Please see the recent publication below by Adriana Marques, M.D., Chief, Lyme Disease Studies Unit at NIAID who utilized an electronic health record (EHR) query identifying 1300 pediatric Lyme patients but only 102 were evaluated in this study. So the study conclusions were based on 8% of the group.
Marques concludes with absolute confidence that “Most Children Recover from Lyme Disease within Six Months of Treatment” from only a fraction of the initial group. It easy to say what the science is when you control the outcome that you want. There has been no response to my inquiry.
Photo of Marques was found at the following address:
https://www.niaid.nih.gov/research/adriana-marques-md
Lyme Disease Studies Unit
NIH Main Campus, Bethesda, MD
---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: "amarques@niaid.nih.gov" <amarques@niaid.nih.gov>
Cc: "Brennan, Patti (NIH/NLM) [E]" <patti.brennan@nih.gov>, "Schor, Nina (NIH/OD) [E]" <nina.schor@nih.gov>, "Gregurick, Susan (NIH/OD) [E]" <susan.gregurick@nih.gov>, "michael.lauer@nih.gov" <michael.lauer@nih.gov>, "lyric.jorgenson@nih.gov" <lyric.jorgenson@nih.gov>, "cbearer@som.umaryland.edu" <cbearer@som.umaryland.edu>, "rdebiasi@childrensnational.org" <rdebiasi@childrensnational.org>, "molloyel@tcd.ie" <molloyel@tcd.ie>
Date: 04/24/2023 3:45 PM
Subject: Study Shows Most Children Recover from Lyme Disease within Six Months of Treatment
Pediatric Research
Study Shows Most Children Recover from Lyme Disease within Six Months of Treatment
https://www.niaid.nih.gov/news-events/study-shows-most-children-recover-lyme-disease-within-six-months-treatment
Adriana Marques, M.D., Chief, Lyme Disease Studies Unit at NIAID, is available to discuss this research.
Conclusions: In the current study, most children with Lyme disease experienced full resolution of symptoms, including those who initially met PTLD syndrome criteria. Effective communication about recovery rates and common symptoms that may persist post-treatment is needed.
Laboratory of Clinical Immunology and Microbiology
National Institute of Allergy and Infectious Diseases
National Institutes of Health
Bethesda, MD
Attn: Adriana Marques, M.D
Dear Dr. Marques,
All Tuttle family members progressed to late-stage Lyme before we knew what had gone wrong with our health. None of us tested positive through the FDA's approved two-tier testing algorithm and if we had not met Dr. Sam Donta who spent a career studying Lyme disease at BU School of Medicine, none of us would have been treated.
We missed the narrow window of opportunity for successful short-term treatment. Based on symptom onset, I estimate twelve years undiagnosed, my wife went five years and daughter about four years. It is this scenario that is completely ignored/denied by our Public Health Officials. When Lyme is treated early, up to 20% experience persistent symptoms but patients who go months, years or even decades before diagnosis are almost always incapacitated. Oncologist Dr. Neil Spector required a heart transplant after his Lyme went untreated for years while serology was repeatedly negative.
As you well know, untreated streptococcal pharyngitis (strep throat) 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?[1] [2] [3]
The disease has been misclassified as "hard to catch and easy to halt" so those who do end up disabled are denied Social Security Disability compensation. The IDSA and CDC have been hell bent on keeping this disease in the category of a low-risk and non-urgent health threat.
Focusing on the acute stage of Lyme and early treatment hides the horribly disabled which brings me to the reason for this email...
Question:
Of the 102 children identified in your publication, how many of those patients went months, years or decades before diagnosis?
A response to this inquiry is required.
Respectfully submitted,
Carl Tuttle
Hudson, NH
References:
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/
2. Three Sudden Cardiac Deaths Associated with Lyme Carditis — United States
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm
3. Maine hospital ordered to pay $6.5 million for wrongful Lyme death
https://www.lymedisease.org/maine-hospital-ordered-to-pay-6-5-million-for-wrongful-lyme-death
Cc: Cynthia F. Bearer, MD, PhD Editor-in-Chief, Pediatric Research
Patricia Flatley Brennan, RN, PhD Director National Library of Medicine
Nina F. Schor, MD, PhD, NIH Deputy Director for Intramural Research
Susan K. Gregurick, PhD, NIH Associate Director for Data Science
Michael Lauer, MD, NIH Deputy Director for Extramural Research
Lyric Jorgenson, PhD, Acting NIH Associate Director for Science Policy