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THE ATTACK ON DR. BURRASCANO
A Report from the Philadelphia Teach - Out

THE ATTACK ON DR. JOSEPH BURRASCANO

Please email a copy of your letter to:

Lymeletters@excite.com

I (Monica Miller) have updated the FAIM website with all the new developments in the Burrascano case. Please use this site to participate in the new letter writing campaign, and please join FAIM to support our efforts on the behalf of Lyme patients.

http://www.faim.org/lyme.htm

Additionally, We now have a legal defense fund set up for the good doctor. Unfortunately, your contribution is not tax deductable but it will be very good karma to run over OPMC dogma:

Burrascano Legal Defense Fund
BLDF c/o Monica Miller
PO Box 410
Kinderhook, NY 12106

Personal thank-yous are being sent to those who have given thus far.

Bless you all, Monica Miller

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A SAMPLE LETTER FOLLOWS:

Governor George Pataki
State Capitol Albany, NY 12224
GOV.PATAKI@CHAMBER.STATE.NY.US

Hi Governor Pataki,

I sent you a copy of the following letter on 9-27-00. Since then, I've been told that someone is intercepting email dealing with Lyme disease before it reaches you; so I'm sending it to you again.

I regard the Lyme epidemic which is sweeping across the country like wildfire as one of our most pressing POLITICAL issues. How many more people are there like me walking around like time bombs with no symptoms and (unlike me) with no knowledge that they have the disease?

If the U. S. can spend hundreds of millions on the search for neutrinos, which probably do not exist, then certainly some expenditures should be made to find a cure for Lyme disease so that I and others do not have to spend the rest of our lives taking antibiotics.

As for now, antibiotics are the only means that we have to keep the disease in check and prevent it from incapacitating us. For me, this is the most important POLITICAL issue on which political leaders will have to take a stand.

My previous email follows:

9-27-00

It seems that there is a struggle going on with insurance companies and their academic consultants on one side and, on the other side, doctors on the front line who are successfully treating Lyme disease patients. I have come down solidly on the side of the frontline doctors because they have rescued two of my loved ones from a miserable existence of incapacity and neurological torture.

Beyond my personal problems, there is an urgent situation in New York State which affects the health of thousands of Lyme disease patients in New York and throughout the country.

Dr. Joseph Burrascano, one of the most highly regarded physicians in the treatment of Lyme disease, has recently been brought up on official charges of medical misconduct by the New York State Office of Professional Medical Conduct (OPMC).

The OPMC has claimed that the current investigations of Dr. Burrascano and several other Lyme specialists who follow similar protocols are not at all related to their treatment methods for Lyme disease. Yet at the same time, OPMC has publicly revealed their bias against Dr. Burrascano and his colleagues' longer term approach to the treatment of chronic Lyme disease.

In a letter written to Lyme disease patients dated 12/21/99, Ansel Marks, Exceutive Secretary of the OPMC, stated, "Rarely, if ever, have ... published guidelines indicated that anything more than two-three weeks of antibiotics are required to cure Lyme disease." This statement contradicts a significant pool of peer reviewed scientific literature demonstrating the persistence of Lyme disease infection in spite of treatment with three weeks or more of antibiotics.

I feel that the action of the OPMC against Dr. Burrascano and other physicians who have been willing to treat chronic Lyme disease constitutes a great threat to my health and to the health of my loved ones.

Your Name Here

PS: I have sent Dr. Burrascano's legal defense fund a check for $100, and I am going to send more. These are the most important political contributions I can make this year.

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MONICA MILLER WRITES:

PLEASE SEND YOUR LETTER TO THE FOLLOWING OFFICIALS:

Hon. Kemp Hannon Chairman
Senate Health Committee
Room 609 LOB
Albany, NY 12247
HANNON@SENATE.STATE.NY.US

Hon. Richard Gottfried
Chairman Assembly Health Committee
Room 822 LOB
Albany, NY 12248
GOTTFRR@ASSEMBLY.STATE.NY.US

Hon. Patricia Acampora
NYS Assembly
Room 725 LOB
Albany, NY 12248
ACAMPOP@ASSEMBLY.STATE.NY.US

Hon. Maureen O'Connell
NYS Assembly
Room 326 LOB
Albany, NY 12248
OCONNEM@ASSEMBLY.STATE.NY.US

Hon. Joseph Bruno
NYS Senate Majority Leader
Room 909 LOB
Albany, NY 12247
BRUNO@SENATE.STATE.NY.US

Hon. Joel Miller
NYS Assembly
Room 531 LOB
Albany, NY 12248
MILLERJ@ASSEMBLY.STATE.NY.US

Hon. Vincent Leibell
NYS Senate
Room 802 LOB
Albany, NY 12247
LEIBELL@SENATE.STATE.NY.US

Hon. Michael A.L. Balboni
NYS Senate
Room 803 LOB
Albany, NY 12247
BALBONI@SENATE.STATE.NY.US

Hon. Stephen Saland
NYS Senate
Room 946 LOB
Albany, NY 12247
SALAND@SENATE.STATE.NY.US

Hon. Fred W. Thiele, Jr.
NYS Assembly
Room 530 LOB
Albany, NY 12248
THIELEF@ASSEMBLY.STATE.NY.US

Hon. Congressman Michael Forbes
3680 Route 112
Coram, NY 11727
JACK.AMES@MAIL.HOUSE.GOV

Governor George Pataki
State Capital
Albany, NY 12224
GOV.PATAKI@CHAMBER.STATE.NY.US

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VERY IMPORTANT NEWS FROM Cheryl O.:

We are planning a major event to support Dr. Burrascano, and we urge Lyme disease patients from around the country to attend and bring friends and family members.

The event will take place in New York City in front of the Plaza Hotel (59h Sreet and 5th Avenue) on November 9th from 1:30 pm - 4 pm.

It is being planned by basically the group of Lyme disease patients who organized the protest against Steere at the Pierre on June 1st [2000].

The event is being conceptualized as not a protest per se, but rather as a press conference of Lyme disease patients to get word out to the public about Lyme disease and the harassment of Dr. B. and other LLMD's. As such it is in keeping with Dr. B's original request that we not protest the OPMC in New York City.

In order to ensure broad media coverage as much as is humanly possible, the event is scheduled to coincide with a major Lyme press event that FAIM is holding inside the Plaza hotel. We are not permitted to give out the details of this event now, but the most important thing about it is that it is already drawing a response from the media.

The presence of several hundred (thousand??) Lyme patients outside the hotel also giving interviews will really round out the picture and make this a powerful media event.

For now the contacts for further info will be Ellen ellenlu@webtv.net and Cheryl cheryl@aero-vision.com and others will be added later.

PLEASE COME AND BRING OTHERS. IF THERE WAS EVER A CRITICAL MOMENT IN OUR FIGHT FOR APPROPRIATE MEDICAL CARE, THIS IS IT.

Also, I keep the info on the letter writing campaign, as well as updates, at my website:

http://www.aero-vision.com/~cheryl/activism.html

Cheryl

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In addition to the demonstration and press conference being held outside the Plaza Hotel in Manhattan on Nov. 9th, 2000, to protest the treatment by the New York State Office of Professional Medical Conduct of doctors who treat Lyme disease, there is another protest (THE "TEACH-OUT") being held in PHILADELPHIA on NOVEMBER 1st, to counter Dr. Alan Steere who is giving a presentation as an "expert" on Lyme disease at the 64th Annual Scientific Meeting of the American College of Rheumatology.

THE "TEACH-OUT" WILL BE HELD FROM 11:30 A.M. TO 2:00 P.M. ON NOV. 1, 2000, sponsored by a Tri-State coalition of Lyme disease patients, with a press conference scheduled at 1:00 p.m.

You may remember that protests have been held in other cities (Seattle, Boston, NY) where Dr. Steere has spoken or been honored as an "expert" on Lyme disease.

Steere theorizes that Lyme disease is easily cured with a short course of antibiotics and that there is no such thing as relapses or chronic Lyme disease.

Steere has testified against doctors who treat longer than he says they should and has testified for insurance companies against doctors and patients.

Here is information posted on sci.med.diseases.lyme by the organizers of the Philadelphia protest:

The 64th Annual Scientific Meeting of the American College of Rheumatology (ACR) and the 35th Annual Scientific Meeting of the Association of Rheumatology Health Professionals (ARHP) will be held Sunday, October 29 through Thursday, November 2, 2000. Pre-meeting courses begin Saturday, October 28.

The meeting will be held at the Pennsylvania Convention Center in Philadelphia. This is the convention where Dr. Steere, a rheumatologist, is considered an "expert" on Lyme disease.

"Teach-out: Science Shows A Different Point of View on Lyme Disease" is a counterpoint to the educational seminar being presented inside by Allen Steere from 7:30 to 9:00 a.m. on Nov 1st and 2nd on diagnosis and treatment of Lyme disease in the "Meet the Expert" series.

You can get the info from the organizers at: http://x58.deja.com/[ST_rn=ps]/getdoc.xp?AN=682705098&CONTEXT=971869366.213844045&hitnum=5

THE "TEACH-OUT" WILL BE HELD FROM 11:30 A.M. TO 2:00 P.M. ON NOV. 1, 2000, sponsored by a Tri-State coalition of Lyme disease patients, with a press conference scheduled at 1:00 p.m.

Tri-state here means NY, NJ and CT. A map of the Philadelphia police 6th precinct general vicinity of the "teach-out" can be found at:

http://www.libertynet.org/ppd6th/profile.html

For those interested in staying over, the block of hotels being used (with map) can be found at:

http://www.rheumatology.org/education/philly/

We hope that the press will pick up the theme of our "Teach-out: Science Shows A Different Point of View on Lyme Disease" as a counterpoint to the educational seminar being presented inside by Allen Steere from 7:30 to 9:00 a.m. on Nov 1st and 2nd on diagnosis and treatment of Lyme disease in the "Meet the Expert" series.

The goals of the "teach-out" are to:

1) to aim at the audience of rheumatologists and rheumatology professionals, an alternative message that "Science Shows A Different Point of View On Lyme Disease."

2) to project the message to the press that "Science Shows A Different Point of View On Lyme Disease" than Dr. Allen Steere, particularly to coincide with the start of the OPMC hearings where Science will be at issue, as well as to contrast the class Dr. Allen Steere is holding inside

3) To continue to strongly express the message that "Steere is Wrong," extended to be "Steere is Wrong....Because of the Science."

The New Message of the Lyme Community is there is enough science now to highlight the long-term or chronic aspects of Lyme disease and the need for extended treatment to avoid the relapse cycles which result from short-term or inadequate treatment.

4) To express the message to the world in general that there is now enough science available on Lyme disease to show that Lyme disease can be chronic or long term, and that long-term treatment is mandated.

5) To continue to focus attention on the Dirty Politics of Lyme Disease, the doctor harrassment controversy, the OPMC hearings, the GAO investigation of the CDC and NIH with regard to Lyme disease. In particular to publicize the pending 50 complaints against Allen Steere in Massachusetts which are currently newsworthy

We encourage massive attendance from the Tri-State area support groups and lyme disease patients in order to fulfill our ongoing committment that "We Will Not Go Away" and to support our cause in the eyes of the nation's press, and the convention attendees.

We encourage groups and individuals to bring handouts on the science of Lyme disease which support the need for long-term treatment, and documents the long-term or chronic aspects of Lyme disease.

The time is opportune for our presence in the City of Philadelphia as a supportive public opportunity for press and for the medical and Lyme disease communities, *in combination with* the LDA (Lyme Disease Association of New Jersey) medical conference on Pediatric Lyme disease in Princeton on November 4th.

This conference is sponsored by the Lyme Disease Association (formerly the Lyme Disease Association of NJ) with presentations by physicians and researchers who really understand Lyme disease and with the Scheduled Press Event on Doctor Harrassment in New York City on November 9th, 2000.

This is a unique opportunity to turn out and make a difference and have one event build momentum for the others, a one-time chance for us to make one month really count in the History of Lyme Disease activism, - - so all that possibly can show for this event are called into action on November 1st.

The question has been posed as to relative importance of events. The LDA conference is important for those interested in medical treatment of Lyme disease but is of a different nature than the two public opportunities afforded us in New York City and Philadelphia on November 1st and 9th.

By concensus of active Lyme disease leaders, if an individual must make a choice between the two public events, we strongly urge full-fledged national turnout for the Doctor Harrassment Press Conference in New York City on November 9th.

*However* we strongly hope that since enough recovery time exists between events that all who are able *will* turn out for both events and bolster a strong showing at the Nov 1st "teach-out" at Penn Convention Center, particularly the Tri-State Lyme disease community..

We hope to impress upon the world, through press, the wealth of information and documentation that abounds on the Persistence and Chronicity of Long Term Lyme Disease and the dire need for doctors who will adequately treat Lyme disease long-term with an eye to preventing characteristing relapse cycles that abound with short-term treatment protocols.

We also intend to focus attention on the Dirty Politics of Lyme Disease that make finding adequate treatment increasingly difficult.

Please join us for this especially important event and publicize to those individuals and groups whom you are in contact with. We strongly urge you to make this information widely known.

One more note: This is a Rain-or-Shine event so bring umbrellas and advise your people that if it looks iffy, make sure they have clear contact paper to put over their posters for all-weather visuals.

TRANSPORTATION: Use of public transportation is strongly urged as it may be difficult to find parking nearby the Philadelphia site.

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THE ATTACK ON DR. BURRASCANO

Reported by Ellen Lubarsky

Dr. Burrascano, the best known of our Lyme Literate MD's (LLMD's) and a leader in the field, has been charged with professional misconduct by the New York State Office of Professional Medical Conduct (OPMC). Any sanction against Dr. Burrascano will place a chill on the treatment of Chronic Lyme Disease across the country.

Beginning on October 26th, the administrative hearing will probably go on for 2-3 months. If Dr. B. is found guilty of professional misconduct, he is possibly subject to various forms of disciplinary action, the most severe of which would be loss of his license. OPMC is a NYS agency that is part of the NYS Department of Health.

According to NY State law the identity of the complainant is kept secret. Neither we nor Dr. Burrascano have any idea of who the complainant was in Dr. B's case. It could have been an insurance company or another doctor or a disgruntled patient.

The problem arises after a complaint is made. OPMC then has the right to investigate the physician's entire practice, and they can charge him for any allegation of misconduct that they may find while traipsing through his records. In Dr. B's case, since they have been looking into his records ever since 1993 after he testified about Lyme disease before a Senate sub-committee about Lyme disease, they have had ample time to do a fine tooth combing of his records.

Such a careful search of any physician's records will, no doubt, turn up some errors. Medicine is at least as much an art as a science , and as you know, Lyme disease medicine is really in its beginning stages in large part due to the politically motivated denial that Lyme disease is a serious illness. This can leave our Lyme Literate MD's {LLMD's) open to Monday morning quarterbacking.

Those physicians who have made us much more ill by failing to diagnose and treat us far, far outnumber the LLMD's. We have not reported most of them, partly because we are too sick to bother and partly because many were just misguided, not intentionally destructive.

HISTORY:

1) In 1999, alarmed that New York LLMD's were being investigated by OPMC, the Lyme community staged a protest in front of OPMC headquarters in NYC in early December. At the same time, NYS support group leaders organized LymePac and wrote to NYS officials and OPMC asking that there be an investigation into the apparent harassment of many LLMD by OPMC and other medical licensing boards throughout the country.

This is because a very large number of LLMD's had almost simultaneously been reported in several states . At that point, the question was whether the medical licensing boards were being used for political reasons by insurance companies or others with vested interests in denigrating LLMD's. Others in the Lyme community nation- wide wrote to OPMC protesting apparent harassment of our LLMD's which had come to a head with several doctors losing their licenses in several states .

2) THE OPMC DR. MARKS LETTER: On 12-21-99 , Dr. Ansel Marks, executive secretary of OPMC wrote in a letter to one of the Lyme patients that

"The office of professional medical conduct is often faced with the challenge of identifying legitimate , recognized and authoritative opinions in medicine regarding the diagnosis, evaluation and treatment of a variety of medical conditions.

We have had similar experiences with other diseases. In these instances, the office relies heavily on recognized independent medical expert opinion to assist in formulating what are the accepted standards of practice and care to best protect the patient-public. It is reasonable to apply this investigative strategy for patients with either Lyme disease or its presumed diagnosis.

In the case if Lyme disease, the Centers for Disease Control, American Lyme Disease Foundation, Medical Letter, and a host of other sources have provided guidance for the standard care of Lyme disease. Rarely, if ever, have these published guidelines indicated that anything more than two-three weeks of antibiotics are required to cure Lyme disease."

This unexpected admission by of bias in OPMC which was to be judge and jury in the investigations and hearings of our LLMDs was shocking to the Lyme community.

3) LETTER WRITING CAMPAIGN TO NYS OFFICIALS: A letter writing campaign was undertaken by Lyme diseaSe patients across the country to ask the legislature and various NYS officials to intervene to examine the impartiality of OPMC.

4) FAIM AND LYMEPAC: FAIM began working with Dr. B and NYS patients, primarily through LymePac, in asking the legislature to intervene with OPMC. FAIM lobbyist Monica Miller was extremely helpful in directly meeting with key legislators and helping us to organize a campaign to involve media in our efforts. Each politician she met with reported receiving a huge pile of letters from Lyme disease patients!!! The community was truly awesome in its determination to fight for its rights despite such extreme debilitation from illness.

5) EFFECT OF ACTIVISM: The general effect of our activism was to stall the machinery that had been set in place by OPMC against our doctors. Richard Gottfried, Chairman of the Assembly Health Committee, and other NYS legislators contacted OPMC to look into our charges of bias.

No hearing date was set for one of our LLMD's who had already been presented with charges against him. No charges were, as of then, lodged against Dr. B, despite the fact that he had already been notified that he would receive charges. This was not business as usual; this was clearly because of our activism efforts.

6) OPMC RESPONSE TO LEGISLATURE: Shortly before the legislature recessed, Monica Miller of Faim informed LymePac that OPMC had responded to the legislature's questioning by stating that they are not biased. Despite their previously documented belief that Lyme disease is easily treated they now told the legislature that they were not going to prosecute any physician based on overtreatment of Lyme disease, but would prosecute them on other issues.

7) LYMEPAC RESPONSE TO OPMC STATEMENT: LymePac wrote back to Gottfried protesting OPMC's statement and reiterating its concern about a government health agency taking sides in a medical controversy. The legislature recessed shortly after so there was no answer to this letter.

8) OPMC CHARGES DR B.: The New York State legislature recessed in July and legislators went back to their home districts. OPMC used this opportunity to move ahead against Dr. B, presented him with charges of medical misconduct and scheduled his hearing for October 26th!

7) CURRENT ACTION FOCUS: While NYS law technically does not permit the legislature to become directly involved with the hearing process once OPMC has officially charged a physician, we clearly cannot quietly accept OPMC's endrun around the democratic process.

We have got to make the legislators who interceded on our behalf aware of what OPMC has done.

We further have to continue to insist that the legislature must call a moratorium on the adminstrative hearings of our LLMD's until there can be an investigation into the impartiality of OPMC.

We also have to make the public aware of this situation by getting as much press coverage as we can.

SO that brings us up to date. There are other important things going on: the GAO investigation, possibilities with Specter and Burton, the work in Massachusetts to hold Dr. Steere responsible for his underdiagnosis and undertreatment of Lyme disease, and I am sure much that I do not know about. But the most immediate thing we can do as a community across the country is to begin writing letters to key politicians on Dr. B's behalf.

Please read the action alert updates and write the letters that are suggested. There will be more action alert updates in the future, but for now this letter writing campaign is absolutely essential.

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SPECIAL TO MSNBC, 11-1-00, By Linda Carroll

"Debate rages over Lyme treatment

PHILADELPHIA -- Demonstrators invaded the normally staid and studious atmosphere of a national medical meeting here Wednesday, carrying placards and doling out leaflets intended to refute the teachings of a prominent Lyme disease expert.

The focus of their ire was Dr. Alan Steere, a renowned rheumatologist who originally linked the disease with tick bites and named it after the town in Connecticut where it was discovered.

Steere has become a lightning rod for angry patients who feel that his prominence has given his opinion more weight in the ongoing medical debate over whether Lyme is over- or under-treated.

He, along with many physicians, supports a short-term course of antibiotics while other doctors disagree, saying that patients may need months, sometimes years, of treatment.

At the annual meeting of the American College of Rheumatology, dozens of patients gathered around the front door of the conference center, where they could catch doctors drifting out for lunch.

They said they were holding a "teach-out" to counter what Steere told rheumatologists inside the building in a morning session in which he had promised to teach "How to treat and diagnose Lyme disease." Steere is a researcher at the Tufts University School of Medicine in Boston.

The demonstration is the latest salvo in an unusually acrimonious academic argument. Patients say they are caught in the middle, that they have trouble getting proper care and that insurance companies are loathe to pay the high price of long-term intravenous antibiotic therapy when leading experts like Steere say that such treatments are completely unnecessary.

Patients are particularly incensed by Steere's involvement in the malpractice investigation of Dr. Joseph Natole of Saginaw, Mich., who had been treating Lyme patients with intravenous antibiotics. Steere testified against the Michigan doctor, and Natole lost his medical license for six months.

Patients decided to fight back, by protesting against Steere when he makes public appearances and by filing complaints against him in his home state of Massachusetts.

One of the Lyme support groups has been encouraging disgruntled Steere patients to file complaints with the state's medical board. Thus far, the medical board has received more than 50 complaint letters concerning Steere, according to the Massachusetts Lyme Disease Coalition.

As the patient groups have become increasingly vocal, Steere has become more reclusive. He has refused press interviews, including interview requests for this article.

[MisTick writes:

The reporter was explaining what had occurred and how Steere had gotten angry and ran off. She told me "he cancelled his class" ... He cancelled the class FOR TODAY! [11-2-00]

He was there for the Full Monty or whatever you call it, (on 11-1-00) when we had the full length of the building with foam board signs and posters and 3-sided display boards ...

Tremendous traffic from the attendees, tremendous amount of literature handed out ...

Then everyone went back in after lunch; and ... (Steere must have) wondered who had been outside, and who had seen, and who had read; and I don't think he was as comfortable as he would have wished, wondering what the attendees were thinking ...

I am quite sure many attendees had questions for him. ]

Outside the meeting, patients talked about why they were targeting Steere in particular. "He has been the most public," said Susan MacNamee, 43, of Perkasie, Pa. "He's the most well known. He even discovered it. So doctors believe what he says."

Others suggested that Steere's vocal opposition to long-term antibiotics have led insurance companies to refuse payment for these treatments. "When he stands up and says we all are cured after four weeks of antibiotics, we can't get treatment," says Gail Wallin, 50, of Holland, Pa.

Doctors, for the most part, hurried by the protestors, ignoring their promises to "tell the truth about Lyme disease."

[MisTick writes:

Only at the front door did attendees push past and that was because it was somewhat congested with about 8 of our people there.

We had the full length of the building covered with foam board signs and posters and 3-sided display boards like one would use at a health fair.

Many cruised the walkway reading, taking handouts, engaging in conversation with our people. On the long terrace many people sat and read the information as they sipped coffee.

Many attendees had been told or figured out what was going on when they returned and took literature.

Across the street on the opposite corner, only one other person and I handed out literature, most took it.

Two rheumatologists from Michigan sat directly in the middle of us on a window ledge the whole time. They were quite interested. ]

Some physicians, like Dr. H. Paul Lasky, stopped to spar with the protestors, attempting to convince them that Steere's analysis of the disease is right ...

But a Swiss doctor who stopped to talk was perplexed by all the furor. `There is no controversy over Lyme disease in Europe,' said Dr. Fritz Hasler, a physician in private practice in Chur, Switzerland. `Doctors simply treat patients with antibiotics until they get better,' Hasler said ..."

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