Monday, June 30, 2014

What does the "Facts" say?

(The title of this post is not a typo. It's a variation on a current 'meme' that has taken up residence in  my grey matter after listening to too many YouTubes by Ylvis. If you haven't been exposed to the gone-viral vids by comedic Norwegian brothers, Ylvis, just Google "What does the fox say?"

Here's something that came across my e-desk this morning. It is an email posted to a LLMD Listserv I read. I asked for his permission to reprint it here.  If you have any interest in the controversy about Lyme disease prevalence, diagnosis, and treatment, and wonder why so many of us are left out in the cold fending for ourselves against what we believe is a pandemic that is being ignored, read on.

"First off, they said it was a new disease, which it wasn't. Then it was thought to be viral, but it isn't. Then it was only transmitted by the Ixodes dammini tick, which is no longer considered a valid tick species. Then it was thought that seronegativity didn't exist, which it does. Then they thought it was easily treated by short courses of antibiotics, which sometimes it isn't. If you look throughout the history of Lyme disease, almost every time a major dogmatic statement has been made about what we know about this disease, it was subsequently proven wrong or underwent major modifications."
         --Dr. Ed Masters

"The controversy in the Lyme disease research is a shameful affair and I say this because the whole thing is politically tainted. Money goes to the same people who have for the last 30 years produced the same thing—nothing."
          --Dr Willy Burgdorfer (Discoverer of Lyme disease, from Under Our Skin)p

"Obviously this NPR piece (the recent interview with Alan Steere) was orchestrated for an agenda, probably to oppose the pending legislative efforts.

It does give insight about the definition of Lyme disease he and his cohorts advocate, and points out three fatal flaws that are present in his opinion:

1. It is implied that anyone agreeing with the restrictive definition of Lyme disease is "mainstream medicine" and anyone having a broader definition is only from "advocacy groups."

2. There is excessive confidence placed in current testing: when the (two tiered) testing conflicts with the clinical presentation it cannot be Lyme.

3. Authority should be given to the opinion currently advocated by CDC and IDSA.

It is well documented in the peer reviewed literature recognition of a broader definition of Lyme disease is more valid and many mainstream physicians and scientists recognize these findings. Advocacy groups read the scientific literature and other sources of information and decide for themselves which position is more plausible. No immune based testing can ever be reliable when testing for a microbe that has immune evasive mechanisms and current testing, including his, demonstrates the two tiered testing is very poor.

The whole basis of science is to question every hypothesis and to never defer to any so called authority opinion from CDC, IDSA or anyone else. If we do defer to authority, who has more authority in this dispute—detached bureaucrats and bench scientists who don't have ongoing clinical responsibilities (who dominate CDC and IDSA opinion) or those who conduct clinically relevant research and the front line physicians who have the long-term responsibility to treat Lyme patients? Continuing the circular logic advocated by Dr Steere will keep us going in circles rather that progressing forward with a better understanding of Lyme disease."

              --Robert C Bransfield, MD, DLFAPA


If you like what you learn from my blog, please subscribe. I will not spam you. I'm only interested in helping others (and me) recover from Neuro Lyme disease. 

-Bob

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