TOUCHED BY LYME: Lyme patients need treatment options
The Institute of Medicine, part of the National Academy of Sciences, is in the midst of taking a look at Lyme disease. In April, the IOM heard from various scientists. Today, the IOM committee held the second of several "listening sessions" via telephone conference call, which allowed Lyme patients and advocates to offer their opinions as well. Here's what I told the committee.
(Remarks delivered by phone conference to the Institute of Medicine on June 15, 2010. Note: there was a 3-minute limit on public comments.)
Five years ago, my then-13-year-old daughter became seriously sick and disabled. First she needed crutches…then a wheelchair…then became completely bedridden. Yet the top medical experts we consulted couldn’t put a finger on what was wrong, and offered no effective treatment.
We wondered about Lyme disease. But the specialists refused to even consider Lyme in the differential diagnosis. Why? The answer was always some form of “Because it couldn’t possibly be Lyme disease. Period.” I later learned this viewpoint was based on the very narrow definition of Lyme put forth by the IDSA guidelines. Also, Lyme has become a political hot potato, and many doctors choose not to engage with it at all.
As our daughter’s health continued to deteriorate, we finally stepped outside of the medical mainstream…and she was diagnosed and successfully treated for Lyme and two other tick-borne infections. After more than three years in a wheelchair, too sick for school or anything else, she got her life back. Now she’s walking, driving, and last week proudly graduated from high school.
As a Lyme disease support group leader, I hear similar stories all the time. Patients with many of the symptoms of Lyme disease are told by their doctors:
- there’s no Lyme in this county
- the tick wasn’t attached long enough
- that bull’s-eye rash is actually ringworm
- that positive ELISA test was really a “false positive”
- your symptoms are merely “the aches and pains of daily living.”
Yet, many of these people—like my daughter—are ultimately helped by long-term Lyme treatment.
The scenario for people with breast cancer, or leukemia, or heart disease, is very different. Those diagnoses come with treatment options. Patients choose which treatment they prefer—more aggressive, less aggressive, watchful waiting. Lyme patients do not get treatment options.
Why should Lyme patients be systematically denied access to medical care that could vastly improve their quality of life? Especially when the only alternative is to continue to drown in pain and misery?
The recent IDSA Lyme review panel chose to ignore hours of testimony and hundreds of pages of documentation that showed that Borrelia can be a persistent infection, and that many people are helped by long-term treatment. Yes, the science of Lyme is still unsettled. There is still much to learn. But why deny people the chance for a better life in the meantime?
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