WHAT THE IDSA WON'T TELL YOU...PT 1

"Lyme disease represents a growing public health threat. The controversial science and politics of Lyme disease have created barriers to reliable diagnosis and effective treatment of this protean illness"
                                                               ~DR R STRICKER

The political battle over Lyme disease features two polarized Medical camps: 


IDSA - Infectious Disease Society of America; responsible for writing the guidelines that currently govern the diagnosis and treatment of Lyme Disease. the IDSA adheres to the philosophy that the disease is ‘hard to catch and easy to cure’, and that chronic infection with Borrelia burgdorferi, the spirochetal agent of Lyme disease, is nonexistent. 


ILADS - International Lyme and Associated Diseases Society; a multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS views Lyme disease as an under reported and growing menace that often fails to respond to standard antibiotic therapy, resulting in a chronic debilitating infection that requires prolonged antibiotic treatment


the IDSA guidelines on the diagnosis and treatment of lyme disease are rife with controversy and conflicts of interest. through medical collusion, faulty testing and fraudulent science the IDSA and the CDC have managed to keep a tight rein on ensuring the truth is buried.


the IDSA call their guidelines "evidence based" yet they suppress the results of their own trials and studies that actually provide scientific evidence that flies in the face of and is contradictory to their own guidelines. furthermore, those results were occluded when writing the guidelines.



WHY, as canadians, should we care about IDSA guidelines? after all they are american. 

• because canada has blindly adopted the IDSA guidelines as their own and uses them to deny treatment to patients infected with lyme.

HOW exactly does the controversy - over testing and diagnosing lyme - spill over into canada and impact canadians? (there are several areas, but i've highlighted the following in this post)

• the CDC and IDSA , continue to staunchly insist that the Lyme enzyme-linked immunosorbent assay (ELISA) is the ‘preferred method’ to diagnose Lyme disease due to its ‘sensitivity, adaptability to automation and ease of quantification (counterpoint) . therefore, in both the USA and canada, the ELISA is the standard used to either exclude or include the diagnosis of lyme disease. yet, multiple clinical trials and studies report the ELISA is inaccurate. for example, the American College of Pathologists used human sera to test the accuracy of 516 different laboratories ELISA tests nation wide, the overall accuracy was only 45%. 

it is quite a daunting task to delve into all of the plethora issues at hand. it's going to take multiple posts to shed light on the inaccuracy of the testing, disputed treatment lengths, conflicts of interest, flawed guidelines, vested interests of insurance providers, and the role that economics play into all of it. even then, it'll just be the tip of the iceberg. at best, i will only scratch the surface. that being said, i'm rolling up my sleeves and ready to tackle the issues at hand.


WHY, aside from the obvious impact of the controversy of lyme on my family, do i feel compelled to shed light on what the IDSA won't tell you? the answer is two-fold;

FIRST - because i am ABLE. 

prior to my diagnosis, i was unable to count to 10, remember how to sign my name or recall the names of my kids.  i still had severe cognition difficulties after receiving the 3 month course of IV treatment recommended by the IDSA guidelines which suggest that further treatment would be of no benefit as stated in the Clinical Practice Guidelines of the IDSA;

"Prolonged Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic subjective symptoms after recommended treatment regimens for Lyme disease." 

simply put, i am ABLE because long term IV abx treatment - beyond the stringent IDSA guidelines - restored my cognitive abilities.

SECOND - the appearance of the IDSA representative, dr paul auwaerter, on the dr phil show, and his denial of the existence of chronic lyme prompted me to do a bit of digging on this doctor. the results of my subsequent investigations have left me outraged.  

here's a jaw dropper, dr paul auwaerter was part of a research study at johns hopkins - Two-Year Evaluation of Borrelia burgdorferi Culture and Supplemental Tests for Definitive Diagnosis of Lyme Disease - and the conclusion of this study?


"In accordance with the results of other studies, simple application of acute-phase serologic tests was very insensitive (45%)"

which leaves me wondering....

if you don't have an accurate test that can identify the infection in the acute (early) stages of the disease, how in the world can he (or the IDSA) adamantly insist that a persistent form of the infection does not exist?





the IDSA's own studies have concluded the ELISA is inaccurate. yet, inspite of the findings of their own studies and controlled-trials the IDSA, NIH, the USA CDC and our own canadian BCCDC continues to rigorously defend that the ELISA is the 'gold standard' and 'state of the art' testing for lyme.


indeed, it has been my own personal experience that the (seemingly militant) enforcement of the IDSA's testing protocols and treatment guidelines in canada culminated in forcing me (& other desperately ill patients) to seek (emergency) treatment for my lyme infection in the USA in may of 2008.


the following news clip is from may 2008;








sadly, little has changed since 2008.

here we are 4 years later, and canadians are routinely denied treatment based on the same faulty diagnostic testing protocol and flawed treatment guidelines.


here we are 4 years later, and we're re-living the nightmare of this denial with our son...


the medical establishment has concluded that our son can't possibly have lyme because his canadian ELISA was negative. furthermore,  they continue to subscribe to the IDSA's widely held opinion that "chronic lyme disease does NOT exist". 


and it is based on that "evidence" and "opinion", that they deemed our son's medical treatment unnecessary. they took it one step further when they, in a shockingly, horrifying twist of events, interfered with his USA treatment (of which is prescribed by his board certified american physician who has been his primary care physician since 2010). the result? the removal and blockade of our son's USA prescribed IV treatment.


our family's experience points to an incredibly troubling and terrifying reality - the climate in Canada surrounding the diagnosis and treatment of lyme disease has only grown more hostile and in our experience, citing the IDSA guidelines, they will override the prescribed treatment of another physician.


and that is why we, as canadians, should care about what the IDSA won't tell you.


more to come - stay tuned...








excerpts and information from following resources:
http://www.lymemed.nl/discussie/point&counterpoint.pdf
http://www.canlyme.com/labtests.html
http://www.personalconsult.com/articles/underdiagnosed-lyme-disease.html
Clinical Practice Guidelines of the IDSA
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1248466/