Lyme war: hotter than ever

The war over Lyme disease is perhaps only getting hotter. Numerous articles have been published in the last couple of years; many have been editorial in nature and have strongly touted the IDSA point of view. A piece written by Paul Auwaerter in 2012 published in “Transactions of the American Clinical and Climatological Association” is exemplary of this trend. Some important and relevant issues are covered in this pseudo-erudite, sarcastic editorial  -- masquerading in the guise of academic medical evidence.  Here the IDSA is strongly pressing its case while deriding phony LLMDS who mendaciously contend they are the only ones who truly understand the disease.  I personally do not like the term LLMD because both sides are generally very literate with regard to Lyme disease literature. Naturally each side cherry pick the data which supports their a-priori view. Of course I believe their viewpoint is dangerously wrong.

It is asserted that chronic Lyme disease is the diagnosis of the day, the soup du jour,  used to fill in a vacuum, to explain chronic maladies poorly understood by medical science. In typical fashion, chronic fatigue syndrome and fibromyalgia are trudged out as disorders erroneously attributed to Lyme disease. Lyme and other infectious diseases before it have been erroneously posited to fill the vacuum of poorly understood chronic illness according to the author. An historical list, ostensibly discredited, of infectious agents previously used for the same purpose are said to include: brucellosis, Epstein-Barr virus, candidiasis, toxic mold and others. The assumption here is that chronic Lyme disease will be replaced with some other entity in the future when the next best thing comes along.

The author states that the LLMDs and their community have created a phony world of bad doctors, bad research, poor publications and meetings to promulgate cockamamie theories and that a thin veneer of pseudoscience is used to unfairly and unwisely promote political agendas. Physicians who stand outside the narrow paradigms of the IDSA are labeled as unethical

The assumptions of the IDSA have been challenged as of late. This is nothing new. In "Contemporary Clinical Trials" in 2012, Delong published a biostatistical review of four clinical trials,(the cornerstone of the IDSA worldview) which clearly refutes the conclusions drawn by the IDSA from these studies. The new analysis shows there is evidence of beneficial effects of the treatments given in the studies.

This assessment was of course later challenged by the cadre of: Klempner, Baker, Shapiro, Marques, Dattwyler, Halperin and Wormser who not surprisingly, vehemently disagreed.

The most recent of the 4 studies was published in "Neurology" in 2008. Patients were treated with 10 weeks of intravenous ceftriaxone. Evaluation of the subjects at 12 week showed significant improvement in neuro-cognitive function and improvements in quality of life measures including fatigue, pain and impaired physical functioning. At 24 weeks the cognitive improvements were not sustained but the improvements in physical functioning were.

Apparently, Dr. Fallon, the lead investigator of the above mentioned study  is not enamored with the way these study results are being bandied about.  In "Open Neurology Journal" in 2012 he states that posttreatment Lyme disease improvements in patient outcomes were demonstrated in 2/4 of the NIH sponsored studies. He concludes:  “While repeated intravenous therapy can be effective, safer modes of delivery are needed.”

The IDSA continues to maintain that two-tier testing for Lyme disease is accurate. This is an important part of the narrative repeatedly used to prove patients do not have Lyme disease. In the "European Journal of Clinical Microbiology and Infectious Disease" in 2011, Ang et al tested 8 different ELISA systems and 5 immunoblots and found no consensus whatsoever amongst these various IDSA endorsed and FDA approved tests. This precious test, promoted to the hilt,  is not accurate.

The counter paradigm regarding Lyme disease is in fact steeped in science. Animal studies in mice, dogs and primates have shown that established Lyme cannot be fully eradicated from the host. Many unique, survival enhancing properties of the microbe in-vitro and in-vivo, have been well described in medical and scientific, peer-reviewed literature now over a period of decades. The assertion that groups like ILADS manufacture evidence is fabricated from whole cloth.

IDSA proponents  believe that notions of chronic Lyme disease reflect some type of mass hysteria fueled by bad science and the internet.  A frequent mantra oft repeated to my patients has been:  "if you only did not read the internet everything would be fine." If only it were true.  Lyme patients are misdiagnosed, disenfranchised, marginalized and dismissed by a medical system which is all to quick to labels them as crazy rather than sick.  The diagnosis of Munchausen's by proxy was used by a hospital in an effort to legally remove a sick child from loving parents. (This occurred to a patient I have evaluated).

Lyme disease is not a fad as the editorial states. Unfortunately it is here to stay. The epidemic has been increasing in prevalence and severity since the 1970s.

The treatment of patients suffering with this unseen plaque is challenging. Each case is different. Multiple factors influence the presentation of the disease. The scope of the illness ranges from mild to deadly.  Some factors seem random. Others are environmental or genetic. There are variant strains of Lyme which may play out differently. The contribution of co-infections with Babesia and other bacteria plays an enormous role.

Lyme war:
 
On one side, the fight is largely political. On the other it is largely professional. Well respected "experts" - the names mentioned above, and others, are using the full weight of regulatory authorities, prominently Medical Boards or other quality review organizations such as those working for health insurance companies, over whom they have much influence, to eliminate their adversaries:  physicians who do not agree with or practice by their standards.

Unfortunately we cannot have a civil disagreement about two paradigms and two standards of care. No. And that really stinks.