Today’s follow-up email to New York Medical College….
--------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, brett.giroir@hhs.gov, Kathryn_Brady@nymc.edu, Michelle_Cho@nymc.edu, Donna_McKenna@nymc.edu, Carol_Scavarda@nymc.edu
Cc: (84
Date: February 11, 2019 at 9:01 AM
Subject: Re: Efficacy of a 14-day course of amoxicillin for patients with erythema migrans
Efficacy of a 14-day course of amoxicillin for patients with erythema migrans.
https://www.sciencedirect.com/science/article/pii/S0732889318303304
Feb 11, 2019
Division of Infectious Diseases,
New York Medical College,
Valhalla, NY 10595
Attn: Kathryn Brady, Michelle Cho, Carol Scavarda, Donna McKenna
To: The coauthors of Wormser’s early Lyme treatment study,
Please explain to the Tick Borne Disease Working Group and Assistant Secretary for Health, ADM Brett P. Giroir, M.D. how Dr. Wormser’s study would help Lyme disease patients who miss the narrow window of opportunity for successful short term treatment. (Hit Reply-all)
As you should know, 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. Dr. Neil Spector’s Lyme disease infection went undetected for four years requiring a heart transplant. His serologic test results over that four year period were repeatedly negative and he never developed a bulls-eye rash.
https://www.bayarealyme.org/blog/story/neil-spector/
Patients who miss the narrow window of opportunity for successful short term treatment and have had a prolonged exposure to the pathogen are almost always incapacitated.
Testimony over thirty years is reporting a disease that is destroying lives, ending careers while leaving its victim in financial ruin. We have an epidemic of ruined lives as these patients are left to fend for themselves.
I am posting below, nine randomly selected comments from disabled patients across America. These comments were obtained from a 1,100 page PDF comment file shared with the TBD Working Group. Does this sound like a simple nuisance disease where we should be focusing on the acute stage? Why is Dr. Wormser fixated on “early Lyme”?
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
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/c/16756338
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
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/c/16911159
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
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/c/17122287
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
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/c/16740845
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
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/c/106293211
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
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/c/106162751
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
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/c/34100179
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
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/c/377719670
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.