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