Senate Committee on Administration
Attn: Myra Schmitt, Committee Director
P.O. Box 12068
Austin, Texas 78711-2068

My name is Ronald James Martin; I prefer to be called James. Due to my health and finances, I cannot travel to Austin for the March 16, 2000 meeting, but I welcome the opportunity to have my testimony entered into the record. I look forward to the May 9, 2000 meeting in Dallas, where I most probably will be able to attend and testify orally.

I would like to thank Lt. Gov. Rick Perry for charging the Senate Committee on Administration to investigate the prevalence of tick-borne diseases in Texas, and Senator Chris Harris of Arlington for accepting the chairmanship. I would like to thank all of the other committee members and staff for their time and efforts.

The committee has taken on a rather large charter; one I believe that will take more than three meetings to cover. Ticks transmit various disease-causing agents from animals to humans, their pets and their livestock. These agents include viruses, bacteria, rickettsiae and protozoa. Next to mosquitoes, ticks transmit the greatest variety of disease-producing organisms. They are obligate parasites of vertebrates and in the United States most ticks utilize three different hosts for blood meals, one in each of the larval, nymphal and adult stages.

The better known of these diseases are Lyme disease, Rocky Mountain Spotted Fever, Ehrlichiosis. Tularemia, Babesiosis, and Tick paralysis. Some are severe, and even fatal¹. New diseases with ticks as the vector are being discovered all the time. The mid-gut of the tick has been called a veritable sewer of diseases.

I do not own any pets or livestock, so I will try and restrict the remainder of my written testimony to the subject headings that the Texas Lyme Coalition has asked to be addressed, and to which I have personal experience; Lyme disease and babesiosis.

(For the coffee addict, my complete story is documented at https://www.angelfire.com/biz/romarkaraoke/james.html)

•  Geographical location at which you received the tick bite

  Working backwards through family history and my own memory, it is believed that my first tick attachment was in Gibbstown, New Jersey when I was 6 years old. There were subsequent attachments while living in Massachusetts, Connecticut, Virginia, Texas, North Carolina, South Carolina, California, and many countries in South East Asia. These many episodes are due to being a Navy brat and a career Marine. The economic plight of military families is well known, as are the military "ghettos" where they live.

• Length of time you were or have been ill

  I’ve had many short-term, unexplained illnesses throughout my life; usually of the flu-like symptoms, lethargy etc. Their self-resolving nature left many physicians scratching their heads, but since I was "better", it was ok. No need for follow-up if there are no symptoms to pursue. Overall, I estimate I have been afflicted with various manifestations of Lyme-related diseases for 40 of my 53 years.

• Whether or not you had a rash (erythema migrans)

  On at least two occasions the classic bulls-eye rash was seen, and I remember on both occasions it being treated as ring-worm. I’ve had various other cluster rashes that have been identified as EM, but not a true bulls-eye.

• Any difficulties you had in being diagnosed

  Even in retrospect, that is a hard question to answer. It all comes down to the body of knowledge at that time. What’s in a name? It wasn’t known as Lyme disease when I first became "bit by a tick." Perhaps a brief timeline can put that into perspective:

   Lyme Disease: A Brief History and Update

  1883. A German physician records the first case of what is now known as Lyme disease. It has been epidemic in Europe for the last fifty years, and has spread to six continents. Lyme disease today has surpassed AIDS as the fastest-growing infectious disease in our country. Its victims include fetuses and newborn.
  1970. A professor of dermatology in Wisconsin, Rudolph Scrimenti, reports the first instance in America of erythema migrans, the rash which is indicative of Lyme disease in many cases.

  1975. Allen C. Steere, MD, a rheumatologist-in-training from Yale is sent to Lyme, Connecticut to investigate a cluster of cases of rashes and swollen joints reported by Polly Murray and Judy Mensch.

  1975. Scrimenti hears about the Yale investigation and sends information to Steere and his colleagues about the EM rash and treatment with penicillin.

  1977. A study published by Steere et al. claims discovery of a new clinical entity and names it Lyme arthritis. They treat with aspirin and steroids, consider it self-limited, and see no benefit from treatment with antibiotics.

  1983. Second thoughts by the above doctor and his rheumatology colleagues who now admit that the disease is worldwide, more serious than originally thought. They start treatment with oral and intravenous antibiotics, and define three stages of Lyme disease that affect many organs including bone, muscle, connective tissue, heart, eyes, and the brain. The Lyme disease spirochetes can reach the latter within hours of injection, resulting in dementias that include Alzheimer's-like symptoms and clinical depression at any of the stages.

  1986. Another about-face. No more stages. No more chronic Lyme disease. The rheumatologists now decide that persistent Lyme disease belongs in one of several syndromes which include those of chronic fatigue, chronic pain, or post-Lyme. When, in order to reassure the patient, they "contradict a previous diagnosis of Lyme disease by another doctor," they may also substitute hypochondria, fibromyalgia, or pseudo-Lyme. The patient may or may not be comforted by other alternates that Lyme mimics. These include dozens of diseases that have already shattered the quality of life for those dismissed by ignorant or misinformed physicians.

  1997. Hope for the future? The National Institutes of Health awards $4 million to Tufts University for a study of chronic Lyme disease. Enrollment is proceeding, haltingly.

  1999. Yale University and Smith Kline Beecham hustle a Lyme disease vaccine onto the market that is plagued by growing controversy. In the opinion of many scientists--including the chief investigator who won't take it himself--the vaccine may trigger the disease in one of its guises that include several other autoimmune diseases.

  Given the above historical background, many physicians and patients never hear these truths:

  (1) The federal government offers no guidelines for diagnosis or treatment, but admits that there are possibly more than two million cases of Lyme disease in the U.S.A., that only one- tenth to one-twentieth of actual cases are reported.

  (2) Serological tests may not detect up to 60 percent of positive cases of Lyme disease. Inexperienced labs, working with unrealistic standards set by the government's restrictive epidemiological definition, may fail to find Lyme bacteria hidden or camouflaged by the protein chaff that foils antibody and antibiotic alike. No current tests can prove that these Lyme disease spirochetes have been killed. Antibiotics may have cleared infection from the blood, but the germs may remain in sanctuary in other cells.

  (3) In some areas, specifically on Eastern Long Island, at least 80 percent of deer ticks harbor Lyme disease spirochetes.

  (4) More than 60 percent of infected humans never notice a bite or exhibit a rash.

  (5) Serological tests for Lyme disease can only indicate antibodies. Dr. Kenneth Liegner reminds us that "Most symptomatic patients will have no antibody during the first 1-2 weeks after the tick bite," and that their detection may take weeks, months, even years.

  (6) Untold numbers of city dwellers, weekenders, day-trippers and vacationers return home from endemic areas with flu-like symptoms that they and their physicians may never connect with Lyme disease.

  (7) Thousands trust in religion, or treat themselves with home- style remedies or quack treatments, leaving the Lyme bacteria in permanent residence in their bodies.

  (8) Many scientist-authors in medical journals, for whatever reason, play down Lyme disease. In their competition for peer review, and in their rush to alleviate the fear of Lyme disease, they may confound the public. The media translate the medical jargon, and spoon it out as their own "feel good" pap.

  (9) Not only the academies, but thousands of doctors' offices, clinics, hospitals, medical cooperatives, government agencies, and insurance companies receive, and pass on, disinformation from the camp that claims Lyme disease is overdiagnosed and curable.

  (10) Most insurance companies deny claims for treatment beyond the few weeks in which Lyme disease "should be cured" and admit that with Lyme disease patients they could be "on the hook forever." With AIDS patients, "We know they'll die." Some health insurance companies pay fees to university scientists for testimony and opinion.

  (11) Many doctors are threatened by colleagues for diagnosing and treating Lyme disease. Several have been accused of profiteering from unnecessary therapies. One physician's medical, bank, and insurance records were seized by local district attorneys and the FBI. All these physicians have faced revocation of their licenses.

  (12) As the disease progresses, Lyme patients show signs and symptoms of neurological and neuropsychiatric disorders ranging from loss of short-term memory, irritability, mood swings, anxiety and panic attacks, obsessive-compulsive behavior and attention deficit disorder, to other dementias including Alzheimer's. Clinical depression may affect Lyme sufferers at any stage, and ruin the lives of the majority of those with chronic Lyme disease. In the general population, the lifetime rate of attempted suicide is 18 percent for depressives and 24 percent for manic-depressives. These figures are taken from the Director of the Institute of Mental Health's paper read at Yale on November 16, 1989. The numbers that succeed in killing themselves, God help us, have been extrapolated by others as between two and one-half and five million.

• Major symptoms

  At the time of my diagnosis in February, 1996 (from the Lyme disease clinical symptoms checklist)

  Unexplained fevers, sweats, chills, or flushing, fatigue, tiredness, poor stamina, sore throat, sexual dysfunction or loss of libido, upset stomach, change in bowel function- (constipation, diarrhea [I had both with no rhyme or reason]), chest pain or rib soreness, shortness of breath, cough, joint pain, stiffness of the joints, neck, and back, muscle pain and cramps, twitching of the face and other muscles, headache, neck creaks and cracks, neck stiffness, neck pain, tingling, numbness, burning or stabbing sensations, shooting pains, eyes/vision: double, blurry, increased floaters, light sensitivity, ears/hearing: buzzing, ringing, ear pain, sound sensitivity, increased motion sickness, vertigo, poor balance, lightheadedness, wooziness, confusion, difficulty in thinking, difficulty with concentration, reading, forgetfulness, poor short term memory, disorientation: getting lost, going to wrong places, difficulty with speech or writing, mood swings, irritability, depression, disturbed sleep-too much, too little, early awakening².

• Current symptoms, if any

The Social Security Administration currently considers me 100% disabled, with the following diagnosis:

I must use a cane at all times for stability. I have also had 100% of my natural teeth extracted to remove a source of co-infection.

• Whether Lyme Disease affected your ability to work or quality of life, and if so, to what degree and at what cost

  It my opinion, Lyme disease has cost me three careers:

  1. United States Marine – I was discharged from the Marine Corps because of my chronic deep vein thrombophlebitis. Only recently has research shown that there is a high correlation between Lyme disease, protein C clotting disorder and chronic DVT. I had fourteen years in the aviation electronics field, but the National Security Act of 1947 required that as a United States Marine that I be able to perform as a Marine rifleman. This I couldn’t do with chronic DVT.

  2. Systems Analyst – I became disabled during my last employment when the cognitive dysfunction and interpersonal relationship disorders associated with CNS Lyme precluded active employment. I couldn’t track multiple assignments, remember deadlines, nor handle large groups.

  3. DJ/MC/KJ – My passion/avocation. It had grown into a rather large side-line business, with a substantial following. The dysphonia (altered voice) and recurrent laryngeal nerve paralysis took away the tools of the trade. Not being able to stand throughout the show, remember the names of the song, the people, or where I was also had a lot to do with it.

     Even though I purchased a long-term disability policy, in monetary terms, my income has dropped 70%. However, my medical costs have increased, so the net monetary effect has brought me to drawing on my savings each month. My quality of life is also on the negative side.

• Length and kind of treatment

  In terms of the treatment my physician has given, it has been nothing but the best; he has been treating me out of his pocket over the last four years. In terms of my insurance, it is nothing but criminal (see horror story URL at https://www.angelfire.com/biz/romarkaraoke/james.html)

• Whether a cure was effected

  I am definitely not cured. Since diagnosis, I have progressively gotten worse. I must definitely say this is not the fault of my physician, who I consider an angel. The stumbling block to returning me to a functional state of life are my former employer (Metromedia Restaurant Group), First Health Strategies (Third Party Administrator), and the United States Congress and Senate through their failure to modify ERISA.

• Any difficulties you had in obtaining coverage from your insurance company

  The Texas Legislature took a bold step in allowing HMOs to be help accountable in State Courts. The predicted avalanche of law-suits did not happen, because most HMOs cleaned up their act on their own. A major HMO even closed down their automatic denial unit because they "discovered" it was costing them too much money.

  The major impediment to my treatment, as many other Texan’s are finding out, cannot be addressed by the Texas Legislature directly. They cannot address ERISA denials.

  Currently, there are approximately 148 million Americans, including approximately 9.6 million Texans, whose medical care is paid for through ERISA-covered plans sponsored by employers. In the opinion of many, especially by those such as myself that have been victimized by it, ERISA is the scam of the century³.

  Through creative usage of "not medically necessary" denials and other ploys, knowing that the patient does not have the resources to take their employer to Federal Court (the only recourse open through ERISA), the unscrupulous administrator is causing needless disabilities, and transferring the expense to the public treasuries. Attorneys will not take these cases on because there is no monetary award for damages.

  One possible recourse open to the Texas Legislature, used in other states, is the establishment of a minimal standard of care for Lyme disease. The United States has ratified the United Nations declaration on Human Rights and Scientific and Technological Developments. It is a Human Rights Offense to be denied treatment when there is not a cure for a disease, if the treatment relieves the symptoms, or brings comfort to the sufferor. Since the United States Government refuses to close the loophole which unscrupulous administrators hide behind when denying treatment, Texas can stand up by putting teeth into Human Rights Violations.

• Anything else you think will help the committee in its mission

  What I see as the two biggest parts of the mission for the committee, as well as the barriers, are:

1. (Overcoming) Physician ignorance

These are actual quotes:

• "We don’t have Lyme disease around here." Multiple Missouri, Arkansas, Texas, Illinois, and Michigan physicians.

  The CDC considers a county in which Lyme disease as endemic as one in which at least two definite cases have been previously acquired or in which a known tick vector has been shown to be infected with B. burgdorferi. Unless the county has a capture/test program for B. burgdorferi, or at least two definite cases have been previously acquired, the county cannot be considered endemic, but it does not preclude it "being around here."

• "I don’t believe in Lyme disease, although by the CDC reporting standards, this is the most positive case of Lyme I’ve ever seen." A Ft. Worth infectious disease consultant talking to me about my case.

  Clinical case definition

  Erythema migrans, or

  At least one late manifestation, as defined below, and laboratory confirmation of infection.

  Laboratory criteria for diagnosis

  Isolation of Borrelia burgdorferi from clinical specimen, or

  Demonstration of diagnostic levels of IgM and IgG antibodies to the spirochete in serum or CSF, or

  Significant change in IgM or IgG antibody response to B. burgdorferi in paired acute- and convalescent-phase serum samples.

  Note – Lyme disease is a clinical diagnosis, with lab work/testing used as supportive evidence only – CDC surveillance reporting uses a CASE definition.

• "I’m not going to run a test for Lyme. Your daughter isn’t old enough." Michigan infectious disease specialist

  There are no age restrictions for acquiring the disease. The attachment of an infected tick can transfer the bacteria.

• "You can’t have Lyme, your blood tests came back negative."

  The CDC surveillance criteria were devised to track a narrow band of cases for epidemiologic change and were never set up to be used as diagnostic criteria nor were they meant to define the entire scope of Lyme disease. This is stated in the 3/25/91 NIH report.

• As recently as February 28, 2000, Dr. Raymond Dattwyler (declaired an LD "expert" in publications and court testimony) has stated "There are three spirochetes that cause Lyme disease in Europe, only one of which exists here in North America," says Dattwyler. "That's why you can't directly correlate this European research to North America.", while the International Lyme and Associated Disease Society declares "There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to Borrelia burgdorferi's antigenic variability and its various antibiotic resistances." One value may be too high, the other is decidedly too low, and probably deliberately narrow. One takes a decidedly parochial view, the other a more intercontinental flavor, however; ticks do not know geographic boundaries. A patient's county of residence does not accurately reflect their total Lyme disease risk, since people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure for each individual.

• "Two to four weeks of antibiotic will cure Lyme disease."

  There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating histologically and in culture that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.

  Conversely, see Long-Term or Repeated Antibiotic Therapy for Lyme Disease, An Annotated Bibliography at http://www.geocities.com/HotSprings/Oasis/6455/therapy-special.html

  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.

2. (Overcoming) Vested interests

Until the several States, in a concerted, united effort, get their US Senators and Representitives to overturn the pre-emption clause of ERISA that precludes redress in State Courts for wrongful denial of medical care, there is little we can do.

At the Federal level, the economic clout of lobbiests and trade groups will attempt to keep the status quo. There can be no class action suits to allow the approximately 148 million Americans, including approximately 9.6 million Texans, voices to the halls of Congress to say "stop the scam."


 

Thank you,

R. James Martin	Phone: 817.540.2272
501 Sycamore Lane, #327	e-mail: rjamesmartin@yahoo.com
Euless, Texas 76039	Homepage: https://www.angelfire.com/biz/romarkaraoke.james.html James Martin’s Lyme Disease Horror Story How Lyme Disease and Exploitation of ERISA Laws Can Destroy A Life

References:

1. Richard S. Buller, Max Arens, S. Paul Hmiel, Christopher D. Paddock, John W. Sumner, Yasuko Rikihisa, Ahmet Unver, Monique Gaudreault-Keener, Farrin A. Manian, Allison M. Liddell, Nathan Schmulewitz, Gregory A. Storch; Ehrlichia ewingii, a Newly Recognized Agent of Human Ehrlichiosis; The New England Journal of Medicine -- July 15, 1999 -- Vol. 341, No. 3

2. Bleiweiss, J.D. When to Suspect Lyme – essay 1984

3. McKuin, Michael A. ERISA, What Is It 1997