Sunday, April 8, 2012

Bait and Switch

Lyme advocacy groups along with "their" doctors have been called anitiscience in a recent Lancet editorial. According to the piece the group is part of a greater conspiratorial movement promoting an agenda, allied with groups who deny that AIDS is caused by a virus or that vaccines are effective.

The agenda of the group, including physicians and scientists from many disciplines, is to stridently advocate for a group of frequently desperate sufferers ignored and marginalized by a failed system hiding behind a banner of science.

Science is a systemic enterprise that seeks to uncover truths and predictions about the universe which can be tested in some reproducible manner.

Science and advocacy groups are both after truths.

Science is not static, it is always a work in progress.

Now, I have just completed reading a book called: " Borrelia, Molecular Biology, Host Interactions and Pathogenesis."

The otherwise excellent text, comprehensive according to the authors, is dogged with non-science politics.

In the preface: "The field of Lyme disease research has been under assault from self proclaimed 'Lyme literati' that have used misinterpretations, misrepresentations, and bold fabrications to promote their ill-conceived and self-serving agenda... This book is intended to dispel accusations that scientists have conspired with their clinical colleagues to conceal from public view the 'real truths' about Lyme disease and its aetiological agent."

The book has chapters on genetics, metabolism and physiology, structure and function, evolutionary biology, ecology, tick interactions on other clinical issues, but none on the ill-conceived notions of "literati."

In point of fact, much of the information supports many of the conspiratorial underpinnings of literati party line. Much of the text helps elucidate intricacies of the microbe's unique ability to evade the immune system.

The first chapter recapitulates the seminal work of Steere which helped uncover the underlying cause of a mysterious epidemic of arthritis. The text states that, "The enlarging investigation revealed that approximately on-quarter of the patients had developed an erythematous cutaneous lesion that in some cases appeared to expand into reddish, often annular, concentric rings.

In contemporary times the literati and the their compatriots who have felt that EM rashes occurred in less than 50% of cases have been emphatically chided by the IDSA types who have claimed EM is nearly always present.

The claim that Lyme advocates don't believe in vacccines has an antecedent. In the introductory chapter it is said the LYMErix vaccine was pulled because of poor market penetration and not because of issues related to effectiveness or safety. Apparently advocacy groups had a meeting with the FDA raising concerns about the vaccine. The groups are accused of mucking up the waters in the face of scientific facts. In the chapter "Lyme disease vaccines," different circumstances are observed. The auther here notes that the class action law suit may have been meritorious and that some evidence supported the claim the vaccine could lead to antibiotic-refractory arthritis especially in certain genetic groups.

According to the text: Bb is suited for extended or indefinite survival in mammalian hosts. The illness is associated with very low levels of bacteremia with primary tissue localization of the bacteria. Bb has a prediliction for certain organs/tissues. A hallmark of infection is the induction of a powerful imflamatory response despite a paucity organisms. The bacteria adhere to extraceullar matrix proteins. The bacteria has a specialized diderm membrane and a powerful flagellin which helps propel it deep into tissues, along and through endothelial cells. The bacteria can penetrate deeply into avascular cartilage and collagen. Bb can sequester in protected niches included tendonds. Bb is a sophisticated parasite, effectively co-opting host nutrtients and metabolites. Bb does not utilize oxygen or iron and metabolizes glucose via an alternative pathway. Bb is slow growing, fastidious, difficult to culture. Unique surface proteins play a role in bacterial survival. Lyme can readily change its antigenic appearance to avoid humoral antibodies. In mice, dogs and monkeys treated with extensive courses of antibiotics the organisms persists after 6 or more months. The disease can be seronegative and treatment refractory. Currently available testing modalities, including the two tier serological are limited. Symptoms of the disease can be non-specific and vary over time. Neurological disease is protean. Some patients have a syndrome of fatigue, cognitive changes and mood changes. Coinfection with Babesia has been established and may make the illness worse. Bb do produce blebs and cystic forms. Cystic form express different antigens and may promote resistance to the immune system and antibiotics. Intracellular infection has been observed athough thought to be rare by most researchers. Lyme is still a new and emerging disease. Although much is known, the science of Borrelia is still new and emerging as well.

The book is a superb source of basic scientific knowledge and I know I will be re-reading many chapters in the coming months.

The literati and the "cognoscenti" may agree on more than is commonly recognized. That is not to minimize the enormous gap between the two sides of the Lyme debate.

The text does not deliver as promised at the outset. It fails to show that literati have some self-serving agenda - apparently one of fleecing despartely ill patients, or hypochodriacts, but certainly folks who do not suffer with manifestations of borreliosis. Accusations of paranoid conspiratorial thinking and ethical shortcomings appear to be sophmoric.

Only a few odd statements and the final verses address the initial premise. The notions of chronic Lyme disease is dismissed. First off: "in order for spirochetes to persist without provoking discernable inflammation or an immunological response manifested by detectable serum antibodies, B. burdorferi would have to differ from virtually every other chronic systemic bacterial pathogen." And secondly, it is asserted that treatment of Lyme patients resolves the infection.

Actually The body of the text, the science such as it is, does not support either of these contentions

12 comments:

Joanne said...
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Joanne said...

From the IDSA perspective but
The slide at 33:54 about the characteristics of Spirochetal diseases is especially interesting:

- Spirochetal diseases are CHRONIC
- Spirochetal diseases can last over 30 years
- Spirochetal diseases have a Relapsing-Remitting pattern of clinical manifestations
- Spirochetal diseases are systemic

http://www.youtube.com/watch?v=TR-aY_S8q2E&feature=youtu.be

Joanne said...

One of the authors of the antiscience paper has now retired Dr Sue O'Connell so here's hoping with all the changes things start moving in the right direction here in the UK at least the recent recognition of Tick Awareness week by HPA was a start details on LDA webiste of changes http://www.lymediseaseaction.org.uk/

Unknown said...
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Unknown said...

A common tact in politcs is to produce vast amount of 'established facts' then to give a conclusion completely unrelated to the 'facts'. Because it is a rare individual that will read the entire text and remember enough of it to refute the conclusion.
If it is written, it must be true mentality takes over. The overser of this book either didn't have a clue or didn't actually read all of it or both.
Even in the courtroom the jurors are often burried in 'facts' that muddy the truth so bad that an accurate conclusion cannot be reached.
It sounds like this bood is written so from the descritpion and where have we seen such tactics related to lyme?
The question we need to ask ourselves is "WHY?" Not to beat up on the falsehoods given. Why is it so important for these political organizetions to hide what is going on? Until that is known, it will continue unchecked.

CJ Ocean said...

Thank you for this blog! I would really like to consult with you- my email is chris@spiritcurrent.com. My story in Brief: I started having a very mysterious back pain a little over a year ago (Jan 2011) at the age of 29- I was very healthy, fit and had no specific injury that had caused it and nothing seemed to make it better. Then, after pains started to move all over my body- I went to the doctor and they ran a bunch of tests (not including lymes) and I tested positive for infectious Mono (April 2011). This became my diagnosis- although it really didn't explain the back pain. I've dealt with fatigue, acne, muscle aches, hair loss, insomnia, fevers, chills, weird nerve stuff, anxiety, spasms, brain fog and more- it's been a hard year. About a month ago my Dad suggested I get tested for lymes and once I started researching it I found out I had all the symptoms and it even explained the EBV reactivation (had mono as a kid). I tested equivocal on the CDC ELISA and Negative on the CDC Western Blot (IgG). I just got my IGENIX results back- Negative for IGG (with 18+ and 41+) and Positive for IgM (31+, 41+, 66+, 83-93+) I probably acquired this in California or maybe Minnesota- but I moved to Hawaii in the past year and there are no Lyme Literate MDs here. I have a very intelligent Lymes literate Naturopath, but she's not a specialist and doesn't have a ton of experience because there supposedly isn't any Lymes in Hawaii. Again, I'd really like to consult with you or have you consult with my Naturopath so she can treat me. I've been on Doxy for a couple weeks and I'm doing herbal support, but I need an expert. Also, if you don't consult- maybe you know of someone who does. Thanks again! Aloha.

Camp Other said...

I have read this book, having gotten it on loan for about a week. Unfortunately I wasn't able to finish it and get through all of what I wanted, but based on what I did read, I agree with your assessment that the book's actual content supports a number of statements those of us who have persisting symptoms have made - yet the few injected comments relating to controversy and the politics of Lyme stood in opposition to the content.

I think the reason this book is such a mixed bag is that there are multiple authors working on it, and they are paired up to write different sections of the book. The positions of the authors vary anywhere from open minded about what Borrelia burgdorferi is all about and admission of there being many unknowns - to being single-minded and judgmental about what this bacteria can and cannot do.

Some of the authors are more closely affiliated with the IDSA guidelines group, and some of them are not. In some ways, that affiliation is even lose and difficult to judge in terms of researchers' positions... Dr. Stephen Barthold has had some affiliation with IDSA members; he was at Yale - and yet, he has at least appeared open-minded to the possibility of persistence of spirochetes via sequestration - and now, one can probably add persister cells as a possibility to that list via the Embers' Rhesus Monkey study.

The lines drawn in the sand are not always so clear as they first appear. Sometimes they are muddy. I think the most important work that needs to be done is research by scientists who are open minded yet not gullible - people who are willing to discover the truth and not let bias from either side of the controversy cloud their judgment.

I too am tired of those of us who are suffering patients and advocates being painted with the same brush as other groups which are viewed as "fringe". There are some folks within the Lyme community who seem to emphasize their conspiracy theories above anything else in the discussion about Lyme, and they are a minority - but a vocal minority which sometimes gets in the way of working towards any middle if one can be found.

We need more balance. Does anyone know how to achieve it?

A Hudgins said...

Did you hear that Time for Lyme changed its name to Lyme Research Alliance, and will be the research arm for the newly formed TBDA!

Unknown said...

Thank you for this post. It is wonderful to see a doctor review some of the scientific material on Borrelia and then question the conclusions drawn.

I have read a few of the more infamous studies and the conclusions don't always make sense with what the study actually did. I have trouble understanding how such "prestigious" researchers can follow such convoluted logic.

Are there any studies in progress with the new advanced-labs culture test? Shouldn't this test be able to mostly solve the disputes about test interpretations and persistent infection?

keylymepie said...

Hello!

I've been reading all of the archived blog posts and I find them to be really helpful!

I am wondering if you've ever had a patient whose liver enzymes continuously rise with antibiotic use and do not respond to typical lowering methods such as NAC, ALA, glutathione IV, silymarin, detox teas etc.

If so, what do you do for them? Particularly if their symptoms are fairly severe, herbs have not been very effective and they are co-infected. Are you able to find a way for them to continue taking antibiotics?

Sarah Graff said...

Hi Doc,

Was wondering if the book covered polymorphisms? There is a new study out that suggests single nucleotide polymorphisms can contribute to the inflammatory response in some patients:

http://onlinelibrary.wiley.com/doi/10.1002/art.34383/abstract;jsessionid=BBF17E37FF6F3ADDDD23F758DEC3EDA2.d02t02?userIsAuthenticated=false&deniedAccessCustomisedMessage=

Genetic screening for Lyme susceptibility -- an intriguing idea.

Sincerely, your fan in Grenada ;)

worriedmom said...

I liked what that Harvard guy said at the NAS IOM BPH, "...progress is made one death at a time..." as he looked at his colleages.