Chronic Lyme disease

Lyme "wars" is an ongoing controversy between two "bitter and vengeful" camps of Lyme disease researchers and doctors about the nature and treatment of chronic sequelae of Lyme disease.

The majority group, supported by IDSA, predominantly university-based physicians, consider Lyme disease easily curable with 2-4 week course of antibiotics. In their opinion, chronic sequelae of acute Lyme disease occur infrequently. They are only consequences of Lyme infection, such as autommune reaction, but not the infection.

The minority group, exemplified by ILADS, consisting mostly of practical physicians, insist that Lyme disease bacteria may survive a short course of antibiotics. These surviving bacteria may cause, in their view, the long-term consequences of acute Lyme disease. Hence such cases have to be treated by additional, long-term antibiotic therapy, until the symptoms clear.http://nymag.com/nymetro/health/columns/bodypolitic/2225/

The history of the misunderstanding

The "Lyme Wars" grew steadily through the 1980s and 1990s as increasing populations of people presented themselves to doctors with clinical symptoms of Lyme disease and doctors began using longer doses of antibiotics. The war entered a hot stage, when a leading establishment figure, the discoverer of Lyme disease Allen Steere wrote in 1993 Journal of American Medical Association had become "overdiagnosed" and overtreated. Steere noted that 57% of the patients referred to his specialized clinic do not have Lyme disease according to the test Steere clinic conducted. 45% of these patients had positve test results in other clinics; however, Steere considered the false positive. . In several responses to JAMA (JAMA. 1993;270(22):2683. doi:10.1001/jama.1993.03510220038019) (JAMA. 1993;270(22):2682-2683. doi:10.1001/jama.1993.03510220038018) (JAMA. 1993;270(22):2682. doi:10.1001/jama.1993.03510220038017) pointed out to several shortcomings in Steere article. Their authors "dismayed to read that Steere et al ignored many of the basic principles of the practice of medicine as well as of good research" For example, Steere appeared to imply that his test for Lyme disease is the best one, with perfect sensitivity and specificity. Other authors "were saddened and disturbed by the article by Steere et al. There exists in the scientific literature ample evidence of persistent chronic infection despite recommended treatment, documentation of seronegativity as a real phenomenon in Lyme disease, sufficient information regarding the mechanisms of evasion of the organism by antibiotics and the immune system, and evidence for the unreliability of diagnostic tests." In 1993, Joeseph Burrascano gave testimony alongside Allen Steere to the Senate, were he asserted that a few researchers discredit opponents to create bias within federal agencies and medical journals in order to promote flawed science. [1]

Patient Activism and the Lyme Loonies

The N.I.H. head of research funding for Lyme disease commented in an email in 2007 his disdain for the “the Lyme loonies.” poughkeepsiejournal He states he received vile, vicious, profane and abusive telephone calls.

Michael Specter compares many Lyme advocates unfavorably with early days AIDS activists who were some of the most knowledgeable people in the field. Lyme activists often are associated with conspiracies such as Plum Island (a government bio-warfare that created Lyme), New York Times (they were told not to report on Lyme honestly), N.I.H. (had an agreement with pharmaceutical companies to deny the existence of chronic Lyme disease) New Yorker

The activists have been lumped with other anti-science movements (anti-vaccine and HIV virus deniers) and have been accused of fostering pseudoscientific practices and lobbying for legislation to subvert medicine and science. IDSA guideline authors slam Lyme activists

In response to an unknown document about a Lyme protest at University of Connecticut Health Center in 2007, Professor Durland Fish of Yale University wrote in an email to other IDSA guidelines authors and federal public health officials "This battle cannot be won on a scientific front. We need to mount a socio-political offensive; but we are out-numbered and out-gunned. We need reinforcements from outside our field." Fish emails

Much of the activism stems from the impression that IDSA guidelines were de-facto policies, as insurance coverage was linked to the guidelines, and because doctors fears sanctions for treating outside the guidelines, (ref to Blumenthal) and so expressed their [Political dissent] through protests political lobbying and public opinion. (possible ref Lyme Disease Update: Science, Policy & Law, published by the Lyme Disease Association.)

IDSA antitrust investigation

In 2006, Richard Blumenthal, the Connecticut Attorney General, opened an antitrust investigation against the IDSA, accusing the IDSA Lyme disease panel of undisclosed conflicts of interest and of unduly dismissing alternative therapies and chronic Lyme disease. Patients groups led by the California Lyme Disease Association had urged Blumenthal to take this action, however ILADS was also a vocal supporter of Blumenthal's attempted takedown of the IDSA guideline.

The investigation was closed on May 1, 2008, without charges when the IDSA agreed to submit to a review of its guidelines by a panel of independent scientists and physicians which would occur on July 30, 2009. The investigation raised concerns about conflicts of interest on the part of members of the IDSA panel that were never publicly disclosed. The settlement statement from Blumenthal's settlements mentioned several patient concerns, the use of guidelines to limit patient care because guidelines are treated as mandatory within the medical community, the investigation or sanctioning of 50 physicians for prescribing longer term treatment approaches to Lyme disease, and the refusal of insurance companies to cover treatments not covered by guidelines. [get proper ref to press release http://lymeinfo.wordpress.com/2009/04/13/corrupt-profoundly-flawed-lyme-disease-guidelines/]

The investigation was closed on May 1, 2008, without charges when the IDSA agreed to submit to a review of its guidelines by a panel of independent scientists and physicians which would occur on July 30, 2009. Views on the motivation and outcome of the investigation varied. Blumenthal's press release described the agreement as a vindication of his investigation and repeated his conflict-of-interest allegations.

A Forbes piece described Blumenthal's investigation as "intimidation" of scientists by an elected official with close ties to Lyme advocacy groups. The Journal of the American Medical Association described the decision as an example of the "politicization of health policy" that went against the weight of scientific evidence and may have a chilling effect on future decisions by medical associations.

The medical validity of the IDSA guidelines had not been challenged in the original investigation, and in 2010 the IDSA voted to reissued the 2006 guidelines unchanged by a unanimous vote.