NOTE: Doctors who have specialized in treating Lyme disease patients, as opposed to studying Lyme disease in the laboratory, are in general the ones who have developed treatments not sanctioned by the medical establishment. These doctors have received for their efforts a lot of grief. Dr. Joseph Burrascano, a leader in developing appropriate treatment for late-stage Lyme disease, was investigated, prosecuted and hassled for years by the New York State Office of Professional Medical Conduct, beginning shortly after he testified to a Congressional hearing on Lyme disease in 1993 that the then-current protocols were based on biased research. He was eventually acquitted but not before he had been forced to pay thousands of dollars in legal fees and submit to humiliating monitoring by the state.
The following excerpted letter was written in support of Dr. Burrascano. It is included here because it describes so clearly the statistical biases included in establishment incidence research. It was written by Prof. Doris Aaronson, PhD of the Departments of Psychology, Neural Science and Linguistics, New York University and dated January 17, 2000. Dr. Aaronson’s research has focused on psychological and neural factors in dyslexia, language acquisition, and verbal memory.
It has come to my attention that one of the most nationally distinguished Lyme disease doctors and researchers, Dr. Joseph Burrascano of Long Island, NY, needs the help of Lyme patients, their family and friends. I have some comments on his situation based on my experiences as a chronic Lyme patient, as one who is knowledgeable of the medical research on Lyme, and as an NYU professor who has taught research methods and statistics to graduate and undergraduate students for over 30 years, including those headed for careers in medicine.
Dr. Burrascano is about to be prosecuted for medical misconduct by the NY State Office of Professional Medical Conduct. OPMC has already investigated 17 other physicians who treat Lyme patients. The statistical odds are that doctors prosecuted by OPMC for providing long-term antibiotic treatment for chronic Lyme patients will have their medical licenses revoked, suspended or restricted (to not treating Lyme patients); they will be fined, and defense costs will run about $100,000.
The OPMC procedures are highly biased from the start. In a letter to a Lyme disease patient in explaining the procedures used by the NY OPMC, Dr. Marks, Executive Secretary of the OPMC wrote “Rarely, if ever, have the published guidelines indicated that anything more that (sic) tow (sic) – three weeks of antibiotics are required to cure Lyme disease.” However, Dr. Marks’ statement is contradicted by numerous research articles in peer-reviewed biomedical journals, indicating (a) that many Lyme patients are not cured by 2-3 weeks of antibiotics, (b) that some of those are cured after months or years of antibiotic treatment, and (c) some are never cured. The National Institutes of Health is currently funding research on category (b) and (c) patients.
Biomedical research has already documented some of the ways that Lyme bacteria can resist the effects of antibiotics. It appears from Dr. Marks’ statement that OPMC has set up procedures which DEFINE medical misconduct to target physicians who use long-term antibiotic therapy. This would obviously deprive thousands of Lyme patients of experienced physicians like Dr. Burrascano. There are two important causal factors in this attack on such physicians. (1) It appears that many of these attacks are inspired by medical insurance companies which do not want to pay for long-term antibiotic therapy, especially costly I.V. therapy. (2) Some of the Lyme researchers who are involved in defining the standards for diagnosis and treatment of Lyme used by the State and Federal Governments are ego-involved in the “theory” stated by Dr. Marks, and further, they use flawed research procedures to support their theory.
The flaw in much of their research is that they have very restrictive criteria for the category of patients that can be used in their research. Then they inappropriately generalize their research results to all Lyme patients including many who do not meet the restrictive criteria. Every text book in either introductory statistics or research methods warns that false conclusions can be made based on inappropriate generalization from a research sample population to other populations with attributes that differ from the research sample. These researchers use as participants only patients with recent, short-duration Lyme disease for which short-term therapy generally works. They do not use patients with long-term chronic Lyme, for which long-term and aggressive antibiotic therapy is required. One can observe the flawed logic by reading some of the publications of the Lyme researchers who support Dr. Marks’ theory, and by discussions with knowledgeable physicians who are familiar with the Lyme research.
In my own case, I had a wide variety of clinical of Lyme for well over 15 years, and had misdiagnoses on 22 occasions by doctors who regularly under-diagnose Lyme. After I diagnosed myself, had that diagnosis verified by 6 consecutive positive blood tests taken by a NJ doctor who regularly under-diagnoses and under-treats Lyme and was treated by inappropriate and ineffective oral antibiotics. I decided to seek another doctor. I was referred to a team of distinguished NY doctors involved in the group represented by Dr. Marks’ views. But they refused to take me as a patient BECAUSE I did not meet any of their research criteria of (a) having a known tick bite, (b) within 2 months or less of starting antibiotic treatment, and (c) experiencing a “bull’s-eye” rash. Separate from their research, those doctors would not provide clinical treatment in cases where short-term therapy might not work.
Fortunately, I found a doctor who had read Dr. Burrascano’s research and followed his treatment philosophy. After a few more tests to eliminate alternative diagnoses, I was put on close to 2 months of daily double-doses of I.V. antibiotics, followed by years of oral antibiotics. The result is that I can continue to teach and do research. Without aggressive long-term antibiotic therapy, which would likely be defined as medical misconduct by people with Dr. Marks’ views, I would have cost an insurance company, my employer and/or the government a substantial amount of money for permanent medical disability benefits, as opposed to only 9 months of disability.
If Dr. Burrascano is convicted and punished by NY OPMC, not only will his patients suffer, but thousands of others, like myself, whose doctors learn from Burrascano’s publications, will suffer. A “political witch hunt” is going on in NY State, and it threatens many ethical and experienced doctors who treat long-term Lyme patients.