Madison Area Lyme Support Group

My communication sent to the Tick-Borne Disease Working Group:

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “Dennis.Dixon1@nih.hhs.gov” <Dennis.Dixon1@nih.hhs.gov>
Cc: (All members of the TBDWG)
Date: 07/09/2022 8:55 AM
Subject: Written Public Comment – July 19-20, 2022 Meeting
 
 
To: All members of the Tick-Borne Disease Working Group,
 
Please see my submission below for the upcoming meeting. As you all know, my previous Written Public Comment was censored removing all references so I wanted to make sure you had an opportunity to read my comment in its entirety. 

It would appear that I’m not the only free thinking individual who recognizes a false narrative as the recent paper below published by academics at the University of Texas, Boston University School of Medicine and George Mason University support my observations; Public Health Officials are propagating a false Lyme disease narrative.
 
Neurological Pain, Psychological Symptoms, and Diagnostic Struggles among Patients with Tick-Borne Diseases
https://www.mdpi.com/2227-9032/10/7/1178

Abstract

Public health reports contain limited information regarding the psychological and neurological symptoms of tick-borne diseases (TBDs). Employing a mixed-method approach, this analysis triangulates three sources of symptomology and provides a comparison of official public health information, case reports, medical literature, and the self-reported symptoms of patients with Lyme disease and other TBDs. Out of the fifteen neuropsychiatric symptoms reported in the medical literature for common TBDs, headaches and fatigue and/or malaise are the only two symptoms fully recognized by public health officials. Of TBDs, Lyme disease is the least recognized by public health officials for presenting with neuropsychiatric symptoms; only headaches and fatigue are recognized as overlapping symptoms of Lyme disease. Comparisons from a patient symptoms survey indicate that self-reports of TBDs and the associated symptoms align with medical and case reports. Anxiety, depression, panic attacks, hallucinations, delusions, and pain—ranging from headaches to neck stiffness and arthritis—are common among patients who report a TBD diagnosis. Given the multitude of non-specific patient symptoms, and the number and range of neuropsychiatric presentations that do not align with public health guidance, this study indicates the need for a revised approach to TBD diagnosis and for improved communication from official public health sources regarding the wide range of associated symptoms. View Full-Text
 
 
Carl Tuttle’s Written Public Comment:
 
———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “tickbornedisease@hhs.gov” <tickbornedisease@hhs.gov>
Date: 07/08/2022 9:34 AM
Subject: Written Public Comment – July 19-20, 2022 Meeting
 
Preferred identification: 
Carl Tuttle
Hudson, NH 

Member of NH Gov Chris Sununu’s Lyme Disease Study Commission
http://www.gencourt.state.nh.us/statstudcomm/committees/default.aspx?id=1515 
 
To the Tick-Borne Disease Working Group, 

I would like to call attention to a recent paper published in the open access journal BMJ Global Health “More than 14% of the world’s population likely has (had) tick-borne Lyme disease” [1] indicated by the presence of antibodies in the blood, revealing a pooled data analysis of the available evidence. 

As of July 2022, current world population is 7.9 billion and 14% of that number would equal 1.1 billion Lyme infections. 

The CDC claims that a conservative 10% of those treated for EARLY Lyme disease do not recover ending up with Post-treatment Lyme Disease Syndrome. Other studies identified in Dr. John Aucotts’s 2020 paper has that number as high as 36 to 50% [2] and yet no one is keeping track of the number of individuals left disabled by the disease; those who went years before diagnosis missing the narrow window of opportunity for successful short-term treatment.  

If we use say 20% as a multiplier, 220 million may have been left in a debilitated state and the only thing we have in the pipeline after thirty years is a vaccine fast-tracked by the FDA in 2017. 

It would appear that all the eggs have been put into one basket for the sake of a vaccine leaving the sick and disabled to fend for themselves. Sicken in place while we wait for a vaccine; sound familiar? A chronic relapsing seronegative disease doesn’t fit the vaccine model. Is that why we have avoided these patients and why the CDC refuses to recognize the disabling stage of Lyme disease? If we studied the horribly disabled, chronic infection would be uncovered. Postmortem studies have already proven that we have been dealing with an antibiotic resistant/tolerant superbug. 

The false narrative that Lyme disease is hard to catch and easily treated with 2-4weeks of antibiotics was created by those who had a vested interest in profiting from a vaccine. The CDC has propagated that false narrative for decades and to this day refuses to recognize the disabling stage of Lyme disease. Wake up America! 
 
Carl Tuttle
Hudson NH 

References: 

1. More than 14% of world’s population likely has (had) tick-borne Lyme disease
https://www.bmj.com/company/newsroom/more-than-14-of-worlds-population-likely-has-had-tick-borne-lyme-disease 

2. Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease
Alison W. Rebman and John N. Aucott    Feb 2020
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7052487/