Tuesday, October 31, 2017

The IDSA perspective, as I see it.


Nothing has changed in the war about Lyme disease.

Lyme disease means different things.   To the IDSA it means acute Lyme disease, the only kind that matters.  To others, including many of my readers, Lyme generically refers to a chronic illness with diverse and unpredictable clinical features associated with tickborne infection, including Borrelia of many potential species (sometimes multiple species or strains), causing borreliosis and typically other tickborne infections, most commonly forms of babesiosis and bartonellosis, causing a chronic illness, the totality of which exceeds the sum of the parts.  

Mainstream medicine, in some cases, begrudgingly, admits to the existence of something called post treatment Lyme disease syndrome, PTLDS.  This is not the second version Lyme disease described above. The term (as used by the IDSA, CDC, mainstream medicine) narrowly refers to patients with clearly defined acute Lyme who were treated with the standard course of antibiotics, generally 3 weeks of doxycycline, and who despite “adequate” therapy went on to develop chronic, vague symptoms.  There is no effective treatment or cure associated with this syndrome. Specifically, long-term antibiotics are not effective and rather poses a significant risk to patients. In addition, if patients do not develop 5/10 positive IgG bands on the 1994 surveillance test, the patient most likely never had Lyme in the first place and therefore the diagnosis was incorrect and the use of long-term antibiotics egregious. 
IDSA experts have angrily disparaged alternative therapies for “Lyme” and have published tirades in prestigious medical journals.  These doctors are not bad doctors. Infectious disease doctors are good at what they do (for the most part).  When a patient in the ICU has sepsis due to Serratia marcescens or Listeria, they know what to do.  When a patient has a life-threatening wound caused by a strange bacterium in the Chesapeake Bay, Mycobacterium or Vibrio species, they are on top of the case. They know how to manage an HIV/AIDS patient with a life threatening systemic yeast infection. This is their Bailiwick. 
The infectious disease specialist are unfamiliar with multisystem diseases. Such illnesses may fall within the purview of rheumatologist, maybe -- but again, such disorders are narrowly described and defined by colleagues in rheumatology who handily dismiss the notion. The patients are given the same treatment by neurologists.  The patients do not easily fit into box A or B and end up with wrong diagnoses such as fibromyalgia or chronic fatigue syndrome. Most patients are dismissed as having a psychiatric disorder and are rudely dismissed, leaving the consultant's office in tears. 
Lyme disease, chronic Lyme, Lyme with coinfections, other iterations as understood in one community, is an entirely differently entity than Lyme defined and understood by the IDSA et al.  Two different paradigms, two different diseases. 
Infectious disease doctor view Lyme and it associated diseases as a germ disorder.  Lyme doctors see a whole person with dysfunction of organ systems and a plethora of symptoms with connections to chronic infection such as Lyme. 

In "camp other", Lyme is associated with:  impairments in immune function, poorly understood autoimmune phenomena, brain dysfunction and inflammation, endocrine dysfunction and many others. Much, much more than a germ only disease. A series of dominos fall each with its peculiar, attendant dysfunction -- hard to put back together -- with treatment requiring, intelligence, an expansive fund of knowledge, intellectual curiosity, empathy for suffering and creativity. 
The IDSA doctors, as a whole, lack the ability to give consideration to the thesis that their ideas may be wrong, or at least partially wrong.
“Imagination is more important than knowledge. For knowledge is limited to all we now know and understand, while imagination embraces the entire world, and all there ever will be to know and understand.”          Albert Einstein
IDSA doctors don’t get the alternative thinking view of the disease even a little. It is too “fuzzy.”  Not in the clearly organized box which make up their medical universe of constructs and ideas. 
Doctors are instructed not to think outside the box. In fact, doctors are discouraged from doing so. This was not always the case. 
Doctors are taught to practice evidence based medicine.  Clinical medicine should be practiced guided by the best available evidence. In theory it sounds good. 
It doesn’t work when there are two schools of thought about a disease and the one school, with strongly held beliefs about the essential nature of the illness, is able to force its views on patients and physicians who have different beliefs and different experiences. 
Who are the deciders?  Who decides: how a disease is defined, its scope of clinical manifestations – its spectrum, the role of laboratory testing, which evidence should be included in the process of critical appraisal and what the evidence means?

When apples are repeatedly compared with oranges, nothing will ever get straightened out. 

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