TOUCHED BY LYME: Updated Lyme disease information list
Looking to learn about Lyme disease? Start here.
Author | LymeDisease.org
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BOOK REVIEW: The Beginner’s Guide to Lyme Disease
New book from the author of “The Lyme Diet: Nutritional Strategies for Healing from Lyme Disease.”
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LYMEPOLICYWONK: Dr. Fallon’s Suggestions for Future Guidelines.
A recent article by Dr. Fallon and colleagues reviews the findings of the four clinical trials and accurately lays out the state of the science in chronic Lyme research. This is important because future research needs and policy decisions are determined by the state of the science. If there is definitive science that tells us whether treatment for chronic Lyme works, there is no need for additional science and guidelines may justifiably take a hard line on treatment options. Otherwise, we are dealing with science in the making, more studies are needed, and treatment guidelines should be more flexible.
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TOUCHED BY LYME: When you can't afford to pay for Lyme medications
NeedyMeds.org provides information about patient assistance programs for medicines and other health care costs.
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LYMEPOLICYWONK: New York Times blew this Lyme story big time
The New York Times article “New Infection, Not Relapse, Brings Back Lyme Symptoms, Study Says” published on November 14 sounds like it is about a study about the cause of chronic Lyme disease. But it’s not. None of the patients in this small sample (17) had chronic Lyme disease. Nor was this a study about the persistent cognitive impairment, pain, and fatigue symptoms of chronic Lyme that force 25% of chronic Lyme patients onto disability. The study looked at people diagnosed with an EM rash, promptly treated, and restored to health, who over a 10year period, developed another EM rash and required treatment. Hardly, surprising in an endemic area, like New York and certainly not “big news.” Also not disputed is that most (not all, but most) patients diagnosed on EM can be successfully treated. But a study of patients with EM or recurring EM is not a study of patients with chronic Lyme disease. And you cannot compare apples to oranges in a study like this. Patients were justifiably outraged when the NY Times said the study challenged the notion the Lyme disease can become a chronic illness.
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TOUCHED BY LYME: Another Blow to those with Chronic Fatigue Syndrome
Guest blogger Toni Bernhard takes issue with how doctors officially describe Chronic Fatigue Syndrome.
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Thanksgiving in the Lyme world, 2012
Along with new and continuing challenges for the Lyme community, there is also much to be grateful for. Here’s our Thanksgiving gratitude list.
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LYMEPOLICYWONK: Dr. Fallon Sets the Record Straight—Part 2. Differences Matter.
When studies fail to take heterogeneity into account, researchers can leap to the wrong conclusion. In a recent open-access article, Dr. Fallon and colleagues describe the four NIH trials, the Krupp Stop-LD study, the Klempner seronegative study, the Klempner seropositive study, and Fallon neurologic study and make a key point. There are considerable differences between chronic Lyme patients (so-called patient heterogeneity) that need to be addressed in study design to improve what he calls the signal to noise ratio. If a study does not address heterogeneity, the results may simply reflect “garbage in, garbage out.”
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TOUCHED BY LYME: When "caboose" doctors go the extra mile
Guest blogger Jennifer Crystal reports on her emotional response to hearing her own doctor speak at ILADS.
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TOUCHED BY LYME: Reporting in from ILADS conference
Guest blogger Jennifer Crystal filed this from the 2012 ILADS conference in Boston.
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