Petition update

Lyme Disease Overdiagnosis in a Large Healthcare System

Carl Tuttle
Hudson, NH, United States

Mar 1, 2019 — 

The three letters below concern diagnostic testing for Lyme disease and recently a letter surfaced written in 1988 by the CDC admitting that the ELISA is virtually useless for the early detection of Lyme yet we have been using this screening test for 31 years! The letter was archived in the Utah Valley University Digital Collection of Willy Burgdorfer research material.

Lyme Bumper Stickers (Public Service Announcement)
https://www.ebay.com/itm/123659578861

Letter to the TBD Working Group:

---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, brett.giroir@hhs.gov
Cc: (85 nondisclosed recipients)
Date: February 28, 2019 at 12:42 PM
Subject: Lyme Disease Overdiagnosis in a Large Healthcare System: A Population-based, Retrospective Study

To: the Tick Borne Disease Working Group and ADM Brett P. Giroir, M.D., Assistant Secretary for Health,

Please see the letter below addressed to Bryant J. Webber, MD.

Why is there no concern for the false negative Lyme disease lab test results? The entire Tuttle family progressed to late stage Lyme all of us with false negative Lyme disease tests as seen by Dr. Sam Donta.

The mishandling of Lyme disease here in the US is an absolute disgrace and the study below is no exception.

Letter to Dr. Bryant: 

 --------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: bryant.webber@us.af.mil
Cc: leah.colton@us.af.mil, sonal.pathak@sti-tec.com, gilbert.greub@chuv.ch, jlubom2@gmail.com, jesusrb@us.es
Date: February 28, 2019 at 9:46 AM
Subject: Lyme Disease Overdiagnosis in a Large Healthcare System: A Population-based, Retrospective Study

Clinical Microbiology and Infection

Lyme Disease Overdiagnosis in a Large Healthcare System: A Population-based,

Retrospective Study
https://doi.org/10.1016/j.cmi.2019.02.020

Bryant J. Webber, MD, MPH, Rachael P. Burganowski, MS, Leah Colton, PhD, James D. Escobar, MPH, Sonal R. Pathak, MPH, Kelly J. Gambino-Shirley, DVM, MPH

Feb 28, 2019

USAF School of Aerospace Medicine
2510 5th Street, Bldg. 840
Wright-Patterson AFB, OH 45433-7913
ATTN: Bryant J. Webber, MD, MPH, Public Health and Preventive Medicine Department

Dear Dr. Bryant,

The recent Schutzer et al. paper concluded the following regarding serologic testing for Lyme disease:

Direct Diagnostic Tests for Lyme Disease (Coauthored by Dr. Paul Mead of the CDC)

Clinical Infectious Diseases, ciy614, https://doi.org/10.1093/cid/ciy614

Published: 11 October 2018

Excerpt:

“… serologic tests cannot distinguish active infection, past infection, or reinfection. Reliable direct-detection methods for active B. burgdorferi infection have been lacking in the past but are needed and appear achievable.”

_______________________________________________

Unreliable diagnostic tests are going to produce unreliable conclusions.

“If false results are to be feared, it is the false negative result which holds the greatest peril for the patient.” -Dr. Alan MacDonald

Please see the attached PDF identifying seronegativity in Lyme borreliosis and other spirochetal infections.  https://www.dropbox.com/s/3d6m45jzlhhwalu/Seronegativity.pdf?dl=0

For Example:

I would like to point out the following case study from Stony Brook Lyme clinic. I understand the patient received thirteen spinal taps, multiple courses of IV and oral meds, and relapsed after each one, proven by CSF antigens and/or PCR. The only way this patient (said to be a physician) remained in remission was to keep her on open ended clarithromycin- was on it for 22 months by the time of publication.

Seronegative Chronic Relapsing Neuroborreliosis.  
https://www.ncbi.nlm.nih.gov/pubmed/7796837

Lawrence C.a · Lipton R.B.b · Lowy F.D.c · Coyle P.K.d 

aDepartment of Medicine, bDepartment of Neurology, and cDivision of Infectious Diseases, Albert Einstein College of Medicine, and dDepartment of Neurology, State University of New York at Stony Brook, New York, NY., USA

Eur Neurol 1995; 35:113–117  (DOI:10.1159/000117104)

Abstract

We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.

________________________

Dr. Neil Spector, Oncologist from Duke University required a heart transplant after his Lyme disease went undiagnosed for years. His serology was repeatedly negative.

https://www.bayarealyme.org/blog/story/neil-spector/

As you should know Dr. Bryant, humans do not produce detectable antibodies to Borrelia for 4-6 weeks after a tick bite. Early detection and prompt treatment leads to better outcomes. Strep throat progresses to Rheumatic fever when left untreated but RF has been virtually eliminated in North America due to rapid culture tests for strep in the primary care setting. It is time to abandon serology for 100% reliable early detection methods.

Until we have direct testing methods to detect Lyme disease in all stages of disease you cannot make the statement that “Lyme Disease is Overdiagnosed.”

Respectfully submitted,

Carl Tuttle

Lyme Endemic Hudson, NH


Follow-up letter to the TBD Working Group:

---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, brett.giroir@hhs.gov
Cc: (85 nondisclosed recipients)
Date: March 1, 2019 at 9:14 AM
Subject: Re: Lyme Disease Overdiagnosis in a Large Healthcare System: A Population-based, Retrospective Study

To: the Tick Borne Disease Working Group and ADM Brett P. Giroir, M.D., Assistant Secretary for Health,

On Feb 28, 2019 Carl Tuttle wrote: “As you should know Dr. Bryant, humans do not produce detectable antibodies to Borrelia for 4-6 weeks after a tick bite. Early detection and prompt treatment leads to better outcomes.”

Per the Utah Valley University Digital Collection of Willy Burgdorfer research material, please see the 1988 archived letter below from Albert Balows, Assistant Director of Laboratory Science at the CDC written to Dr. Michael Skeels, Director of Oregon State Public Health Laboratory.

Correspondence from Albert Balows to Michael Skeels, 1988

http://contentdm.uvu.edu/cdm/singleitem/collection/Burgdorfer/id/44/rec/1

Excerpt:

Evaluation of the ELISA (First line screening test for Lyme) showed that only 13-16% of patients with a bulls-eye rash have positive serology in the first three weeks after onset of symptoms and only increases to 27% 3-6 weeks after onset of illness.

Because of the low sensitivity of the test the diagnosis of Lyme disease in endemic areas should depend primarily on the clinical presentation of the patient.

___________________________________

So for 31 years we have been using a useless first line laboratory test to screen for a disease that is destroying lives, ending careers while leaving the patient in financial ruin.

How many Lyme patients have been harmed by these faulty/misleading antibody tests and told they do not have Lyme disease? The US Centers for Disease Control is 100% responsible for this epic failure.

Carl Tuttle

Lyme Endemic Hudson, NH

Utah Valley University Digital Collections

Willy Burgdorfer Collection of Lyme Disease Research Materials http://contentdm.uvu.edu/cdm/landingpage/collection/Burgdorfer


Keep fighting for people power!

Politicians and rich CEOs shouldn't make all the decisions. Today we ask you to help keep Change.org free and independent. Our job as a public benefit company is to help petitions like this one fight back and get heard. If everyone who saw this chipped in monthly we'd secure Change.org's future today. Help us hold the powerful to account. Can you spare a minute to become a member today?

I'll power Change with $5 monthlyPayment method

Discussion

Please enter a comment.

We were unable to post your comment. Please try again.