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May 2015
From the President
On Lyme, As with All Infections, Advocating for Patients is our Highest Priority
Few issues have drawn attention to IDSA in quite the way that Lyme disease has. Despite the fact that our treatment guidelines have become the focus of frustration for some individuals, IDSA always has been and always will be committed to advocating for the best possible care for patients based on the best available science.

While the majority of individuals diagnosed and treated for Lyme with current approaches improve rapidly and have a full recovery, there are some patients who have persisting symptoms. Unfortunately, we do not yet understand the mechanism of this sufficiently to know the best evidence-based approach to help these patients. As many of you are aware, four federally funded blinded studies examined the use of longer term intravenous antibiotics in such patients but were not able to find a meaningful difference in treated versus control patients. And, of course, the consequences of long-term use of antibiotics are of great concern to all of us.

We also know that current Lyme diagnostics are not ideal, and as in other areas of ID, we have been advocating for needed investments to find improved diagnostics that are appropriately validated in peer-reviewed publications and approved by the Food and Drug Administration. We need improved disease recognition not only to identify Lyme disease rapidly but also to ensure patients are not misdiagnosed with Lyme when in fact they have something else for which treatment might be effective.

Lyme is a very important and growing problem. It is for that reason, in addition to new information published in recent years, that IDSA has undertaken the process of developing a guideline that now brings together three medical societies: IDSA, along with the American Academy of Neurology and the American College of Rheumatology, each with complementary expertise. In addition, we have official representation from eight medical and scientific organizations with expertise including cardiology, microbiology, and pathology. We have also enlisted two medical librarians to do the comprehensive literature search related to the key questions the panel has been asked to evaluate, as well as an expert in methodology to ensure that the literature reviewed is evaluated for the quality of the evidence provided. In addition, the panel includes a healthcare consumer with experience in medical and scientific discussion and decision-making, and we are working to add at least one current or former patient or parent of a patient treated for confirmed Lyme disease to the membership of the panel. The development process also includes two public comment periods, one regarding the project plan which recently ended and one when a draft of the new guideline is available.

This will be a long and rigorous process, but one that I am confident will present the best recommendations based on current evidence for diagnosing and treating patients for Lyme disease. We are likely many months from a final guideline and I have no doubt that during those months, we will continue to receive questions regarding the update of this guideline. We must do our best to answer those questions honestly and as openly as possible. We are committed to developing a guideline that will have the best interests of patients at its core and will reflect the best science available.

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