Lyme disease.

Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue.

"many serious improprieties" among NIH and CDC Lyme disease grant recipients, including funding that was being redirected to rheumatologic and arthritic problems rather than Lyme. Additionally, some of those grant recipients had serious conflicts of interest because they worked as paid medical consultants for insurance companies. Burrascano also implicated a major group of university-based researchers in working with government agencies to inappropriately influence the agendas of Lyme disease meetings.

The original decision handed down by the hearing panel in November of 2001 not only exonerated Dr. Burrascano from the charges, but also criticized the OPMC for attempting to prosecute a medical debate rather than actual medical misconduct. An excerpt from their decision remarked, "The Hearing Committee recognizes the existence of the current debate within the medical community over issues concerning management of patients with recurrent or long term Lyme disease. This appears to be a highly polarized and politicized conflict, as was demonstrated to this committee by expert testimony from both sides, each supported by numerous medical journal articles, and each emphatic that the opposite position was clearly incorrect. What clearly did emerge however, was that the Respondent's approach, while certainly a minority viewpoint, is one that is shared by many other physicians. We recognize that the practice of medicine may not always be an exact science, 'issued guidelines' are not regulatory, and patient care is frequently individualized."


The OPMC attempted to file an appeal and, in April of 2002, that appeal was refused by the Administrative Review Board who agreed with all of the findings of the original hearing panel.

Physicians who have cared for persons with chronic Lyme disease have faced harassment at a minimum and for some, their careers have been ruined. Researchers who have seriously dedicated themselves to the scientific study of chronic Lyme disease in humans and/or animals have often found themselves attacked or marginalized. To persist in their researches would have resulted in virtual career suicide and some have been forced, by exigencies of survival, to leave the field. Laboratories that test extensively for Lyme disease, including use of direct detection methods such as PCR, have found themselves subjected to concerted smear campaigns and harassed. Whereas PCR is a well-accepted method in virtually all other infectious diseases, its clinical use for Lyme disease has also been marginalized. Direct detection methods developed more than a decade ago by some of this country’s finest physician-researchers and biomedical research scientists (Dorward DW, Schwan TG, Garon CF. Immmune Capture and Detection of Borrelia burgdorferi Antigens in Urine, Blood, or Tissues from Infected Ticks, Mice, Dogs, and Humans. J Clin Microbiol 1991;29:1162-1170 & Coyle PK, Deng Z, Schutzer SE, Belman AL, Benach J, Krupp L, Luft B. Detection of Borrelia burgdorferi antigens in cerebrospinal fluid. Neurology 1993;43:1093-1097 & Coyle PK, Schutzer SE, Deng Z, Krupp LB, Belman AL, Benach JL, Luft BJ. Detection of Borrelia burgdorferi-specific antigen in antibody-negative cerebrospinal fluid in neurologic Lyme disease. Neurology 1995;45:2010-5) have been moth-balled, I believe, for political and medical socioeconomic reasons.

Seronegativity, a well-recognized feature of spirochetal disease (e.g. in syphilis) is held to not need consideration despite early recognition of this phenomenon in Lyme disease, ironically, by a signer of the 2000 and 2006 IDSA Lyme disease guidelines (Dattwyler RJ, Volkman DJ, Luft BJ, Halperin JJ, Thomas J, Golightly MG. Seronegative Lyme Disease. Dissociation of T- and B-Lymphocyte Responses to Borrelia burgdorferi. N Engl. J Med 1988;319:1441-6).

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State legislators have begun taking matters into their own hands and the states of Rhode Island, Connecticut, California, New York, Massachusetts and Minnesota have passed laws or promulgated policies protecting physicians who treat persons with chronic Lyme disease. Are these legislators stupid? Are they dupes of Lyme activists? Or can they see what is so obvious to the patients and to any good clinician, that Lyme disease can be a chronic infection that often requires a long-term treatment approach? Furthermore, as the disease spreads and more and more individuals are affected, legislator’s staffers, their wives, their children and they themselves are experiencing the effects of chronic Lyme disease.

Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue.

Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.

Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for "probable Lyme Disease", will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.

Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue.

The controversy that exists within the medical community about Lyme disease is over what constitutes a proper diagnosis of Lyme disease and if the infection persist even after treatment. Lois Anderson of Virginia, Minnesota, explains, "After I was treated in the hospital for Lyme disease with intraveneous Rocephin, I was told by my neurologist that, despite lingering symptoms, there was no possibility I could still have Lyme disease. Three months later, all of my symptoms had returned. then I was told I needed to see a psychiatrist! Anderson continues, "After I was treated that first time for Lyme disease, it was extremely difficult to ge a doctor interested in my recurring symptoms. You know, insurance companies rarely complain about reimbursing your first treatment, but just dare to have a relapse and see how you're treated!"

Armed with dozens of reprints from medical journals, Sandy Karppinen of the Cloquet (Minnesota) Lyme Disease Support group explained, "It isn't uncommon for Lyme patients whose symptoms don't resolve quickly to be referred to a psychiatrist. Insupport group, we frequently encounter patients who are sent to psychiatrists." (90-93). Doctors who refuse to treat you with antibiotics beyond a few weeks argue that you don't have a persistent or active infection, but rather that you have some unknown lingering immune dysfunction. That argument is pretty weak when you see the patients improve when they are on antibiotics and worsen when therapy is withdrawn."

According to Sharon Smith, president of the national patient advocacy group, Lyme Alliance, Inc., "Most media stories focus on prevention and symptoms, but the story that few people ever hear about is the controversy concerning the medical community's general lack of accepting the concept that active Lyme disease can persist even after treatment." Smith concludes, "The real problem for Lyme patients isn't getting diagnosed or treated the first time. It's where do you go when the symptoms return and doctors refuse to continue treatment. Most people have no idea about the politics and controversies of Lyme disease until a family member has experienced a relapse. When the disease hits them the second time and they're left without access to therapy, that's when most patients seek out information on their own and find out that Lyme disease is alot more than they bargained for."

Dr. Phillip Baker, Ph.D. has recently been named as Executive Director of the ALDF by a unanimous vote of the Board of Directors. "We are thrilled to have Dr. Baker bring his vast expertise and leadership to our organization," says Jeffery Black, acting Chair. Dr. Baker has more than 30 years experience as a research scientist for the National Institutes of Health and 10 years as the Program Officer for the Lyme disease research grants awarded to academic and medical research institutions by NIH. Dr. Baker is truly a scientific expert and knowledgeable of the facts about Lyme disease.

"At a time when misinformation is rampant, I am proud to continue to serve the interest of public health by heading the American Lyme Disease Foundation," states Dr. Baker. In his first official role as Executive Director, Dr. Baker has published a paper in the July issue of The American Journal of Medicine, rebutting the unsubstantiated claims of "chronic Lyme" among a small but vocal group of activists who challenge the results of mainstream medical research.

How a speck changed my life forever

Like many chronic Lyme disease patients, I was launched into a medical maze, searching for answers as things worsened. I told my husband that something in m body had broken. It was falling apart. I went to specialist after specialist, and each one found some possible cause within his or her specialty. The weirdest symptom was plunging blood sugar, going down to the 20s and 30s, before bouncing back up to normal. That so alarmed my doctors they hospitalized me. An MRI revealed 14 lesions in my frontal and parietal lobes, but my doctors felt that was normal for a person my age; I was 49 at the time.


Now I had hallucinations, what I later learned from a neurologist were simple partial seizures. I saw people walking into the room, two girls jumping rope, numbers spinning on a lit-up odometer, a fat poodle hanging from the ceiling. They disappeared after a minute or so. After the first hallucination, I did not take the others for anything but a weird brain quirk. Most were fairly entertaining. The ones with sudden putrid rat smells were not. But then there were other, more serious seizures, complex partials with an absence of consciousness. My husband said I acted at times as if I were in a trance, eyes wide open as if scared and unresponsive to people around me. I had no memory whatsoever of those episodes, and in fact, at times, my memory of things that happened just before and just after the seizure had been erased.


Let me hasten to add that not all chronic Lyme patients test positive on the Western Blot, at least not at the levels set by doctors who follow CDC surveillance criteria as diagnostic. There is much more to be done before the tests can be considered reliable in every lab across the country. Unfortunately, most doctors still go by the old and unreliable standard: that Lyme is rare and exists only on the East Coast, that a bull’s eye rash and fever must be present, that you are tested first with an ELISA, which is considered a false positive if you had no bull’s eye. If you did have the bull’s eye, you must then get a positive Western Blot. That will get you about two weeks of antibiotics. Further insurance coverage of treatment and medications is denied. That is the standard recipe that has destroyed many lives.


I must now take seizure medication for life, as well as medication to keep me awake. Those cost about $2000 a month, most of which is covered by insurance. Insurance will not cover my antibiotics, which I still take. When I've gone off antibiotics, the problems come marching back, one by one, the flu-like symptoms, the headaches, the arthritis. I think about four and a half years of lost time, of pain and panic. I think about our health care crisis. I think how a Lyme-literate physician and about $50 worth of antibiotics early on would have taken care of my disease. None of those other tests--the multiple MRIs, the CAT scans, the 5 hour surgery, the 10 specialists, the lifetime of meds, the required yearly visits to my neurologist--none of those costs would have been necessary. Because of ignorance, I am a burden on the medical care system.