Additional letter to Dr. Shapiro….
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------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, eugene.shapiro@yale.edu
Cc: 98 (Undisclosed Recipients)
Date: June 6, 2019 at 8:59 AM
Subject: Requesting expert opinion from Dr. Eugene Shapiro
June 7, 2019
Yale Pediatric Infectious Disease
Yale New Haven Children's Hospital
1 Park Street, Ste West Pavilion - 2nd Floor
New Haven, CT 06504
Attn: Eugene Shapiro, MD Professor of Pediatrics
Dr. Shapiro,
As an “expert” in Lyme disease perhaps you could explain to the Working Group how Lyme disease disables its victim. In other words, what happens to the Lyme patient left untreated for months, years or decades due to a false negative Lyme test, missing erythema migrans (Bulls-eye rash) or misdiagnosis? Dr. Neil Spector’s Lyme disease infection went undetected for four years requiring a heart transplant. https://www.bayarealyme.org/blog/story/neil-spector/
For some unknown reason the focus over the past three decades has been on the acute stage of Lyme after early treatment.
For example:
Subjective symptoms after treatment of early Lyme disease.
https://www.ncbi.nlm.nih.gov/pubmed/20102996
Gary Wormser, New York Medical College
(Financed by the U.S. Centers for Disease Control)
RESULTS:
“At 12 months after enrollment, only 5 (2.2%) of 230 evaluable patients reported new or increased symptoms, and in none of the patients were these symptoms of sufficient severity to be functionally disabling”
_____________________________
Summary of Wormser’s study: Anyone experiencing symptoms after the one-size-fits-all treatment approach is just experiencing nothing more than the “aches and pains of daily living.”
So basically Wormser’s results are then assumed to apply to the entire patient population; in other words, Lyme is no big deal which has wrongly influenced our nation’s response to this serious life-altering health threat. The research into how Lyme disables should have been completed by now but the misclassification of Lyme as a simple nuisance disease (hard to catch and easily treated) has paralyzed the response to this runaway plague.
Many infections as I continue to point out evolve into an entirely different and serious life-altering/life-threatening disease when left untreated.
Focusing on the acute stage has categorized Lyme disease as a low-risk and non-urgent health threat effectively eliminating the funding necessary to find a cure for this antibiotic resistant/tolerant superbug. Ignoring the late stage Lyme population hides the horribly disabled and anyone unable to see this is somewhat naive.
We have an epidemic of ruined lives as these patients are left to fend for themselves.
Please hit “Reply All” when responding to this inquiry as I am sure everyone in the Working Group is eager to acquire your expert opinion.
Respectfully submitted,
Carl Tuttle
Lyme Endemic Hudson, NH