My Response to “Sen. Blumenthal’s needless Lyme disease act”

capitolThis is the Letter to the Editor at theday.com that I submitted. 

In Sen. Blumenthal’s needless Lyme disease act, July 24, 2011, I noticed the remark about risk-taking. “It’s not as if anyone is in favor of Lyme disease.” If Lyme Disease was so clear cut then why was the panel to review the controversial subject of treatment for this disease “stacked” in favor of the IDSA? If there was nothing to worry about, then would it not make sense to include professionals from both sides of the issue evenly distributed among the panel? The speakers in the IOM process did not include any physicians from the International Lyme and Associated Diseases of which many were very familiar with the key issue-Lyme Disease. They also had published in peer-reviewed journals and conducted clinical research.

Why is it that Dr. Wormser was the only person that was able to address the main issues? Why were there no opposing viewpoints able to be presented?

Why would the IDSA panel come up with the term “Post-treatment Lyme disease Syndrome” which is described as “about 10 to 20 percent of patients have lingering symptoms of fatigue, pain, or joint and muscle aches?” If these “lingering” symptoms continue, is that not equivalent to the term “chronic”? Does that not describe what you term “so-called chronic Lyme”?

It goes on to address long-term antibiotic treatment is unsupported: “The only problem, the treatment is not supported by the science.” However, there “is” evidence in support that chronic Lyme does indeed exist and that the bacterium continues to persist even after the standard treatment. Datar, Kaur, Patel, Luecke, and Sapi, as part of a Lyme Disease Research Group of the University of New Haven’s study shows that the use of Doxycycline as the guidelines suggest, only worked on partially and not on all forms of the bacteria. Also, “four National Institutes of Health (NIH) trials validated the existence and severity of chronic Lyme Disease” in the Interdisciplinary Perspectives on Infectious Diseases by Cameron.  It is also based on other evidence-based work that also supports that chronic Lyme Disease does exist. It states that long-term antibiotics cause more harm than good and “promote” “drug-resistant bacteria” which also has been found to be a moot point based on recent studies that confirm otherwise.

Is the IDSA guidelines based on evidence? Studies say otherwise, Medical “best practice” often no more than opinion–“They found only one in seven treatment recommendations from the Infectious Diseases Society of America (IDSA) — a society representing healthcare providers and researchers across the country — were based on high-quality data from clinical trials.”

“This legislation is unnecessary and potentially counter-productive. It deserves to die in committee.

If indeed, this hot debate regarding Lyme Disease has been objectively researched and free of bias, this legislation would not be necessary. However, it appears that someone has to step in to ensure the 10 to 20% that do not fit the “one size fits all” or “cookie cutter” approach get the necessary treatment they deserve.

Lydia

CALDA’s Response to this same article.

rebuttal: activism:

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