What does the IOM workshop report say about Lyme disease?

January 31, 2012

I wrote about my own diagnosis with Lyme disease in this forum in the past. This is one of those conditions that is too often undiagnosed. It is one of the most commmon causes of peripheral neuropathy. Dad are you reading this?

It is a common cause of tiredness, exhaustion, and fatigue. It is a common cause of joint pain.

But don’t take my word for it. The Insitute of Medicine has recognized the frightening scope of this condition in the U.S. and held a workshop to get some conversation going. They are currently getting ready to conduct a fuller study. For now, you can read the workshop report for free online. Go here: http://www.nap.edu/catalog.php?record_id=13134#toc

Health communication’s role is highlighted on p. 36: “One participant highlighted the current gap in communications, noting that how information is provided on the Internet can vary, with implications for how those to whom it is disseminated (e.g., schools, insurance companies) will respond to the disease. The same participant called for a centralized source of information on the latest research to facilitate patient/family efforts to obtain such information. Another participant called for better communication between patients and their physicians, noting the damaging effect of this disconnection between two groups who have worked together on other illnesses. By working together in creative ways, physicians and patients may help to advance the science and understanding of the disease processes and chronic manifestations to permit earlier diagnosis and better treatment outcomes.”

On p. 31, there is a summary about conditions that often occur together with Lyme disease and need to be considered by patients and doctors as well, “Completing this community of patients are the coinfected: those with babesiosis, anaplasmosis, ehrlichiosis, or some other tick-borne infection. Surveys around the country report that ticks can transmit these well-known human diseases, yet primary care physicians almost never consider or test for them, even if they seriously consider Lyme disease.”

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