Please see the letter below addressed to Congressman Chris Smith with Cc: to the Tick-Borne Disease Working Group
--------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, chris.smith@mail.house.gov
CcL98 Undisclosed Recipients)
Date: June 24, 2019 at 12:45 PM
Subject: Email from Dr. Vincent M. Tedone whose daughter was diagnosed with ALS
June 24, 2019
U.S. Congressman Chris Smith
2373 Rayburn House Office Building
Washington, D.C. 20515
chris.smith@mail.house.gov
Dear Rep Smith,
I received a personal email from Dr. Vincent M. Tedone whose daughter was diagnosed with ALS (Lou Gehrig’s disease) but before I disclose the details of that email I would like to call attention to a rather disturbing Lyme disease study conducted by Dr. Allen Steere in 1991 that left children untreated for four years. As a result of that study, it was found that the longer the patient went untreated, antibody production against the pathogen declined.
The Long-Term Course of Lyme Arthritis in Children
(NEJM 1991 Allen Steere)
https://www.nejm.org/doi/10.1056/NEJM199107183250304
Excerpt:
-After the third year of infection IgG antibody response declined, but remained positive throughout the illness
Carl Tuttle’s comment:
“IgG antibody response declined”….So this would correlate well with patient experience of having a negative Lyme test (that did not meet CDC positive criteria) the longer the infection goes before diagnosis.
Additional supporting interview with Dr. Alfred Miller regarding negative test results:
NIGHTSIDE – A NEW PERSPECTIVE ON LYME DISEASE (2017)
https://madisonarealymesupportgroup.com/2017/10/13/dr-miller-a-new-perspective-on-lyme-disease/
BOSTON (CBS) – Dr. Alfred Miller is a Mayo Clinic trained physician with four decades of experience running a private practice.
Excerpt:
A Couple of points: “Some patients NEVER test positive on any Lyme test and/or coinfection test for that matter. In fact a highly reputable LLMD in WI states the very sickest patients often never test positive.”
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Back to Dr. Vincent M. Tedone whose daughter Deanna was diagnosed with ALS…….
Using a Provocative Antibiotic Test established etiology in his daughter’s neurodegenerative disease. From Dr. Tedone’s website: https://www.winningthefight.org/provocative-antibiotic-test.html
-The Provocative Antibiotic Test was devised by Alfred Miller, MD to determine if your neurodegenerative disease is caused by the Borrelia bacteria and co-infections.
-For 21 days take orally Azithromycin 500 mg/day and Flagyl 500mg/day.
-The tests to order at IGenex are TBD 3 which tests for Borrelia and co infections.
Continued…….
_______________________________
The Deanna Protocol® Metabolic Plan for ALS
https://www.winningthefight.org/deanna-protocolreg-plan-for-als.html
“Deanna (the first person to follow the DP™ Plan), had moderate to quick progressing ALS in 2009. Guess what? She's still alive, able to speak, breathe on her own and able to swallow/eat on her own. She can even use a computer and type...with her hands! Thousands just like her have seen the same results.”
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So how many neurodegenerative disease patients are harboring the Lyme disease bacterium Borrelia burgdorferi?
Chronic Lyme mistaken for ALS (Fox news 2013)
https://www.youtube.com/watch?v=ChC2Y2gOoJU
Other physicians have documented the presence of Borrelia in AD, MS and PD.
From Dr. Dietrich Klinghard: (Quote from the film "Under Our Skin" https://underourskin.com/#home-underourskin
“We never had in the last five years a single MS patient, a single Parkinson's patient who did not test positive for Borrelia burgdorferi. Not a single one.”
Here are just a few publication connecting Lyme to neurodegenerative disease and you will see that none are from the United States: (Why is that?)
1. Positive serology for Lyme disease Borrelias in primary cutaneous B‐cell lymphoma: a study in 22 patients; is it a fortuitous finding? (Hematological Oncology 2000)
Institute for Oncology and Radiology of Serbia
2. Lyme Neuroborreliosis Mimicking Primary CNS Lymphoma (European Neurology 2004)
Department of Neurology, Department of Neuroradiology and Institute of Neuropathology, Klinikum Grosshadern, Munich, Germany
https://doi.org/10.1159/000075086
3. Lyme borreliosis and multiple sclerosis are associated with primary effusion lymphoma (Science Direct 2007)
Rijeka University School of Medicine, Croatia
“Worldwide, MS prevalence parallels the distribution of the Lyme disease pathogen B. burgdorferi.”
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In contrast we have Dr. Gary Wormser unethically focused on the acute stage of Lyme disease with bulls-eye rash;
Subjective symptoms after treatment of early Lyme disease
(American Journal of Medicine 2010)
https://www.ncbi.nlm.nih.gov/pubmed/20102996
Gary Wormser, New York Medical College
It is no secret that Rheumatologist Dr. Allen Steere has had a fixation on the swollen knee presentation of Lyme disease and Eugene Shapiro (Member of the TBDWG) believes that any patient who fails the standard one-size-fits-all IDSA treatment guideline requires a psychiatric evaluation.
Eugene Shapiro, MD, on suspected Lyme disease “Medically Unexplained Symptoms”
https://www.youtube.com/watch?v=nkO3q0ahVow
The US Centers for Disease Control and Health and Human Services has aligned themselves with researches who have controlled the narrative for the past three decades claiming that Lyme is a simple nuisance disease (Hard to catch and easily treated) yet patient testimony all across America is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin. 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.
Lyme disease patients who go months, years or decades before diagnosis are often misdiagnosed and treated for the chronic diseases of our time; diseases with no known etiology.
Multiple sclerosis, Parkinson’s disease, ALS, Fibromyalgia, Chronic Fatigue Syndrome, Alzheimer’s disease, Lupus etc. etc. etc.
How many neurodegenerative diseases (cancers) are direct results of undiagnosed or undertreated Lyme disease and why have our public health officials continued to ignore this serious connection?
“Smith says the lack of federal attention to eradicate Lyme disease is a scandal. He feels those involved should be held accountable, either civilly or criminally.”
Using a “Provocative Antibiotic Test” to establish etiology in neurodegenerative disease should command immediate research and generous funding otherwise we will continue to experience another decade of unimaginable pain and suffering.
Respectfully submitted,
Carl Tuttle
Lyme Endemic Hudson, NH
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Lyme Bumper Stickers (Public Service Announcement)
https://www.ebay.com/itm/123659578861
WAKE UP AMERICA!