Says LDA President Pat Smith, "These guidelines being upheld become another nail in the coffin for those afflicted with Lyme disease."

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STATEMENT OF THE LYME DISEASE ASSOCIATION, INC. ON THE IDSA GUIDELINES PANEL DECISION 4-22-10

We are not surprised by the conclusions reached by the IDSA review panel but are certainly disappointed.  It is certainly suspect that in a disease with numbers on the rise  (250% increase from 1993-2008) which is so highly controversial, and with unsettled and undone science, that the panel would vote lockstep (8-0)  except for one dissenting vote in the crucial area of defining chronic Lyme disease (7-1), to uphold all the recommendations. The Lyme Disease Association (LDA) publicly expressed its concerns about bias in the panel selection throughout the process, including the selection of the chair, who is a former president of the IDSA, and the lack of community treating physicians.

The IDSA’s position at the onset of this investigation and settlement process has been that the Attorney General of Connecticut’s investigation was interfering in medical practice rather than the guidelines formation process, and to apply logic to their way of thinking, any changes in the Guidelines would admit wrongdoing on their part and set a precedent for future government actions in creation of their many guidelines development. So instead, they uphold all the recommendations, fail to provide the specific references that were considered and used to justify upholding each panel recommendation (the resources are lumped at the end of the paper), and they provide lists of items that need to be considered in the “next” upgrade of their guidelines, relieving them of responsibility of admitting to anything with these guidelines.

We note with interest that IDSA separated out the only real area of contention among its panel, a statement on testing that appeared in their Guidelines executive summary. When the panel’s apparently improper first vote on this issue was uncovered by a FOIA, (freedom of information act) on their panel voting process, IDSA claimed that this was NOT a recommendation they needed to review, but they only did so at the request of the Attorney General. (The vote was 4-4 and a supermajority was required to pass it).  Their empty “political” rhetoric on adherence to these guidelines is only voluntary and certainly they support clinical judgment is belied by their statement “Based on current research for patients with non specific symptoms that may be seen in may illnesses…it would be a deviation from “best fit” [association between illness and likely diagnosis established by medical evidence] to attribute such symptoms to Lyme disease in the absence of more specific clinical features or laboratory results…All Lyme disease clinical findings including erythema migrans can be seen in diseases other than Lyme…It would thus be clinically imprudent to make this diagnosis of Lyme disease using these non specific findings alone.”  

They admit to receiving a large volume of case reports & case series that attested to PERCEIVED clinical improvement with long term treatment. One would assume that in most cases, doctors were perceiving the improvement in patients and thus their years of clinical judgment would carry significant weight. Yet they excluded all of that evidence as not justified.

Patients cannot wait for the medical establishment to address the problems with this disease. They need treatment now. These guidelines being upheld become another nail in the coffin for those afflicted with Lyme disease. We are looking to the Attorney General of Connecticut to examine the entire process to ensure compliance and take further action if he finds any grounds to do so.

Pat Smith, President

Lyme Disease Association