There has never been a response to any of my inquiries addressed to Dr. Wormser….I wonder why? A copy of this letter was sent to the lead attorney of the current Texas RICO lawsuit.
---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: gary wormser <gary_wormser@nymc.edu>, jheber@plos.org
Cc: ipuebla@plos.org, mdohm@plos.org, gvousden@plos.org, mbyrne@plos.org, afauci@niaid.nih.gov, amarques@niaid.nih.gov, gwormser@nymc.edu, donna_mckenna@nymc.edu, dean.follmann@nih.gov, gary_wormser@nymc.edu, joshua.norville@tufts.edu, lymestudy@mfpstorrs.com, linden.hu@tufts.edu, plosone@plos.org
Date: November 14, 2019 at 8:48 AM
Subject: Re: Post-treatment Lyme disease symptoms score: Developing a new tool for research.
Nov 14, 2019
Division of Infectious Diseases,
New York Medical College,
Valhalla, NY 10595
Attn: Gary P. Wormser, MD
Dr. Wormser,
As an Infectious Disease Specialist I would like to ask you a few questions that I hope you could take the time to answer:
1. Does untreated strep throat lead to rheumatic fever causing irreversible heart damage?
2. Does untreated human immunodeficiency virus infection progresses to AIDS with significant disability and death?
3. Does untreated syphilis lead to progressive disability and dementia?
4. Does untreated Lyme disease produce sudden death with no warning signs; [1,2,3,] heart damage requiring transplant, [4] paralysis with seizures, [5] lymphoma [6] and persistent infection after antibiotic treatment [7, 8,9,10,11] along with congenital transmission [12] and ability to create wheelchair bound patients [13]?
Your thirty year fixation on the acute stage of disease (with bulls-eye rash) after early treatment gives the impression that you have disregarded the consequences of untreated Lyme disease which leaves the patient horribly disabled similar to the other examples I have presented.
I believe you have coined the phrase “aches and pains of daily living” when patients experience a return of symptoms after the one-size-fits-all IDSA treatment mandate.
“Post Treatment Lyme Disease Syndrome” after early treatment and untreated late stage Lyme of months, years or decades are two distinctly different disease states with the later going unrecognized for over three decades. Patients who have had a prolonged exposure to the pathogen are almost always incapacitated.
5. So what is your motivation for disregarding the consequences of untreated Lyme disease? Is it because the outcome of untreated Lyme doesn’t match the well-established dogma that Lyme is a simple nuisance disease; hard to catch and easily treated, which you helped to establish?
We have a disease that is wreaking havoc all across America (and the world) while you remain focused on the early stage of disease as indicated in your latest PLOS publication; shameful indeed.
Misclassification has pigeonholed Lyme disease into a low-risk and non-urgent health issue which has all but eliminated adequate government funding for a disease capable of long term disability and death.
A response to this inquiry is requested.
Carl Tuttle
Lyme Endemic Hudson, NH
References: (Tip of the iceberg)
1. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden
Cardiac Death Associated with Lyme Carditis. (March 2016)
http://ajp.amjpathol.org/article/S0002-9440(16)00099-7/abstract
Excerpt:
“Fatal Lyme carditis caused by the spirochete Borrelia burgdorferi rarely is identified. Here, we describe the pathologic, immunohistochemical, and molecular findings of five case patients.”
2. CDC Case Study #1: Three Sudden Cardiac Deaths Associated with Lyme Carditis:
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm?s_cid=mm6249a1_w
3. CDC Case Study #2: A case report of a 17-year old male with fatal Lyme carditis
http://www.cardiovascularpathology.com/article/S1054-8807(15)00025-3/abstract?rss=yes
4. Professor Neil Spector: Duke physician uses near-death experience to encourage patient self-advocacy
Dr Neil Spector from Duke University required a heart transplant after his Lyme disease went undiagnosed for four years.
5. Nashua Mom in the 'Lyme Light' on Katie Couric Show
http://patch.com/new-hampshire/nashua/nashua-mom-talks-chronic-lyme-on-katie-couric-show
Fifth-grade teacher Kelly Downing was paralyzed from the neck down and interviewed by Katie Couric.
6. Infection by Borrelia burgdorferi and cutaneous B-cell lymphoma (Cancer)
https://www.ncbi.nlm.nih.gov/pubmed/9331890
Specific DNA sequences of Borrelia burgdorferi were identified in cutaneous lesions from 9 patients (follicle center lymphoma: 3/20; immunocytoma: 3/4; marginal zone B-cell lymphoma: 2/20; diffuse large B-cell lymphoma: 1/6).
7. Application of Nanotrap technology for high sensitivity measurement of urinary outer surface protein A carboxyl-terminus domain in early stage Lyme borreliosis.
http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-015-0701-z
41 of 100 patients under surveillance for persistent LB in an endemic area were positive for urinary OspA protein after antibiotic treatment.
8. Culture evidence of Lyme disease in antibiotic treated patients living in the Southeast.
Rudenko and colleagues reported culture confirmation of chronic Lyme disease in 24 patients in North Carolina, Florida, and Georgia. All had undergone previous antibiotic treatment.
9. DNA sequencing diagnosis of off-season spirochetemia with low bacterial density in Borrelia burgdorferi and Borrelia miyamotoi infections.
https://www.ncbi.nlm.nih.gov/pubmed/24968274
Faulty/misleading antibody tests landed a sixteen year old male in a psychiatric ward when his lab results did not meet the CDC’s strict criteria for positive results. His Western blot had only four of the required five IgG bands. Subsequent DNA sequencing identified a spirochetemia in this patient’s blood so his psychiatric issues were a result of neurologic Lyme disease misdiagnosed by antiquated/misleading serology. This patient was previously treated with antibiotics.
10. Granulomatous hepatitis associated with chronic Borrelia burgdorferi infection: a case report
The patient had active, systemic Borrelia burgdorferi infection and consequent Lyme hepatitis, despite antibiotic therapy.
11. Scotty Shelton and Persistent Infection in Saginaw MN
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/11685820
“Scotty's brain (cerebral cortex) was positive for Borrelia burgdorferi and Borrelia myamotoi, his testicle is positive for Bb. We are now testing other tissues. Seven years of antibiotics and 3.5 years of natural treatments (along with antibiotics) and he was highly highly positive.”
12. Congenital Transmission of Lyme/TBD
https://www.dropbox.com/s/z10em0szgpm8bll/Congenital%20Transmission%20of%20Lyme%202015.doc?dl=0
13. Wheelchair-Bound Girl Calls Blessing By Pope Francis ‘Most Precious Moment Of My Life’
http://newyork.cbslocal.com/2015/09/24/pope-francis-blesses-girl-in-wheelchair/
NEW YORK (CBSNewYork) — A 12-year-old girl who has been confined to a wheelchair since being diagnosed with Lyme disease said meeting Pope Francis as he arrived in New York Thursday was “the most precious moment of my life.”