I’ve combined advocate Carl Tuttle’s updates into one. In this first update, he points out the Dr. Shapiro’s “verbal diarrhea” published in the Boston Globe article. In the second, he points out the need for faulty CDC 2-tiered Lyme Lyme testing to conceal persistent infection being experienced by many patients.
Boston Globe: Is ‘chronic Lyme disease’ real?
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 <firstname.lastname@example.org>
Cc: email@example.com, PracticeGuidelines@idsociety.org, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org
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.
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
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.
-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
“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  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
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
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
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?
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
Subjective symptoms after treatment of early Lyme disease.
Gary Wormser, New York Medical College
Current but faulty CDC 2-tiered Lyme Lyme testing is needed to conceal persistent infection being experienced by many patients.
Medscape: “Lyme Testing Gets Fast and Easy”
SEP 17, 2019 —
Today’s letter to Auwaerter with Cc: to the Tick-Borne Disease Working Group……
———- Original Message ———-
From: CARL TUTTLE <email@example.com>
Cc: firstname.lastname@example.org (98 Undisclosed recipients)
Date: September 17, 2019 at 9:04 AM
Subject: Medscape: “Lyme Testing Gets Fast and Easy”
Lyme Testing Gets Fast and Easy
Paul G. Auwaerter, MD
“When the test was examined for both early Lyme disease and later noncutaneous Lyme disease, it performed as well—if not a bit better—in detecting identifiable antibodies against Borrelia burgdorferi, the causative agent of Lyme disease.[2,3]”
Sept 17, 2019
The IDSA Foundation
1300 Wilson Boulevard Suite 300
Arlington, VA 22209
Attn: Paul Auwaerter, vice chair of the IDSA Foundation
Dear Dr. Auwaerter,
I recommend reading the following JAMA article:
Moving From Substantial Equivalence to Substantial Improvement for 510(k) Devices
Rita F. Redberg, MD, MSc1,2,3 ; Sanket S. Dhruva, MD, MHS1,4
JAMA. 2019;322(10):927-928. doi:10.1001/jama.2019.10191
“Recent Kaiser Health News stories reported that more than 1 million medical device adverse event reports had been sealed from public view by the US Food and Drug Administration (FDA).1 The New York Times recently called for reforms in device regulation in an editorial entitled “80,000 Deaths. 2 Million Injuries. It’s Time for a Reckoning on Medical Devices.”2
You did not mention the fact that humans do not produce 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.
Half the tests come back negative when the patient is actually infected.  (No better than a coin toss!)
- Serology is inappropriate for a disease that causes death 
- severe disability  as reported by the patient community for the past three decades and exposed in the documentary Under or Skin 
Serology however is absolutely essential for concealing persistent infection (chronic Lyme disease)  as the test cannot be used to gauge treatment failure or success.
Where is the escalation process to develop direct detection methods and find new treatment approaches for a disease that is destroying lives, ending careers while leaving its victim in financial ruin?
Lyme Endemic Hudson, NH
Cc: Medscape Editorial Staff
REFERENCES (Please read them!)
1. Commercial test kits for detection of Lyme borreliosis: a meta-analysis of test accuracy.
2. Wrongful death suit shows pitfalls of IDSA Lyme guidelines
17 year-old Joseph Elone did not develop a bulls-eye rash and had a negative antibody test for Lyme disease.
3. Latent Lyme Disease Resulting in Chronic Arthritis and Early Career Termination in a United States Army Officer
4. Under Our Skin – Extended Trailer
5. Seronegative Chronic Relapsing Neuroborreliosis.
Albert Einstein College of Medicine, Published 1995