An excellent program discussing Lyme Disease was on the Diane Rehm show.
Dr Paul Auwaerter associate professor of medicine, Johns Hopkins University School of Medicine
and clinical director, division of infectious diseases.
Johns Hopkins Hospital
Dr. Samuel Shor internist, private practice and associate clinical professor at George Washington University.
Dr. Brian Fallon professor of clinical psychiatry.
director, Lyme and Tick-Borne Diseases Research Center. and
director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine
Stephen Barthold professor,department of pathology, microbiology and immunology
Center of Comparative Medicine at the School of Veterinary Medicine, University of California, Davis
Dr Auwaerter attempts to defend the position of the IDSA and Stephen Barthold tries not very hard to convince us that although infection persists after 3 months of antibiotics that doesn't prove they cause disease. Earlier post here about that study.
Dr Fallon and Dr Shor eloquently discuss their experiences with patients with chronic Lyme Disease and as Dr Shor says until science has figured it all out all doctors can do is go off how their patients respond, many but not all respond well to longer courses of antibiotics.
Dr Shor refers to his study on patients with ME/CFS finding that many of these patients met a clinical diagnosis of Lyme Disease he treated with antibiotics and found 88% responded well to that treatment.
I have posted about that research earlier here
I have also posted about Dr Fallon's presentation to the Institute of Medicine Workshop here
Perhaps things are beginning to unfold at last and with the latest research here it is going to be very difficult for the IDSA to maintain their current postion of denial of Chronic Lyme Disease.
An interesting on line chat with Phil Baker can be read in the comments of Lyme Policy Wonk blog here
'Philip J. Baker, Not a M.D., was for ten years the Program Officer for the NIH overseeing Lyme disease research grants. An overwhelming proportion of these grants were awarded to a few favored members of the Infectious Diseases Society of America (IDSA) who authored the controversial 2006 IDSA Lyme disease guidelines.'
The latest two points say it all for me
On the precise definition, I agree with you –especially now that we have so much more information on infective strains, on proteomic patterns (Schutzer), and even on persisters. One could come up with a definition that was far more precise than anything used in the NIH studies today…. I am completely on board. Be precise and let the chips fall where they may.
But I think you might agree with me that we are not talking JUST about Lyme disease, chronic, acute or otherwise.
The definitions must be precise, but alternatively, here, the net should be cast wide to see what we are dealing with, really. These days you can do high-volume pathogen discovery rapidly and to great precision, something impossible in the days that Klempner did his work. Similar technologies discover chemokines, cytokines, and the like –hundreds of molecules involved in the immune cascades, much of it automated today. Who knows what we might find? But if you are looking for one thing, only, in this situation your hands are tied. This is not 1980, it is not even 2000. We can do much more.
I can’t imagine that you really disagree with this –in fact I think that to some degree, it is what you are saying, yourself, cast the net wide. Be precise.
I find all the NIH studies vague to one degree or another, and I think we can do better. We can be more precise, more specific, more wide-ranging. It is imperative to do better, because so many remain ill. Whatever the answer, for anyone to claim they see some version of ultimate Truth in the Klempner study is absurd. We must move on.
Hear, hear, Pam. No one should be making sweeping conclusions based on the clinical trials that have been done so far. We need to give evidence-based – not opinion-based – guidance to doctors, including acknowledging where the evidence is inconclusive. Just because chronic Lyme has not been defined does not mean it does not exist. And until the day comes when we have a sure cure for Lyme, we need to give patients choices and let their doctors freely use their clinical expertise.