Please see the following email thread submitted to the NH Lyme Disease Study Commission...
---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: Leah Cushman <Leah.Cushman@leg.state.nh.us>, "benjamin.chan@dhhs.nh.gov" <benjamin.chan@dhhs.nh.gov>, Jeb Bradley <jebebrad@metrocast.net> (5 additional members of the Study Commission)
Cc: "Rachel.Levine@hhs.gov" <Rachel.Levine@hhs.gov>, "Kristen.Honey@hhs.gov" <Kristen.Honey@hhs.gov>, "governorsununu@nh.gov" <governorsununu@nh.gov>
Date: 07/10/2021 8:26 AM
Subject: Topic for discussion at a future meeting
Submitted to the Lyme Study Commission for future review....
The following correspondence addressed to Assistant Secretary for Health, Dr. Rachel Levine describes how the US Centers for Disease Control together with the lead author of the IDSA Lyme Treatment Guidelines, Dr. Gary Wormser of New York Medical College, turned a life-altering/life-threatening infection into a simple nuisance disease. If this were cancer it would be the equivalent of ignoring stage IV.
Patient testimony all across America is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin yet these patients are routinely denied Social Security disability compensation.
The fraudulent use of taxpayer dollars is clearly identified as an open checkbook was handed to Wormer to publish his junk science bypassing the government grant process. The misclassification of Lyme as a simple nuisance disease, “Hard to Catch and Easily Treated” with a one-size-fits-all IDSA treatment guideline, turned Lyme into a low-risk and non-urgent health threat eliminating the funding which should have been equal to or greater than AIDS, Zika or cancer as these diseases are equally life-altering/life-threatening.
I have been calling for a Congressional investigation into the mishandling of Lyme disease through a Change.org petition that has collected over 96,000 Signatures 1,061,889 Views and 27,012 Shares and none of my petition updates have been censored. Each individual who signs that petition is encouraged to leave a comment. That comment file has now grown to over 1100 pages which has been shared with Kristen Honey of the Tick-Borne Disease Working Group on 08/07/2018 10:26 AM.
Petition Comments July 7, 2021 (personal Dropbox storage area)
https://www.dropbox.com/s/1rpwn3a1k3zo9iq/petition_comments_July%207%202021.pdf?dl=0
Everyone reading this email is a single tick bite away from experiencing this travesty so how long do we continue to turn a blind eye to this deliberate mismanagement of Lyme by our public health officials?
Respectfully submitted,
Carl Tuttle
Hudson, NH
Cc: All members of the NH Lyme Study Commission
Assistant Secretary for Health, Dr. Rachel Levine
Email sent to Assistant Secretary for Health, Dr. Rachel Levine:
---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: "Rachel.Levine@hhs.gov" <Rachel.Levine@hhs.gov>
Cc: "Honey, Kristen (OS/IOS)" <Kristen.Honey@hhs.gov>, "mtal@stanford.edu" <mtal@stanford.edu>, "coca@cdc.gov" <coca@cdc.gov>, "lwx1@cdc.gov" <lwx1@cdc.gov>, "tickbornedisease@hhs.gov" <tickbornedisease@hhs.gov>, "bennett.nemser@steveandalex.org" <bennett.nemser@steveandalex.org>
Date: 07/09/2021 1:04 PM
Subject: Re: Fwd: Lyme Disease Updates and New Educational Tools for Clinicians
July 9, 2021
The U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
Attn: Assistant Secretary for Health, Dr. Rachel Levine
Dear Dr. Levine,
Please read the two emails below addressed to Dr. Gary Wormser of New York Medical College who was awarded 1.5 million through the US Centers for Disease Control under grant# RO1 CK 000152 for a study that avoids the horribly disabled Lyme patient population.
That CDC grant by the way is an open checkbook allowing Wormser to produce his junk science.I searched other Lyme studies through the NIH RePORTER portal and found most other Lyme studies were funded by NIAD, NCRR etc. but no others funded by the CDC.
This seems quite disturbing…… Is this collusion between the CDC and Wormser? As Assistant Secretary for Health, Dr. Levine you
should be concerned.
Subjective symptoms after treatment of early Lyme disease.
https://www.ncbi.nlm.nih.gov/pubmed/20102996
Purposely avoiding the advanced stage of disease has pigeonholed Lyme into the current category of “Hard to Catch and Easily Treated” basically, a low-risk and non-urgent health risk. Anyone unable to see this is somewhat naïve.
Using federal funds to design studies supporting his personal biases is fraudulent use of taxpayer dollars.
First email to Dr. Gary Wormser:
---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: gwormser@nymc.edu, eugene.shapiro@yale.edu
Cc: tickbornedisease@hhs.gov, (76 Undisclosed recipients)
Date: 01/04/2019 10:48 AM
Subject: JAMA: Shapiro ED, Wormser GP. Lyme disease in 2018: what is new (and what is not)
JAMA Shapiro ED, Wormser GP. Lyme disease in 2018: what is new (and what is not).
https://jamanetwork.com/journals/jama/article-abstract/2696480
Jan 4, 2019
Division of Infectious Diseases,
New York Medical College,
Valhalla, NY 10595
Attn: Gary P. Wormser, MD
Dr. Wormser,
In reference to your response to my letter to the Editor published in the December 18th issue of JAMA, it would appear that you and your coauthor Dr. Shapiro conveniently ignored my question highlighted below:
Excerpt from my letter to the editor:
Controversies About Lyme Disease
https://jamanetwork.com/journals/jama/article-abstract/2718786
-Carl Tuttle
“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 HIV infection progresses to AIDS with significant disability and death. What happens to the patient with Lyme disease who goes months, years or decades before diagnosis because of a false negative serological test?”
Untreated Lyme is destroying lives, ending careers while leaving the patient in financial ruin as reported by the disabled Lyme community for the past three decades. 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.
I would like to call attention to the following quote taken from an interview with Professor Willy Burgdorfer, the discoverer of the Lyme disease spirochete:
“The controversy in Lyme disease research is a shameful affair. I say that because the whole thing is politically tainted. Money goes to people that have for the past thirty years produced the same thing. Nothing.” - Willy Burgdorfer
Source: (Live interview)
Prof. Willy Burgdorfer Talks About Lyme Disease
https://www.youtube.com/watch?v=dCnrUmAPcOE
Your fixation on the acute stage of disease after early treatment Dr. Wormser has done nothing to advance our understanding of how Lyme disease disables its victim.
For example:
Subjective symptoms after treatment of early Lyme disease.
https://www.ncbi.nlm.nih.gov/pubmed/20102996
Gary Wormser, New York Medical College
(Financed by the U.S. Centers for Disease Control) [RO1 CK 000152]
RESULTS:
“At 12 months after enrollment, only 5 (2.2%) of 230 evaluable patients reported new or increased symptoms, and in none of the patients were these symptoms of sufficient severity to be functionally disabling”
_____________________________
Summary of Wormser’s study: Anyone experiencing symptoms after the one-size-fits-all treatment approach is just experiencing nothing more than the “aches and pains of daily living.”
So basically, Wormser’s results are then assumed to apply to the entire patient population; in other words, Lyme is no big deal which has wrongly influenced our nation’s response to this serious life-altering health threat. The research into how Lyme disables should have been completed by now but the misclassification of Lyme as a simple nuisance disease (hard to catch and easily treated) has paralyzed the response to this runaway plague.
Many infections as I continue to point out evolve into an entirely different and serious life-altering/life-threatening disease when left untreated.
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 three decades. Patients who have had a prolonged exposure to the pathogen are almost always incapacitated.
Purposely avoiding the advanced stage of disease hides the horribly disabled and anyone unable to see this is somewhat naive.
So I ask the question Dr. Wormser, What is the motivation for downplaying the severity of Lyme disease while ignoring patient outcry for thirty years?
A prompt response to this inquiry is requested.
Please hit Reply-All as I have carbon copied the Tick Borne Disease Working Group and Assistant Secretary for Health, ADM Brett P. Giroir, M.D.
Carl Tuttle
Lyme Endemic Hudson, NH
Second email to Dr. Gary Wormser:
---------- 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
http://www.dukechronicle.com/articles/2015/05/28/duke-physician-uses-near-death-experience-encourage-patient-self-advocacy#.VYlYnxtViko
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.
http://danielcameronmd.com/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
http://www.labome.org/research/Granulomatous-hepatitis-associated-with-chronic-Borrelia-burgdorferi-infection-a-case-report.html
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.”
Carl Tuttle
Hudson, NH