Madison Area Lyme Support Group

Please see the following email sent to the Tick-Borne Disease Working Group…

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov
Cc: eugene shapiro <eugene.shapiro@yale.edu> (97 Undisclosed Recipients)
Date: June 10, 2019 at 9:37 AM
Subject: Dr. Eugene Shapiro and “medically unexplained symptoms”

To the Tick-Borne Disease Working Group,

Although we have no test to gauge treatment failure or success Dr. Shapiro knows for certain that chronic symptoms are unrelated to Lyme disease.

Please take a moment to view the 2014 videotaped interview below where Dr. Shapiro describes the term “medically unexplained symptoms” and urges the medical community to develop ways to prevent “healthcare-seeking behaviors” by parents who believed their children may have Lyme disease.

Eugene Shapiro, MD, on suspected Lyme disease

“…it’s very clear that simply telling parents that Lyme disease is not the cause of these nonspecific symptoms such as fatigue, various pain syndromes that is not sufficient and that we need a new paradigm to how to best manage such patients. Often it’s not the pediatric infectious disease specialists who doesn’t have an ongoing relationship with his patients who is likely the best but someone who can develop a trusting relationship with them. Very frequently these parents are seeking affirmation that these symptoms are real and in fact they are real it’s just that they’re not caused by Lyme disease…..”

________________

Consider the following 1988 study:

Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi.

Dattwyler RJ, Volkman DJ, Luft BJ, Halperin JJ, Thomas J, Golightly MG.
https://www.ncbi.nlm.nih.gov/pubmed/3054554

Excerpt:

“We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in seronegative patients with clinical indications of chronic Lyme disease.”

In contrast to Dr. Shapiro’s videotaped interview I have provided nine randomly selected comments from the 1033 page comment file shared with Kristen Honey, member of last year’s TBDWG.

PDF file shared on Aug 7, 2018:

https://www.dropbox.com/s/qwuo4yss38ov1f3/petition_comments_June%2018%202018.pdf?dl=0

As you read the comments below I ask the question; how is this being passed off as “medically unexplained symptoms?”

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 misdiagnosed 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
Respectfully submitted,

Carl Tuttle

Lyme Endemic Hudson, NH

Cc: Eugene Shapiro, MD Professor of Pediatrics

Lyme Bumper Stickers (Public Service Announcement)
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WAKE UP AMERICA!