Please see the letter below sent to FAIR Health as a follow-up to yesterday’s update. FAIR Health has acknowledged these two emails but reminded me that they do not take positions on public health or policy issues and limit themselves to reporting findings from their data collection.

Their data collection shows that we have an epidemic on our hands which has been spiraling out of control for decades.

Lyme disease support groups are found in every state across America helping patients navigate a broken healthcare system that doesn’t recognize treatment failure; an epidemic where patients who fail the one-size-fits-all IDSA treatment mandate are left to fend for themselves.

So this exercise was to educate the executives at FAIR Health so they see that there’s nothing FAIR about treating Lyme disease here in the United States. A copy has been sent to the TBDWG.

--------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: sarar@gwu.edu
Cc: gelburd@fairhealth.org, info@fairhealth.org, mmakary1@jhmi.edu, lewis.first@uvm.edu, Alex.Kemper@nationwidechildrens.org
Date: December 9, 2019 at 11:13 AM
Subject: Neurologic Manifestations in Children With Lyme Disease

PEDIATRICS
Official Journal of the American Academy of Pediatrics
 
Neurologic Manifestations in Children With Lyme Disease
Peter M. Bingham, Steven L. Galetta, Balu Athreya and John Sladky
Pediatrics December 1995, 96 (6) 1053-1056;
https://pediatrics.aappublications.org/content/96/6/1053
 
 
Dec 9, 2019
 
Fair Health
530 Fifth Avenue, 18th Floor
New York, New York 10036
ATTN: Sara Rosenbaum (Chair)
 
Dear Prof Rosenbaum,
 
In this 1995 Pediatrics publication the bulls-eye rash was seen in only 27% of pediatric neurologic Lyme disease patients; so up to 73% of neurologic Lyme may be falling through the cracks.
 
The absence of a bulls-eye rash after tick bite allows patients to progress to severe neurological disease instead of obtaining a prompt diagnosis and early treatment. Humans do not produce detectable antibodies to Lyme disease for 4-6 weeks after a tick bite. By the time serology tests are positive, the spirochetes have already invaded various deep tissues, like those in syphilis, and are hard to eradicate with antibiotics.
 
The vast majority of patients never develop the bulls-eye rash and therefore miss the narrow window of opportunity for successful short term treatment often times going years before diagnosis. There has been a deliberate effort on the part of the CDC to ignore the growing number of disabled patients and focus only on the acute stage of the disease with bulls-eye rash distracting and confusing a nation of intelligent physicians to the point that many believe Lyme is little more than a nuisance disease.
 
How many children over the last two decades since this study was published have been denied treatment because of the missing bulls-eye rash through an elaborate scheme to downplay the severity of Lyme disease by the defendants of the Lisa Torrey vs IDSA racketeering lawsuit?
 
The misinformation has been published through all medical sources…..
 
Here are some examples:
 
Centers for Disease Control and Prevention
 
1. Signs and Symptoms of Untreated Lyme Disease
https://www.cdc.gov/lyme/signs_symptoms/
 
“Erythema migrans (EM) rash (see photos): Occurs in approximately 70 to 80 percent of infected persons.”
 
American Lyme Disease Foundation
 
2. Is it Possible to Make a Valid Diagnosis of Lyme Disease Based on Symptoms Alone?
https://www.aldf.com/?s=80%25
 
“…individuals living in endemic areas and exposed to ticks may develop a “bulls-eye” or erythema migrans (EM) rash that may be sufficiently pathognomonic for Lyme disease to justify antibiotic therapy with no additional testing; however, such a rash is present in 70-80%

Infectious Diseases Society of America (IDSA)

3. Ten Facts You Should Know About Lyme Disease
https://www.idsociety.org/public-health/lyme-disease/lyme-disease/10-facts-about-lyme/

"The most common symptoms of Lyme disease include a red, circular “bulls-eye” rash often accompanied by muscle and joint aches. About 70 to 80 percent of people infected develop the rash, which shows up several days to weeks after the tick bite."

WebMD
 
4. Lyme Disease Slideshow: Symptoms, Causes & Treatments
https://www.webmd.com/arthritis/ss/slideshow-lyme-disease
 
"A circular, expanding rash (called erythema migrans) at the site of the bite develops in about 70%-80% of cases."

Medical News Today 
 
5. What does a Lyme disease rash look like?
https://www.medicalnewstoday.com/articles/323457.php
 
"In the early stages of the disease, around 70–80 percent of people develop a rash that resembles a bull's-eye."
 
Medscape
 
6. How is erythema migrans (EM) characterized in Lyme disease?
https://www.medscape.com/answers/330178-101023/how-is-erythema-migrans-em-characterized-in-lyme-disease
 
“Eighty percent of patients with Lyme disease have only one episode of erythema migrans”
 
______________________________
 
What is the 24 year motivation for ignoring the findings of this Children's Hospital of Philadelphia neurologic study?
 
It would appear that the “fictitious tutorial” below is not so fictitious after all…..
 
Nine Steps to Deny an Epidemic on a National Level 101
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24443341
 
 
Carl Tuttle
 
Lyme Endemic Hudson, NH

Who is Carl Tuttle?
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/25370013