Madison Area Lyme Support Group

Jan 12, 2022

Senator Rand Paul
167 Russell Senate Office Building
Washington DC, 20510

Dear Senator Paul,

In reference to the mishandling of the COVID-19 pandemic, thank you for keeping the pressure on Dr. Anthony Fauci.
https://www.youtube.com/watch?v=3JNPDf9DZDo

Americans are getting a first hand look at how our public health officials control the narrative to promote a vaccine. The Lyme disease patient population has been shouting from the rooftops for the past thirty years as this life-altering/life-threatening infection has been destroying lives, ending careers while leaving its victim in financial ruin. I provided Dr. Anthony Fauci with solid references and a 1033-page document with patient testimony identifying Lyme as a life-altering/life-threatening infection. An astute fifth grader would easily recognize something is seriously wrong here as the patient experience does not match the existing CDC disease representation. (“Hard to catch and easily treated”)

The rush to create a vaccine led to the mishandling of the disease as a chronic relapsing seronegative disease did not fit the vaccine model and the diagnostic testing was manipulated to facilitate vaccine development. (Dearborn Conference) The criteria for positive results are far too strict leaving many with false negative results. The serious consequences of untreated Lyme disease are avoided by our public health officials as the disabling stage of Lyme is denied.

I have sent many emails to Dr. Fauci over the years and have included a few below for your review.

Respectfully submitted,

Carl Tuttle
Hudson, NH

Member of Gov Chris Sununu’s Lyme Disease Study Commission
http://www.gencourt.state.nh.us/statstudcomm/committees/default.aspx?id=1515Calling for a Congressional investigation of the CDC, IDSA and ALDF
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf
97,000 Signatures 951,373 Views and 27,324 SharesEmails to Dr. Anthony Fauci….

Date: 07/31/2018 8:40 AM
Subject: Re: Tickborne Diseases — Confronting a Growing Threat

Dr. Fauci,

Below I have listed nine randomly selected comments from disabled Lyme patients across America. These comments were collected from the petition calling for a congressional investigation into the mishandling of Lyme disease. I have THOUSANDS of these comments describing an illness that is destroying lives, ending careers, causing death and disability while leaving victims in financial ruin.

You can download the entire comment file here: (1033 pages)
https://www.dropbox.com/s/qwuo4yss38ov1f3/petition_comments_June%2018%202018.pdf?dl=0

How long will you continue to ignore these patient experiences without challenging what has been deceitfully established by the CDC/IDSA and American Lyme Disease Foundation which is simply a clearinghouse for the propaganda and disinformation?

All of the honest scientific evidence/patient testimony is showing that Lyme belongs in the same health threat category as AIDS.

As you read the comments below I ask the question; does this sound like “Aches and pains of daily living”?

Comments:

1. My 16 year old daughter has late stage, neurological Lyme Disease. I have watch over the past several years as she has had to give up so much. She has stopped playing sports (basketball, soccer, and softball), dancing, eating many different foods, going to school, and even just spending time with friends. We have been to many different doctors with many different specialties looking for answers and have finally received a clinical diagnosis of Lyme Disease from two doctors who are working together to try to help her. The challenge now is to get her strong enough to endure the treatment that she is facing. We are told it may take years of treatment to get her to a reasonable quality of life. It is devastating to see my daughter struggle with all of this at a time when her friends are enjoy things like prom, graduations, and even just youth group activities while she sits at home suffering. This is a terrible disease!
Catherine Weakley, Virginia Beach, VA

2. My best friend’s life has been devastated by Lyme Disease for the last several years. If only her doctors had taken her concerns and symptoms seriously in the beginning and administered the proper tests, she may not have gone through so many years of pain. I accompanied her to these appointments and watched first hand as her symptoms were ignored and mis diagnosed over and over again. She has gone through years of suffering that could have been prevented had she been diagnosed at the start and given antibiotics. For the sake of her and the many others who are suffering needlessly I urge you to investigate this matter fully and support education, awareness, acceptance and action throughout the medical community.
Samantha Erin Barragar, Malibu, CA

3. I have been suffering from Neurological Lyme Disease since I was 15 years old. A year and a half ago, I had a serious flare up that has left me disabled with seizures, tremors, cognitive issues, immobility, and chronic pain. The severity of this disease should not be overlooked, and warrants significant research. The outdated and immoral IDSA guidelines must be investigated for the sake of all current and future persons infected with Lyme. Our voices deserve to be heard!
Caren Dandeo, Middletown, NJ

4. I’m positive for lyme and co infections and was getting better with treatment, then insurance stopped paying. I’m wheelchair bound now and cannot stand, move, or take care of myself. United HealthCare cited the CDC guidelines of 28 days of antibiotics of treatment. THAT’S NOT ENOUGH.
Doug Frenz, Hudson, OH

5. I’m only 20 years old and I’ve suffered from Lyme Disease for the past 6 years of my life. For the first few years of my disease I went undiagnosed; doctors would tell me I was crazy, and I continued to get sicker and sicker. My 15 year old sister is also really sick with Lyme and has been for years. It breaks my heart. There has to be something serious done about this epidemic, and fast.
Niki Mitchell, Binghamton, NY, NY

6. My 4 Lyme tests came back “negative” according to my PCP’s. I was “negative” for 8 years while I did indeed have Lyme. When I visited 2 LLMD’s they both verified that I had Lyme. Had it been caught 8 years prior it could have been cured. Instead, it spread to all parts of my body and brain. I in turn became a burden on the healthcare system and lost all of my assets. Accurate testing MUST be developed!
Serenaty S, New York, NY

7. I am disabled, in a wheelchair, and currently on IV medicine to try and kill off Lyme, Babesia, and Bartonella. I am in huge debt because insurance refuses to pay for anything – not doctor visits, not medicine, nothing. Too many are sick and dying. Enough.
Wendy Vogt, Redwood City, CA

8. My husband has been diagnosed with neurological lyme and the coinfections of bartonella and babesia. We spent years going form doctor to doctor trying to find out what he has. His illness reached the point where he is no longer able to work. Our insurance company will not approve the IV antibiotics he needs to get better due to the current CDC guidelines. The illness does not just affect the patient but the entire family. Lyme needs to be addressed.
Kathy Wilder Bichler, Fair Lawn, NJ

9. Spent over $100,000 dollars to get our son well in Oklahoma. 21 doctors would not recognize Lyme disease because of ignorance. We went out of state to find a LLMD. It is an awful disease and in so many ways. His Lyme test only had one band positive so according to the CDC is not proof of Lyme. Well wrong…he was pulled 5 ticks off himself and 3 days later severally I’ll for the next 2 1/2 years of being homebound. We where lucky we had a savings but I took our retirement money.
Diana Clock, Bixby, OK

PRIORITY # 1 MOVE LYME DISEASE TO HIGHEST ALERT AS IT SHOULD HAVE BEEN THIRTY YEARS AGO!

Carl Tuttle

Lyme Endemic Hudson, NH

Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic
Raphael B. Stricker, Lorraine Johnson
Published: January 02, 2014DOI: 10.1371/journal.ppat.100379
http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.1003796

“In summary, preliminary studies from the CDC indicate that the Lyme disease epidemic has reached an unprecedented level with at least 300,000 people and as many as one million people, a majority of them women and children, diagnosed with Lyme disease each year in the United States. The staggering magnitude of the epidemic should prompt the CDC to show leadership in developing new guidelines for the diagnosis and treatment of Lyme disease. A coordinated “Manhattan project” similar to the attack mounted against the HIV/AIDS epidemic is urgently needed to address the serious worldwide threat of Lyme disease.”

Cc: Attorney Daniel Dutko of Hanszen Laporte

Representatives Chris Smith and Colin Peterson

________________________________________

On July 30, 2018 at 4:26 PM Carl Tuttle <runagain@comcast.net> wrote:

Dr. Fauci,

This is a second request for acknowledgement and response to my email dated July 26, 2018.

As an MD you are well aware that untreated syphilis leads to progressive disability and dementia while untreated HIV infection progresses to AIDS with significant disability and death. 

Again I ask the question Dr. Fauci; “What happens to the Lyme patient who went months, years or decades before diagnosis?”

Late stage Lyme disease is a horribly disabling disease and to hide this from the public while ignoring patient testimony is ethically and morally inexcusable yet this is exactly what has been taking place for the past three decades while the focus was to discredit the sick and disabled comparing the disease to the “aches and pains of daily living.” (Wormser term)

Based on the article you coauthored in the NEJM it would appear that you haven’t been entirely straightforward while omitting the facts and references I presented in my previous letter.

Please hit “Reply All” when responding to this inquiry so that those involved in Lyme disease legislation and litigation can hear from you directly. (Not a correspondence officer)

Sincerely,

-Carl Tuttle

Lyme Endemic Hudson, NH

_________________________________________________

On July 26, 2018 at 9:16 AM Carl Tuttle <runagain@comcast.net> wrote:

Tickborne Diseases — Confronting a Growing Threat

Catharine I. Paules, M.D., Hilary D. Marston, M.D., M.P.H., Marshall E. Bloom, M.D., and Anthony S. Fauci, M.D.

This article was published on July 25, 2018, at NEJM.org.

https://www.nejm.org/doi/full/10.1056/NEJMp1807870

Excerpt:

“Although most cases are successfully treated with antibiotics, 10 to 20% of patients report lingering symptoms after receiving appropriate therapy.”

July 26, 2018

Office of the Director,
National Institute of Allergy and Infectious Diseases (NIAID),
National Institutes of Health,
Bethesda, MD 20892
Attn: Anthony S. Fauci, M.D., Director

Dear Dr. Fauci,

There has been a thirty year fixation on the acute stage of Lyme disease (with bulls-eye rash) after early treatment however patients with a prolonged exposure to the pathogen before diagnosis and initial treatment are almost always incapacitated.

You know that untreated strep throat progresses to rheumatic fever causing irreversible heart damage. What happens to the Lyme patient who went months, years or decades before diagnosis? Dr. Neil Spector required a heart transplant after his Lyme went undiagnosed for four years while his laboratory tests (serology) were repeatedly negative. [1]

Singer/songwriter Kris Kristofferson was being treated for Alzheimer’s disease when discovering he had undiagnosed Lyme disease. [2]

Autopsy results identify the destructive nature of Borrelia as evident in Vicky Logan’s liver (nutmeg liver), kidneys, heart, lungs and brain. The patient died after the insurer refused additional IV antibiotic therapy. [3]

There is a growing patient population of this class of disabled patient who has been ignored for nearly four decades. Lyme disease is a life-altering/life-threatening infection misclassified as a low-risk and non-urgent health issue through an elaborate racketeering scheme as outlined in the SHRADER & ASSOCIATES, LLP racketeering lawsuit. [4] The U.S. Centers for Disease Control has aligned themselves with the seven defendants/academics named in this RICO lawsuit.

From your article:

“Nonserologic platform technologies may also improve diagnostic capabilities, particularly in identifying emerging pathogens. Two previously unknown tickborne RNA viruses, Heartland virus and Bourbon virus, were discovered by researchers using next-generation sequencing to help link organisms with sets of unexplained clinical symptoms.”

When Sanger sequencing identified a case of chronic Lyme disease, the CDC stopped all communication with the Director of Milford Molecular Diagnostics. [5], [6]

The recently published Middelveen paper reported persistent infection as the majority of patients were culture positive for infection even after multiple years on antibiotics so there was no relief from current antimicrobials. Some patients had taken as many as eleven different types of antibiotics. [7]

_______________________

Dr. Fauci; your “Perspective” published in the New England Journal of Medicine does not mention anything I have presented here so it would appear that you are caught up in this racketeering scheme to suppress the severity of a disease that is destroying lives, ending careers, causing death and disability while leaving victims in financial ruin. There are no Public Service Announcements informing the public that you could become horribly disabled or die from Lyme disease.

It is time to move Lyme disease to HIGHEST ALERT and remove the CDC’s stronghold over the progress to find a curative approach for the late stage Lyme epidemic. [8]

Acknowledgment and response to this letter is requested.

Respectfully submitted,

Carl Tuttle
Lyme Endemic Hudson, NH

Cc: Attorney Daniel Dutko of Hanszen Laporte
Representatives Chris Smith and Colin Peterson

REFERENCES: (Please read them!)

1. What It’s Like to Have Severe Lyme Disease
https://www.thecut.com/2015/06/what-its-like-to-have-severe-lyme-disease.html

2. A Slow Slipping AwayKris Kristofferson’s Long Undiagnosed Battle with Lyme Disease.
https://www.lymedisease.org/members/lyme-times/2016-fall-news/kris-kristofferson-lyme-disease/

3. Vicky Logan’s Autopsy results
1 https://www.dropbox.com/s/5ykib95sfp66adb/Logan%20Autopsy%201.JPG?dl=0

2 https://www.dropbox.com/s/lysfqd3vjc63bkl/Logan%20Autopsy%202.JPG?dl=0

3 https://www.dropbox.com/s/zq7kj953f7mejkn/Logan%20Autopsy%203.JPG?dl=0

4 https://www.dropbox.com/s/uqkgxynm5bn88jg/Logan%20Autopsy%204.JPG?dl=0

5 https://www.dropbox.com/s/id8bbppoiscxuiq/Logan%20Autopsy%205.JPG?dl=0

6 https://www.dropbox.com/s/mnms2un02g19kg7/Logan%20Autopsy%206.JPG?dl=0

7 https://www.dropbox.com/s/nfvqbidao16yynf/Logan%20Autopsy%207.JPG?dl=0

4. SHRADER & ASSOCIATES, LLP racketeering lawsuit
https://www.dropbox.com/s/18uyrli878ug51m/LymeDisease%20RICO%20Lawsuit.pdf?dl=0

5. $57.1 Million Lyme Disease Lawsuit Filed Against CDC
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/22752033

6. COMPLAINT:
https://www.dropbox.com/s/zem4v9sceg1v63d/Lee%20CDC%20Complaint%205-15-2018.pdf?dl=0

7.  Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
http://www.mdpi.com/2227-9032/6/2/33

8. Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic
Raphael B. Stricker, Lorraine Johnson

Published: January 02, 2014DOI: 10.1371/journal.ppat.100379

http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.1003796