NEWS: Real lives. Real stories. From the IDSA Lyme survey.
The IDSA’s Lyme review panel is supposed to consider the “patient perspective.”
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LYMEPOLICYWONK: IDSA Guidelines Revision Process–Cause for alarm?
The Infectious Diseases Society of America recently announced that it will finally be updating its Lyme disease guidelines. They have opened a 30-day window for the public to comment on their guideline development process. I’ve only had a few days to review their proposal, but I am deeply concerned by what I see.
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Thanksgiving in the Lyme world, 2014
Along with new and continuing challenges for the Lyme community, there is also much to be grateful for this Thanksgiving season.
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Telling the stories of people with Lyme disease
“The Lyme Altar: A People’s History of Symptoms, Sacrifice and Hope,” a new documentary, focuses on Lyme patients and the doctors who treat them.
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THE LYME TIMES: Celebrities turn spotlight on Lyme disease
The cover of the latest issue of THE LYME TIMES features entertainers Debbie Gibson and Daryl Hall, who are among the celebrities helping to draw media attention to Lyme disease.
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NEWS: New ILADS Lyme guidelines promote options and informed choice
LymeDisease.org has endorsed the new Lyme disease guidelines published by ILADS, calling them “both evidence-based and patient-centered.”
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THE LYME TIMES: A Feeling for the Organism
“Had we listened to our pediatrician and the local Lyme disease expert, we might have stuffed him full of psychoactive medications unable to address the disease. It would have been tantamount to locking him up and throwing away the key,” Elizabeth Stone said. Luckily they found Dr. Jones and her 16-year old son made a near-miraculous recovery.
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THE LYME TIMES: 25 years of tick-borne disease advocacy
Twenty-five years ago, with a handful of volunteers, Phyllis Mervine launched what became LymeDisease.org. Our first issue of The Lyme Times was two legal-sized pieces of paper photocopied and stapled together. This anniversary issue looks at the early years of Lyme advocacy–the pioneers and the denialists–and the grassroots efforts that have brought us to this point.
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NEWS: Largest survey of chronic Lyme finds high disability, unemployment, medical costs
LymeDisease.org asked chronic Lyme patients the same “quality of life” questions the CDC asks about other chronic diseases. Nobody had ever done that before.
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LYMEPOLICYWONK: Survey Results Published! Chronic Lyme Patients Suffer Poor Quality of Life and High Rates of Disability and Unemployment
LDo’s most recent survey of over 3,000 patients with chronic Lyme disease was published today by PeerJ. Although the Centers for Disease Control (CDC) recently increased the number of Lyme disease cases in the US from 30,000 to 300,000, little is known about how chronic Lyme disease affects patients. We decided it was time to ask them. This post will provide an overview of the findings and future blogs will focus on other findings regarding coinfection rates, rashes, disability, symptoms and other topics. The study was a joint effort of LymeDisease.Org and Prof. Jennifer Mankoff at Carnegie Mellon University.
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