Petition update

It’s time to recognize that we need an entirely different approach; anything less is inhumane

Carl Tuttle
Hudson, NH, United States

Aug 6, 2019 — 

Please see the letter below sent to the president of the IDSA regarding the proposed Lyme disease treatment guideline

Deadline to comment is Aug 10th:
https://www.surveymonkey.com/r/7HG3XCQ

________________________________

Aug 6, 2029

IDSA
1300 Wilson Boulevard
Suite 300
Arlington, VA 22209
Attn: Cynthia L. Sears, MD, FIDSA, President

Re: Draft Lyme Disease Guidelines Public Comment

Dear Dr. Sears,

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.

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:

1. 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.”

_______________________________

“In 1991 the Lyme disease organism, Borrelia burgdorferi, was grown from the cerebrospinal fluid of my patient Vicki Logan at the Centers for Disease Control in Fort Collins, Colorado despite prior treatment with intravenous antibiotics.  Her case made the front page of the New York Times Science Times in August of 1993.” -Kenneth Liegner, MD

2. Vicki Logan’s CDC Fort Collins Positive CSF Culture Report: (My personal Dropbox account)

https://www.dropbox.com/s/vthfdpn7gv8bne2/Logan%20CDC%20Fort%20Collins%20Positive%20CSF%20%20Culture%20Report.JPG?dl=0

Here are links to the seven page autopsy results of patient Vicki Logan showing histopathologic findings consistent with neurologic manifestations of chronic Lyme disease.

(Vicki Logan’s Autopsy results Page #1, 2, 3, 4, 5, 6, 7)

https://www.dropbox.com/s/xaul84dqmqgbre0/Brenda%20Fitzgerald%20MD%20Director%20CDC.docx?dl=0

The destructive nature of Borrelia is evident in Vicki Logan’s liver (nutmeg liver), kidneys, heart, lungs and brain. The patient died after the insurer refused additional IV antibiotic therapy

3. Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease

Published: 14 April 2018

http://www.mdpi.com/2227-9032/6/2/33

All of these patients were culture positive for infection (genital secretions, skin and blood) even after multiple years on antibiotics so there was no relief from current antimicrobials. Some of these patients had taken as many as eleven different types of antibiotics.

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.

4. 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:

5. 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.”

6. Peer Reviewed Evidence of Persistence of Lyme Disease Spirochete Borrelia burgdorferi and Tick-Borne Diseases (700 arrticles)

https://www.dropbox.com/s/14kogblsjc7po2x/EvidenceofPersistence-V2.pdf?dl=0

7. Congenital Transmission of Lyme Disease (28 references)

https://www.dropbox.com/s/xlju8w25phkypy0/Congenital%20Transmission%20of%20Lyme.pdf?dl=0

8. Deaths from Lyme Disease

https://www.dropbox.com/s/eo794dx7zspc1ln/Ld%20deaths.doc?dl=0

In Scientific Literature, Books, Newsletters/Newspapers/Obituary

Compiled by: John D. Scott, Research Scientist 17 April 2018

Dr. Sears… For 28yrs the CDC has sat on positive culture evidence that we are dealing with an antibiotic resistant/tolerant superbug and yet we are still using thirty year old antibiotics dictated by the Infectious Diseases Society of America? It’s time to recognize that we need an entirely different approach; anything less is cruel and inhumane.

Respectfully submitted,

Carl Tuttle

Lyme Endemic Hudson, NH


1. 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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