Author | LymeDisease.org
I’m always looking for new ways to explain to people the complex world of Lyme disease. Not only is the illness itself biologically complex, able to manifest in countless different ways, but the history and politics of this particular disease muddy the picture even more.
The first federal Lyme bill was introduced 11 years ago. The Lyme disease community still has not passed a federal Lyme bill. Why not? Learn about the history of Lyme legislation, the legislative process, and our own part in the drama. CALDA founder and president Phyllis Mervine shares experiences and insights from her decade of involvement with various reincarnations of the federal Lyme bills.
Nurse practitioners had three opportunities to learn about Lyme disease at a recently concluded statewide conference in Sacramento:
Today I attended California's Lyme Disease Advisory Committee meeting in Sacramento. It's a group which advises the state health department on tick-borne disease issues. I made the following remarks to the committee during the public comment period.
The eyes of the Lyme community are riveted on this week’s tragic shooting death of an Illinois minister. The alleged shooter, 27-year-old Terry Sedlacek, has reportedly suffered from neurological Lyme disease for years, and some people believe his illness may have contributed to his violent behavior.
Sooner or later, anyone dealing with Lyme disease comes face to face with the high cost of prescription medicines. Even those who start out with insurance coverage for drugs may find their benefits run out before their need for them does; or the medicines they require aren’t covered on their plan; or the co-pay for certain drugs is inordinately high. Then there are patients who flat out have no insurance coverage for drugs at all.
The task for an author who wants to write a book about Lyme disease is daunting. This is due not only to the complex illness itself, which can manifest in literally hundreds of ways, but to the complicated history and politics which keep Lyme disease in a separate category from other medical conditions.
Merrill Goozner at Gooznews cites a recent JAMA article by Tricoci showing that nearly half of the recommendations in treatment guidelines are not based on clinical trials, but rather, are based on no more than the expert opinion of those on the panel. This leads to the rather obvious conclusion that evidence based medicine is largely bankrupt. Only 11% of recommendations for heart disease were based on multiple randomized trials.
A few years back, Tami Duncan was a mother of an autistic son, searching for ways to help her child. As it happened, she also had ill-defined health problems of her own. Like many of us who couldn’t find answers elsewhere, she turned to the internet. Early on, she connected with other moms of autistic kids…discovered many of those kids were testing positive for Lyme disease…found out she and her son both had Lyme …and ended up starting the Lyme-Induced Autism Foundation (LIA). Don’t let the word “autism” turn you away if that isn’t your family’s specific issue. LIA has a wealth of information for anyone dealing with the complexities of chronic illness, especially tick-borne infections.
In response to concerns raised by patient's organizations and physicians about the document submission process–which initially tried to limit submissions to five pages–the IDSA has changed its document submission process. The IDSA is now requesting that submissions be 10 pages or less with an acknowledgment that they will consider all submissions regardless of length. For a submission to be considered by the panel though it must specify what recommendation is being contested. This is because the scope of this panel is simply to consider and weigh the scientific evidence for contested recommendations.
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