reported. Steere does us all a disservice by his lack of scientific integrity and is obviously a front man for the insurance industry. Let him talk to some of the people who have lost their jobs, homes, spouses, everything because of this sinister disease.
Ron Glaessgen <ron@avidassociates.com>
- 11/04/99 10:02:17 EST

Dear Michael Lasalandra, I want to thank you for taking the lead among your peers, it takes bravery to break the status quo, may others follow. - Best Wishes Donna http://www.x-l.net/Lyme/
Donna Herrell <dherrell@x-l.net>
- 11/04/99 09:58:35 EST

Thanks for a great article. There seem to be two kinds of doctors. One kind arrogantly holds to a particular position and cavalierly dismisses all patients and research which don't fit their mold. The others listen to their patients and try to relieve their suffering. Steere and his cronies from Yale are in the first group and have discovered that the insurance companies and HMO's will reward them handsomely for their stance. Unfortunately, they have also cornered the market for research funding. The vast majority of doctors remain uninformed or misinformed. Many, many people go undiagnosed and untreated (and unreported). Many more suffer for years before finally finding a diagnosis, and then still can't get sufficient treatment. The catastrophic effects of the epidemic remain hidden, so there is little funding towards finding a cure. Steere and his kind sit smugly in their ivory towers, not only ignoring the suffering, but contributing to it. There is no honor in that.
Alan Buck <abuck@cape.com>
- 11/04/99 09:42:04 EST

I am out raged to say the least. The comments I just read are unbelievable. In 1992 I went camping, I came home took a bath only to fing 2 little black bugs. I was 16 at that time. My mother was scared, she had read 1 article about lyme and thought to call a few places to hace thease bugs checked out. She too thought I could be treated as if I had a flu. Sadly the local post office lost the pill bottle that had thease 2 small black bugs. We forgot all about them. A month went by and I started feeling like I had a flu. Now remember I was 16 very active many friends and a happy outgoing person. Why would I make any of the symptoms up? I went to the DR. to be dismmissed as having the cold that was going around. About a month later I started to have chest pain. By this time hey had me an a lite form of antibotics for possible broncitis. One day I broke out on my shoulder with this ulgy reddish rash only to be descibed as a bullseye. The chest pain got worse in the midnight hours my parents had no choice but to bring me to the local hospital. By that time my mother had gotten a book about lyme and much to her surprise most of the symptoms listed I have been complaining about for 2 months now. In the ER one DR. said I had a celluitis of the skin. That DR. unsure of his diagnoses asked another to come give a second opioion. This DR. said do a lyme test. IT's a book case. Well 2 tests later it was positive very possitive. My DR. at home treated me with antibotics which I now know was a way small dose. Do you want to know how many DR.'s I saw that were scared to treat me back then 7. Seven DR.s lyed to my face and said after a month I'm cured. At 16 my life was falling apart. I had to leave school to get home tutoring. I tryed so hard to get well and go back to school. I some days couldn't even see or walk. My next two years were decided for me by DR.s who were scared to loose their licenses. SO i'm wondering did you find this trumatising enough. AS remember Lyme is cured in 1 month. Well after 2 failed suicide attempts I found a real careing and knowledgeable DR. He treated me and noithing seemed to help. How dare you of all people tell me that 1 month is enough. I would love you to look me in my sick droopy eyes and tell me that. Finally after 3 years about 15 specialists of Lyme and an IV. I went into remmission. To me at 18 and a half actually this meant good bye sickness forever. I graduated from high school after I had to drop out because I didn't have enough credit to graduate because of the tutoring. I missed walking to graduation with all my friends. Finally at a finishing school I graduated with honors. I went right into college. My two years was cut short because of all my flus and bronchitis and upper resptory infecions. I had to leave school. I never figured this Lyme would come back. Well I'm in the last stage of lyme today. I'm on IV after trying everything eles even natrual herbs. I now have it 100% worse than I first did. I am 23 and now married. I got rediagnosed in oct of 98. Yep you must be right one month is all we Lymies need. I now have neuro problems. I've had bells palsey, I have sesiures, I have problems talking, walking, spelling, writing, doing just about anything. Yes I love Lyme don't you think that if for a second I believed that the DR.s that are now treating me hush, hush, were just lying or using me My family would not notice. My family and I know just about everything there is about this deasese. I now need to be babysitted 24 hours a day. I have a Picc line in my arm and I had all my freedoms taken away. You Dr. discust me and give a bad name to the many DR.s who try to help us any way they can. Instead of trying to pull the licenses of DR.s who are trying there best to help us they should pull yours. Isn't a DR.s place to help, to care, to heal? Well you are involved in none of these things. So no one should listen to you. Maybe the insurance companies should stop paying you off and you should spend some time doing more reserch. No matter what you say I know you probally know the truth. Lyme is a very bad life time illness. I would not wish this illness upon anyone, Not even you. Sorry for my spelling mistakes please remember I do have lyme. Tanya Klemick from NJ
Tanya Klemick <Ariel94949>
- 11/04/99 09:39:47 EST

Maybe Dr. Allan Steere would like to step into the shoes and live for one month the life of a Lyme disease patient....either getting two doses of IV antibiotics daily for 56 days and not getting cured or even relieved of the horrible symptoms of this disease or...maybe not getting any treatment at all. You know the old adage..."You don't know until you have walked in his shoes". Live with a person afflicted with this disease and see what it does not only to the person but to the family. We NEED research and we need treatment for these people. Thank you.
Jean Push <jhand@ibm.net>
- 11/04/99 09:32:22 EST

Thank you Michael for an objective piece (at last!) on the controversy regarding Lyme disease. Dr. Steere has made his career on what has now been proven to be an incorrect paradigm of the disease and thousands suffer because of his unwillingness to admit he is wrong. Medical research is beginning to support the theory that many diseases (including auto immune disorders) are actually bacterial in origin and the dynamics of these bacterial species are heretofore unstudied. Myopic attitudes like Steere's stand in the way of medical discovery. That his sphere of influence is what it is in frightening. Hopefully, thanks to articles like yours, the truth is being recognized. Thank you.
Martha Behrle <MrsMeister@aol.com>
- 11/04/99 09:24:07 EST

Thank you for your article! People need to know about the "true" effects of Lyme. I am 27 and I have two very young children and a wonderful husband that I thought I was going to leave behind from this disease. I felt like I was dying and nobody was getting me the help that I needed. I went through several drs. who didn't believe it existed in Indiana, but all of my tests came back positive. Now after 6 months of antibiotics I still can't leave the house on my own, I can't take my son to preschool or pick him up, my husband has to do all of the grocery shopping at midnight after he has worked all day and we have lost my income. I was a very bright, very active and very sociable person before the Lyme and now I wonder if I will ever be "normal" again. I never knew the meaning of the word "SCARED" until Lyme took over my life. Please help all of the Lymies get the help they deserve!
jennifer <dohning@evansville.net>
- 11/04/99 09:05:17 EST

Hi Michael- I don't usually offer a response to any of what I see in the media relative to Lyme Disease, but feel genuinely compelled to do so in this instance. I have struggled with Lyme disease each and every day of my life since June of 1982--the time when I seem to have contracted the illness. I was misdiagnosed for maybe several years and eventually was diagnosed in Philadelphia. A short time afterwards, I went to see Allen Steere (then at Yale), and was hospitalized for treatment with IV antibiotics. Some time later I again went to Yale for further treatment by Dr. Steere and was hospitalized a second time. I received little or no benefit. Over the course of the next seven to ten years I went through many additional courses of antibiotics--none of them remarkably helpful. I last saw Dr. Steere several years ago to discuss the possibility of Extracorporeal Phototherapy for my continuing Lyme disease. This is a known therapy that has proven curative to one man that received it back in 1993. The man had chronic Lyme Arthritis and remains free of the disease today. This is remarkable because prior to ECP therapy (which is used to treat other diseases such as Scleroderma, Grave's, and systemic Lupus)the patient had not responded to traditional antibiotic therapy. I was excited to talk to Dr. Steere about this since he himself was listed as a contributing researcher in the published paper pertaining to the above treatment. I had hoped that he would support my efforts to acquire the treatment since my serology is still very reactive (positve) for Lyme disease. No such luck and as usual Dr. Steere seemed to have little compassion for my particular situation. This is what the patients are reacting to Michael. It is a natural response by a patient population that is rightly disturbed by a man who has a limited technical understanding of Lyme disease, but no real understanding of the patient dynamic that is so strong in any poorly understood disease process. To be sure, antibiotics do work for some, but certainly not for all. Still, Dr. Steere fails to officially recognize the fact that Lyme disease presents an opportunity to explore other treatments, particularly ECP which may be curative in some instances and is thus deserving of serious clinical trials. Rather, he holds to an incredibly dogmatic view of the illness and more importantly, how the illness should or shouldn't be treated. Perhaps unfortunately, he is looked upon by many underlings in science as the guru of Lyme disease. This is because of a personally fortuitous melding of circumstances and time that provided an opportunity for Dr. Steere to "discover" Lyme disease in the late 70's. Since that time many things have changed but Dr. Steere has not changed his narrow view of Lyme disease. He still publicly endorses a rigid course of treatment, and is then prone to acknowledge treatment failures only in the context of other syndromes not directly attributable to ongoing infection with borrelia. This is another reason that patients are so rightly disturbed. The fact is that not enough is known to conclude that Lyme disease is effectively treatable by any particular modality. It is also obvious that science cannot unquestionably determine whether or not a particular Lyme patient is infected. Yet Dr. Steere continually acts on behalf of the scientific community as the scientific AND political figurehead in Lyme disease research and treatment--holding steadfastly to his way of thinking. How sad and ironic that he undervalues the patient position in political terms when he embodies the politcal difficulties associated with Lyme disease altogether. He has long ago closed his mind (at least publicly) to the difficulties of a patient population suffering with chronic Lyme disease. He has simply turned his back on many of the patients that he is ultimately responsible for. Sincerely- Mike Arnold
Mike Arnold <MArnold760@aol.com>
- 11/04/99 09:02:13 EST

Dear Mr. Lasalandra, I am a lyme disease sufferer from NJ. I have had lyme disease for over 4 years. When I became sick in 1995 I went to the doctors thinking they have all the knowledge. A year later after searching for a reason I had all these horrible symptoms (now I know as lyme disease). I found a Lyme test in my records run by the first doctor that treated me (only 3 months after the initial bite) that was borderline - the doctor told my husband and I it was negative. This doctor could of treated me and saved me from the years I have been ill. He must have known something about lyme disease since he wrote it numerous times in my records with a question mark after it. It took over a year of incorrect diagnoses to get proper treatment. I was told I had everything from the flu to MS from the so-called experts. They all failed to see that in my medical records it stated that in July 1995 I called the doctor about a strange rash and by October 1995 I had every lyme symptom that is listed in the early stage lyme charts. I have lost too much precious time from my family and friends because of this illness. I am mortified by doctors like Steere that get away with just brushing us aside and attacking doctors that are truly trying to help us. It takes an arrogant man to claim he is the pioneer of lyme disease and let countless numbers of people suffer at his expense. But, it takes a brave humble doctor to treat us and try to understand these diseases. These are the doctors we need now. Unfortunately, due to the persecution brought on by the arrogant man himself we are fearful of losing these doctors. I know too many people suffering from lyme disease (newborns to seniors). I have seen entire families devastated by this disease and not able to get treatment due to insurance companies and doctors that have to be cautious due to the politics of this disease. Please continue to help us with our fight for proper treatment of tick borne diseases and to support our lyme literate medical doctors. We thank you from the heart. Lonnie Maldonado
Lonnie S. Maldonado <lsmald@aol.com>
- 11/04/99 08:55:57 EST

I must admit I was quite appalled when a leading physician on Lyme made such ignorant comments. This man has not lived the life my sister has for the past four years. He should be ashamed of himself and his comments, and he should probably go back to school and read up on the subject and study some REAL life cases.................
Colleen <sam1ireland@yahoo.com>
- 11/04/99 08:46:23 EST

Bravo to you for a very fair article on the Lyme Disease patient's rally at Dr. Steer's lecture at the National Institute of Health. I was at the rally to protest Dr. Steere's antiquated and close-minded policy that Lyme is easy to diagnose and treat. I have had Lyme for 17 years. By the time I was finally diagnosed 9 years later it had invaded my nervous system I was severely ill and I still have residual damage. My husband also has Lyme. WE do not think Lyme is easy to diagnose and treat.
Melody O'Beau <NinaRanU@aol.com>
- 11/04/99 07:57:35 EST

I went 5 years undiagnosed and treated for over 5. My doctor now is reluctant to continue to treat and each time I attempt to go off the antibiotics, I relapse. I currently have been off for 3 months and am at about square one. I feel as though I don't have it in me to fight this anymore. Thank you for your article and for putting your energy into this fight. I'm tired of feeling like an addict that is trying to secure illicit drugs!
mary hallsten <toetoetoo@aol.com>
- 11/04/99 07:39:00 EST

please don't cause us to suffer anymore tham we all ready do. this disease is horrible and difficult to eradicate. I am so sick. please change your comments
Beth Gorman <emg64@aol.com>
- 11/04/99 07:06:27 EST

I cannot thank you enough Mr. Lasalandra for your excellent story about the Protest at the NIH....I cannot wait to read the follow-up story on the events of November 3. I also thank the protesters for their efforts on behalf of those of us who have suffered so long with this disease, and have not been able to get treatment thanks to the Steeres of this world. I was pleased this morning to hear Rita Stanley Ph.D. on my local radio news in Philadelphia, discussing the reasons for the protest and how Steere has single-handedly caused so much grief for people who were unfortunate to have been bitten by a tick. When I first got sick with this disease, I used the internet to get information, I was shocked and disbelieving of comments I read from people with long term Lyme disease. I believed the ignorant physician I sought treatment from. He told me Lyme disease is easily cured with short term antibiotic treatment. I thought that the comments I was reading rejecting what this doctor said were from screwballs....Wow, was I in for a rude awakening. I know now there is no such thing as "antibiotic seeking individuals" only people who want to get well. There are no such things as "Lyme-cults", only support groups, trying to band together to find research dollars to find proper treatment and a cure for this disease. I know of no other disease that receives so much grief, why is it a political issue??? Why do physicians ignore the patient, and listen to Steere. I wish I could write more, but I have recently stopped taking antibiotics, in the hope that I will again test positive on Lyme serology tests.....hopeful that if I again test positive, my insurance company will pay for my intravenous antibiotic therapy. Since stopping antibiotics, I find it so difficult to think clearly or to express myself verbally. Previous neuropsychiatric testing results allowed me to win approval for SSDI, and permitted me to have 6 weeks of IV treatment. I quickly relapsed after this treatment. It was not enough to penetrate the damage the spirochetes have done to my body and my brain. My long-suffering physician fights hard for his patients, but he can only do so much, his hands are tied by insurance restrictions. He has a family to support as do so many of us. He knows how badly we need long term treatment, but he is one man against a medical community who listen to the likes of Steere, who's only claim to fame was that he was in Lyme, CT when this disease was recognized as endemic. Thanks again for your article, please don't drop this "hot potato" as so many other reporters have done. Marta McCoy Chronically Ill since August 1996
Marta McCoy <mlmccoy@jersey.net>
- 11/04/99 07:01:47 EST

Alan Steere does not deserve this accolade as a doctor or as a human being. Since when do we reward his gods greed and avarice with special awards? It truly is a slap in the face for anyone sick with late stage Lyme, or Lyme caught in time to be cured. On the whole, we membes of the Lyme community, at a grass roots level, cannot even receive adequate treatment for Lyme Disease because of this man and his "opinions" which the throws out like facts. Ultimately, he's a stooge for the powers that be, who do not want to let the people in our country know that Lyme is a second infections disease that there is no cure for and that's one of the main reasons our government has swept it under the carpet. Alan Steere should not be getting accolades instead he should be being investigated, as what he's done to both Americans and citizens of other countries by his writing of opinion as facts, deserves investigation much more so than our president did for lying about something 99 percent of the population would like about to. I'm not excusing him, but he's not costing lives and Alan Steere is doing that directly and indirectly. It's true that Lyme Disease rarely kills quickly, some people have died because of it but that's not common. Instead, Lyme Disease and all the difficulties in even getting modest treatment for it cause unbelievable stress to people already very sick. Instead, Lyme Disease, kills us over decades, inch by inch, year by year. As each year passes, we gain new symptoms, lose skills, memory, physical abilities. We can even finally lose sense of self worth, and some people even doctors like Dr. Blewiss, who was hounded by his peers, commit suicide. I believe Alan Steere and his cronies at Yale and other institutions who support his unsceintific claims are every bit as guilty as the war criminal tried at Neuremburg. That is strong, and it's meant to be, he is killing us slowly but surely because we cannot get the necessary medical treatment we need. My own medical records were reviewed by some doctor at Yale and I'm not even allowed to know his/her name. I tested positive on Western Blot, seronegative on ELISA. Had I tested positive on both I would have been told they were false positives and still wouldn't be able to receive treatment. As, it is, I somehow slipped through the cracks by the insurance company and got approved for IV infusions. Oh what a wonderful surprise I had! I was given a glimpse of what my life could be like if the late stage Lyme Disease with neurological involement could be treated effecively and possibly go into remission. So many things changed, some had not changed in 29 almost 30 years. Yet, at the same time I almost wish I'd never been given the infusions so I wouldn't know that it's this man and greed along with some other guilty paries, who are keeping me from being able to reclaim my life from this disease! I was never diagnosed and never treated for Lyme until approximately 34 years after I acquired it. maybe sooner. I ws given minimal infusions and told that was it, the same treatment as someone with Lyme diagnosed and treated in a timely manner. This is crazy! I didn't believe it, never even knew anything about Lyme until a new doctor selected out of the Yellow Pages, wanted me to be checked for Lyme Disease, "to rule it out" as a causative factor in the constant chronic pain I'd suffered nearly a decade. My own pcp had never even suggested this was possible and back in the beginning when I only had the all over joint pain I was sent to a pulmonary specialist to reconfim a diagnosis made by a doctor who specialized in RA. Instead the the doctor would not confirm the diagnosis and tole me to be glad I had so much pain because it would probably spare my other organs. Knowing what I know now after reading and becoming an informed consumer patient, know the pulmonary doctor, 3rd doctor out of about 20 I'd seen, suspected I had Lyme or Lupus, but never shared this information with me. It's possible had the doctors not been influenced by Alan Steere, the supposed specialist in Lyme Disease, into believing Lyme was not big deal and 14 days of the antibiotics would cure it, that the Lyme Disease would not have gone undiagnosed and untreated most of my adolescent and adult live. I don't believe I would have become disabled when I couldn't make my body do what it wasn't able to do anymore, no matter how hard I tried to force my body into complance. Doctors, educators, pharmacists, medical boards, patients, family, friends, researchers one and all are affected by Alan Seeres words, like they are "the gospel according to Steere" and never look any furher for information. The truth is our cattle, dairy, poultry, and swine industries bear a big blame in the fact that infectious disease are becoming immune to the antibiotics used to treat them. Resistant strains and people being very sick and or dying. Any Baby Boomer and those that followed afer have been ingesting antibiotics for many many years since the owners of these concerns found out that feeding antibiotics caused less loss and higher profits. Again, the gods of greed and avarice! Yet the media is fed stories that the government wants to hear, just as the soaps are, and other areas of mass communication, and these stories lie and say the patients forced the doctors to give them antibiotics when' they were not needed. Come on, how many doctors have you ever seen who would give you what you wanted? It doesn't work that way, they gave us antibiotics because it was the thing to do in those days and everyone did it. It was faster and cost more than explaining to the patient that he/she wouldn't be helped by the antibiotics and then the doctor could get out of the exam room and see the next patient. Even the amounts we did receive from our doctors in no way account for the difficulty in treating infections diseases like Lyme and Syphilis, a cousin to Lyme. I suspect, and I will state this whole respons is "my opinion" which is more than Alan Steere will admit to at any time, that Lyme Disease requires higher doses and longer treatment in part because of the kind of bacteria it is, but also due to the resistance built up in the people who have Lyme from all of the antibiotics fed to potental food sources so the bootom line guys could make bigger profits and so the little guys could keep up with them too. But, the Lyme spirochete (rhymes with parakees) can and does shed it's outer surface and then goes into the tissues and cannot be detected by your own immune system and thus the reason why someone like me who has had Lyme Disease so very long that went undiagnosed and untreated, would and could test seronegative on the ELISA test, which most doctors and scientists believe is worthless and the Western Blot is the better testing tool. But here again, we have bias, the CDC left off 2 bands specific to the Lyme bacteria and if someone is unlucky to test positive for these bands, and positive for only one other band then that person is considered not to be positive by Western Blot for Lyme. The CDC covers itself by stating that the tests should only be used to help support the clinical diagnosis of Lyme Disease, not to exclude it. Yet, that is exactly what is happening. One very good reason why the NIH study on late stage Chronic Lyme may fail, not enough people have late stage Lyme that has not gone intracellular and thus cannot test seropositive on ELISA and or on the bands used for Western Blot. It doesn't make them any less sick, and that's why Lyme Disease is determined by clinical diagnosis. Yet my own doctor's findings and that of another doctor are ignored because a doctor at Yale said I did not have Lyme, but he never examined me, he is being paid by my insurance company to render a decision that medical treatment is not necessary, yet I was have episodes of waking paralyzed in the nigh and seizure type episodes. I have over 20 year history of unexplained joint pain, a 10 year plus history of chronic pain, asthma, Lyme Arthrits, Chronic Fatigue, Myofascial and Fibromyalgia Pain Syndromes, spra ventricular tachycarddia, my body has year by year become less able to be mobile in spite of every therapy known, I've suffered sleep deprivation since age 28 and am now 49, suffer with horrific headaches not touched by migraine treatments, have degenerative arthritis in my right hip, have both cervical and lumbar herniated discs, and have at times lost partial vision and had near sinking epidodes, possibly seizures. I have been examined by 8 physicians who agree I have Lyme Disease and all the above symptoms too, only 1 single doctor said I didn't and he is the only one the insurance company listens to because they pay him to render his decisions in his favor. I can't prove it, but with 8 to 1 ratio, 4 doctors being from the Social Security Administration, I don't think I need any other proof. I hope you truly understand how desperate I am go reclaim my life to post this in such a public way. I truly do believe and it's my opinion that Alan Steere is very little different from Hitler. Wishing us all health and freedom from pain, both physical and emotional Sandra Smith Texas
Sandra Smith <swsftwtx@earthlink.net>
- 11/04/99 04:08:41 EST

I would just like to add that the ethical doctors that are treating Lyme patients with longer courses of antibiotic treatments are constantly harassed because they disagree with Dr. Steere.These doctors started treating Lyme patients with longer courses of antibiotic treatment becausetheir patients quickly relapsed when antibiotic treatment was stopped.These front line doctors have treated thousands of Lyme patients successfully.Many patients require open ended treatment for this chronic infection but are dnied treatment from insurance companies based on Dr Steeres protocol.The complaints filed against these good doctors are usually anonymous or come from insurance companies that want to follow Steeres advice to save money.This aspect of Lyme treatment is well known to patients and their doctors but the general public doesn't know what is really going on behind the scenes.I hope you will delve into what is being done to doctors who dare to disagree with Steere.IT is important to note tat in he case of the Michigan doctor that Steere testified against thahi paients had gotten better and none of them complained and were at his trial supporting him.It is about money for insurance companies and ego for others like Steere.What is being done to these doctors who only want to heal their sick patients is reminiscent of the Salem Witch Trials.Please investigate this.
Kerry Kineavy RN <Markin7@webtv.net>
- 11/04/99 03:53:00 EST

Thank you for bringing to light some of the struggles that Lyme patients have had to endure as the result of Dr. Steeres treatment protocol.Lyme disease is a serious bacterial infection that is disabling countless Americans.The fact that many patients are mis-diagnosed in its early stages has left patients suffering from the serious sequelae of Lyme Disease.Patients can become totally incapacitated because of severe neurological damage ,debilitating arthritis,memory problems,heart problems,and the many other symptoms that leave Lyme patients so ill that many are unable to lead normal lives.Patients have died from undertreated Lyme Disease.Others have chosen to take their own lives because not only does the infection affect the brain chemistry causing depression,the severe pain and suffering leaves these patients feeling hopeless.Longer courses of antibiotic treatment is the only treatment that can restore Lyme patients back to health.There are other chronic bacterial infections that require long-term antibiotic treatment because of the high incidence of relapse.Acne is often treated with long term antibiotic treatment.TB exposure is treated for one full year even without active disease.Chronic pyelonephritis ,a chronic kidney infection is teated with open-ended antibiotic reatment for years.I suffered from chronic pyelonephritis for the first ten years of my life.I was on antibiotics for years.I often required IV antibiotics because the infections were so debilitating that I developed seizures and lapsed into comas.It was the antibiotics that restored me to health and saved my life.My kidney was removed because the repeated infections detroyed it.Antibiotic treatment is needed desperately for Lyme Disease.The fact that patients are denied treatment when they get better is apalling and would never happen in the treatment of other infections.Dr.Steere commented that it has been his experience that treatments other than antibiotics should be used Dr.Steere has never had Lyme Disease.Lyme patients do get better with further anibiotic treatment.I have Lyme Disease.Antibiotics have greatly eased my suffering.Thank you for writing about Lyme patients.They are often ignored.I hope you will write more articles about Lyme Disease.Massachusetts ranks fifth in the country for Lyme .It is a growing public health issue that needs immediate attention by the DPH and our local and state politicians .Thank you
Kerry Kineavy R.N.-So.Boston
- 11/04/99 02:35:41 EST

It is crucial to lyme disease sufferers that both sides of the story get told. There are many honorable, astute lyme literate doctors who know that lyme can persist for years, even after rigorous antibiotic treatment. Samples of body fluids and tissues have shown this to be empirically true. The fact that many lyme sufferers feel better when on antibiotics suggests some kind of on-going infection, or mechanism worthy of research. This is not a placebo effect or a case of malingering, this is serious, chronic infection of the body affecting the neurological, cardiac, immune, muscular, and who knows what other systems. It is outrageous that doctors who are trying to treat and help their patients are the ones being harrassed, while the doctors on the insurance companies payrolls are the ones being honored. What is wrong with this picture? It is curious that Dr. Steere has claimed that doctors trying to treat suffering patients are somehow doing it for political or financial reasons. I suggest there is some kind of projection going on here. Dr. Steere would claim I don't have lyme. I had a tick, a bite, a rash, an acute illness. My lyme disease tests didn't turn positive until I'd been ill for eighteen months. I was treated for many months with antibiotics, but I am still not well. I've been sick for over seven years now. I graduated second in my class from my Columbia University graduate program, but find it difficult to write a sentence, spell a word correctly, convey my thoughts. I've developed a serious dyslexia since becoming ill with lyme. I treasure my 'good' days because I can see my patients, clean the house, and smile at my friends. I deserve to be heard along with all the other lyme disease patients who are being 'pushed' through the cracks, and out the doctor's offices by the politics of the insurance companies, and those of the medical profession. My god, who are these people supposed to be serving? Who are they supposed to be helping? Why do we blame the sick patients desperately trying to get well, and the doctors who are desperately trying to help them? And why do we honor the one who claims there is no chronic illness? the one who has served as an insurance company consultant? Does this not suggest a conflict of interests? What are the dynamics behind the denial of this disease?? Politics, finances, professional rivalry.. I suggest this issue demands more attention than it has been given, especially by the press. I think it's absolutely crucial to delve into the denial of this disease, to understand what it's about, and then, to break through it so this set of chronically ill people in our country can get recognized, repected, and helped.
Lainie Hinnant <lainiell@msn.com>
- 11/04/99 02:26:03 EST

I've been sick for 10 years. I've been tested for everything, the only positive test I ever had was a Lyme test. They gave me 3 weeks of antibiotics and said I was cured. I still am incredibly ill, but because of the Infectious Disease specialists who follow Steere's lead, they claim my illness has nothing to do with the only positive test I ever had. Does this make any common sense at all? No. It also does not make sense for Drs. to disbelieve patients who say they are sick.
Edwina Steussy <ed_wina@hotmail.com>
- 11/04/99 02:01:54 EST

Dear Mr Lasalandra, Thanks so much for daring to write an expose regarding the politics of Lyme disease. I feel that I myself am a living argument of Dr Steere's overdiagnosed, overtreated methods of dealing with lyme disease. I was originally diagnosed with Lyme in early 1992 after 9 months of illness, and an initial diagnosis of "stress and depression" from a distinguished hospital in Boston. I was given my three weeks of antibiotics and sent on my merry way. Although I never felt completely cured, I was able to return to a very active lifestyle and a career as an occupational therapist. After a job change, and a backpacking trip in Maine, I relapsed and was rediagnosed with Lyme disease in 1995 via a positive ELISA, PCR and an equivocable western blot. Although I live in MA, I had to travel to NY to see a doctor who was knowledgeable, and willing to test and treat me for lyme. Now, 4 years later, with nonstop antibiotic treatment, including almost one year of intravenous medication, I continue to have a brain spect scan that reads like a block of swiss cheese, am on social security disability and unable to work or partake in many normal everyday activities. I encourage you to continue investigating this issue and reporting it to your readers so that people can see the awful truth about this insidious disease. Thanks again!
Marci Linker <Woodi16@aol.com>
- 11/04/99 01:29:25 EST

Michael, Thank you for your article on Lyme disease. Like many others I have lost years from my life, and am still struggling to overcome chronic lyme disease. Perhaps if we had a truly accurate and reliable test all the controversy would disappear and all the sick patients would be treated until cured.
Lee Lull <leema@earthlink.net>
- 11/04/99 01:28:31 EST

I was one of those patients that Dr's thought should be treated with other methods for my symptoms of Lyme Disease. I live in Nevada where there are few deer ticks, so I did not know much about them. The tick I had was in my neck for over a week until it died on meand only then did I find out it was a tick but still did not realize it was about to make me very sick. I believe the tick got a free ride to my home in Nevada via my husband when he went pine cone/pine nut hunting in the mountains in California. I was diagnosed with Lyme from the symptoms and rash I was left with. I was put on antibiotics but probably already had the disease for six weeks before I got treatment for it. That treatment of antibiotics did not help and the Dr. would not give me any more antibiotics, he said I was cured from the Lyme disease. That was five years ago and many different medications of which none did me any good. I steadily got worse with joint and soft tissue pain, fatigue, joints freezing up, fevers, severe sweats, cronic hives that would choke off my throat and would be all over my body. I also broke out in what looked like misquito bites all over and when these were scratched they would turn into huge open sores and they would not go away even after numerous prescriptions of Cortizone. Nothing helped. The diseae progressed to my digestive organs, gall bladder, kidneys, pancreas. All the usual test were run and the Dr's did not find anything wrong with these organs so they just did nothing at all. I lived with severe pain from various attacks of these organs for about two months then when that subsided I was left with chronic pain in the right side, and back from the gall bladder done thru the intestines and any sudden movement was very painful but otherwise liveable. It was very hard to drag myself to work everyday and I couldn't some days. But I have to work, so in order to keep my job I would go on days when I was in deep pain and very fatigued. I have lived with the pain in those organs for over a year now. I found a Dr. to prescribe anitbiotics and slowely started getting well. I was able to get off a lot of the other drugs that had been prescribed to me by other Dr's. After a year on the meds I am doing well with just slight stiffness and minor pain. I have been off of the antibiotics now for over two weeks. I am also off all the Tylenol and Celebrex and other drugs I was taking to control symptoms. I am sleeping betting for the first time in five years. Getting more energy everyday. Don't know where this will all end but I wanted you to know that nothing else helped me until I started the antibiotics. Before that, Dr's prescribed many, many different drugs that cost the insurance company a lot of money and did me no good, I threw most of them away. I was even prescribed a lot of cortizone which did not help at all. Hope this helps someone to understand that with all the misinformation out there about Lyme Disease nothing really matters unless the drugs help and I am proof that the antibiotics really do help. I am beginning to have a life back. I hope you was able to read all of this and I am sorry it was so long, but I feel I have to tell people in hopes someone will listen and start helping out those persons that need the help. I know there are risks taking antibiotics but there were risks taking all the other meds that did not do any good such as the cortizone that some Dr's told me I needed to be on. Thank you for reading this.
Priscilla Horne <Wynn4@aol.com>
- 11/04/99 01:12:09 EST

1st: Steere was NOT the discoverer(?)of Lyme Disease.It was Polly Murray.Read her book,The Widening Circle.Willy Burgdorfer, PhD.MD(hon.)discovered the causative agent,ie,Borrelia burgdorferi in 1981.Steere only linked thearthritic condition in children with Lyme,Conn hence the name Lyme Disease.Why not check out the "other camp"? There will be a conference on Nov.13&14 at Bard College,AnnandaleRd.Annandale,N.Y."Lyme Disease & Other Spirochetal & Tick-Borne Diseases: A Two Day Discussion of the Most Recent Developments in Research & Clinical Management" for ques.call(914)297-6472(M-F 9:00-5:00) E-Mail LymeConf@aol.com Why have a vaccine if Lyme is SO curable & NOT life threatening?????????????????????Sincerly....Janet Jemec
Janet Jemec <JanJem1@aol.com>
- 11/04/99 00:44:28 EST

I want to confirm that the pain and suffering of chronic lyme is real, and the disease can be managed and held at bay with aggressive, long term antibiotic therapy. Many people with chronic lyme may appear to have one of the many autoimmune disorders like lupus, rheumatoid arthritis and multiple sclerosis, but we are finding that with aggressive antibiotic treatment these so-called auto-immunde disorders disappear, ie the causitive factor is not the immune system going haywire, but a tickborne infection or other similar infections. I live in the pacific northwest where we have exposure to Lyme, but little recognition of that fact. Thus many doctors overlook Lyme disease as the cause of their patients disorders and, as in my case, may give the wrong diagnosis (in my case it was Rheumatoid arthritis). Once correctly diagnosed, this disorders either subside or can be held at bay with antibiotics. Another often overlooked fact about Lyme is how comminicable the bacteria is. There are many families...like my own where the mother has passed the disease on to her children in utero...and spouses, such as mine, who also have the disease. There is a reason this is one of the fastest growing epidemics in the country! Fortunately there are a few wonderful, dedicated doctors that understand the severity and complications of Lyme disease. I applaud your attention to this fast growing epidemic and controversy surrounding it. Kathy Meyer
Kathy Meyer <akmeyerearthlink.net>
- 11/04/99 00:39:04 EST

Renowned Doctor! More like infamous Dr Steere.......is a man that sold himself out to insurance companies! He cares not about the people or lyme disease he mocks us with chronic lyme....he only cares about the moneies he makes to lie about lyme......he really couldn't be that stupid could he??? 4 real here carla cccooks@aol.com
Carla C Cariglia <CCCooks@aol.com>
- 11/04/99 00:36:34 EST

I have late stage Lyme Disease that is affecting my central and peripheral nervous system, as well as causing arthritis, myalgias, and severe fatigue. I am 47 years old and have been unable to work for 9 years now. I have tried every treatment available that I can find. The only thing that keeps me even remotely functional is to take antibiotics all the time. I have a relapse within just a few weeks of stopping the antibiotics. I might add that the Lyme was not diagnosed with me for over a year when I was first ill, and I suffered "aeseptic" meningitis as one of the early symptoms. Dr. Steere and his followers are wrong--plain and simple. They are narrow minded and rather than look at facts and patients, they prefer to deny and diagnose neurosis instead. Unfortunately, Dr. Steere's denial of the problem and his radical protection of his denial flavor his research, and because he was the first researcher to find the disease, he receives a lot of research money to support his beliefs that are biased by his denial. I think that he is so protective of his ego and his opinion that he cannot see beyond his first research. However, his research showed that 2 weeks of penicillin was the cure, now I see that he says 4 weeks is necessary, and penicillin is not the drug of choice. Perhaps with enough time, even he will come to decide that Lyme disease research is still in great need of new answers.
Susan Raley <VanceGirl5@aol.com>
- 11/04/99 00:25:34 EST

Thank you for your article re Lyme Disease......I can only echo what every one else has said....well almost everyone else. We need to get on with the research and allow Dr.s to treat and patients to get better. Enough of the politics.
Happy <hapsquilt@aol.com>
- 11/04/99 00:10:31 EST

There are many misconceptions about Lyme Disease and Dr. Steere. 1. How did Dr. Steere discover Lyme? 2 housewives in Old Lyme, CT; Polly Murray and Judith Mesch; noticed the many children who were afflicted with arthritis and contacted the CT Public Health who in turn contacted the CDC. The CDC asked Dr. Steere, who was a fellow at a nearby university to look into this. Dr. Steere and many other people never mentioned again, discovered a tick that was causing this type of disease. Dr. Steere was not ASTUTE but was requested to follow up a request by the CDC. 2. Dr. Steere mentions the scientific studies. Where are they? Who has collaborated on them? I have searched the web and could not find the studies. I found many papers with unsubstantiated statements. Purely anecdotal. 3. I did find one "study" performed at the Yale Lyme Clinic of 209 patients. I will be very brief and summarize: These patients were catergorized by the Yale physician's if they did/did not have lyme in "their" opinion and some blood tests that have been proven unrealiable. These Yale doctors also determined these patients did not have lyme, may have had lyme but have something else, or may never had lyme based on their "opinion". Thus your medical study of the over reporting of lyme. Incidently, the author of this paper stated the study may have been flawed. There are many more inaccuracies pointed out in the study but since it was performed by the Yale Lyme Clinic, so what. 4. I believe the CDC has forgotten the history on how Steere got involved with lyme and should award the housewives for being astute. 5. The CDC and NIH are contributing to the fraud, waste, and abuse of federal funding when they continue to fund Steere and his research. 6. We need answers to this horrible disease not political fighting and back stabbing by the medical main stream physicians. Put your energies and knowledge together so that the patients can get off your backs and back into being productive citizens. PS By the way, the 18 protestors that showed up should be congratulated not bad mouth by the anonymous medical person who wrote in earlier in the evening. This anonymous person had a very bad attitude and is obvious they don't understand Lyme Disease.
Anna Novy <anovy1@aol.com>
- 11/04/99 00:05:26 EST

I wish Dr. Steere could have seen my mother suffer from Dec. 1996 until March, 1999. No one beleived a 74 year old living in Atlanta (5 minutes from CDC) could have a disease caused by a tick. Six weeks before she died of what doctors called ALS, her bloodwork was positive for Lyme. She was "under diagnosed" and "over tested" for the WRONG diseases. We will miss her, but hope her story might save the life of someone else.
Deborah C. Neel, Ph.D. <dcneel@aol.com>
- 11/03/99 23:57:19 EST

Thanks so much for writing your story about the Lyme victims protest of Alan Steere's NIH presentation. This is only the tip of the iceberg -- Lyme disease is such a devastating issue for so many of us. The politics and moneyed interests that have been determining whether patients are properly diagnosed and properly treated have created a situation that can only be termed criminal. One day, this period in the evolution of our medical system -- and the treatment of Lyme disease victims -- will be spoken of much the same way we now speak about Joseph McCarthy. At the time, nodody would challenge him and many people suffered as a result; in retrospect, we all can see what an injustice was foisted on the public. Lyme disease will eventually be recognized by the entire medical community to be the prevalent, complex and treatment resistant illness that "lyme literate medical doctors" (LLMD's) already know it to be. I have personally been suffering with Lyme disease for more than 11 years. The first major bout with it took more than 3 years of arrogant misdiagnosis before it was properly labeled -- I was alternately told that I: - needed more sleep - needed more exercise - was over stressed - had migraines - had MS - had a brain infection - was depressed - was a hypochondriac After three years of this, the various specialists finally all agreed that I did, indeed, have Lyme disease. I was treated aggressively, and all symptoms disappeared for about 3 years. Unfortunately, the treatment wasn't sufficient to knock it out completely. A few short years go, symptoms started coming back slowly. The same three doctors again insisted that I had migraines, depression, sleep deprivation or perhaps just seasonal allergies. After a year of this, I went to another doctor who took a blood sample and obtained a postive lyme disease "PCR" (polymerase chain reaction) test result for me -- proof that there is an ongoing active infection in me. It has been at least eleven years since this saga began, and I am just now getting all my various doctors to acknowledge that I have been misdiagnosed and under-treated for the better part of a decade. I will never get back the 11 years that I lived at "half speed", but I have a shot now of living the rest of my life more normally. After having been sick so long, it's not clear whether a complete cure and remission of symptoms is reasonable to expect. It is only through public recognition and understanding of the situation that it will ever be reversed. Thanks again for writing about the protest. I hope you will consider following up on the topic, as it is a desperate and widespread issue that needs far more visibility than it has now.
Jonathan R. Strong <jrs@strong.com>
- 11/03/99 23:55:54 EST

Dear Mr Lasalandra, I am a family physician who also has a 17year old daughter who suffered terribly from Lyme disease. It required 7 months of multiple antibiotic treatment to help my daughter recover. Luckily she is well now. I have done an enormous amount of research on Lyme disease. Dr. Steere has done great research for us in understanding EARLY lyme disease. However, unfortunately, he is still treating lyme disease with 15 year old recomendations. There are very few illnesses that we treat today the same as we treated 15 and 20 years ago. Lyme disease is no different. His proclaimed treatment regimend is severly outdated. Dr. Steere has ignored so many important issues in Lyme disease, it has resulted in an overall dis-service to Lyme sufferers. Unfortunately, we as physicians, have very little time to study in depth about new discoveries on diseases, and/or communicate with front line physicians treating a specific disease, that we "listen" to the one who has the greatest exposure. Dr. Steere has tremendous exposure on the topic of Lyme disease, and many physicians are unaware of what is really happening with Lyme. Finally, even though none of us would like to admit it, physicians become hardened (not all, but most) to patients' complaints. If we can't see a abnormality on lab work, or in a physical exam, we generally begin disbelieving our patients, or believing that it is either somaticized or hysteria. Quite frankly, Dr. Steere is the epitomy of this. I appreciate his work, but it is time for him to learn a lesson about stubbornness. It is difficult for me as a physician and care-giver of a past Lyme sufferer to understand why he holds so strongly onto archaic beliefs. I would be happy to send you a copy of my research on Lyme disease if you like. ] Sincerely, karen leggett DO
karen leggett DO <karenleggett@hotmail.com>
- 11/03/99 23:31:14 EST

Steere is an idiot. I have been relapsing with Lyme for 6.5 years. I improve while on antibiotics, and EVERY TIME I RELAPSE. Lyme disease has ruined my life. I want to be cured, Dr Steere.
Helen Schneider <HMS2446@AOL.com>
- 11/03/99 23:29:54 EST

I would like to thank you for this article. I am a seventeen year old girl suffering from Lyme Disease. It is believed that I have had Lyme Disease since I was three and diagnosed with Juvinelle Rheumatoid Arthritis. The arthritis did not go away, like juvinelle arthritis does and seemed to be a form brought on by Lyme Disease. I was diagnosed with Lyme Disease when I was about ten or eleven, after receiving a tick bite and noticing the "bull's eye" rash. My doctor did not treat me long enough. As I entered high school, my grades began to slip and I was tired very easily. It was not until the summer between my freshman and sophmore year, that Lyme Disease even occured to us. Someone mentioned it to me. Her family was in the middle of a battle with Lyme and she was sure I still had it. I did not actually go to the recommended specialist until the end of that winter. It was kind of like our last hope. At this point, I was fifteen. I am now undergoing treatment for Lyme Disease and have been for over a year and a half. At times I feel wonderful. At other times, I feel like I'll never get better. If it wasn't for doctors like the ones you speak of I wouldn't have had to deal with all of this. Thank you again for the wonderful article.
Amy Carew <Amy0382@aol.com>
- 11/03/99 23:24:31 EST

I,luckily,am not afflicted with Lymes,-it is my sister who lost 2 years of her life and major finaces due to mis diagnosis-due to insurance claiming it was not Lymes-Please pursue this
mary hughes <hugma@aol.com>
- 11/03/99 23:11:22 EST

Thank you for this comment area. It will enable all who come here, patients suffering, to express their views. I have Lyme for 23 years, Dr. Steere could never cure me in 4 weeks. It took me 19 years to get a diagnosis. I was young and strong once, now I am weak and in pain. Does Dr. Steere have any idea what this REALLY does to a person? I think not. He may have named "Lyme", but still does not have a clue to what devistation it can do to a person and the entire family. I have been in contact with thousands of people in the past four years. Out of those thousands, there may be a handful of people who did get better. The others are suffering. I've seen deaths from Lyme, babies born with Lyme, families destroyed, reduced to poverty. What is Dr. Steere's problem. What happened to his "Hippocratic Oath"...do no harm. By withholding treatment, that is doing harm. He also says...that there are other things to treat...well, what do I have doc? Treat me for it and get it over with! Some day, some way, there will be a real cure for us! I am sure of it. Steere will not be in the picture then. He won't be able to get his Rolex watch fixed. Hang in there everyone, keep up hope!
Pat <PSpatches@aol.com>
- 11/03/99 23:10:47 EST

Dear Mr. Lasalandra, Thank you so much for writing this article about Lyme Disease and Dr. Steere's persistance that "it can be cured fully with four weeks of antibiotics." If so, why is do the signs and symptoms of Lyme Disease return after this course of antibiotics are stopped in the majority of patients? Why is it that antibiotics slow the progression of this disease? Steere is wrong, wrong, wrong about antibiotics,not being the proper treatment for long term Lyme Disease. The CDC & the NIH have not updated the protocols for treatment of Lyme even though new research has backed up older research identifying spirochetel bacteria infections require long term treatment. The spirochetel bacterias that make up Lyme Disease, is also similiar to the bacteria that cause Syphillis, another disease that must be treated with long term antibiotics. The complexities of Lyme Disease are just beggining to reveal that a patient may suffer from co-infections as well, meaning the patient must be treated for all the infections, all the different bacteria present in their bodies. Like TB, it requires the specific combination of antibiotic therapy and long term dosing of the correct antibacterial agent. Dedicated researchers are working on finding the answer to what are the proper antibacterial agents that have the ability to wipe out ALL the infective agents involved in Lyme Disease. The NIH continues to fund Steere and his re-lated corporations for research that has done nothing but self-promote this man and his protocols for treatment that have not helped the Lyme Community. Which, by the way, continues to grow. The CDC, the State Health Departments and the NIH must start to recognize this problem of Lyme Disease cannot be covered up anymore. No other treatment modules or protocols have been looked at and encouraged. Doctors across the U.S. back away from treating Lyme Disease at all. The patients are turfed off to some other doctor specializing in another field, continually. Patients are misdiagnosed with neuromuscular diseases or told you are depressed. I suffer from Lyme Disease which I have had for years. I was able to function and live a normal, working, productive life, until my immune system was overwhelmed. The bacteria has spread throughout my body and I do not know if the damage done is reversible. While on antibiotics I improve a little, but the main thing that is significant, the disease is not progressing as fast. I have releif from many signs and symptoms that I previously had. No, I cannot work anymore, nor live the kind of life that a normal person would live, but I am not completely bed bound as I was prior to treatment. I want the CDC, the State Health Departments to work together with the Lyme Community to help fight this disease. Admit that there is an epidemic of Lyme Disease. I want the Congress to look in to the NIH's funding history on Lyme Disease Research. I want other Lyme treating doctors and researchers proven methods and protocols for treatment for Lyme Disease to be recognized and approved without the threat of investigations for the "over treatment" of Lyme Disease. An old nursing instructor once told me, "Listen to the Patient." Without any tests, a patient is able to tell a doctor how they are feeling and what they are experiencing. Now I ask the Congress, the CDC and the NIH; listen to the patients!!
Barbara Fitzmaurice, RN <blfitzma@prodigy.net>
- 11/03/99 22:31:02 EST

I went sixteen years without the right diagnosis. I was diagnosed with crohn's disease, meniers disease. allergies, bad back, and possible MS. They finally found the lyme last year. Now I know my l4 year old son health problems are congential lyme disease, as he tested positive as well. I have gone through a nightmare that has not ended. Thanks to Dr. Steere and his school of thought I have lost my life. He has cause a great deal of suffering and pain amongst those with lyme. I hope that I see the day when he realizes it.
donna manning <dmanning@skipjack.bluecrab.org>
- 11/03/99 22:24:27 EST

I read the article. I hope you will print more about what really happens when patients who are sick see Doctors that believe Dr.Steere. I have had lymes since '85 it was diagnosed in '89 treated but not aggressively. I still have the same symptoms and more severe problems caused by being sick for 14 years. Currently I am in a HMO that does not "believe" in chronic lymes. Since March of '99 they have done $10,0000 worth of testing for everything under the sun. They removed 2 glands (involved 2 surgeries because a nerve was damaged) and everything is inconclusive. Needless to say they won't give anti biotics until they prove something is "wrong". I cry daily trying to figure out how to get help - but without unlimited funds help is hard to find especially in the world of HMO's and Dr Steere. Thank you
Joyce McGrath <mcgrath@igg-tx.net>
- 11/03/99 22:15:36 EST

What will it take for Dr. Steere and his inner circle to begin listening and caring about the fates of Lyme patients. I was a successful professional who, after being misdiagnosed by over 5 MDs, was correctly diagnosed. Then it was too late. I lost my job, my livelihood, my friends who were confused and unclear about how to respond to a chronically ill colleague and my life as I knew it. The misdiagnosis would never have happened were it not for Steere's malevolent influence on well meaing physicians who read his literature. The most political of all the forces is Dr. Steere himself who ignores literature in respected journals--literature written by respected physicians who are working on the front lines of Lyme Disease and being successful in treatment of CNS Lyme. Insurance companies are joining the political medical "right" in harassing their colleagues who dare to disagree with them. They are joined of course by insurance companies who are denying treatment to extremely ill and debilitated Lyme patients--patients who cannot speak or write or work or walk in some instances. It is time that the harassment ends and an open forum be created so that we might find a cure for this dreaded and UNDERDIAGNOSED infection.
Patricia Baldt <Pbaldt@aol.com>
- 11/03/99 22:14:34 EST

Thanks Michael, I speak for the hundred people in our support group who cannot go to Washington to protest what Dr Steere has done to keep us from getting proper diagnosis and treatment when I say that we apprciate the ink to state our case. Editor "Tick Talk" newsletter of the Lyme Disease Network North Metro that meets in Columbia Heights MN.
Lynn Olivier <lynn@derider.com>
- 11/03/99 22:09:36 EST

I read the article. I hope you will print more about what really happens when patients who are sick see Doctors that believe Dr.Steere. I have had lymes since '85 it was diagnosed in '89 treated but not aggressively. I still have the same symptoms and more severe problems caused by being sick for 14 years. Currently I am in a HMO that does not "believe" in chronic lymes. Since March of '99 they have done $10,0000 worth of testing for everything under the sun. They removed 2 glands (involved 2 surgeries because a nerve was damaged) and everything is inconclusive. T
Joyce McGrath <mcgrath@igg-tx.net>
- 11/03/99 22:07:19 EST

Thank you for your article on the Steere presentation. Please know that the protesters who were able to attend represent a very small fraction of the Lyme patients in this country. Many cases are not reported, and many cases, such as mine, do not meet the stringent guidelines for diagnosis required by the CDC. They will admit that they probably only count a fraction of actual cases. Some estimate that up to two million people actually have Lyme disease, many believing they have MS, Rheumatoid Arthritis, Chronic Fatigue Syndrome, ALS, and many more. Note that it is not known what causes these diseases, unlike Lyme. Also note that the areas of the world with the highest rates of MS are along the same areas with the highest known rates of Lyme. Lyme is curable, but it is very hard to cure after the infection has taken a foothold in the body. It is such a shame that people must go from doctor to doctor wasting precious time. These doctors are not well-informed about Lyme. Many recite the type of information that Dr. Steere has put forth, citing him as an expert. Unfortunately, this information is in direct conflict with what a lot of previously healthy, intelligent people are experiencing.
Terri <MiKidzMom1@aol.com>
- 11/03/99 22:05:09 EST

Mr. Lasalandra: I've just finished reading all the other comments re: the protest of Dr. Steere. Briefly, I went undiagnosed for one year because my "then" doctor said Lyme Disease doesn't exist in this area. I'd found one tick on my head and had a rash on my left leg. Even when I'd appear at her office in total pain and unable to walk, she didn't test me for this disease. I had no idea what was wrong with me, only that she said I didn't handle pain very well. She didn't seem to want to even try and find out what was causing the pain. I changed doctors. The first time I walked into my present doctors office, unable to walk and in pain, after having just been there three days earlier and given antibiotics for an ear infection--this doctor immediately suspected something else was going on. He began asking questions about what had been going on with me the past several years and began taking blood for testing. I did not know what type of tests he was doing. Because of the tick find and rash on the leg that I reported to him, he tested for Lyme Disease. My tests came back positive. So, I had gone for one year without treatment. I have now been on treatment for almost four months. I worked the first two weeks of treatment until I could no longer walk up and down one step. I have been off work since then. So far, I consider myself lucky because my insurance is still covering my treatment. But the fear is always there that next time they will refuse to pay. I'm thankful that my doctor does not follow Dr. Steere's recommendations for treatment. I am one of the lucky ones NOW. But I should have received treatment in the beginning. I do not know if it was because my former doctor is "ignorant" of the fact that we do have Lyme Disease in this area or if she was simply afraid to test and treat me. Never-the-less, having found one tick and having had a "mysterious" rash in another area should have warranted being tested. Especially when I inquired about it. Doctors should not have to be afraid to treat their patients....that defeats the purpose of becoming a doctor, don't you think? Thank you for the article. Lyme patients across the country are trying to band together to find a way to get fair and proper treatment and research. We aren't in this "for just oruselves"--we are helping each other by being morale boosters and supporters, because we've "been there, done that" AND we are also fighting for the doctors who are lyme literate and for all doctors to have the right to become lyme literate without fear of reprisal or lawsuits. Lyme patients should have the same rights as cancer patients and AIDS patients to be treated and to have insurance help pay for those treatments. Without the proper protocols and testing......well, it's already known what happens. Cancer patients present with "Clinical" symptoms, as do AIDS patients until further testing. People with migraine headaches receive treatment and their symptoms are strictly "Clinical"...there is no test to prove someone has a migraine headache. Those headaches cannot be "seen" by the naked eye. Yet insurance pays to "treat" (mask) the symptoms a patient has from these headaches. (I'm not knocking these patients, by the way) SO shouldn't patients with lyme disease receive treatment just as fairly? Syphillus, left untreated, is deadly. They say lyme disease is caused by a spirochete of the same family as syphillus. Need I say more?
C James <piscesrising@hotmail.com>
- 11/03/99 21:52:51 EST

Daer Mr. Lasalandra:I have Lyme disease,I Lived it.Dr.A. Steere is hurting,or even Killing people,and may have to give for it someday.
Ticked <ldbb@jnlk.com>
- 11/03/99 21:51:21 EST

Mr. Lasalandra, I want to thank you for the article of recognition of Lyme. My father is one of these victims. Doctors and insurance companies refuse to test and treat this disease. We really need all the help we can get concerning this issue. I hope that after the protest and your article, the proper people will wake up and see the reality of this disease. Lyme is emotionally and physically distructive. Lymies need all the help they can possibly get. Thank you.
Jennifer Sides <jdsjls@hotmail.com>
- 11/03/99 21:49:00 EST

My husband died of complications from Lyme Disease because the doctors in our home town didn't know anything about it. It was only after he became 100% deaf that a doctor got the idea to test him for Lyme (after 4 years of going from doctor to doctor with no success). The test came back positive. He received antibiodics for pneumonia for 2 1/2 weeks (he almost died) and was sent home. For 5 years he got worse and worse. He couldn't walk some days or think. Why can't people understand that this is a dreadful disease. He would of received better treatment if he would of had Aids (of course he was tested for that numerous times because of his immune system being so bad). I think it is down right disgusting that doctors are shrugging this off as nothing. This is becoming as widespread as Aids. I know that my husband can't be brought back but I know that he would of wanted me to do anything I could to help other people not to have to suffer as he did. We all need to stand up and fight and make these so called educated people understand this is serious. I lost my husband at 46 yrs of age and my 3 sons have lost their father. He did get to spend a year with our precious grandson but look at what is will be missing just because the doctors were blind about what was wrong with him. Come on people. Wake up before this gets any worse than what it is.
Susan Wilson <Sdw1007@Aol.com>
- 11/03/99 21:39:06 EST

Get a load of this one! Ok,the same story as the rest with the misdiagnosis and being told it is in my head. So I won't go into those details. I do need to mention (since I have not yet seen this listed) that my first and most major sympotm was a Tourette-like tic disorder. That is right, a tick gave me tics! It was horrible, but as I read other stories I realize I could have been much worse off. After a brief fight (and call from a lawyer to my insurance company) I went on IV rocephin for 3 months. The surprising twist is what I believe has improved my Lyme symptoms. I got an infection in my PICC line (the rare pseudomonas Cepacia). I then was hospitalized with Gram-negative sepsis after my resulting two fevers of 104.9. This was a very dangerous potentially fatal experience, however, my Lyme symptoms have been almost absent since. I am very lucky that I was able to get such a dangerously high fever without suffering further complications (like death). Several of my Lyme doc's believe that this high fever served to kill off my very persistant Lyme bacteria. Also, I do believe that long term anti-biotics can be equally as detrimental at times to the body and ones immune system. I don't pretend to have the right answer, but I know I felt like the anti biotics were killing me nad the Lyme. It was a horrible time for me, a previously active 26yr old. I don't like either option (long-term antibiotics or no treatment) I know that we need more research! And, if clinicians were more ASTUTE in up front diagnosis and treatment, there would be a much lesser need for people to suffer through the pains of long term treatments that, as in my case, can be potentially life threatening. Oh and let me give an official BOOO to Columbia Presbyterian Hospital in NYC- the Neuro Team. For refusing to do a Lyme test, when I requested one, on me when I very first had my symptoms. They did do a spinal tap but just would not do the extra test. Believe it or not, astute clinicians, 4 months later I tested positive on a PCR test of my spinal fluid! By the way...still waiting for my copy of those records!! Again, thank you Michael! The medical business has corruption just like all other businesses, that seems to be the nature of humans. We just have to rise up as the stronger group! Dr. Steer probably has convinced himself that he believes in what he is saying. He is not a bad man...merely misguided. We must work hard, however, to oppose his theories and get this catastophic epedimic under control. Thanks to all of you for your stories. They are all tragic in their own way. Godd luck to all in their healing!
Tracey Sutton <Traceylaine@worldnet.att.net>
- 11/03/99 21:30:43 EST

Thanks for your article. I am embarrassed to go to a doctor because of Lyme's disease. They look at you like they don't believe you or are mildly sympathetic but don't think you need further treatment. Your friends don't understand why you're still in pain as they thought it "should be cured, right?" I don't complain about my aches and pains anymore because people think you're a quack. I just try to deal with it and live the best I can. Lymes does not leave your body if you were not diagnosed soon enough. I had meningitis and severe arthritis. After initial treatment, I went for years with chronic migrating pain off and on, but after a hysterectomy, my immune system was lowered and I got hit with symptoms twice as hard. It is difficult to go thru life knowing you should not feel like you are 60 years old when you are only 40. I used to be very athletic and now any time I try to overdo something physically, I'm out of commission for a couple of days. This is very frustrating. I hope you can urge the medical profession to find a cure or at the least, a definitive lab test for Lymes. It is very sad that the person who first noticed Lyme symptoms hasn't done more research to find a cure or to help those who suffer throughout this country. This is one of the fastest growing infectious diseases and it will cost the insurance companies a lot of money to treat. If they could help come up with a cure, it probably wouldn't cost them as much as treatment. When will they wise up???? Lymey
Lymey <Ugotit@penn.com>
- 11/03/99 21:25:23 EST

Dear Mr. Lasalandra, Thank you for your story on the protest against Dr. Steere' s philosophy on the treatment of Lyme disease. Five out of six members of my family contracted Lyme disease within 18 months of moving to one of the most endemic towns in Connecticut . Because we were not treated aggressively early on, we all developed severe late stage symptoms. Chronic late stage Lyme is primarily an infection of the brain. My oldest son, a gifted student, became dyslexic and developed problems with memory and processing speed. He was placed in special education classes. My youngest son, who was 4 when he became ill, still has behavior and cognitive problems 3 years later. My daughter was diagnosed very early on, but was treated for only 4 weeks, the " standard" duration Dr. Steere believes curative. Four years later, at age 14, this former swimmer, dancer and honor student, has become wheelchair bound and is so disabled by a movement disorder that she can no longer write or feed herself. Because local doctors relied on treatment protocols published by "astute" physicians such as Dr. Steere my family was undertreated. What might have been a simple illness has turned into a complex, devastating disease, especially for my daughter. The members of my family who have experienced Lyme have had a completely different set of symptoms; each has responded to a different course of treatment. We all have improved with long term antibiotics and I am optimistic that my oldest son, who has been symptom free for a year, may be"cured." However, some people, like my daughter may continue to go through periods of relapse and remission for an indeterminate amount of time. For them, newer and better treatment protocols are sorely needed. Yet, physicians like Steere, who are in a position to help, choose to deny the very existence of the illness, except in the rarest of cases. In my town, dozens of families have been devastated by Lyme. For all our advances in technology, science does not yet have all the answers to the way our immune systems or brains function. Certainly, researchers are in their infancy in understanding the complexities of Lyme and other tick borne illnesses, especially as it affects the immune system and brain. It is time to acknowledge the scientific uncertainties and question the motivation of people behind protocols that are simplistic and out of date. What is needed is openmindedness and further research into a very misunderstood, very political disease. I greatly appreciate your effort to acknowledge the issues of patients with chronic Lyme disease.
Cathy Morrissey <cfmorriss@aol.com>
- 11/03/99 21:14:42 EST

I am a Lyme patient of a very wonderful Dr that took the time to listen to me..I live in Indiana and have to travel to Conneticut to be treated this is wrong..Both of my kids also have Lyme and my 9 yr old at the time was told he was psychosomatic because he couldn't walk was totally helpless now he can walk some because of these drs..Please listen to not just the onesd who are againist Lyme but the ones that are for..if nothiong else listen to the people who have this especially the children...They can and will tell and show you more than you will ever want to know... Thanks for listening..Julie
Julie Clark <JClark6946@aol.com>
- 11/03/99 20:47:42 EST

I was unknowingly infected with Lyme disease several years ago, but did not become ill until January 1998. I have been receiving treatment for over a year without any improvement. This disease has ruined my life.
Julie Figueroa <fig4159@aol.com>
- 11/03/99 20:25:12 EST

I have chronic active Lyme and I see a very wonderfully talented physicain here in Boston. Please follow through with this research. Do more articles about the reality of Chronic Lyme. AFter a year of treatment--I have noticed little improvement, but I I am still hopeful! I was initially misdiagnosed because I was not from an endemic area--that delayed my treatment and allowed the bacteria to spread for another year and half! We need to educate more docotors and more lay people about the REALITY of Lyme Disease!
Kelty <Keltyk@hotmail.com>
- 11/03/99 20:24:21 EST

It wasn't much of a protest. Eighteen wind-blown people with signs and "Lyme green" ribbons were kept on the edges of the NIH campus by the police. At three o'clock they attended the seminar. A few asked the kinds of questions that suggested they didn't understand much about molecular mimicry or the immunogenetics of T-cell receptors. It's hard to understand how people who claim to be sick and struggling with medical bills can find the energy to rant about one man's research and the money to finance a trip to a seminar--the contents of which they will not understand or believe. They do and say some strange things. See, for example, the Quackwatch piece on Lyme at: http://www.quackwatch.com/01QuackeryRelatedTopics/lyme.html
- <lymedisease@medmail.com>
- 11/03/99 20:12:26 EST

Michael, I contracted Lyme in May 1998. After going to Yale and being diagnoised and given the "Steere" 4 weeks of antibiotics I left even sicker than before. Later I found that I had been undertreated and my Lyme disease has reached a "chronic" level because of that. I now suffer from what is called "chronic Central Nervous System Lyme". Presently I am being treated by a Physician who believes along with many other Doctors that the Lyme bacteria can be difficult to erradicate. And if left untreated or undertreated Lyme can cause serious damage to organs and even be life threatening. With the help of my present Doctor and the antibiotics I am on I am making a come back from the dead. What I find so scary about Steere is his refusal to acknowledge a whole body of scientific work that indicate Lyme is a bacteria that is very difficult to eradicate. He is entrenched in his own theory I believe for fear that if he acknowledges or admits wrong findings he will be sued by the many people whose lives have been destroyed by his failed dogma! Emily Fletcher
Emily Fletcher <Fletch14@ix.netcom.com>
- 11/03/99 20:10:05 EST

I need to take a deep breath before I can even respond to this article. I too am a Lyme disease sufferer. I wish more than anything in the world, that Lyme Disease really is cured with 4 weeks of antibiotics, but that is ABSOULTELY not the case. I am an intelligent, college educated, upper middle class mother of three small children. I live in a very high endemic area, and I have been suffering with Lyme Disease since 1994. I was fortunate enough to find caring, Lyme literate physicians and have been receiving treatment on and off since 1994. Lyme Disease is a serious, chronic illness that wrecks havoc on thousands and thousands of lives. It certainly has ruined mine and the life of my family. I have had numerous battles with several insurance companies to get reimbursed for legitimate treatment. The problems Lyme sufferers face are due to this divided medical community on the diagnosis and treatment of Lyme Disease. Dr. Steere and his associates need to do further research on this disease and speak to patients like myself who have been battling this nightmare. It was only after a very extended course of IV antibiotics (9 months), that I was able to function again. I am not symptom free, but I am able to resume my responsibilities and enjoy my life again. I wish that Dr. Steere was right about a cure in 4 weeks. He would be my hero if that was true!!! I have been all over the country, tested for every disease under the sun and the only thing I have ever tested positive for is Lyme Disease. Yet, I still encounter physicians who say that it does not even exist. If it did not exist, why is there a vaccine now for Lyme? Vaccines are developed to prevent serious diseases. Lyme is serious, Lyme can be chronic and Lyme is REAL. The NIH, the CDC, and the State and Local governments need to do more to eradicate this terrible disease. Thank you!
Andrea Sohnen <Andee31@aol.com>
- 11/03/99 20:09:44 EST

Thank you so much for the informative article. In 1994 I became very ill, after many trips to the doctors and to the ER with no diagnosis, I really felt so sick that I just knew I was going to die. I remember sitting in my kitchen looking out the window and thinking to myself "I am a nurse, I am sick, and no one will help me" Finally, I called a nurse in the ER and told her that someone had to help me. The only thing that they did was take a lyme test. It came back positive. I switched doctors, and received the treatment that I needed, but it had gone on too long. Now I have chronic lyme, and have never been the same since. How can so many people be sick for so long if this can be cured in a months time? I don't think so.
Joan McCarthy <MSOH007@aol.com>
- 11/03/99 20:08:54 EST

These are the questions that were submitted by the Lyme community today: QUESTIONS FOR ALLEN STEERE, M.D. 1. Chronically ill Lyme disease patients consistently report response to antibiotic treatment but are routinely denied antibiotic treatment based on your "standard of care." Why? 2. Why do you routinely dismiss the large body of scientific data that points to persistence of infection as anecdotal? 3. You have indicated that if a patient diagnosed with Lyme disease does not respond to treatment that the initial diagnosis was most likely incorrect. In the current climate of bacterial resistance how can you confidently make that conclusion? 4. Since you testified against Dr. Joseph Natole, who did not follow your conservative guidelines for diagnosing and treating Lyme, do you feel the severe sanctions, which included a $50,000 fine and suspension of his license were warranted ? 5. Do you think you did Dr. Joe Natole's former patients (400) a favor in testifying against their doctor? 6. What do you believe are the ramifications of your court testimony on other doctors' practices whose philosophies disagree with your approaches in handling Lyme disease? 7. How do you think other doctors' practices and licenses should be handled if they do not follow your "overdiagnosis and overtreatment" school of thought? Should they also be investigated and sanctioned? 8. Should doctors be allowed to diagnose and treat Lyme disease without fear of loss of license if they do not agree with your diagnosis and treatment philosophies? Is it a good thing that they are turned into Boards of Medical Examiners (as is happening) if they so practice? 9. Should Departments of Health participate in finding out which doctors are "overtreating" and "overdiagnosing' Lyme disease? 10. Do you have any concerns about the safety of Lymerix Lyme vaccine? Do you feel it may have a chance in inducing Lyme arthritis? 11. Have you ever expressed any concerns about the vaccine causing Lyme arthritis with patients, study subjects, NIH, CDC, FDA, your Internal Review Board at Tufts, or Smith Kline Beecham? 12. Why do you think the people continue to have protests against you (including Seattle, 2 Yales) and your philosophies? 13. Do you, in any possible way, think that chronic Lyme disease could be caused by persisting infection? 14. How, in the absence of any definitive testing, can you be so sure that PostLyme syndrome is not persisting infection? 15. Other than your perceived "placebo effect", how can you explain patients getting better with antibiotic treatment that is longer than your (current) views of 4 - 6 weeks? Is it likely this could point to persisting infection? 16. If your philosophies of diagnosis and treatment were shown to be essentially unsupported by patients, clinicians and research, how do you feel this would effect your stance as an "astute clinician"?
Rita L. Stanley, Ph.D. <RitaStan@worldnet.att.net>
- 11/03/99 20:04:47 EST

I can't believe with all the sick people suffering from Lyme disease that these doctors can't take a look around and come down from their ivory towers. I have been on antibiotics for almost a year and a half and have just gotten a positive Lyme PCR, also had blood cultured and had spirochetes grown from my blood. Why won't they listen to us and help us?
Barbara Kerler <EPearl16@aol.com>
- 11/03/99 20:00:20 EST

Dear Michael, Thanks so much for this information. I can't begin to emphasize how much I feel that Alan Steer has harmed my family's ability to receive adequate treatment for lyme. I've read most of what he's written, and I disagree that his conclusions are scientifically based. He merely concludes that four weeks of antibiotic treatment is adequate, without anything but his clinical judgment, and an absence of lab evidence that he accepts as proof of still existant lyme. But, he makes no allowances for whether it might still be there, even if it's not showing up in the available serological tests. My daughter was negative serologically, but positive by PCR in endometrial tissue, AND, she was positive by clinical observation and history. Besides that, with extended treatment, she is improving significantly. I don't think there is any reason to be so dogmatic in trusting negative serological testing. If he wants to be scientific, why not show me the clinical double-blind studies showing whether extended antibiotic treatment helps? He doesn't have any more scientific basis for his conclusions than others with better clinical results.
Pat Alden <CPAlden@aol.com>
- 11/03/99 19:56:12 EST

I would like to comment on your article about Dr. Alan Steere. If the media would talk to the people that are suffering with lyme disease, then the world would learn what a devastating disease this is. I am a 42 yr. old mom of 6 children, my husband almost died from lyme awaiting a diagnosis for 15 yrs. I, too, am chronic, 4yrs and now 2 of my 6 children are chronic. We have 15 people on MY BLOCK with lyme that are diagnosed so far. This is an epidemic. We are all on long-term antibiotics as well as alternative therapies. When I stop my antibiotics, then within a few days, my symptoms come right back; I have tried this various times throughout the past year in which I have been treated. If this is a "28 day disease" as Dr. Steere suggests, then WHY am I AND ALL THE REST OF US STILL INFECTED? WHY IS THERE A VACCINE IF THIS IS CURABLE? WHY CAN"T LYME PEOPLE EVER DONATE BLOOD? This is just a matter of common sense when you really come down and think about it. I have tried to make a difference in my community, on the internet I open my heart to all and try to share the knowledge that I have about this God awful disease to try and educate the thousands out there that have lyme. There are also an abundance of people out there that have been misdiagnosed with MS, when really it was lyme disease. I have so many that I am in contact with that are in this situation. I have one man in particular that his story would make an EXCELLENT article. Are you ready to find out the truth about lyme disease? Thanks for your time.
Sue Massie <Ssadlermas@aol.com>
- 11/03/99 19:53:32 EST

I would like to comment on your article about Dr. Alan Steere. If the media would talk to the people that are suffering with lyme disease, then the world would learn what a devastating disease this is. I am a 42 yr. old mom of 6 children, my husband almost died from lyme awaiting a diagnosis for 15 yrs. I, too, am chronic, 4yrs and now 2 of my 6 children are chronic. We have 15 people on MY BLOCK with lyme that are diagnosed so far. This is an epidemic. We are all on long-term antibiotics as well as alternative therapies. When I stop my antibiotics, then within a few days, my symptoms come right back; I have tried this various times throughout the past year in which I have been treated. If this is a "28 day disease" as Dr. Steere suggests, then WHY am I AND ALL THE REST OF US STILL INFECTED? WHY IS THERE A VACCINE IF THIS IS CURABLE? WHY CAN"T LYME PEOPLE EVER DONATE BLOOD? This is just a matter of common sense when you really come down and think about it. I have tried to make a difference in my community, on the internet I open my heart to all and try to share the knowledge that I have about this God awful disease to try and educate the thousands out there that have lyme. There are also an abundance of people out there that have been misdiagnosed with MS, when really it was lyme disease. I have so many that I am in contact with that are in this situation. I have one man in particular that his story would make an EXCELLENT article. Are you ready to find out the truth about lyme disease? Thanks for your time.
Sue Massie <Ssadlermas@aol.com>
- 11/03/99 19:52:50 EST

I would like to comment on your article about Dr. Alan Steere. If the media would talk to the people that are suffering with lyme disease, then the world would learn what a devastating disease this is. I am a 42 yr. old mom of 6 children, my husband almost died from lyme awaiting a diagnosis for 15 yrs. I, too, am chronic, 4yrs and now 2 of my 6 children are chronic. We have 15 people on MY BLOCK with lyme that are diagnosed so far. This is an epidemic. We are all on long-term antibiotics as well as alternative therapies. When I stop my antibiotics, then within a few days, my symptoms come right back; I have tried this various times throughout the past year in which I have been treated. If this is a "28 day disease" as Dr. Steere suggests, then WHY am I AND ALL THE REST OF US STILL INFECTED? WHY IS THERE A VACCINE IF THIS IS CURABLE? WHY CAN"T LYME PEOPLE EVER DONATE BLOOD? This is just a matter of common sense when you really come down and think about it. I have tried to make a difference in my community, on the internet I open my heart to all and try to share the knowledge that I have about this God awful disease to try and educate the thousands out there that have lyme. There are also an abundance of people out there that have been misdiagnosed with MS, when really it was lyme disease. I have so many that I am in contact with that are in this situation. I have one man in particular that his story would make an EXCELLENT article. Are you ready to find out the truth about lyme disease? Thanks for your time.
Sue Massie <Ssadlermas@aol.com>
- 11/03/99 19:52:46 EST

We support the lyme alliance and agree with the protest against Dr. Steere he has been bought out by the HMO's
Lyme Disease -West Coast Connection <lymedisease@juno.com>
- 11/03/99 19:52:40 EST

Thank you Mr. Lasalandra for getting out this story on the controversies of Lyme disease and Steere's lead role in the conservative philosophies. As a support group leader in the NW, and advisor to Lyme Alliance I can assure you that the patient tragedy that I hear about on a daily basis and the accelerating physician harrasment all trace back to this man's philosophies. Now, as a patient and open-minded physician community, we must work towards ending the Steere monopoly. We must stop the physician harrassment and other bully tactics used to derail real advancement in the area of Lyme disease and the other tick-borne diseases.
Rita L. Stanley, Ph.D. <RitaStan@worldnet.att.net>
- 11/03/99 19:50:19 EST

The content of this presentation does not agree with the facts. Reality as revealed by tests for Lyme antibodies tells a completely different story in agreement with evidence from numerous Lyme patients. This means that chronic Lyme is very difficult to get rid of. I will supply the evidence of my data which show chronic Lyme developed over a period of over 5 years together with quatitative antibody tests and coroborated by clinical evidence. Regards, Frank Schneider
Frank Schneider <Jgalt20000@aol.com>
- 11/03/99 19:44:25 EST

Ever since discovering the expanding rash on my torso in 1995, my life has been a living hell. curable with 4 weeks of antibiotics?? hardly!! After being diagnosed with lyme disease in 1998 , i was also diagnosed with babesia.......which i contracted from the same tick bite. Thank you to all the lyme activists for protesting this "man"...Dr Steere needs to be castrated from the podium that he stands upon, the podium where he spews his garbage medical methodologies which have ruined and wasted hundreds of thousands of lives. Dr Steere needs to be investigated, and pulled from the lyme medical community with a pair of fine tweezer.
William <will1583@prodigy.net>
- 11/03/99 19:28:43 EST

Thank you so much for bringing attention to the Lyme protest at NIH. As a long term Lyme sufferer who has 3 children also ill from the disease I was so pleased to have Dr. Steere's position brought to the unknowing public. Perhaps if all sides could be publically represented we, the patients, could get the proper care, insurance and rehabilitation to live normal lives again. My 20 year old has lost the ability to read and must have the Library for the Blind provide him with his textbooks. He struggles daily with the brain damage Lyme caused him because of misdiagnosis and mistreatment. When his Lyme was finally properly treated, he was told only 80% of his brain had a chance of regaining its former status. His, and our, life has changed because of the ignorance and idleness of the medical community under the guidance of Dr. Steere's ultra-conservative protocol. If at all possible, please follow up on this matter that affects such a large number of people on the East Coast. Thank you.
Sharon Melillo <melillo1@rcn.com>
- 11/03/99 19:26:37 EST

Dr. Steere has ignored the childhood admonition not to rise public perception on the backs of others. Playing politics with real lives is wrong--for his victims: DEAD wrong. Lyme harbored before treatment lingers, eats organs, debilitates, is a living hell not wished on worst enemy. Dr. Steere is not only LD victims worst enemy but his own. He must live with his conscience and meet eternal judgement someday.
A. D. Brown <abrown@sonet.net>
- 11/03/99 19:18:32 EST

Dr Steere and his peers haven't taken their own vaccine. They all have their excuses, but NONE of them have had the Lyme Disease vaccine. WHY?
Marie Borgeson <atthelake@snet.net>
- 11/03/99 19:17:27 EST

Dr. Steere states he is rigorous in demanding scientific evidence and testing to prove Lyme disease, yet he states 4 weeks of treatment cures the disease. If that is the case, why are there so many people who continue to have positive tests after six months of treatment? From what I have read written by researchers and scientists, there are many times the blood tests for Lyme are not accurate. One example is for patients who have had steroid treatments. My blood work never showed Lyme disease, yet it was confirmed through another diagnostic test, the Lyme Urine Antigen Test (L.U.A.T). After treatment my symptoms eventually resolved, but it took much longer because I was undiagnosed for over 2 years because the blood test was negative. We need to focus on better, more reliable testing to aid in diagnosis and allow physicians to listen to their patients and treat them accordingly. If I did not have a doctor who aggressively treated my Lyme, I was facing three tendon release surgeries. After treatment they all resolved without surgery. I am curious how Dr. Steere would scientifically justify my inability to be "cured" with 4 weeks of antibiotics when I have medical tests proving I still had Lyme after months of treatment. Certainly I am not the only case like this that can be medically documented with testing. My outrage however, is that an insurance company would deny treatment based on medical testing such as the lyme titer blood test when it is documented that it does not have the greatest amount of reliability and the outcomes can be influenced by other situations. People do not "imagine" themselves to be disabled by this disease and to allow one doctor's opinion to have such a dramatic influence on the medical community is a total disservice to the American people. Someday as science progresses the truth will be known about this disease, then try explaining to the families of those disabled and unable to function why they couldn't receive treatment.
Nancy Brown <nebrown@intercom.net>
- 11/03/99 19:15:51 EST

It is unfortunate that a young Dr. who was open to new ideas and astute enough to uncover Lyme disease has become an old Dr who is so dogmatic and set in his ways. My daughter has had Lyme for about 7 years, the first 3 of which were spent looking for a diagnosis. If it were not for a dentist we know we could have waited even longer. She has neurological lyme, has been treated with IV antibiotics twice before, and her spinal fluid still contains live spirochetes. Her headaches are excruciating and her vision is affected to the point that she has to use books on tape for school. The insurance co. which agreed to pay for the original year of antibiotics has reneged and we are left with a huge bill and court battle. At 20 years old my daughter needs a nap every afternoon, needs braces on her knees to be able to walk, and wonders whether she will ever again be able to read a book. Perhaps the good Dr should walk in the shoes of a 'Lymie' before he does any more testifying.
Lynn Roggemann <lynnrogg@aol.com>
- 11/03/99 19:00:15 EST

Mike, I caught Lyme Disease 3 yrs ago this Feb. I was misdiagnosed for 4 months. By that time it had pentrated my immune system. Because of this, I am still fighting this disease. From my own experience, I have learned that this disease is much much more than simple aching joints!! At 27 years old, it has turned my life upside down. Let hope one day that there will be a diffinitive test for this disease. Once achieved, doctors will know when the spirochete is eradicated. Thanks for covering the story. Regards, Joe Orban
Joe Orban <jorban@snet.net>
- 11/03/99 18:49:42 EST

Dear Mr. Lasalandra: Thank you for the article on the protest by the Lyme Alliance at NIH today against their honoring Dr. Allen Steere. To honor a doctor so universally loathed by the Lyme disease community is an outrage. Dr. Steere's refusal to recognize continued Lyme disease after his abbreviated course of treatment has caused needless suffering in countless victims of Lyme disease. More horrifyingly, Dr. Steere served as Principal Investigator for the SmithKline OspA Lyme vaccine. In that capacity, his blind spot to true symptoms of Lyme disease led to his inability to see Adverse Events from the vaccine as Lyme disease but, in his usual fashion, he called them by other names: fibromyalgia, chronic fatigue syndrome, etc. Although it is beyond my understanding, the CDC approved the vaccine, and Dr. Steere stands to reap a fortune. Could it be greed that causes his myopia? Even SmithKline's own study on rhesus monkeys shows that the vaccine does not prevent transmission of the disease. Not only does the vaccine not work, but it causes severe illness in some people who receive it. What is more, it does not protect against the coinfections carried by ticks: babesiosis, erlichiosis, Rocky Mt. Spotted Fever, etc. Although the medical community should be rejoicing over the research on tick borne diseases, because research shows that many diseases of heretofore unknown cause can be attributed to these diseases and the disease process reversed. These include some cases of MS, some heart disease, some cases of Alzheimer's, some strokes and seizures, and many, many more. Borrelia burgdorferi, the spirochetes that cause Lyme, like to dwell in the brain, the heart, the walls of the bladder, and many other parts of the body, where they dwell inside the cell, invisible to one's immune system and many antibiotics. Lyme disease had been known for about a hundred years before Dr. Steere named it Lyme Arthritis. Lyme disease is very like syphillis; the genomic sequences of the spirochetes that cause these two scourges are identical in the beginning. The medical and insurance communities' willingness to accept Dr. Steere's limited view of the affects of the disease and the course of treatment required is like the syphillis Tuskegee Experiment conducted on Lyme sufferers on a nationwide scale. Lyme disease is worldwide (excluding Antarctica). Other countries, such as Germany, admit that 5-10% of their populations are infected. Dr. Steere's influence has kept the United States way behind the curve and has prevented the exciting ramifications for healthcare to develop in this country. I hope you continue to write about this fast growing epedemic. The World Watch Institute's "State of the World" predicted several years ago that Lyme disease would increase as a result of global warming. Alas, most of the doctors in the U.S. are blind to reality. Unfortunately, a reliable, sensitive test is not in use in the U.S., with unbelievable numbers of false negative results preventing diagnosis and treatment of Lyme disease. New Jersey's Congressman Smith and Pennsylvania's Congressman Pitts are backing a bill in Congress to increase funding for research on tick borne diseases and to develop a good, reliable test for Lyme disease. Let's hope this initiative is passed soon!
S.G.L. Parke <sglp@ccil.org>
- 11/03/99 18:45:53 EST

I can't stress enough what damage has been done by supposed "doctors" like Dr. Steere. Just because they do not understand and are unable to adequately treat an illness like Lyme disease, they feel they must tell everyone that that it either doesn't exist or that minimal treatment will cure it in all cases. Do these doctors think they know everything there is to know about all diseases just because they have an MD after their name? Since Lyme has not even been a recognized illness for very long and there has not been extensive research done on it, there is absolutely NO WAY that everything is known about it! I myself have struggled over 20 years just to get tested because where I lived supposedly did not have Lyme disease. I was constantly absent from school and have lost many jobs because I was too sick to work. Even after being diagnosed, because of ignorant doctors, I have been unable to get treated for longer than the initial 3 month period of time. Even that was a struggle because after 1 month, supposedly everyone is cured. All I can say to that is how wrong that is! I continue to get worse every day. My body has been fighting the Lyme for so long that it just can't fight anymore. Not only do I have to suffer with the Lyme, but my immune system has been so damaged that I catch every cold or flu I contact. I have not been able to work for several years now and am unable to get disability because "doctors" like Dr. Steere determine eligibility and as they say, everyone with Lyme is cured after a month! I thought doctors were supposed to help people get better, not worse. All Dr. Steere is concerned with is making a name for himself and not with helping the people he has taken an oath to help. In the end, remember that people have died because of not getting proper treatment for Lyme and if we follow what Dr. Steele says, the numbers will only increase.
Cathy Koltavary <kitcats@yougotemail.com>
- 11/03/99 18:45:09 EST

I, too, wish I could have been there to protest against Dr. Steere's comments and biases on Lyme disease and its treatment. I am a health professional who has Lyme disease, and believe me, it's physicians like Dr. Steere who make life miserable for those of us who suffer. I've tried being off antibiotics, and it didn't work. The disease is relentless and horrific - affecting every system in the body. God bless those Lyme-literate doctors who are willing to put their practices, yea almost their lives, on the line to treat this disease aggressively. Too bad there are so few who really begin to understand the effects on the individual and their families. I'd call it a BUM-STEERE !
Linda <ldal50@ncinter.net>
- 11/03/99 18:39:38 EST

Annotated bibliographies on Lyme disease issues. The web pages at the following links contain citations and highlighted extracts for medical and scientific articles from the National Institutes of Health (NIH), National Library of Medicine (NLM) MEDLINE database, pertaining to Lyme disease issues: Persistence or Relapse of Lyme Disease - An Annotated Bibliography http://www.geocities.com/HotSprings/Oasis/6455/persistence-biblio.html Seronegative or False Negative Lyme disease - An Annotated Bibliography http://www.geocities.com/HotSprings/Oasis/6455/seronegative-biblio.html Long-Term or Repeated Antibiotic Therapy for Lyme Disease - An Annotated Bibliography http://www.geocities.com/HotSprings/Oasis/6455/therapy-biblio.html Is Lyme Disease Underdiagnosed or Overdiagnosed? - An Annotated Bibliography http://www.geocities.com/HotSprings/Oasis/6455/under-over-diag-biblio.html Latent, dormant, subclinical, or asymptomatic Lyme Disease - An Annotated Bibliography http://www.geocities.com/HotSprings/Oasis/6455/latent-biblio.html Antibiotic Prophylaxis After Tick Bite For Prevention Of Lyme Disease - An Annotated Bibliography http://www.geocities.com/HotSprings/Oasis/6455/prophylaxis-biblio.html Is the lone star tick known to carry Lyme disease? - An Annotated Bibliography http://www.geocities.com/HotSprings/Oasis/6455/lone-star-biblio.html Insects or Vectors, Other Than Ticks, and Lyme Disease - An Annotated Bibliography http://www.geocities.com/HotSprings/Oasis/6455/insects-biblio.html For more information about Lyme disease, see: Lots Of Links On Lyme Disease http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html For errors or additions please send email to the address below. ----- Prepared by Art Doherty Lompoc, California doherty@utech.net
Art Doherty <doherty@utech.net>
- 11/03/99 18:35:16 EST

I was a patient of Dr. Steere about 10 years ago... he told me after a negative blood test and an office visit that I had MS rather than Lyme... even though I remember pulling a deer tick from my stomach months earlier and one of my daughters had tested positive for Lyme and my husband presented with several bulls-eye rashes... We spent almost every weekend camping in what we now know are endemic for Lyme ticks. Needless to say it was very hard trying to get another doctor to go against his diagnosis. It was almost a year before I found Dr. Drulle in NJ who treated me and my family for Lyme. Unfortunately so much time went by that my daughter (who was 5 yrs old at the time) now has chronic Lyme. She was only given 2 weeks of a low dose pennicillin. She is 16 now and on a third dose of IV. I finally had a Lyme Uring Antigen Test that tested positive for Lyme and after getting long term antibiotic treatments (1 year) I finally feel like a normal human being again...... inspite of Dr. Steere
Angela Yeager <IBAngel@aol.com>
- 11/03/99 18:33:31 EST

Dr. Steere has obviously placed personal profit over patient health and well-being. As a Michigan lyme patient my family and I have suffered directly because of his bum information and negative participation in Michigan's Health care capabilities.
Mack McDonald <mcknnife@bresnanlink.net>
- 11/03/99 18:23:45 EST

I too have been the victim of non-diagnosis and poor early treatment. as a result, I have profound neurological symptoms that I HOPE will eventually go away. Finally, after 3 doctors and 4 antibiotics, I'm improving. I'm a bestselling writer who has not been able to write, thanks to "Lyme head." This is torture. Too many people remain ill because of drs. like Steere, whose opinion the HMOs are only too delighted to embrace.
Molly Katz <Mollcat20@aol.com>
Westport, CT US - 11/03/99 18:19:19 EST

my wife and i both tested positive for lyme disease. we both are on antibiotics. apparently there is no cure for this disease in late stages.
harold f. leigeb <hvleigeb@aol.com>
- 11/03/99 18:17:06 EST

To say that Lyme can be treated with 4 weeks of antibiotic therapy is laughable at best. I contracted Lyme from a tick bite I received in Africa this summer. After many doctors visits and a brief stay in the hospital I was referred to a psychiatrist! No one listened to me when I told them I was bitten by a tick. I didn't get any treatment until a full 2 months after I became ill, from a doctor in Fort Lauderdale ,and I am still taking massive doses of antibiotics. After almost two months on medication I am still testing positive for the disease and I still don't feel well. I am young, have three children, a wonderful husband and a great life. In other words, I have a lot to live for and the doctors who deny full treatment to Lyme sufferers are condeming us to a horrible existence. The doctors here in Florida say there is no Lyme here but I have met many who would argue otherwise and innocent people are losing out on a healthy life because of it . I don't know if I'll ever be the same again emotionally or physically. I have been demoralized and humiliated by members of the medical community ( when they couldn't figure out what was wrong with me). I have battled with insurance reps. I have lost hair, along with my memory and my ears ring nonstop. My cholesterol zoomed up almost 100 points in two weeks and so much more that I won't bore you with the details. It is a disgraceful CRIME that Lyme disease is so damaging and yet is virtually unfamiliar to most doctors in the US. I beg anyone who will listen to me, this must change.
Mary Jaycox <jaycox@worldnet.att.net>
Jacksonville, Fl US - 11/03/99 18:14:16 EST

Dear Sirs, Please we need all the help we can get. For 3 years I was told it was all in my head, chronic fatigue, or I was even told mono!My short tern memory wzs virtually non existant,my knees still hurt, I lost most muscle tone from my body, it effected my Thyroid and worst of all my marriage was almost ruined.A simple test and agressive antibiotics are the only thing that helped. Please support us! You are our voice....Thank you Kathleen, Pennington N.J.
Kathleen Gafgen <kathljog@aol.com>
- 11/03/99 18:09:25 EST

It is very difficult to believe ONE Dr. can use the word "cured" so easily. Lyme disease has caused many people such grief and to be lumped into the much maligned Fibromyalgia diagnosis catagory (which isn't over diagnosed? hello!?!). There r co-infections from this lovely little tick, much over looked, until neurological damage has been done.There r other tests which can also be utilized to check for antigens.The western blot is less than 50% accurate. When antibiotics help, then this should be used. Much better then being in a wheel chair, put on pain pills. Please re-do research and help all the lyme/co-infection human beings. Thank you for your time and hopefully interest, DLM
Donna L. Morgan <DNadeja@aol.com>
- 11/03/99 18:05:57 EST

I am a walking corps with chronics Lyme due to Steere's theories followed bi another inept doctor: one K Coyle of Stony Brook fame who stopped mi treatment in 1993 giving me chronic Lyme. Vincent Jachetta, Engineer
VINCENT Jachetta <vjachett@optonline.net>
- 11/03/99 18:05:05 EST

Dear Michael, Thank you for printing the LD article in the paper. We need more attention drawn to our plight and how LD has become a political/ego disease by doctors like Steere. He is causing us so much harm by his poor lab practices, inaccurate information and by not listening to the patients who have this dreaded disease. how coudl it be that hundreds of thousands of us are "making this up"? We are sick, chronically sick, and nothing is being done to help us. I feel like a forgotten citizen. I got sick while in 1994 in Oklahoma with LD, HGE and RMSF - all at the same time. I nearly died waiting for help. My blood was sent to Steere's lab and it came back "negative". A FALSE NEGATIVE. Unfortunately, the doctor I had the misfortune to be seeing would not treat me for these diseases WITHOUT A POSITIVE TEST FROM STEERE'S LAB so I was left untreatd for a very long time. During that time, I sustained bone (degeneration and arthritis) and brain damage ("cold spots" and vasculitis) and all kinds of other neurological damage (numbness on both arms and legs, left side of face, chin, neck and chest). My blood was eventually sent to two other labs and both of those labs turned out positive. Another sample drawn at the same time was sent to Steere's lab - it came back false-negative AGAIN. You tell me - what's going on here? My life has changed so dramatically. I divorced my husband of 23 years because he couldn't accept all the changes in my appearance and physical abilities, or mental and emotional changes. I cannot work, I'm in pain nearly constantly - so much so that even Tylenol #3 (codiene) doesn't even knock it out at times. Sometimes I can barely walk, think, remember anything, talk or even know where I was/am in a conversation. I can't find the words I'm looking or sometimes. Life is a struggle now and it could have been avoided had I been promptly diagnosed the proper way - CLINICALLY WITHOUT THE DOCTOR RELYING ON STEERE'S FALSE-NEGATIVE LAB TESTS. I'll always be upset about what has happened to me. Thank you for listening and for helping publicize this problem. Jo Johnson Albuquerque, New Mexico (505) 890-5155
Jo Johnson <DenimLD@aol.com>
- 11/03/99 18:03:36 EST

Dear Mr. Lasalandra: I work as an advertising rep in a print publication here in West Michigan. Four years ago I had to stop working for 8 months. At the time, they didn't know that I had Lyme Disease. Today I am being treated by a Dr. who diagnosed Lyme disease after it had thoroughly penetrated my central nervous system. Here's the problem. Because of our friend Dr. Steere I could not find a Dr. in Michigan who would treat me. After the trial of Dr. Natoli here in Michigan (the trial Dr. Steere testified at) there are very few doctors who will even attempt to treat Lyme in Michigan. They prefer to say that it can't be Lyme we don't have Lyme here. Additionally, because they have no intention of treating Lyme they choose to ignore common guidelines for treating it. So, Mr. Lasalandra when I run out to see my Dr. it takes me two full days. That is right, I have to drive all the way to Mt. Kisco NY for my help. Let me tell you, driving 12 hours straight when you feel like I feel is no day at the beach. In part, I thank Dr. Steere every time I make that drive. He is the one who has sold out to the insurance companies. He should be ashamed! Thank you for listening. Terrie.
Terrie Lynema <Terber22@aol.com>
- 11/03/99 17:58:27 EST

Having been sick with Lyme since 1977 or before, how can anyone , just because he named the disease , deny that it exists in all these people. I have hundreds of friends and relatives , who are sick with this disease. I would be glad to give Dr. Steal or Steele a blood transfusion with my 'non Lyme infected blood'. Let him see what it is 'really like'. The insurance companies should be disbanded . We are in desperate need for National Health Care. Guys this is big money that has Yale and a host of big named health organizations in their back pocket. Finally had a doctor up there at Yale admit that I should stay with my Lyme Doctor. However he doesn't work in the Rheumatology department or in Infectious disease.I won't say where he works. The most honest guy to date and I thank him. He told me to go back to my Lyme Doctor pronto. Only time will show how wrong Dr. Steele and his fellow non-believers are on this subject. When the cause for many illnesses is traced to Lyme Disease, there will be a lot of egg on their faces and possibly law suits too . Why shouldn't someone be able to sue because of neglegence on a doctors part for failure to diagnos properly. Dr. Steele please come and visit with me and spend some time with the people that you say are not sick. Come see when this thing has stopped me from doing something with my kids, Come see when this disease has a patient up all night . Come see when the Lyme patient has a bout of muscle spasms so bad that they can't stand. Come see when the Lyme patients can'y see out of one eye because it fixes. You can not deny and wish that this will go away. It is an epidemic. Open you eyes and follow through with your heart. God forbid if one of your loved ones gets sick with this!!!!!!!
Jon Arnaud <Huguenot10@aol.com>
- 11/03/99 17:50:44 EST

Dear Mr. Lasalandra, Thank you, thank you, THANK YOU for your article; "Patients to Protest Talk by Lyme Disease Discoverer". Because the majority of doctors adhere to Alan Steere's guidelines for diagnosing and treating Lyme disease, I went undiagnosed for over 10 years... I am now suffering from terrible neurological and arthritic problems. I don't know if I will ever recover because treatment was denied me for so long. Because of you, one day the story of our suffering will be known by ALL doctors, and others will not have to suffer the way I have.
Joan Starkman <Namkrats3@webtv.net>
- 11/03/99 17:42:14 EST

I am a Lyme patient but I have not consulted Dr. Alan Steere or sought treatment from him. However, I did hear him speak on Lyme Arthritis at the VIII Conference on Lyme Borreliosis and Other Tick-Borne Diseases in Munich, June 20 - 24, 1999, and had several opportunities to speak with him. I took notes and tape recorded his presentation, and having reviewd this material, do not find anything objectionable. He recognized that Lyme patients may develop persistent, chronic Lyme arthritis that requires protracted therapy, which was quite different from statements made by patients who have been dissatisfied with his care and with the thinking attributed to him that Lyme disease is readily cured after about a month of antibiotics, and if it is not cured, the disease was likely misdiagnosed. His discussion of hypotheses of the causes of Lyme arthritis and his ideas on treatment were in line with other speakers on the topic. It is too bad that diaffected Lyme patients descended on NIH with their placards and readiness to protest before they heard him speak. If they disagree with him, why do they not sit down with him and perhaps other scientists and hold a rational discussion? I elected not to attend this meeting at NIH because I find the militant behavior of the activists embarrasssing, unproductive, and inclined to turn the scientific community away from dialog with patients.
Phyllis Tyzenhouse <phylliis618@aol.com>
- 11/03/99 17:34:54 EST

In responce to the statments made by, Dr steere.i would like to say, i,ve been disabled from 1997 till now due to his standerds being the law witch drs are forced to go by i,ve had it steere go back and start over again les you will be judged as you judge others your therories are way out of date and your bought and paid for by ins companys my life is in caos thanks to you and the drs that follow your directions the day will come when you will answer for all the suffering you have caused and i hope i,m there to see it
Timothy j Rowett <Rowett@nac.net>
- 11/03/99 17:34:25 EST

If Steere is so right, then why have both my blood and spinal fluid tested positive for Lyme for 13 years? Investigate the chronic aspect of this disease Nd you just might discover cues to the Lyme arthritis, fatigue, spasticity, joint pain And a host of other symptoms that are so obvious with an in-depth exam. We are not whiney hypochondriacs. If so, then whiney hypochondriacism must be added to fatsal diseases.
Margaret Pernicone <MPWrites>
- 11/03/99 17:32:58 EST

Forgot the rest of my email address....
L. Scott Nelson <LSNelson@aol.com>
- 11/03/99 17:32:26 EST

Im not surprised to hear what Dr. Steere has said. It scares me to no end that there are doctors like this, who have no clue what it is to have Lyme. Im 18 years old, and I feel like Im 60. Lyme has taken away my childhood, forced me to leave school for a period of time. I have severe problems with the basic rituals of life. Lyme has robbed me of so many things. Its not even the years of medicine and PICC lines that are the worst, or the pain and confusion its the people who don't understand Lyme that is the worst. I have been lucky enough to have doctors who want to help, I feel bad for those who have to face doctors who feel that Lyme patients are crazy. I only hope this article doesn't make people doubt lyme patients anymore. I hope this makes people aware that there are doctors out there who know nothing about Lyme. If only Dr. Steere and other doctors like him could get Lyme for just ONE second, then their minds would change.
Jessica <LiLitaliaG@aol.com>
- 11/03/99 17:29:52 EST

Thank you so much for your article! My 17 yr old daughter has suffered so much from this disease, and the ignorance we have encountered has compounded the extent of her problems so much. She suffers from neuro problems and arthritis so greatly that she has not been able to attend school for more than 4 years, and to hear a physician treat this so lightly is unbearable. Thank you again.
Candy Sandford <sandman75@worldnet.att.net>
- 11/03/99 17:22:42 EST

Alan Steers position on Lyme Disease is why I am now a 28 year old woman who is chronically ill and housebound. If Only back in 1993, when I became sick, had just ONE of the countless ( over 60) Dr's I had seen Listened to me..took me seriously, and realized I had a screaming case of Lyme, I would have been treated and maybe my life would not be a life filled with pain, sickness, and lost dreams. I blame Allen Steer 110%
Jennifer Filous <tigbig@aol.com>
- 11/03/99 17:13:53 EST

I think the majority of doctors out there have NO idea what thay are doing when it comes to Lyme Disease. We may as well have regular bleedings and a few leachings to rid ourselves of the Disease. I think that a cure is out there but I have a feeling the HMO's and pharmicutical co. are sitting on the cure because of all the Money they are getting out of it. TRUE Clinical resurch by the CCD/CDC or the federal government needs to be funded!!! If someone famous contracted the disease things would be different! The Clintons are moving to NY next year... right in the heart of tick country.... They might think twice being from the south and all. My wife has been suffering with this disease for 22 months and I see first hand the way it strips the humanity from your life. I wouldn't wish this disease on anybody!!!! I take it if you don't die from a disease there's no need to hurry on finding a cure! Hell of a world we live in don't you think so?
L. Scott Nelson, Danbury CT <LSnelson2>
- 11/03/99 17:11:35 EST

My concern with Dr.Steere is that he neglects to mention that there are many persons that continue to test positive for Lyme and display multiple symptoms, have been on numerous types/amounts of antibiotics, and still remain symptomatic and ill. If he is so meticulous in his research then he must include patients who fall into this category. I am one of these patients. Numerous doctors have ruled out all other illnesses with a Lyme test being the only positive test result. If four weeks of antibiotics is sufficient to eradicate Lyme then there must be a mystery infection that perhaps Dr. Steere and some of his colleagues could investigate. I would be happy to help him in this endeavor! Afterall, feeling healthy is my primary goal. I have yet to meet a Lyme sufferer who revels in being sick. Kathleen
Kathleen <Mumruland@aol.com>
- 11/03/99 17:03:13 EST

I sent an earlier message and didn't check it over first. I inaccurately spelled the initial screening test for Lyme Disease as "ELIZA". It should have been "ELISA". Sorry for the error, but I'm certain everyone knew what I meant.
Sylvia <knevarc@aol.com>
- 11/03/99 16:40:37 EST

I'm l4 yr chronic lymie.How can Steere demand scientific evidence when there has never been perfected testing. Pain& fatigue are the least of it. I've got 2nd degree heart block, pacemaker, 50% kidney function. Positive for lymes, but nothing else. Steeres guidelines dangerous!
Susan S. <Suesgrdn@aol.com>
- 11/03/99 16:22:39 EST

Dear Mike, Thanks for getting the story out that Dr. Steere is not God's gift to Lyme Disease. He really is just an early pioneer of Lyme Disease treatment and due to his bias as a rheumatologist mistook this disease for another form of arthritis. If Lyme is so easily treated with just four weeks of antibiotics, why do we need a vaccine? If this article has chiseled away at Dr. Steere's reputation just a little, it is long overdue. I hope to read more factual reporting on Lyme Disease in the Boston Herald in the future. I think you will have many sources for future Lyme articles from the messages on this board. Again, thanks Mike.
Rick Laferriere <RichardL@ici.net>
- 11/03/99 16:20:00 EST

Thanks for the great article! If I could be at the NIH to protest against Dr. Steere, I would, but will have to be at my MD appt. instead, as I still have lyme after 5 months straight of antibiotics--despite getting them within a week of my one and only tickbite. But according to Dr. Steere's propaganda, I must be "cured" since I caught it early and had "adequate" antibiotics, regardless of what symptoms I still have. Well, he's wrong again, just like when he formerly claimed antibiotics were useless against lyme... Why don't you do another article on the new research that explains how lyme can hide out in a cyst form and persist in the body in spite of antibiotics--I think Dr. Steere and his buddies need to read it in the local paper. They sure aren't listening to lyme patients...
Lee <lymevictim@hotmail.com>
- 11/03/99 16:07:26 EST

THE LYME FANATICS SHOULD HOOK UP WITH THE CHRONIC FATIGUE CROWD
SCEPTIC <SCEP@AOL.COM>
- 11/03/99 15:38:24 EST

If I had the money, time and/or energy I would be in Washington. After a positive test, my blood was sent to him and he refused to see me. I then went to Yale and because my knees were not swollen they dismissed my problems. I am now under long term treatment because it took so long to get someone to listen. Someone should do an indepth report about this disease. I have had many weeks of treatment which put things into remission, but it comes back. If you want more information, please e-mail me. Who really knows what is correct treatment? At least my MD listened and also my current MD believes I have a problem. I have missed a lot of work...many holidays...many events because I am too tired or too ill to participate. I look forward to reading he was very unhappy at the 'protesters.'
Valorie Rand <vrand@capecod.mass.edu>
- 11/03/99 15:21:55 EST

Mr. Lasalandra, Good job. But I fear you have only reached the tip of the iceburg. Check out the LymeNet guide on www.lymenet.com Patients and Parents, these stories are heartbreaking. Please e-mail the CDC, Centers for Disease Control. Dr. Dennis is Branch Chief of Vector Borne Infectious Disease. dvbid@cdc.gov Tell them your story too! I e-mailed then a few minutes ago asking them to PLEASE make a statement regarding the current status of Lyme Disease. Many doctors, nurses and pharmacist do not recognize that Lyme Disease is NATIONWIDE. Since they think "We don't have it here", they are not familiar with the signs and symptoms and are unaware of the treatment and medications. All patients need immediate treatment. And of sufficent length; BEFORE the disease has time to set up in the victim's body. Waiting on tests to treat the patient causes unecessary vulnerability to developing this devastating disease-- Diagnosis should be made available upon clinical symptoms or victim's/patient's WORD. Other vector borne infectious diseases are not processed like Lyme. Snake bite...mosquito bites... Is Lyme a Crime? Too many times treatment remains out of reach. The affects on a person's health when non-medicated (denied or unknowingly) versus medicated are too risky and debilitating to chance. Widespread medical ABUSE is occurring in the the form of denying or stopping treatment for Chronic Lyme patients. There are NO valid reasons for this. Not enough is known about this baffling disease to make assumptions concerning policies or conditions regarding length and type of medication and treatment. Patients should not have to beg to be treated for this plague! Lyme Disease mirrors other diseases including arthritis, fibromyalgia, MS, gulf war syndrome and many more... Do these people have Lyme Disease? Epidemic amounts of Lyme Patients suffer frequent excruciating nervous system experiences. Many are left with permanent neurological involvement. Unimaginable pain levels are possible, usual, numerous, and changeable daily with variables in intensity and location without explanation. Lyme Disease sometimes presents as chronic fatigue syndrome, depression, cardiac irregularities, urinary tract disorders, emotional unbalances, etc. What about people with unexplained aggression? (Criminals & normal people who freak out?) Some of these people could be experiencing neuropsychiatric manifestations of Lyme Borreliosis. And since alcohol increases the severity of lyme symptoms we are speaking of a public safety concern; not just a medical one. This needs to be checked out. These people could have Lyme Disease. Survey prisons, investigate recent medically unexplained deaths, and test patients who have copycat diseases. Lyme is called the great pretender. The medical community should stop pretending... Stop pretending that it doesn't exist everywhere... Stop pretending to have all the answers... Stop pretending it doesn't irreparably damage the health, lifestyle, emotional and financial well-being of thousands, possibly millions. Lyme Disease crosses cellular boundaries and gets into EVERY CELL and ORGAN in your BODY!!! And once there it proceeds to produce and dump toxins into your system! So...it could be the cause of many of the massive health problems facing our nation. Physical, Sexual, Mental, Emotional...Feel just AWFUL? Could be Lyme Disease. Can't sleep? Hair falling out? Ache all over? Noise and light bothering you? Unexplained weakness, numbness? Depressed? Frequency urinating? Sexual problems? Memory losses? Irregular heartbeats? Lyme Disease is dermatologic, neurologic, opthalamologic, cardiac, rheumatologic and psychiatric. And what about sexual contact spreading this disease? That hasn't been ruled out. The public should be made aware of this. Just because we don't have all the answers doesn't mean we should stop looking. Take a minute from the millennium... I am asking for your help... as a victim of this disease; as a mother, daughter, sister; as a citizen of the United States of America, as a resident of the state of Alabama and as a former paramedic who cannot stop my inclination to be a healer. I didn't ask for this disease. No one did. I felt the tick bite me, had a bull's-eye rash, and sought medical treatment. But because the doctor, nurse and pharmacist didn't recognize Lyme in my area I was not treated correctly. I now have Lyme Disease. In my joints, nerves, heart, brain and everywhere else... It has stolen my normal, active, healthy life and left me with endless pain, muscle and joint damage, overwhelming fatigue and facial numbness and disfigurement. And many more are worse than I. No one deserves the suffering this disease causes. Demand the CDC issue a National Lyme Disease update immediately! A statement advising physicians to NOT DENY the possibility...to NOT DENY the treatment... and to NOT DENY the medications. They have the means... CNN's right there in Atlanta. They have the ability... Best minds in the business? They have the responsibility... It's their JOB!!!! If we all keep shouting, someone will hear!!!
A. Wryter <hershy@sonet.net>
- 11/03/99 15:05:37 EST

Thank you so much for the article regarding Lyme Disease. As a Lyme sufferer you dont know what it means to have this type of support. Great article!! LCLott
Lisa Lott <lclott@yahoo.com>
- 11/03/99 13:38:11 EST

Although I am in Northern California, and not a member of the Lyme Alliance, or any other group, I would happily join the people protesting the honoring of a man who continues to endanger the health of thousands of lyme disease patients who are threatened with loss of their treatment by continued publication of his obsolete concepts. Since l991 I have of necessity researched this disease myself, as few doctors were willing to listen to, much less investigate the possibility of lyme treatment. It took seven years, and more doctors to find a doctor who truly listened to her patients and researched all the available current data to find adequate treatment possibilities for each patient. Would I choose to have to fly 600 miles for an appointment with a Lyme Literate doctor not covered by my HMO? Would I choose to take antibiotics for months, when for most of my life I rarely used even a headache remedy, and had two kids with no drugs at all? Of course not. But I am an educated, intelligent person who realized my first diagnosis was wrong, and set out to find some answers. With internet access, we have the scientific proof we need to help guide our quest for adequate treatment. The NIH should be honoring those doctors courageous enough to stand with their patients and refuse to accept outdated concepts perpetuated by those unwilling to give up their faded glory in the face of the truth which modern techniques (such as the use of the electon microscope) can provide. Your article will at least make some people aware that there is major opposition to Dr. Steere's views. Please continue to investigate. Lives literally are depending on the governments recognition of the devastation this disease is causing in a growing percentage of our population. Sincerely, Ann Wyatt
Ann Wyatt <kann229@yahoo.com>
- 11/03/99 13:07:05 EST

Thank you so much for the great article regarding the "Steere Protest". I have been suffering from this horrid disease for the last ten years. The last five have been especially hard - Two years bedridden and the remaining three pretty much housebound off and on. My husband also has Lyme. At one point I was labeled "crazy" and admitted into a psychiatric hospital where I consantly argued with the "doctors" that there was something terribly wrong with my body, not my head! The first few years were rough - I couldn't help but think "what would it have been like to have been diagnosed early on?? Would I have my life back now? even just HALF of it?" I am past that now, although it is hard when I'm reminded daily with the difficult task of just getting out of bed each morning. It's pretty scary when one has to go "underground" to get treatment, and worry if their lyme doctor will be the next Dr. Natole. With great Lyme activists and writers like you, we DO have a chance of being heard! I'm a firm believer in "what comes around goes around". Some day the TRUTH will be known!! https://www.angelfire.com/me2/StarShar/Lyme.html My Story: https://www.angelfire.com/me2/StarShar/MyStory1.html
Anita <starshar@tir.com>
- 11/03/99 12:48:32 EST

Our medical community needs to wake up and realize that they do not know all the answers to treating lyme disease. A narrow view of diagnosis and treatment is a death sentence for people who have lyme. This disease is nationwide, and I fear that many people are being diagnosed with MS, Chronic Fatigue Syndrome, etc., when they actually have lyme disease. My husband has been sick with lyme for more than two years. We live in the state of Washington, where lyme is supposedly very rare. We have not been out of the Pacific Northwest in over 13 years, and know he contracted it here. Thank you to the compassionate doctors who are willing to believe patients with "weird", "atypical" symptoms, and give treatment.
Penny <jamest@coastaccess.com>
- 11/03/99 12:41:18 EST

I am writing in response to the article about Allan Steere and lyme disease. My 10 year old daughter has late stage lyme with central nervous system infection. She had the disease for 4 or 5 years and saw at least 18 doctors before we could find a doctor who could/would diagnosis and treat her. Dr. Steere says he "requires scientific evidence" for the diagnosis of lyme disease. If Dr. Steere knows of a conclusive testing procedure, that does not require clinical observation as the major tool, for diagnosing lyme disease, he is withholding valuable information from the medical community. At this time, scientifically speaking, there are no definitive tests for lyme disease. My daughter's MD, at my request, repeatedly ordered the ELISA test. The titer would come back negative and he repeatedly dismissed her symptoms as "growing pains", "emotional stress" or just did not follow up on her symptoms. He never ordered a Western Blot. As a RESULT OF NOT RECEIVING TREATMENT AT THE EARLY STAGE of lyme disease my daughter, and all of us, have suffered horrendous emotion and physical pain. She can not attend her regular school (costing the local taxpayers $23,000 a year), she has brain damage, suffers from partial sight loss, is at times emotionally unstable, has lost most of her social life (the birthday parties she does get invited to she can not manage, as she is not able to function at the level of her peers and feels humiliated.) She spent 3 1/2 weeks in a locked pediatric psychiatric unit last summer. She was nine years old. Reflect on the summer you were 9. She was paranoid, delusional, psychotic, suicidal, homicidal, having hallucinations, severe confusion, pain in major and small joints, partially lost vision (could no longer read, which she had loved), had severe cognitive regression (which included being unable to add 1 + 2, literally, and knew it). Because she could not attend public school she was placed in a "behavioral program" locally. At this "school" she was put in solitary confinement almost daily for 3 months. She had testing no adult should have to endure. Some of her test results; her IQ dropped 45 points in 6 months, two abnormal MRIs, with multiple lesions throughout the brain, predominately in the frontal lobes, an abnormal SPECT scan showing low blood flow to the prefrontal lobes, an abnormal visual evoked potential. She is exhausted and irritable most of the time, which impacts her ability to ride her bike, swim, run, rollerblade or play any sports. Since being diagnosed in June 99 she has been on a high dose of tetracycline and is recovering a lot of what she has lost. If she had been treated adequately with tetracycline from the first suspicion of lyme, she would be well and would never had known these experiences. Lyme disease is in YOUR backyard. It is all around us. It is time we allowed the TRUTH about lyme be heard, so no more will die, so research for a cure will be started. Antibiotics only "cure" lyme if it is caught VERY early. Late stage lyme, with central nervous system infection, which my daughter has can , at best, go into remission. Any time in her future, unless a cure is found, she experiences an extremely stressful situation, she can have a "flare" and become partially to totally disabled for an indeterminable amount of time. From this family's perspective, Dr. Steere, lyme disease is UNDER diagnosed and UNDER treated and I personally am asking you to stop influencing the medical community that it is over diagnosed and over treated.
Kay <b10g7@mediaone.net>
- 11/03/99 11:46:19 EST

Great article about Dr. Steere. I am a chronic Lyme patient and know what it is like to have your life ruined by this disease. I was not diagnosed for three years (so much for overdiagnosis) and possible have had this since living in Maryland in 1988. I had a few symptoms at that time after a "flu-like illness" and was left with some numbness. After my son was born in 1995 I went downhill very quickly and have suffered all of the symptoms of Lyme. I never even suspected Lyme and neither did any of the many doctors I was referred to since I now live in Missouri and "we don't have Lyme here". No one considered that people live and visit many places in their lives. Anyway, I know Dr. Steere is wrong in believing that chronic lyme doesn't exist or need treatment. There is so much unknown about the disease and it's forms (cyst, spirochete, etc) and how it functions in the human body that treatment is really a hit and miss thing. I know that I felt better on antibiotics but it did not "cure" me. I am currently not taking anything and am going downhill again. What is the answer? I don't know, but closed minded physicians like Dr. Steere only hamper the research and treatment of patients like myself and are hurting a lot of people who just want to get their lives and health back. Thanks again for the article. Sincerely, L. Sippel
L. Sippel <rlsippel@ktis.net>
- 11/03/99 11:31:03 EST

thank you for a well written article on the protest against the "astute" Dr Steere.....i am one of those crazy lyme activist he talks about...i have suffered from lyme for over ten years and thanks to his theories was not diagnosed for over 3 years......now at the age of 42 and since the age of 38 i am on social security disabilitie due to lyme and related functional problems...not the way for a young man to live.....and there are many more out there like me .....what are we hypochondriacs with esp? that is what he is expressing.....thank you once again for the support and story Reid McMurray Denville,nj
Reid McMurray <rmcmur3194@aol.com>
- 11/03/99 11:01:32 EST

Dear Michael, Thank you for writing an article concerning the Lyme Rally at NIH. I am a lyme vitim that has been suffering for three years now. When I was first infected my doctor treated me for a sinus infection. As the months passed I developed blurred vision, vertigo, eye lid twitching, motion sickness and the list goes on. Finally my doctor treated me for neurological lyme. After I didn't respond to approx. eight weeks of low dose oral antibiotics I was told by my doctor and an Infectious Disease doctor that I didn't respond to antibiotics I do not have lyme but MS. I was in tears because I was so sick and needed help. After three years on various antibiotics I am doing very good. I still can't stop this medicine (I have tried many times only to get extremely sick again)but now I can function again. If it wasn't for the few doctors that have taken the time to really learn about this disease I honesty think I would be dead today or have permanent brain damage. Thank You, Karen Crown, New Jersey (856)241-1159
Karen Crown <Crown@Prodigy.net>
- 11/03/99 10:24:26 EST

Dear Mr. Lasalandra, Thank you for your wonderful article on the protest of Steere. We are a family with three of four members infected with lyme and it has been a nightmare. We were told by Steere's office not to pursue diagnosis, leading to seven years of misdiagnosis. We unfortunately believed him as he was proported to be the worlds leading expert. It befuddles me as to why this man can receive any honors when his dogma is causing so much pain and suffering? ( last year he was honored byt the state of Connecticut, as well) I know that the truth will come out about lyme and it is articles like yours that may help to blow the lid off of it before the body count is too high. Thanks you. With respect, AMY KELLEY
Amy Kelley <monkeys04@aol.com>
- 11/03/99 10:00:08 EST

Dear Mr. Lasalandra, I must take the time to thank you for covering Dr. Steere's talk today at the NIH, and the protest planned today. If I was subject to his treatment regimen, I would not be able to walk today. In the Spring of 97 I had 12 weeks IV antibiotics as did my husband for the treatment of Lyme. Pre-lyme, I was able to climb 126 flights of stairs in 20 minutes on a stairmaster and was able to spend 6 hours straight engaged in strenuous physical activity. At the height of my Lyme, I was unable to stand past a few breif minutes, and was in severe pain when I walked. I was looking into accepting the fact I would have to buy a wheelchair. My neuro-cognitive difficulties were very severe (often an aspect of Lyme unrecognized by the general public), and I have been unable to return to work as an R.N. since. My husband and I both remain positive for Lyme urine antigens and have just started therapy for it. My 3 children also now test positive for Lyme. If Dr. Steeres theories regarding a 4 week cure were correct, then none of my children would be exhibiting Lyme symptomatology today. Sadly real life has proved him wrong. I am thankful I was able to find out that Dr. Steere was one to avoid when I was seeking treatment for my Lyme. Lyme Disease needs more research and more federal funding. We need a blood test that will define a "cure", as there is no test currently available. Lyme is a "clinical diagnosis" according to the CDC, and often sero-negative patients are helped by antibiotics.... Lyme Disease needs to be brought to the forefront of attention in the United States as the serious health risk it is, and your article has helped. It is a disgrace that acne patients can have months and months of antibiotics given as treatment, while a severe disseminated spirochetal infection is dismissed as easily curable by Dr. Steere in 4 weeks. Thank you, The Gadaleta family
Bernadette Olejko-Gadaleta, R.N. <BratDet@aol.com>
- 11/03/99 09:38:07 EST

Just a few comments about "Dr. Steere". My wife, her daughter and son, and her ex-husband all have Lyme Disease. Infected in 1986, while living in Mt. Laurel New Jersey, they went un-diagnosed until October 1998. 12 YEARS! Now, fully disabled, after being a nurse for 25 years, her 15YO daughter unable to go to school for the past 4 years, her ex-husband "booted" out of the Air Force for "incompentency"... In 1990, an Air Force doctor ran a LD test on her. The test was positive, but due to some unknown factor, she was never told of the test, never treated, instead she was sent for bio-feedback. Her 15YO daughter has been hospitalized 14 times, all psych, all to no avail. No diagnosis ever given, no psych treatment ever helped. She was told over and over that she "must have been abused to act like she does". Now, here in South Carolina, the head of Infectious Disease for the Department of Health states "people in South Carolina can not get LD". A congressman here said "It would be bad for tourism to admit LD is here". No infectious disease doctor in the state of SC would or will treat my family. All this...in part...thanks to "Dr. Steere". He is the one they read, and then quote. It doesn't matter that the World Health Org, and a few hundred other reports contradict what he says. I would invite this "God" of medicine to my house. Let him test to his hearts content. If he can find that they have something else, then he is better than any other doctor in South Carolina, New Jersey, California, Florida, or Georgia. We don't care if it's LD, or something else, just find it and fix it! This disease has bankrupted me personally, caused 3 of my children to be unable to go to college, disabled my wife, destroyed 2 careers, emotionally destroyed a 15YO child. It is sad that a 15YO would be so serious, and say..."I wish I had AIDS, at least I could get treated". Dr. Steere, the CDC, and NIH need to get into the real world, live with the results of their work and maybe...just maybe they would understand. David R. Huddleston
Rick Huddleston <rickh@kismetdesigns.com>
- 11/03/99 09:11:37 EST

The Westchester Medical Center in NY State is having a study on "Chronic Lyme's", because there is so much controversy about those of us who persist with serious symptoms after having an IV Rocephin Treatment. I'm talking about the many of us who test positive on the Wesyern blot and the PCR test even after the so-called standard treatment. There is just a lot that we do not know, and I am sorry that passion has led to rigid politics. We need more research, not pronouncements, and fights. And, those of us who need treatments need to be flexible about the kind of treatments, and hopefully can work with a cooperative doctor.
Barbara Tag <tagpenner@earthlink.net>
- 11/03/99 09:04:10 EST

I wholeheartedly disagree with Dr. Steere. My daughter has been and continues to be treated with antibiotics for neurological LD for 8 months. The initial treatment of 30 days did not touch the symptoms. It took several months for the symptoms to subside for short periods of time. No one knows, not even Dr. Steere, if the bacteria are eradicated after 30 days of treatment, as there is no definitive test to determine the presence or non-presence of the bacteria. The use of the ELIZA screening test is so inaccurate that it should be eliminated as a screening test. With a 60-70% false reading rate (primarily false negatives), hundreds of patients infected with Lyme disease go untreated until neurological symptoms occur. This is a travesty. This type of screening would have the world in an uproar if it were the only screening test for HIV, HCV or HBsAg. At least in those screening tests, the test error on the side of false positives, not false negatives. But because it LD is not a communicable disease (that we know of at this time), it gets very little attention. My daughter had two false negative ELIZAs for LD and therefore had a delayed diagnosis, which has resulted in the destruction of not only her life, but of the entire family's life. Two Western Blots finally diagnosed her condition. Dr. Steere's attitude only gives credence to physicians who are ignorant to the ramifications of the lyme bacteria and dismiss lyme patience as hypochondriacs. Perhaps Dr. Steere needs to speak with us before he speaks to the NIH. To make the statements that Dr. Steere is unprofessional and irresponsible. I can't help wondering if he is merely looking for notoriety and publicity. He is doing a disservice to all doctors who truly care about their patients and to their patients. He should be directing his efforts to finding a means of detecting these horrible horrible bacteria and to finding a cure for it. He should not be denigrating those doctors who are truly dedicated to curing Lyme disease. He obviously is not. I was initially going to take my daughter to him for treatment. I thank God I did not and have found a truly brilliant and caring doctor whose dedication is to his patients, not to making a name for himself
Sylvia <knevarc@aol.com>
- 11/03/99 08:44:09 EST

Dr. Steere is covering the HARSH reality Lyme Disease. There is a HUGE cover-up going on here. Steere can't admitt he is in error because, is he too puffed up with pride? And we suffer for it. The truth will come out soon! Please, listen to the protester's stories..they have lived Lyme's nightmare. They ARE the REAL HEROS.
Mary <Ksting@avci.net>
- 11/03/99 08:31:34 EST

Michael, Thank you so much for the article in ref: to our protest against Steere. I've been recently diagnosed in May with Lyme, and have been almost 100% disabled. I've had this since 1993 and undiagnosed. I've also been treated to 21 weeks with different antibotics, and only show a slight improvement. I hope maybe you will follow this story as there are multitudes of stories much wors than mine that really need to be told. Thank you again.
katherine slink <kslink@snet.net>
- 11/03/99 07:36:13 EST

Thank you for your attention and awareness regarding Lyme Disease. Your article was brought to my attention through lyme sufferers from around the country. I live in Kentucky. The disease is not recognized here and even when it is, Alan Steere's treatment protocol is adhered to. After 19 years as a successful stockbroker, lyme disease ended my life. I went to 18 different doctors, 30 months with ever diagnosis except lyme and now have so much scaring in the brain from the encephalopathy that I am unable to work, have no memory, have other physical damage, total dependent care and little hope for recovery. I'm only 40 years old. The financial burden of late lyme is enormous. My treatment alone is running $ 8,000.00 a month. The disability company wants to call it a mental disorder. A courageous local physician did the test and then referred me to a lyme literate doctor in New York. He tried to rule anything in and lyme out, but in the end it was Late Lyme, Stage IV. I am only one sad case of many. Even today, when I consult on a local basis the infectious disease doctors quote Steere, and then asked me why I'm trying so hard to find a quality of life standard. Why don't I just give it up and accept my other symptoms the chronic symptoms could be treated in other ways than lyme. That is true, the arthritis with steriods, the pain with meds, but my brain is my quality of life and only IV antibiotics have given me hope, even if Steere disagrees. I apologize for the personal stuff. Just really wanted to say how much I appreciated the honestly in reporting and the support you have shown not only the community there but the network of lyme patients all over this country. THANK YOU!
debbie allen <agreetogether@dellnet.com>
- 11/03/99 07:10:25 EST

Quick note early this a.m. as I'm on way to protest. I want to thank you for your article on our situation with Lyme Disease and Dr. Steere's "theories". Thanks so much!
Ellen Clemetson <Li2htwave@aol.com>
- 11/03/99 05:55:23 EST