https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24834661?

Seronegative Chronic Relapsing Neuroborreliosis

JUL 17, 2019 — 

The letter below was forwarded to the Tick-Borne Disease Working Group as a follow-up to the first letter sent to Auwaerter which can be viewed here: https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24825076

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

WAKE UP AMERICA!

 

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, chris.smith@mail.house.gov
Cc: (98 Undisclosed recipients)
Date: July 17, 2019 at 11:49 AM
Subject: Re: Lyme disease often misdiagnosed, resulting in unnecessary antibiotics

To the Tick-Borne Disease Working Group,

Please see my second letter below (and attachment) to Dr. Auwaerter referencing Seronegative Chronic Relapsing Neuroborreliosis. 

-Carl Tuttle

2nd Letter to Auwaerter:

——- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: Paul Auwaerter <pauwaert@jhmi.edu>
Cc: psax@bwh.harvard.edu, jli@bwh.harvard.edu, cbusky@idsociety.org, tkobaya5@jhmi.edu, jmstiglich@healio.com, infectiousdisease@healio.com
Date: July 17, 2019 at 11:41 AM
Subject: Re: Lyme disease often misdiagnosed, resulting in unnecessary antibiotics

Lyme disease often misdiagnosed, resulting in unnecessary antibiotics
Kobayashi T, et. Open Forum Infect Dis. 2019;doi:10.1093/ofid/ofz299.

July 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,

While you contemplate your response to my inquiry requesting grant money for the purpose of proficiency testing of direct detection methods for Borrelia (DNA Sequencing). I would like to point out the following 1995 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.

________________________

This is not the only case where a negative antibody response was identified. In fact I have attached the following document referencing:

Seronegativity in Lyme borreliosis and Other Spirochetal Infections

https://www.dropbox.com/s/3d6m45jzlhhwalu/Seronegativity.pdf?dl=0

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

Your publication in Open Forum Infectious Diseases and the Healio article is suggesting that a patient couldn’t possibly have Lyme if they don’t test positive on the outdated two-tier testing algorithm. This is misleading to the reader and the medical community.

Please see the following article regarding the difficulty in diagnosing Lyme disease:

The Staggering Cost of Lyme Disease and Other Tick-Borne Illnesses

PR Newswire July 10, 2019

https://finance.yahoo.com/news/staggering-cost-lyme-disease-other-123600606.html

According to the survey:

-45% of patients needed more than three years to obtain the proper diagnosis

-65% of patients were forced to quit a job or cut back on their hours due to their symptoms

-24% of patients saw more than ten doctors before receiving a proper diagnosis

-86% of patients suffer from long-term side effects from not having been diagnosed sooner

Researchers hope that the survey will help educate the public on the risks associated with delaying testing or relying on old testing techniques. “In our view, many patients are missed because much of the testing recommended by general practitioners is based on technology from 25 years ago,” says Dr. Shah. “Science has progressed, and we can now give patients a much more accurate diagnosis than was available years ago.”

_________________________________

Dr. Auwaerter, how many Lyme patients were turned away from your clinic and left untreated because they did not test positive through unreliable serology?

It is time to move forward and find a better approach. Please stop this nonsense.

Sincerely,

Carl Tuttle

Lyme Endemic Hudson, NH

____________________

**Comment**

One of the best quotes on abysmal serology testing:  https://madisonarealymesupportgroup.com/2017/07/09/idsa-founder-used-potent-iv-antibiotics-for-chronic-lyme/

“Setting arbitrary level of antibodies to diagnose a disease that has not been amenable to Koch’s postulates seems open to question.  By the same token, ignoring antibody results unless they meet arbitrary levels seems suspect. The vast majority of patients in this series showed some WB antibody exposure, but many did not meet the arbitrary limits set….in our present state of knowledge, the diagnosis of chronic Lyme disease is a clinical one.  Many of the patients in this series have suffered serious ‘hurts’ when they have been told that they could not have LD because their WB did not meet arbitrary limits.”  – Dr. Waisbren (RIP)