Madison Area Lyme Support Group

Please see the inquiry below addressed to the authors of this publication titled Laboratory Diagnosis of Lyme Borreliosis. There has been no response from Branda or Steere…

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “branda.john@mgh.harvard.edu” <branda.john@mgh.harvard.edu>, “asteere@mgh.harvard.edu” <asteere@mgh.harvard.edu>
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Date: 02/10/2023 9:02 AM
Subject: Clinical Microbiology Reviews; “Laboratory Diagnosis of Lyme Borreliosis”
Clinical Microbiology Reviews
Published online 2021 Jan 27
 
Laboratory Diagnosis of Lyme Borreliosis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7849240

John A. Branda and Allen C. Steere

“Lyme borreliosis is caused by a growing list of related, yet distinct, spirochetes with complex biology and sophisticated immune evasion mechanisms.”

Dear Drs. Branda and Steere,
I read your manuscript with great interest. While searching for the word “seronegative” I came across seven results in your publication but could not find the following references:

There is a wrongful death lawsuit in the state of NY where a 17yr old collapsed in his front yard later pronounced dead at the hospital. His Lyme test was negative.

1. Wrongful death suit shows pitfalls of IDSA Lyme guidelines
Joseph Elone died of Lyme disease
By Mary Beth Pfeiffer Sept 9, 2019
https://www.lymedisease.org/elone-wrongful-death-lawsuit-lyme/

In Pennsylvania there was a civil lawsuit against doctors who misdiagnosed Lyme disease as multiple sclerosis. The patient had four negative serologies but the fifth one came back positive.

2. Pa. Supreme Court to Hear Medical Liability Case with Statute of Limitations Implications
https://www.pamedsoc.org/list/articles/Statute-of-Limitations

Duke University Oncologist Dr. Neil Spector required a heart transplant; his Lyme serology was repeatedly negative.

3. Gone in a Heartbeat: A Physician’s Search for True Healing
https://lymediseaseassociation.org/book-list/gone-in-a-heartbeat-a-physician-s-search-for-true-healing-by-neil-spector-md/

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. Standard antibody tests were negative.

4. Seronegative Chronic Relapsing Neuroborreliosis.  
https://www.ncbi.nlm.nih.gov/pubmed/7796837
Lawrence C. Lipton R.B. Lowy F.D. Coyle P.K.

Department of Medicine, Department of Neurology, and Division of Infectious Diseases, Albert Einstein College of Medicine, and Department of Neurology, State University of New York at Stony Brook, New York, NY., USA

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.

5. Seronegativity in Lyme borreliosis and Other Spirochetal Infections 16 September 2003
https://www.dropbox.com/s/3d6m45jzlhhwalu/Seronegativity.pdf?dl=0

Here is a recent wrongful death lawsuit in the state of Maine: (I understand Mr. Smith’s Lyme test was negative)

Mercy Hospital, physician ordered to pay $6.5M for deadly misdiagnosis
Pete Smith, 25, died in 2017 after a doctor failed to recognize the signs of Lyme Disease
https://www.wmtw.com/article/mercy-hospital-physician-ordered-to-pay-dollar65m-for-deadly-misdiagnosis/42745675

Regardless of your so-called “advances in diagnostics” these references prove serology has always been the wrong diagnostic tool for an infection that often produces no detectable antibodies in all stages of disease. 1   “Spirochetes with complex biology and sophisticated immune evasion mechanisms” as you pointed out in your summary.

Is there a reason why the references I have presented here are missing from your publication?
A response to this inquiry is requested.
A copy of this inquiry has been sent to the management team at Mathematica Policy Research who have recently been contracted by the CDC.

Respectfully submitted,
Carl Tuttle
Hudson, NH

Cc: CMR Editorial Board

Reference:

1.  HB490 COMMISSION TO STUDY TESTING FOR LYME AND OTHER TICK-BORNE DISEASES
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/30346445

In November 2021, a commission created by the State of New Hampshire finished an exhaustive investigation of Lyme disease test accuracy. The commission reported that only 20-30% of people exhibit antibodies at detectable levels, and the commission concluded that “CDC-approved serologic tests for Lyme disease are unreliable in all stages of the disease.”