Petition update

Boston Globe: Is ‘chronic Lyme disease’ real?

Carl Tuttle
Hudson, NH, United States

Aug 27, 2019 — 

Once again we see more “verbal diarrhea” out of Dr. Eugene Shapiro published in the Boston Globe……

--------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: eugene.shapiro@yale.edu
Cc: csears@jhmi.edu, PracticeGuidelines@idsociety.org, tickbornedisease@hhs.gov, chris.smith@mail.house.gov, pfm0@cdc.gov, david.scharfenberg@globe.com, letter@globe.com, jennifer.peter@globe.com, brian.mcgrory@globe.com
(88Undisclosed recipients)
Date: August 26, 2019 at 10:14 AM
Subject: Is ‘chronic Lyme disease’ real? By David Scharfenberg Globe Staff

IDEAS | DAVID SCHARFENBERG

Is ‘chronic Lyme disease’ real?

By David Scharfenberg August 22, 2019, 8:00 a.m.

https://www.bostonglobe.com/ideas/2019/08/22/chronic-lyme-disease-real/82qGnp5GmQbLE42nlb4otJ/story.html

Left untreated, Lyme can lead to fever and joint pain. But even then, the disease is eminently treatable.

Aug 26, 2019

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,

You were recently quoted a number of times in the above listed Boston Globe article but you didn’t call attention to the following Dr. Ying Zhang study from 2015:

Standard antibiotic treatment for Lyme disease does not kill persistent Borrelia bacteria.

http://droopyyoupi.blogspot.com/2015/08/standart-antibiotic-treatment-for-lyme.html

-What has tuberculosis and Borrelia burgdorferi in common? In the late stage of the disease occurs persistent (tolerant) bacteria, which essentially means that the bacteria lasts and lasts and lasts. They protect themselves against antibiotics and are difficult to treat.

- Both Borrelia burgdorferi and tuberculosis is relatively easy to cure in the early stages, even with the use of one antibiotic. In the late stage it is impossible to cure the disease with the same type of treatment in the acute phase, said Dr. Ying Zhang when he visited the year NorVect conference.
____________________________________

The editorial department of The Journal of the American Medical Association (JAMA) believed that I had a rather important infectious disease question and published my letter to the editor on December 18, 2018. You and Dr. Wormser neglected to answer the highlighted question below.

Controversies About Lyme Disease

JAMA. 2018;320(23):2481. doi:10.1001/jama.2018.17195

Published question:

"It is well known that untreated streptococcal pharyngitis can progress to rheumatic fever, causing irreversible heart damage. Untreated syphilis leads to progressive disability and dementia, and untreated human immunodeficiency virus infection progresses to AIDS with significant disability and death. What happens to a patient with Lyme disease who goes months, years, or decades before diagnosis because of a false-negative serological test result? [Missing bulls-eye rash, misdiagnosis etc.] Shapiro and Wormser do not discuss the consequences of untreated Lyme disease in their Viewpoint."

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.

Post Treatment Lyme Disease Syndrome (PTLDS) after early treatment and untreated Lyme of months, years or decades are two entirely different disease states; the latter being ignored for over three decades. Patients who have had a prolonged exposure to the pathogen are almost always incapacitated. In fact, patient testimony all across America is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin yet there are no Public Service Announcements informing the public that you could become horribly “debilitated” or die from Lyme disease.

Why has the focus over the past three decades been on the acute stage of Lyme disease after early treatment [1] while the horribly disabled are left to fend for themselves after the one-size-fits-all IDSA treatment guideline fails? 

The statement below was extracted from Dr. Raymond Dattwyler’s patent:

United States Patent US 7.887,815 B2
http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO1&Sect2=HITOFF&d=PALL&p=1&u=%2Fnetahtml%2FPTO%2Fsrchnum.htm&r=1&f=G&l=50&s1=7,887,815.PN.&OS=PN/7,887,815&RS=PN/7,887,815

Dattwyler et al. Feb. 15, 2011

“Clinically, Lyme disease is a progressive disease with a wide array of manifestations. Early diagnosis and treatment is critical to prevent progression. Late disseminated infection can be associated with permanent damage to the nervous and musculoskeletal systems.”

_______________________________

Shapiro quotes in the Boston Globe article:

“These days, it’s Lyme that gets much of the attention — its catch-all, explanatory power supercharged by the Internet. “If your nose falls off,” Shapiro says, “you can find out that Lyme disease makes your nose fall off.”
_______________________

Dr. Shapiro, it appears that you have a long history of similar quotes (verbal diarrhea) which have been archived on the Internet:

Memorable and Not So Memorable Quotes by Lyme Disease Denialists

https://lyme.kaiserpapers.org/memorable-quotes-by-lyme-disease-denialists.html#Shapiro

_______________________

All Tuttle family members advanced to late stage Lyme before obtaining a diagnosis after years of deteriorating health. If we hadn’t met Dr. Sam Donta who spent a career studying Lyme disease at BU School of Medicine, none of us would have been treated. None of us tested positive for Lyme disease under the current FDA approved two-tier testing algorithm as we did not meet the strict CDC Western blot criteria for positive results. (2 out of 3 IgM bands and 5 out of 10 IgG bands)

Our daughter developed an attention deficit disorder so severe that she could no longer read a chapter and retain what was read. A stroke-like episode landed her in the hospital and an MRI revealed white matter lesions but an astute neurologist recognized that these lesions did not resemble the lesions found in MS patients.

My wife could barely walk up a flight of stairs without excruciating knee pain and we thought for certain that she would require knee replacement surgery.

I’m happy to report that my wife has fully recovered with no remaining symptoms but that was only achieved after two years of antibiotics. My daughter reached similar results but her recovery took three years of antibiotics.

As for my case of chronic Lyme disease; those details will be summarized at a later date but I will tell you that my insurance claims in 2018 exceeded $600,000.

Earlier this year I was introduced to a gentleman in Salem, NH (Name and phone number available upon request) who had to sell his 1.4 million dollar home on Lake Winnipesaukee in order to treat an entire family of Lyme patients and just last week this story was published:

Mommy, I just want to die:' Mother recalls daughter’s fight against Lyme disease

By Heather Schlitz, AccuWeather staff writer  Aug 20, 2019

https://www.accuweather.com/en/weather-news/mommy-i-just-want-to-die-mother-recalls-daughters-fight-against-lyme-disease/70009099?fbclid=IwAR0T-J4Z0AAUQn2J6uZU3m7JB1OrYnp3T0mZHl9Nz_gy2EPcGewvTKD9PqA

The Lecrones emptied their bank accounts to pay for the uninsured doctor’s visits and to keep injecting $5,000-a-month Rocephin, an antibiotic, into Nicole’s IV. They lost their house and 401(k). Jennifer’s husband drove a truck for 15 hours a day. Jennifer’s oldest daughter, a high school student and varsity soccer player, gave her mom the paychecks she earned from working part-time at Subway and told her mom to use it to buy groceries and pay bills. The family struggled to function as Nicole languished in bed.

__________________

So I ask the question Dr. Shapiro, What is your motivation for downplaying the severity of Lyme disease?

Carl Tuttle

Lyme Endemic Hudson, NH

Cc: Brian McGrory, editor-in-chief

Cynthia L. Sears, MD, FIDSA, President, IDSA

Tick-Borne Disease Working Group

Daniel Dutko, lead attorney Lisa Torrey vs IDSA lawsuit

Court document: https://www.dropbox.com/s/18uyrli878ug51m/LymeDisease%20RICO%20Lawsuit.pdf?dl=0

Reference:

Subjective symptoms after treatment of early Lyme disease.

https://www.ncbi.nlm.nih.gov/pubmed/20102996

Gary Wormser, New York Medical College


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