TOUCHED BY LYME: Here’s my tweet to the president. What’s yours?
President Barack Obama is holding a Twitter Town Hall on Wednesday, July 6, at 2 pm eastern time.
Author | LymeDisease.org
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TOUCHED BY LYME: Letters to the editor are a simple way to make a point
Writing a succinct letter to your local newspaper can be a good way to get started with Lyme activism. Here are a few other suggestions.
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LYMEPOLICYWONK: Lyme Healthcare Access and Burden of Illness Survey Results Published!
In 2009 prior to the IDSA hearing, CALDA wanted patient voices to be heard and conducted a survey that drew over 4,000 responses. It ended up being the largest survey of Lyme patients ever conducted in the United States. Today, the results of this survey were published in Health Policy in a study by Johnson, Aylward and Stricker. Health Policy is a highly regarded peer-reviewed journal that explores health policy issues. This survey focused on 2,424 respondents whose clinical diagnosis was supported by positive test results. The study examines problems with access to healthcare and burden of illness, and it found that although patients with Lyme disease suffered a substantial burden of illness, they had significant barriers to healthcare access. Specifically, patients with Lyme disease had difficulty obtaining diagnosis and treatment for their illness, traveled great distances to receive healthcare, were turned down for health insurance based on their illness, and had difficulty receiving care at local hospitals.
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TOUCHED BY LYME: Answering the question “What can I do to help?”
When you and/or members of your family are chronically ill, there may be friends and family members willing to help out. But responding to and coordinating such offers of help can seem too overwhelming. Here's a way to make the process work more smoothly.
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TOUCHED BY LYME: (guest blog) How to ask for help when you’re sick
Toni Bernard, JD, the author of the award-winning book, “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers,” blogs about something that is difficult for many Lyme patients–asking others for help when you need it.
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TOUCHED BY LYME: Maneuvering the medical maze
I often tell new Lyme patients that two of the most important tools for fighting this disease are a three-ring binder and a hole punch. By this I mean it’s essential to keep good records. Get copies of everything—lab tests, medical procedure reports—and stick them in your binder, keeping this important information easily accessible. Now, somebody has come along to improve on this idea considerably.
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TOUCHED BY LYME: When pain is simply unbearable
As a kid growing up in southern California in the 80s and 90s, Bryan Bower was a bit of a daredevil: BMX biking, rollerblading, skateboarding, snowboarding—never a show-off, but always pursuing his jumps and thrills. As a college student, he discovered a new passion, rock climbing. He went everywhere with his new best friend and climbing buddy Rhyan. Joshua Tree, Tahquitz, The Needles and Malibu Canyon were southern California favorites. In his early 20s, Bryan started training to climb Yosemite's El Capitan, practicing with one of those folding ledges that you haul up and sleep on when you’re half way up the 3,000-foot granite face. All that came to a screeching halt about six years ago
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NEWS: New UC Davis study says Lyme hides out in lymph nodes
Researchers at the University of California, Davis, have found that Lyme bacteria "have developed a novel strategy for subverting the immune response of the animals they infect." Their study appears on-line in the journal Public Library of Science Biology.
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TOUCHED BY LYME: How to save money on certain Lyme-related lab tests
Paying out-of-pocket for lab testing can take a hefty toll on your family’s pocketbook. Here’s one way to save.
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TOUCHED BY LYME: Bringing in “Charlie Brown” to support the Lyme community
Combining her love of the theater with a desire to support the Lyme community, this student actor is staging a production of "You're a Good Man, Charlie Brown" in Atherton in June.
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