The Lyme Disease Chatroom Pamphlet
THE LYME DISEASE CHATROOM PAMPHLET
Welcome!!
My friend and cohost, Pat (PSpatches), and I, Jim (Lymechat), would like to welcome you to the Lyme disease chatroom. We hope that you'll come to think of this place as a haven for those with Lyme disease; a place where you can come to meet with other fellow "Lymies" to discuss the most current goings on in the Lyme community, or to merely vent on those really badLyme days.
This chatroom, Private Room Lyme Disease meets on Wednesdays at 3pm Eastern, 2pm Central, and 12 noon Pacific times. To attend this chat simply click on the above hyperlink at the scheduled time.
We've enclosed a pamphlet about Lyme Disease which we hope you'll find helpful. We created it back in 1997 in the interest of helping others afflicted with this terrible illness. It's updated from time to time in the interest of providing the most current information available on Lyme disease and Lyme related topics including symptom, diagnosis, treatment, and prevention information on Lyme Disease. To learn more about a highlighted topic, click on it. We hope that you'll find this pamphlet helpful and share it with others.
Sincerely,
PSpatches (Pat) <( : ) and Lymechat (Jim ) : )
New "Lyme" Newsletter
For new subscribers,we have resigned from the AOLyme newsletter to create a new one called Lyme Matters, which is published on approximately the 15th of each month and E-mailed to you. Please click on the following link to Subscribe. If you would like to view previous issues of our Lyme Matters'newsletter, you can do so by clicking on this
link: Back Issues Of Lyme Matters Prior issues of America OnLyme newsletters can be accessed here: Back Issues of AOLyme Newsletters
We have created a Web site in tribute to Lyme disease sufferers around the world. It
can be accessed by clicking here: The Lyme Disease Quilt Page
There are an ever increasing number of link's pages appearing on the Web relating to Lyme Disease. The following two are the most comprehensive ones that we've seen to date.
Art Doherty's Lyme disease links page
Cheryl's Lyme Disease Page
Internet Chatroom -- open to all Web Servers
(No password needed)
Open 24 hours a day: Lyme Disease Chat -- accessed by all Web Servers
The following are Lyme related message boards:
Sci. med. diseases. lyme
Message Lyme Disease Board
INTRODUCTION
There's quite a bit of controversy with regard to Lyme disease around the world today. Much of it's centered around which treatment protocols patients afflicted with this illness should receive. This has left both the Lyme and Medical communities facing a serious dilemma. It's no secret within the Lyme community, that there are two groups of physicans whom are diametrically opposed with regard to how patients who've contracted Lyme infections should be treated.
Organizations, including the NIH (National Institutes of Health), CDC(Center for Disease Control), and AMA (American Medical Association), as well as the heads of some of the better known hospitals claiming expertise in treating Lyme, continue to cling to outmoded, ineffective protocols for treating this illness, while a much smaller group of physicians have learned to adapt to newer ways of thinking, which include more aggressive therapies for their patients.
This has made them the object of frequent attacks by their more conservative peers, even though they have demonstrated that their more aggressive protocols have been helpful to chronically ill Lyme patients, who'd been given up on by more conservative physicians. Sadly, this small group of doctors now finds itself the object of a witch hunt by OPMC (the body which regulates physicians' medical conduct in the United States). OPMC has already revoked the licenses of some Lyme literate physicians, and is now in the process of considering the revocation of many more, because of unsubstantiated claims that these doctors are overdiagnosing and overtreating Lyme disease.
Nothing could be further from the truth, and the end result of this harrassment is that it's
encouraging other doctors who would become educated about Lyme, to steer clear of this illness. Consequently, instead of obtaining more Lyme literate doctors, which the Lyme community desperately needs, they're losing the ones they already have. If this injustice is allowed to continue, this community will find itself with no Lyme literate physicians left whatsoever. This must not be allowed to happen. Please visit the following Web site and contact your local politicians to voice your opinions on this issue : Find Your Representatives.
LYME DISEASE: WHAT IS IT?
Lyme disease is a bacterial infection spread by the bite of an infected deer tick . It was discovered in Lyme, Connecticut in 1975. While a group of scientists headed by Dr. Allen Steere of Yale University was credited with its discovery, a woman by the name of Polly Murray (who along with her family became afflicted with this illness) was truly the first person who brought Lyme to the attention of the medical community.
The bacteria which causes Lyme disease is known as borrelia burgdorferi , and is transmitted to the bloodstream where it can quickly bore its way into all types of tissue. If this infection is not treated quickly and properly, it can become chronic and eventually attack all the body's major organs including the heart, liver and brain.
Cases of Lyme disease have been documented in many countries around the world including the United States, where it is concentrated in the northeastern and mid-western regions of the country. (While it is concentrated in these areas, Lyme has now been found to exist in virtually every U.S. state). In addition to several different types of ticks, sand mites and the green headed fly have also been found to transmit Lyme, and other hosts include deer, the white footed mouse, and at least ninety-nine different species of birds. Mosquitoes and chiggers are now also thought to carry Lyme disease.
Ehrlichiosis and Babesiosis, are two other serious tick borne infections that have recently been discovered in a number of Lyme patients, and should also be tested for in the event of a tick bite. They have become such common co-infections to Lyme disease, that Joseph Burrascano Jr., a physician well respected for his treatment protocol for Lyme disease, has proposed to redefine this illness to include these other two infections. He's now also doing research on Stealth viruses which he believes aggravate a Lyme condition.
In his Lyme disease related monograph, Advanced Topics In Lyme Disease, he proposes to "refer to the general symptom complex as "Lyme," but will refer to the separate entities as Lyme Borreliosis (LB) or Borrelia burgdorferi (Bb), Babesia microti (Bm), and the Ehrlichia species as a group." He also believes that because "ticks live in dirt and drink the blood of wild animals," that more co-infections to Lyme disease will be found in the future.
Numerous symptoms can accompany a Lyme disease infection; each of them is considered to relate to at least one particular stage of this illness. Click on the link see the most current list of Lyme Disease Symptoms .
Because many of these symptoms may overlap various stages of this illness, only a physician with expertise in Lyme disease will be able to determine which stage of the disease a patient is in, and consequently, what type of antibiotic treatment to recommend. Anyone with these symptoms should contact a Lyme disease literate physician immediately. If you need the phone number of a Lyme literate physician in your state, please contact either PSpatches or LYMECHAT , and we'll do our best to assist you.
THE STAGES OF LYME DISEASE: WHICH ONE ARE YOU IN?
The best descriptions used to differentiate between the stages of Lyme disease are: early localized ("bull’s eye" rash), early disseminated, late disseminated and chronic.
The early localized and early disseminated stages of Lyme are where a patient has the best chance of being cured. In the later two stages, curing this illness becomes unlikely, as the spirochetes have been able to penetrate deeply into areas of the body where blood flow is reduced, making it nearly impossible for antibiotics to eradicate them. Thus a remission from Lyme, rather then a cure, becomes the objective.
Should you find that you have Lyme disease, support groups can be an incredible source of comfort to you. Below, we've included a link to support groups around the world.
LymeNet Support Group Listings
DIAGNOSING LYME DISEASE
Diagnosing Lyme disease should be a fairly simple task for those who test positive for it in
a blood test, or display the easily recognizable "bull’s-eye" rash (although there are many other rashes of Lyme Disease which are not as easy to recognize). Patients who don't display these easily recognizable symptoms will find themselves going through a process of elimination, in which many other illnesses will need to be ruled out before a diagnosis of Lyme disease can be made.
In addition, there are many states which do not acknowledge having a problem with Lyme Disease; many patients who have displayed classic Lyme symptoms and reside in these states have been denied treatment for this reason, and are told that there must be some other illness to blame for their symptoms (or worse yet, that their symptoms are psychological). This problem is also complicated by the very nature of Lyme, because of its tendency to mimic so many other illnesses. The result can lead not only to an improper diagnosis, but also, to either incorrect treatment, or none at all.
While Lyme has been found to mimic at least two hundred different illnesses, the following ones are commonly incorrectly diagnosed: Multiple sclerosis, Fibromyalgia , Systemic lupus, Infectious mononucleosis,ALS , Chronic fatigue syndrome, andAlzheimer's Disease.
Moreover, scientists have discovered more then one hundred different strains of the Lyme spirochete, which can further complicate diagnosis and treatment. The following serologic tests are most commonly used to search for antibodies that one’s immune system develops against the spirochete:
IFA - immunofluorescent assay - measures total immunoglobulin (Ig), IgM, and IgG
antibodies
ELISA - enzyme-linked immunosorbant assay - tests for IgG and IgM antibodies to spirochete
Western Blot - useful in confirming borderline serology or in evaluating false positives
Because it takes the body’s immune system at least several weeks to develop enough antibodies to be detected in a blood test, these tests are of little or no use before then. In some instances patients may never develop high enough levels of antibodies to test positive for Lyme.
For this reason, alternative testing including the antigen capture, multiplex polymerase chain reaction, and recombinant Lyme tests can be useful. The antigen capture tests (LUAT and CSF) search for small cells given off by the spirochete. These cells can be present in the urine, blood, or cerebral spinal fluid of a person who is infected with Lyme.
Multiplex polymerase chain reaction is used to identify DNA from the spirochete, by testing a person’s blood, urine or cerebral spinal fluid. The recombinant Lyme test uses DNA from a Lyme spirochete, which through a scientific process, is used to produce a new protein called P-39, which is exclusive to the B. burgdorferi spirochete.
While these tests can be useful in detecting Lyme disease in a patient who fails to test positive for it in routine blood tests, they can frequently be unreliable. Since none of the tests used to detect a Lyme disease infection are overly reliable, physicians examining those patients who may have Lyme disease should also require a clinical evaluation of the patient.
This evaluation should take into account the patient’s medical history, symptoms, lifestyle, any previous history of a tick bite, and the region in which the patient resides (The area may have a history of tick infestation). The tests below are used to rule out other illnesses when attempting to diagnose Lyme disease.
Lumbar puncture - used to determine if the central nervous system is effected - may not determine if Lyme is present, but can rule out other illnesses
CAT scan - computerized axial tomography - provides computer interpreted X rays of the body
MRI - magnetic resonance imaging - provides highly detailed images of the body
EEG - electroencephalogram - measures electrical brain impulses - rules out abnormal brain activity
VERS - visual evoked responses - a more sensitive test for Multiple Sclerosis
Echocardiogram - used to detect heart problems - can determine if heart symptoms are Lyme related
SPECT Scan- single photon emission computed tomography - used to detect Lyme encephalopathy and the reduced blood flow through the brain associated with it
Tilt - table test - can be used to detect neurally mediated hypotension - a problem with Lyme patients
The following blood tests can be used to rule out other illnesses :
Thyroid Profile - used to rule out thyroid disease
ANA - used to rule out diseases such as lupus
VDRL and RPR - used to rule out syphilis
CBC - used to check for anemia
B -12 andfolate levels - tests used to determine the vitamin B12 and folate levels in the body
* There is a new blood test available for Lyme disease which is reported to be
the most accurate yet. To find out more about this test click here: Bowen Research
Sadly, Lyme disease remains a very controversial illness. And because the medical community can't agree on a proper protocol for treating it, insurance companies are left with a "loophole" in which they (can and often do) avoid paying for many of the medications and treatments which are prescribed for Lyme patients by their Lyme literate physicians.
This creates even more of a problem for financially strapped Lyme patients, as they end up paying out of pocket for medications that their insurers refuse to cover. In some cases these patients must forego medications altogether, because they simply can't afford to purchase them. The link below many be of some help. It lists pharmaceutical companies which provide free medication for those who can't afford to pay for it on their own. While patients must prove that they are indigent, it at least affords them the opportunity to obtain medications for treating their illnesses, rather then allowing them to worsen.
MHCR - Medication Assistance Programs
If you are a patient who has been turned down for Lyme disease related treatment by your insurer, you are not alone. There are many insurance companies whom are refusing to cover long-term therapy for Lyme patients. Attorney Ira Maurer has been championing this cause. If you're having this problem you can contact him at 914-948-3131, or E-mail him at: LymeLawyer@aol.com. Click on the The LymeNet Law Pages to access his legal website.
TREATMENT FOR LYME DISEASE
Both the treatment information and much of the diagnosing Lyme section of this pamphlet have been gathered from physician, Joseph Burrascano Jr.’s monograph: "Diagnostic Hints and Treatment Guidelines for Lyme Disease."
Once a diagnosis of Lyme disease has been made antibiotic therapy should begin as soon as possible, to prevent the illness from becoming chronic. A knowledgeable physician will determine which antibiotics are best suited to his patient based on the patient’s age, weight, gastrointestinal function, blood levels achieved, and tolerance to a particular antibiotic.
In addition, patients’ symptoms should be considered in determining which stage of the disease they’re in. This can be helpful in selecting both the most effective antibiotic, and also, the best course of treatment (i.e. oral or IV therapy).
Special consideration should also be given to the antibiotics used when treating pregnant women and younger children. Moreover, an allergist should be consulted to test for a patient’s sensitivity to antibiotics before they are administered, to prevent any serious allergic reactions from occurring. Unfortunately, there is presently no single antibiotic used for treating Lyme disease that is consistently effective. However, the following ones are commonly prescribed by Lyme literate physicians.
Tetracyclines - doxycycline and minocycline
Penicillins - moxicillin , ampicillin
Macrolides - advanced generation only-azalides- azithromycin (Zithromax) and clarithromycin (Biaxin)
Cephalosporins- cefotaxime (Claforan) and ceftriaxone (Rocephin)
Another antibiotic, metronidazole (Flagyl), is now being used with some success by some Lyme literate physicians. Lyme patients are often required to take many different types of medications in treating their illnesses. Many times, they may have more then one doctor prescribing medications at different pharmacies, resulting in confusion over the number and types of medications being taken. Should two contraindicated medications be taken together (especially drugs known as MAO inhibitors) the results could be deadly!
In addition, many of the medications available today have very similar names which can lead to patients receiving the wrong medications. The consequences here are pretty obvious. This is where a list of commonly prescribed medications can be helpful. In addition, many of the terms that doctors use can also be confusing; especially for those of us with "Lymebrain!" We've included the first two links below to address these situations. The third link will enable you to purchase your medications online should you elect to do so.
On-line Medications Dictionary
On-line Medical Dictionary
drugstore.com
Treatment for Lyme disease depends on the stage of the illness. In both its early localized and early disseminated stages, oral antibiotic therapy is the preferred method of treatment.
However, if a patient doesn’t respond well to this, intravenous therapy will be necessary. In the late disseminated and chronic stages of Lyme, intravenous therapy is mandatory if the patient is to improve.
The duration of therapy depends on how long it takes for the patient to become symptom free, and can last for several weeks or months (It should be noted, however, that many chronically ill Lyme patients never become symptom free, regardless of how long they've been on antibiotic therapy). The Jarisch Herxheimer reaction refers to the worsening of patients' symptoms after antibiotic therapy has begun, as toxins are given
off by dying spirochetes. To learn more about this reaction click on the above link.
Research has shown that antibiotics can only kill spirochetes during their growth phase which can greatly complicate treatment. Because Lyme spirochetes can be extremely adept at "hiding out" in different areas of the body, high blood levels of certain antibiotics must be attained for them to be effective. Consequently, a patient’s antibiotic blood levels must be monitored regularly and adjusted when deemed necessary.
A knowledgeable physician employs the use of blood tests which measure both the highest (peak) and lowest levels (trough) of antibiotic in a patient’s blood stream. He looks for a peak in the mid-teens and a trough of greater than five when monitoring these levels. If peak and trough numbers are below these, the dosage of antibiotic is raised until these numbers are attained. In addition, with Intravenous therapy: CBC
, and chemistry and liver panels are done every two weeks, with urinalysis andprothrombin tests done monthly, to ensure that a patient’s organs aren’t being damaged from the high doses of medication being administered.
Recently, two other tick borne infections have been diagnosed in Lyme patients; Ehrlichiosis and Babesiosis. Ehrlichiosis, is a bacteria which invades white blood cells, bone marrow, and lymph nodes. There are two different forms of this illness; monocytic and granulocytic. Both strains should be tested for if an Ehrlichia infection is suspected. Ehrlichiosis is treated with doxycycline.
Babesiosis, is a protozoan infection that invades red blood cells. There are over twelve different strains of this parasite, however, only Babesia microti can be tested for; so a negative test for Babesiosis should not automatically rule out this illness. Babesiosis can be treated with a combination of quinine and clindamycin . However, several Lyme literate doctors are now using a medication called Mepron(Atovoquone) which appears to be more effective. They are using it in conjunction with either of the the antibiotics, azithromycin or clarithromycin, to improve its efficacy in treating both Lyme and Babesial infections. Some physicians now believe that because patients appear to experience herxheimer-like reactions while taking Mepron, that it may in fact also be useful in the treatment of Lyme disease.
HYPERBARIC OXYGEN THERAPY
Hyperbaric oxygen therapy has now become recognized for its role in the treatment of Lyme disease. Once used primarily in treating divers who suffered from the "bends," this therapy consists of placing patients in a pressurized "sub"to oxygenate their bodies.
The theory in its application to Lyme is that the different strains of Lyme spirochetes can't survive for very long in a highly oxygenated environment. The intention of using "HBO" therapy is to drive the spiro's out of blood cells and deep tissue in the body, so that antibiotics can do a better job of attacking them. While Research studies have shown that some patients have been helped by HBO therapy, they've also indicated that other patients appear to have received little benefit from it.
As of this time, there is no evidence that this method of therapy is curative where chronic Lyme is concerned. Furthermore, common sense would indicate that unless a Babesial co-infection has been treated and either eliminated (or at least gotten under control), HBO therapy may actually cause a Babesial infection to flourish, as these protozoans tend to thrive in a highly oxygenated environment. We'll continue to follow this therapy and update you from time to time.
LYME DISEASE PREVENTION: TIPS AND WARNINGS!
Most people in the Lyme community are well aware of the controversy surrounding theLyme Disease Vaccines that are now available. Most concerns pertain to their efficacy as well as safety. There is a lack of candor on the part of the Lyme vaccine manufacturers; they are quick to tell us about the success rate of these new vaccines, but omit significant information regarding those individuals who have become ill while taking them. Until they are more forthcoming with the negative aspects of these vaccines, they will continue to illicit concern from the Lyme community.
Also, while we in the Lyme community hope that these vaccines are successful, the fact that there are presently more then one hundred different strains of the Lyme spirochete, would indicate that they will not be useful in protecting the public from all strains of this bacterium.
Further complicating matters, is that individuals receiving any of these vaccines will not be protected against Ehrlichiosis and Babesiosis, nor any other yet to be discovered pathogens that ticks may transmit to their hosts. Consequently, the best way of guarding against Lyme and other co-infections is to follow the rules in the prevention section below. After all, it’s much better not get any of these illnesses in the first place.
If you must experience the "Great outdoors"please heed the following:
1. Apply Duranon or Permanone to your clothing and shoes; use them sparingly on your skin, as they can be toxic. Also, wear light colored clothing and a hat so that ticks can be spotted more easily, and remember to tuck your pant cuffs into your shoes or boots. Keep a magnifying glass handy to find "larvae" or "nymph" stage ticks which may be even smaller then this period(.), and next to impossible to spot with the naked eye.
2. Before returning indoors, check your clothing for any signs of a tick. Once inside your home, immediately wash your clothes at high temperatures for at least 30 minutes. This should kill any ticks that may have come in on your clothing. If not, drying the clothing at high temperatures should certainly finish off even the toughest of ticks.
3. Shower and shampoo you hair immediately after returning from a wooded or tall grassy area; this will alert you to a tick that may be walking on you. Don’t forget to check body areas where ticks like to hide including: under arms, behind the knees, around the base of the neck, and private areas including the groin.
4. If you own a pet, please don’t let it wander; It may pickup ticks in its fur and bring them right into your home! To protect your pet, ask your veterinarian about a new product called FRONTLINE .
5. Should you find a tick attached to your skin, use a pair of tweezers to remove it as close to the skin surface as possible. Don’t under any circumstances grasp it with your fingers! (you’ll just end up injecting any fluids from the tick into your own body!) Don’t use anything on the bite site except an antiseptic. Also, SAVE THE TICK !!! It can be placed in a small container and possibly later used to help in a diagnosis.
Of course, there is no substitute for good old common sense. If you are in a wooded area, avoid straying from designated trails and pay close attention to posted warnings -- we all like to be adventurous, but the trails and postings are there for our safety.
FEEL BETTER WITH NUTRITIONAL SUPPLEMENTS
People’s nutritional needs differ. Those with compromised immune systems need to be more attentive to these needs; Lyme patients most certainly fall into this category! For this reason it's of paramount importance that Lyme patients use adjunctive therapies in addition to the antibiotic treatments used to combat their Lyme infections (in this case, the adjunctive therapy referred to is the addition of vitamin, mineral and herbal supplements to their daily diets). For a sample supplement regimen please e-mail me at LYMECHAT and I will send you a copy of the regimen that I follow.
The vitamin and mineral guide link below is the most comprehensive one that we've seen with regard to vitamin, mineral, and herbal supplements. It should greatly enhance your knowledge of them. We've also listed links from some of the more reputable online healthfood stores, should you care to purchase your supplements online.
Vitamin and Mineral Guide
VitaminShoppe.com
Mother Nature.com
VitaminUSA
Nutritional supplementation should be adjusted periodically to insure that its benefits are maximized. Your doctor can do blood work to determine if any of the fat soluable vitamins you are taking are reaching toxic levels. If so, you can either reduce, or stop taking them until the toxic levels have receded. Also, iron supplements should be taken with caution, as they can become extremely toxic over time, and when taken in excess have been known to cause damage to the heart.
A nutritionist may also be helpful in suggesting a more healthy diet; but if Lyme patients are to feel better they must acknowledge their need for a healthier lifestyle, which should focus on eliminating the following: smoking, alcohol consumption, caffeine, refined sugars, and foods high in fat content. In addition, proper rest and (when possible) stress avoidance are mandatory to aid in the healing of their immune systems. Failure to adhere to any of the above will make living with Lyme disease even more difficult.
READING UP ON LYME DISEASE
Many informative books have been written on Lyme Disease in an effort to help not only those whom are afflicted with it, but also to create a better public awareness as to the severity of this complex illness. You'll be moved by the emotional stories of pain, suffering and courage. Moreover, you'll also become better informed about Lyme disease. The less ignorant the public is regarding this insidious illness, the greater the chance that fewer people will contract it. The link below will enable you to access many of these fine books.
Lyme Disease Book Store
In addition to these books we have three that we recommend to Lyme patients because of how helpful they've been to us. Because Lyme disease can become chronic, it's important for Lyme patients to realize that they themselves must maintain an active role in helping to heal their bodies. Any informative guides regarding medications and nutritional supplements are extremely important in helping the Lyme patient to achieve this goal.
The following books are highly recommended:
"Prescription for Nutritional Healing" By James F. Balch, M.D. and Phyllis A.
Balch,C.N.C., Avery Publishing Group, $19.95
"THE PDR POCKET GUIDE TO PRESCRIPTION DRUGS" Based on the
Physicians' Desk Reference, POCKET BOOKS, $6.99
"EARL MINDELL'S HERB BIBLE" By Earl Mindell, Simon & Schuster $13
A FEW LAST POINTS OF CAUTION!
There have been a number of organizations that are advising that Lyme disease patients whom are symptom free, may donate blood after a specified period of time. This advice is irresponsible as well as dangerous, because there is no sure way to determine whether
or not a person who has been treated for Lyme disease still has an active infection.
Many of those with chronic Lyme disease have never tested positive for it in an ELISA or
Western Blot (blood tests used to determine if a Lyme infection is present in one's bloodstream). This would mean that their Lyme tainted blood could be accepted by a hospital or blood bank and ultimately, transfused into another person! Consequently,
those who've been diagnosed with Lyme disease (even if they were diagnosed early
and appear to be cured) should NEVER donate blood.
Many people believe that Lyme disease is found only in rural areas. However, "ticks" are also migratory due to their ability to "hitch" rides on birds. This means that this disease can be found in cities as well as rural locations, and that people should take the appropriate precautions to protect themselves from it.
Consider that in 1993, an increase in the number of newly diagnosed Lyme Disease cases in the United States helped make it one of the fastest growing infectious diseases in this nation. In 2000, new Lyme cases have reportedly approached those of AIDS. (New Lyme cases however, are so grossly under reported in most states, that the true number of cases may actually exceed those of AIDS.) Of equal concern is that most people still don't know just how dangerous Lyme disease can be, or that it’s much easier to contract then AIDS.
After all, before reading this pamphlet, did you?
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