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

KPFA series of Radio shows on Lyme - updated yet again

Dennis Bernstein (host of Flashpoints on Pacifica Radio Network),  and Jessica Bernstein (no relation, doctor of psychology) have put together a powerful series of radio shows about Lyme disease and the political and health entanglements, implications and current research in the field. The stories are moving, informative, up to date, and alarming. I encourage anyone interested in public health to listen to these, whether you are a health-care provider, researcher, Lyme patient, or healthy citizen. These shows will explain the controversy over Lyme detection, prevention, treatment, insurance coverage, and more.

Here are descriptions and links to the past shows if you'd like to check them out:

1. Dr. Jessica Bernstein and Dr. Marc Conant – who was at the forefront of the AIDS movement – discussed the parallels between the way the federal government handled the AIDS epidemic and how they're handling the Lyme epidemic: http://www.kpfa.org/archive/id/99148

2. Writer Amy Tan discussed her experience with neurological Lyme disease and Bay Area Lyme expert Dr. Steven Harris explained what Lyme disease is and why it's so difficult to treat. The Amy Tan interview was on of the most powerful in the series to date: http://www.kpfa.org/archive/id/99376

3. Microbiologist Tom Grier discussed how people with Lyme are being misdiagnosed with MS and Dr. Alan McDonald discussed how they're being misdiagnosed with Alzheimer's:http://www.kpfa.org/archive/id/99572

4. Lyme Expert Dr. Ray Stricker (Amy Tan's doctor) and Marianne Middelveen discussed their latest study conducted by an international group of scientists indicating that Lyme disease may be sexually transmitted. Then filmmaker Andy Abrahams Wilson who directed the Lyme documentary, "Under Our Skin" was interviewed. Andy explained some of politics that are interfering with Lyme patients receiving treatment http://www.kpfa.org/archive/id/99786

5. Dr. Richard Horowitz, author of "Why Can't I Get Better?" is an amazingly articulate speaker. His conversation with Dennis is chock-full of statistics and useful information for anyone interested in Lyme disease, whether they have it or not. His estimations of the number of people with Lyme disease is staggering. It's clear from the scientific research that he cites, and from his experience with over 12,000 Lyme disease patients that we are truly looking at an epidemic, with most likely one to two million infected US citizens. This is a must listen, if you have any interest in Lyme disease: https://www.kpfa.org/archive/id/99859

6. Hear Dennis Bernstein interviewing director David France of, "How to Survive a Plague."  David has been deeply entrenched in AIDS activism for the past 30 years but got neurological Lyme during the height of the AIDS crisis so presents a unique perspective about the parallels and differences. check out the amazing interview in the archives: https://www.kpfa.org/archive/id/100253

7. U.C. Berkeley researcher Bob Lane discussed his extensive research on the prevalence of Lyme disease in California that he has been conducting over the past 30 years: http://www.kpfa.org/archive/id/101114

8. This show covered the recent Lyme disease protest of the Infectious Diseases Society of America (IDSA). Protest organizer Josh Cutler discussed the reason for the protest and the reaction to their efforts:http://www.kpfa.org/archive/id/103052. The protest was also covered by Fox 5 news:http://www.youtube.com/watch?v=ctWWTUZcL2c

9. Filmmaker Sini Anderson discussed Lyme from a feminist perspective. After her Lyme diagnosis, she began noticing just how many women have late-stage Lyme disease and in particular women in the feminist community. She discussed her latest film (in production) about feminists with late-stage Lyme disease:http://www.kpfa.org/archive/id/103653

10. 

KPFA continues their groundbreaking investigation into the Lyme disease epidemic, with a hard hitting three part series about the failure of government agencies to address this health crisis, the widespread under-reporting of the epidemic and a new kind of activism that’s emerging from sick patients who have been crippled by the disease. Also, we’ll be joined by Barbara Lubin of the Middle East Children’s Alliance, for an update on Gaza and information on an upcoming event.

Click on the link below to listen to the show

http://www.kpfa.org/archive/id/106663