Lyme disease panel leaves out key players

Mary Beth Pfeiffer from the Poughkeepsie Journal published an article on the upcoming IDSA guidelines for the diagnosis and treatment of Lyme disease, which focuses on panel members and conflicts of interest. "Raging controversy over Lyme treatment guidelines in large part led the federal Institute of Medicine in 2011 to publish standards for developing medical guidelines that were fair and unbiased. The 2006 Lyme guidelines had been questioned in 2008 by then-Connecticut Attorney General Richard Blumenthal, now a U.S. senator, who alleged panel members had "undisclosed financial interests .... in Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies;" as a result, he said, the panel "improperly ignored or minimized consideration of alternative medical opinion" on chronic Lyme disease...The Institute of Medicine said the controversy was "illustrative" of the need for a uniform process across diseases, involving doctors, patients and scientists with diverse viewpoints. Its report made clear that conflicts of interest could lead to bias by, among others, "specialty societies, which might benefit or whose members might gain from guideline recommendations." The recent ILADS guidelines which were published in a peer reviewed medical journal, strictly followed IOM recommendations.
There is concern that the new IDSA guidelines are not following IOM recommendations, since patient groups have pointed out that members of the existing panel are the same authors from the prior guidelines, who deny the existence of chronic Lyme, with ongoing conflicts on interest, including receiving government or private research grants for the development of Lyme testing. Lyme testing is known to be unreliable, and "because tests fail early on — which mainstream scientists acknowledge — and the rash does not always occur, such endorsements lead to undiagnosed cases".
The 2010 IDSA review panel was "split on whether to discourage clinical diagnosis", but missed diagnosis can not only lead to chronic disability, it can also result in fatal outcomes. This was illustrated in the recent demise of Joseph Elone, a local Poughkeepsie High School student, who had a negative ELISA test for Lyme disease, and died several weeks later from disseminated Lyme. The scientific literature shows unreliable blood tests, persistence of borrelia despite short term treatment, with peer reviewed clinical trials demonstrating the benefit of longer term antibiotic therapies. I have included a link to my web site below, with an extended commentary on this article from the Poughkeepsie Journal, listing some of the most important scientific references on the diagnosis and testing for Lyme disease, that must be reviewed by the IDSA guidelines committee. It is incumbent on health care providers to review the past and present scientific research, and use their best clinical judgment in treating their patients. It is also incumbent on the IDSA panel to review up to date scientific literature, without conflicts of interest, so that we have guidelines that can be relied upon to help the millions suffering with diagnosed and undiagnosed tick-borne diseases. I would like to thank Mary Beth Pfeiffer and the Poughkeepsie Journal editorial staff for their ongoing excellent and comprehensive coverage on the politics surrounding Lyme disease.…/lyme-disease…/28218615/
Read my full commentary here:…/video-review-of-lyme-disease-…
She knows about cancer care. So why is she 'consumer rep' on Lyme disease panel?