World Renowned Lyme Disease Doctor Joseph James Burrascano, Jr. Retires, Research Begins

by Susan Williams

Public Health Alert Staff

A major chapter in the history of Lyme disease will draw to a close this November with the retirement of Dr. Joseph James Burrascano, Jr., a pioneer in the diagnosis and treatment of chronic tick-borne infections.

"Dr. B", as his patients affectionately refer him to, has practiced medicine in East Hampton, New York, for over twenty-five years, and has treated thousands of Lyme patients from all over the world. Considered one of the world's leading experts on Lyme and associated tick-borne diseases, he is the author of one of the most well-known and widely-followed treatment protocols in the U.S. today.

Dr. Burrascano received the Distinguished Physician Award in 1998. A founding member of the International Lyme and Associated Diseases Society (ILADS), he continues to serve on its board as First Vice President. He also serves on the Medical Advisory Board for the non-profit "Turn The Corner Foundation" (http://www.turnthecorner.org), which is dedicated to the support of research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases. He has lectured on Lyme both nationally and internationally, and has even addressed Congressional committees and the military on the complexities of Lyme disease. He is published in numerous medical journals and magazines, and has been interviewed frequently for several major television networks and print media.

Yet, in Dr. Burrascano's eyes, his many outstanding achievements have not filled a large need that still exists. He explained, "I have become more and more frustrated of late, because I have had to turn away up to ten prospective patients a day - clearly, more Lyme-literate physicians are desperately needed. I feel that my experience with the management of patients with tick-borne illnesses would be better served by my spending more of my time on physician education and on completing my current, very important, research project. I want, once and for all, for the ILADS point of view to be the recognized standard for all professionals. I also wish to remain active in the political realm, as political reform and a more realistic view of our illnesses have to be addressed at the government and public levels."

His success has not come without much opposition and trial. Dr. Burrascano has a great deal of experience in the political and governmental arenas, due to his own legal battles for the right to treat chronic tick-borne illnesses with long-term medical treatments.

There are many who believe that the legal attacks on Dr. Burrascano were begun in retaliation for his public comments against the Department of Health and Human Services' (DHHS) agencies. "The reasons behind the charges against me are likely a result of my willingness to expose the true status of Lyme research," Dr. Burrascano observed. "Shortly after publicly airing my grievances, I received notice that I was being investigated for medical negligence."

Those grievances were aired at a 1993 Senate committee hearing on Lyme research. Dr. Burrascano boldly testified of "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.

Only two months after his courageous testimony, the New York State Department of Health's Office of Professional Medical Conduct (OPMC) notified Dr. Burrascano that he was being investigated for an "anonymous" complaint that had been filed against him.

In 2000, the OPMC charged Dr. Burrascano with allegations of medical misconduct stemming from the use of long-term antibiotic therapy. The OPMC had previously investigated numerous other Lyme physicians, often resulting in fines and having the physicians' medical licenses restricted, suspended, or revoked.

The unjustified OPMC procedures were based on erroneous claims that a mere few weeks of antibiotics were sufficient to effectively cure all cases of Lyme disease, in spite of contradictions by numerous research studies. Many of these attacks on Lyme physicians appear to have been initiated by health insurance companies who want to avoid paying the expenses of long-term medical treatment in spite of its appropriateness.

The Lyme community quickly responded to the charges against Dr. Burrascano by planning a rally at New York City's Plaza Hotel and hosting letterwriting campaigns, visits to legislators and contact with media. Hundreds of patients from across the country rallied to Dr. Burrascano's side to show their support and called on legislators to hold public hearings to investigate multi-state harassment of Lyme doctors.

Physicians from all over the nation, as well as Switzerland and Germany, signed a petition in support of Dr. Burrascano that was presented to state officials. These fellow physicians referred to Dr. Burrascano as "an international leader in establishing comprehensive medical and ethical standards for the diagnosis and treatment of chronic illnesses."

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.

Dr. Burrascano noted, "Both the Appeals Board and the Hearing Committee favored me and had no problems with my methods in managing Lyme disease. They succinctly stated that it is not the role of the OPMC to pass judgment on what is a scientific debate in the medical community, and how I treat Lyme is not a matter of professional misconduct or competency... They posed no restrictions on my practice, no restrictions on how I manage my cases and, in their written decision, the Committee was quite complimentary."

"I definitely would not have gotten through this if it was not for all the support I received," he continued. "I realize quite clearly that this case represented far more than just me - it represented the truth of Lyme, uncovered the dirty tricks that have been played against Lyme patients and LLMD's (Lymeliterate medical doctors), and helped to focus all of us and propel us into a great, gigantic push for our rights. The bigger good has been all the positive activity that my case has generated - politically, in the media, and most importantly - we are now a force to reckon with. Truly, we have not gone away, and we never will go away."

"All of us have to really raise the bar now on our reform activities because, until State Medical Boards are revamped, all of this can and will happen again, and anyone, including me, can still be harassed.

We must stay focused, remain a single-minded unified force, and move ahead with our efforts to get our knowledge of the truth of Lyme disease to ALL health practitioners so Lyme will be better recognized and treated.

Most of all, we cannot let the creeps keep any of us from getting the treatment we need to prevent worsening disability." Dr. Burrascano assured, "My decision comes at a good time for me personally. I feel well, my prostate cancer seems to be in a remission, and I have not had any bad news from the state Medical Board lately. In other words, this decision has not resulted from any secret problem that I am trying to hide. Of course, rumors will fly, but I say sincerely to all of you that there is no hidden agenda."

Although the news of his retirement has deeply saddened many of his patients and colleagues, there is a tremendous amount of support for Dr. Burrascano in his future endeavors.

"It is the revolutionary work of people like Dr. B which stops me in my tracks. I stand in awe for the compassion he has, the courage he shows for needy people looking for shelter in the rain, and his incredible contributions to science... He deserves more than the support and praise we give him. He deserves for history to record him as one of the great scientists of the late 20th and early 21st centuries," asserted Geoff Wiggins, a Lyme patient in North Carolina.

Sandy Berenbaum, LCSW, is a Lyme-literate psychotherapist in New York who learned about Lyme the hard way. "I went undiagnosed from 1984 to 1990, with severe migraines and psych symptoms. I went to at least 5 doctors, including the heads of two NYC headache centers.

After being diagnosed in 1990 in Poughkeepsie, I was referred to Dr. B by a doctor friend who was a new patient of his. Dr. Burrascano treated me for the next four years and my Lyme eventually resolved. His care, compassion, upbeat nature, and hopefulness, were a part of his brilliant diagnosis and treatment."

"One year after he first saw me, I 'diagnosed' my first kid with Lyme. He was a 15 year old who was experiencing psychotic symptoms who came to me for counseling. I recognized Lyme in this young man, and his parents allowed me to point them toward a 'second opinion' when their family doc said it wasn't Lyme. That started my venture into the world of Lyme disease as a professional," Berenbaum recalls. "My point, aside from my love, respect and appreciation for Dr. B, is that his gift to me of restored health led to my gift of my services and expertise to the Lyme community. Each patient that Dr. B (and our other Lyme doctors) treats successfully leads to more good, in and out of the Lyme community. Each patient who is turned away by the ignorant Lymedenying doctors is another patient, and sometimes whole family, that becomes a burden to society."

Jeannine Phillips, a Lyme patient in New Jersey, declared, "We, as a community, have been blessed by the courage and focused determination that Dr. B. has always displayed with respect to tick-borne diseases and the patients who suffer from them. We can all trust that the same gentleman who has stood up for Lyme patients all these years, and under the most difficult of circumstances, can continue to do this, but in a more elevated manner and in a manner which, in his wisdom, he thinks is best. This news is good news for us all, and we can trust, respect, and support his decision."

Phillips, like so many of Dr. Burrascano's patients, is searching for a way to express heartfelt thanks to a man who has done so much. "What would be the equivalent of a coast-to-coast standing ovation?" she wondered. "Perhaps a thank-you donation to the nonprofit group that supports his work, the 'Turn The Corner' foundation. This is what I am going to do, anyway. I hope to hold a garage sale with other patients in my support group, and the proceeds of the sale will be designated to specifically fund Dr. B's research. I think this would be a fitting tribute to his work over the years on behalf of ALL Lyme disease patients, not just his own. This would be just a small thank you for a big effort on his part all these years."

Thus, while one chapter in the history of Lyme disease draws to a close, a new and perhaps even more exciting chapter is just beginning. "I am grateful to all those who have stood behind me over the years, and I will always be thinking of you - that is the point behind my decision," Dr. Burrascano concluded. "I hope that my future efforts on the behalf of the Lyme community will continue to be as fruitful and personally rewarding as they already have been." .