As someone who contracted Lyme disease in CT, and who had to go to at least 20 doctors to get a proper diagnosis and effective care, I deeply appreciate that your paper did its research before sending the article to print.
Thank you for presenting both sides of this debate fairly to your readers, because the info. you provided in this piece may save a life.
Since contracting a chronic case of Lyme disease because of the delay in proper treatment, I have personally met literally hundreds of others like me - patients who have gotten their lives back because of smart, courageous doctors who dared to buck the medical establishment.
The only way a great many of these patients have been able to get effective care and successful treatment has been to drive or fly great distances to be treated by these Lyme experts. . Now the IDSA has the audacity to issue a fatwah against these very doctors and patients who have not been cured by the adherents of the IDSA guidelines. Because of this Fatwah, many of these doctors will lose (and have already lost) their licenses and many patients will lose their lives.
I doubt that Wormser, Shapiro, et. at. will have 72 virgins waiting for them when they die.
Posts: 364 | From California | Registered: Sep 2005
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bettyg
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october 4, 2007, 10:15 am
Doctors dispute Lyme study Existence of chronic form of disease debated
A cohort of more than 30 doctors say they've looked at all the best evidence for the existence of chronic Lyme disease and come to a basic, albeit controversial conclusion -- there is no such thing.
"I would say that based on the hard scientific evidence, it doesn't exist," said Dr. Henry Feder Jr., a pediatrician and family doctor at the University of Connecticut School of Medicine in Farmington.
The New England Journal of Medicine on Wednesday published the findings in a review article titled "A Critical Appraisal of 'Chronic Lyme Disease.'" The report is based on the results of 58 previously published studies of Lyme disease.
The article concludes by saying, "chronic Lyme disease is the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections."
The chronic form of the disease is "a misnomer," the report said, adding that "the use of prolonged, dangerous and expensive antibiotic treatment is not warranted."
But other doctors -- who have treated patients they consider to have chronic, long-term infection with Lyme disease bacteria -- blasted the New England Journal of Medicine report and said it studiously ignored anything that might disprove the article's point of view.
"They're selecting their data," said Dr. Raphael Stricker of San Francisco, president of the International Lyme and Associated Diseases Society.
ILADS has its own treatment protocols for chronic Lyme disease that fly in the face of the far more conservative approach favored by Feder and the Infectious Diseases Society of America.
"There are 19,000 articles on Lyme disease," Stricker said. "They just picked out the ones that suited them. They say they're using scientific method, but then they go out and say anything they want."
Feder acknowledged that some people who have been treated for the disease with antibiotics have reoccurring symptoms, but he said there is no evidence Borrelia burgdorferi, a biological Lyme disease agent, can hide in the body as a cyst and then bloom later as active bacteria, as proponents of chronic Lyme disease claim.
Feder hopes the New England Journal of Medicine article will give doctors ammunition for debate when patients arrive with medical advice from the Internet and claim they have chronic Lyme disease.
But Stricker, the president of ILADS, said there is a growing body of published reports in medical journals that shows chronic Lyme infection does exist, and his practice and others are amassing data about patients who get well with long-term antibiotic treatment.
Stricker said the report -- published in a prestigious publication -- may simply give insurance companies an argument for refusing to pay for more than two weeks of antibiotics for Lyme disease treatment. It may also scare doctors away from treating people for the infections.
"And it will be the patients who will suffer," Stricker said.
Patricia Smith, president of the Lyme Disease Association, a patient group, agreed.
"Obviously, we are devastated by this particular set of guidelines. Certainly, this is really inhumane. What they have done is shut off treatment for Lyme patients everywhere and not given them options," Smith said.
Smith said it has been 20 years since her two daughters were treated for Lyme disease and "there is still no definitive test and no good treatment."
Wednesday's report was worrisome for Maggie Shaw of the Newtown Lyme Disease Task Force, who said she can't meet anyone today who hasn't had some family member afflicted with Lyme disease.
"It's very, very disappointing. We have so many sick people in this area who have to travel out of state and out of network to be treated," Shaw said, noting that many local doctors follow the IDSA guidelines and don't give patients the option of the ILADS guidelines.
"If the IDSA guidelines for treatment were working, we wouldn't have this," she said.
Shaw is worried about the patient population in this area, since many Danbury doctors primarily follow the standard of care of the IDSA. In addition, two local doctors, Thomas Draper and Jerry Green, are on the ad hoc committee that contributed to the report.
Dr. Steven Phillips of Wilton also called the report damaging.
"It is published in a huge journal, but it is an opinion piece. It makes a series of statements as fact that are not fact," Phillips said, criticizing the authors for not flushing out additional results from their references.
"I don't believe there has been a disease that has so polarized the medical community," Phillips said, "except maybe syphilis."
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