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

New precedent for insurance coverage of Lyme treatments

UPDATE: I've been reading on the web that this is possibly erroneous in its conclusion. This case may not affect anything regarding the insurance coverage for Lyme patients. I'm looking into it.
.

-Bob

This just in:

Please post, blog, like, circulate this article.

VICTORY! 
CASE #09-CV-1039MCA GLIBOWSKI VS. U.S. OFFICE OF PERSONNEL MGMT.

History was made, and has set a precedent, for all Lyme disease patients in a lawsuit, in which attorney, William L'Esperance, a longtime part of the Lyme Disease United Coalition (LDUC), has won a case where the Office of Professional Management (OPM), on the side of the insurance company, has been overruled.

The Lyme disease patient, in the lawsuit, submitted bills for hundreds of medical services, treatments, and tests.  The court ruled that the Lyme disease patient wins the case without regard to the medical necessity of the patient; or whether the medical treatments or tests were medically necessary or experimental or investigative.

The case is GLIBOWSKI VS. US OFFICE OF PERSONNEL MGMT., 09-CV-1039MCA (US DISTRICT COURT, DISTRICT OF NEW MEXICO).

The case is sealed.  However, attorney William L'Esperance has filed the case and outcome with the United States Federal Courts to set precedence to aid all Lyme disease patients in lawsuits against their insurance companies, and OPM, for not covering the ILADS guidelines or Dr. Burrascano's guidelines in treatment of Lyme disease.

What does this mean to each of us?

1. The door has opened for Lyme-treating doctors to accept insurance -- once all is established in U.S. Federal Court.  (I will keep you posted about the advance of this outcome.)
2. You may now sue your insurance company for past bills not covered or reimbursed by insurance.  The OPM cannot hold you back -- in other words, the IDSA'S guidelines are no longer accepted.

To contact our hero, attorney Bill L'Esperance:

e-mail:
walesperance@wwdb.org

snail mail:
William L'Esperance, Counselor at Law
P.O. Box 90668
Albuquerque, NM 87199

William L'Esperance does not want to take on new clients.  He is willing to be a resource for out-or-state attorneys handling similar cases.

Please send notes of thanks to our hero, Bill L'Esperance.We are winning the battle --
One step at a time --

Judith Weeg, President LDUC
Office: 800-311-7518
Fax: 888-746-3810
E-mail: Lymeinfo@LDUC.org  
Website: www.LDUC.org
P.O. Box 86
Story City, IA 50248

Our Motto: "Whoever destroys a soul, it is considered as if he destroyed an entire world.  And, whoever saves a life, it is considered as if he saved an entire world."  [Talmud]

My Post to the Katie Couric show

At the end of the Catie Couric show yesterday afternoon (Oct 9, 2013), she invited anyone interested to 'keep the conversation going' by going to her site and telling our stories, etc. Here's what I sent in. So far I can't find it listed among the more than 1200 comments that are rolling in. Perhaps it was too long, so I'll post it here for anyone who's interested in reading it...

Dear Katie,

Thank you so much for covering this difficult topic on your show, and being so genteel yet also bringing both sides of the controversy together so adeptly.  You and your staff chose your guests well.

I want to share with you my story, and a few opinions after dealing with Lyme issues for a decade.

I grew up in eastern Pennsylvania, and often worked and played in the woods. Woods and deer surrounded our house. I worked as a surveyor's apprentice and for a tree surgeon as summer jobs. Thus, it was not uncommon to have ticks on me after a day's work. 

I am now 60 and live in California, where I have been since 1977. At ages 18, 30, and 50 I had major meltdowns. My symptoms were feelings of pressure in the neck and head, insomnia, depression, and anxiety, mostly. Age 50 was the worst. The other two events lasted 1-2 year, and eventually self-corrected.

But at age 50, I did not recover, and I was incredibly ill. My mind went haywire to the point where I had to go to psychotherapy every day for a month, at the outset, just to prevent me from committing suicide.

Alan MacDonald, MD writes to Katie Couric, after her Lyme show

Dear Katie,

Infections of the Borrelia complex are plural, chronic, and recalcitrant to short therapies in many patients. Lyme is an outmoded label for this plurality of public health issues and the word "Lyme" leads to oversimplification of regulatory thinking about pluralities of actual diseases in the human host.

These conceptual voids lead to under-diagnosis, under-treatment, and under-reporting of actual human disease cases. Morbidities from chronic borreliosis - complex diseases and mortalities are not properly diagnosed or recorded by the Centers for Disease Control.

Politicization of these medical entities has become codified and entrenched by
rules promulgated by the CDC and the Infectious Disease Society of America (IDSA). Proper diagnosis and proper treatment of borreliosis complex diseases must be individualize to manage each patient. Central Dogma was rethought and discarded in the early years of DNA science. The AIDS conundrum was only solved by rejection of the Central Dogma and the awakening to the idea that the AIDS virus and other Reverse Transcriptases produced disease by reversal of the Central Dogma of DNA. These were unimagined by the CDC.

Statisticians in Atlanta Georgia, and "rules" about Haitian diseases did not lead the way in the management of the worldwide AIDS crisis.

The exposee "And the Band Played On" lighted the way for a pathway to truth which had been steadfastly spurned by the CDC. Presently the CDC is spurning knowledge about the Borreliosis/Lyme epidemic. Doctors of philosophy prevail over doctors of medicine in the inner  workings of the Centers for Disease Control. Only doctors of medicine are obligated to solve individual patient health problems.

Let the doctors who actually take care of patients practice the healing art, without encumbrances by doctors of philosophy and statisticians.

Alan B. MacDonald, MD, FCAP October 9,2013

RESEARCHER BIO 
MD, American Board of Pathology Certified in both Anatomic Pathology and Clinical Pathology.
35 years of Hospital Diagnostic Pathology experience in all areas of Diagnostic Pathology
of Benign, Infection, and Malignant diseases of humans. 30 Years of experience with Borrelia Research, at the level of Bench research in a biosafety Level 2 Microbiology, and experience with Ultracentrifugation, Pulsed Tangential Alternating Field Electrophoresis, Electron Microscopy, In vivo borrelia primary Isolation, borrelia focused Autopsies on Fetal and Human patients, Primary Isolation of borrelia from Frozen Alzheimer Brains obtained from Dr. George Glenner's UCSD Brain Bank, Primary Isolation of borrelia from Autopsy Alzheimer's Disease brain in community hospital practice, PCR study of the Flagellin B ORF of Borrelia burgdorferi, DNA sequence analysis of PCR products for FLAGELLIN B  DNA from AD frozen tissues from tbe Harvard Mclean Hospital Brain Tissue resource Center, Development and validation of Borrelia-specific DNA probes for Flagellin B, and for the inner cell membrane of Borrelia burgdorferi species BB0060., confirmation that biofilms of Borrelia exist IN VITRO, and extension to IN VIVO Borrelia biofilms in human bacterial Endocarditis, various Cutaneous borrelioses, and Neuroborreliosis.

Chronic Lyme on Katie Couric, Oct 9

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Dr. Horowitz talks Lyme with Katie Couric  Watch top LLMD & Lyme survivor on Oct. 9 show Dr. Richard Horowitz, one of the nation's leading Lyme-literate MDs, will discuss chronic Lyme on the Katie Couric show on Oct. 9.  Horowitz has treated more than 12,000 chronic Lyme patients and is the author of the forthcoming book Why Can't I Get Better: Solving the Mystery of Lyme and Chronic Disease. He is joined on the show by Lyme survivor Kelly Downing.  Click here for more about the program and for local listings.  Horowitz also coming to San Diego Lymewalk He'll join other speakers at Oct. 19 rally Dr. Horowitz joins a line-up of speakers at the San Diego Lymewalk and Rally, on Oct. 19 (next door to ILADS medical conference.)  Others include Lyme researcher Dr. Eva Sapi; The Lyme Policy Wonk, Lorraine Johnson; Lyme survivor/TV personality Brooke Landau, and more.  Dr. Horowitz will also bring advance copies of his book. (Not available elsewhere until November.) Click for more info about this event. LymeDisease.org, publisher of The Lyme Times, advocates nationally for people with tick-borne diseases, educates the public, and helps fund medical research. We are the go-to source for news, information, and health policy analysis in the Lyme community. Become a member today.

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