Please see the following correspondence sent to the Editors of the Journal of the American Medical Association regarding the latest Wormser/Shapiro publication. These letters were forwarded to the Tick Borne Disease Working Group.
Note: Funding for this propaganda piece was provided by the NIH (Wasteful taxpayer spending)
The Shapiro/Wormser Viewpoint published in the Journal of the American Medical Association can be found here: https://jamanetwork.com/journals/jama/fullarticle/2696480
The picture attached to this update is Howard Bauchner, MD Editor in Chief found at the following JAMA link: https://jamanetwork.com/journals/jama/pages/for-authors
Third letter sent to the JAMA Editorial Office:
-------- Original Message ----------
From: Carl Tuttle <runagain@comcast.net>
To: Phil.Fontanarosa@jamanetwork.org
Cc: Howard.Bauchner@jamanetwork.org, Rosa.Miranda@jamanetwork.org, ddutko@hanszenlaporte.com, chris.smith@mail.house.gov, collin.peterson@mail.house.gov
Date: August 9, 2018 at 9:07 AM
Subject: RE: Lyme Disease in 2018 What Is New (and What Is Not)
Aug 9, 2018
JAMA Editorial Office
American Medical Association
P.O. Box 10946
Chicago, IL 60654
ATTN: Phil B. Fontanarosa, MD, MBA, Executive Editor, JAMA
Dear Dr. Fontanarosa,
There are a number of serious discrepancies that should be addressed in the Shapiro/Wormser Viewpoint published in the Journal of the American Medical Association.
For example:
1. “….there has not been a statistically significant increase in the number of reported cases of Lyme disease in the United States during the most recent 4 years (2013-2016) for which data are available”
New Quest Diagnostics Data Shows Lyme Disease Prevalence Increasing and is Now Present in New U.S. States
- Number of positive tests for Lyme disease increased significantly between 2016 and 2017.
- Historically concentrated in Pennsylvania and New England states, Lyme disease has been detected in each of the 50 United States and the District of Columbia.
- Outside of the northeastern U.S., California and Florida - states not historically associated with significant rates of Lyme disease - saw the largest absolute increases in positive Lyme disease test results.
- Notable increases also observed in Georgia, Arizona, Ohio, Texas, Tennessee and Virginia.
2. “The vast majority of patients with Lyme disease (90%) develop the characteristic skin lesion, erythema migrans.” (Bulls-eye rash)
The state of Maine has recorded an average of 48.25% incidence of rash-related Lyme from 2009-2012 (See page 3 of each document below)
http://www.maine.gov/dhhs/reports/lymereport.pdf -- 2009, 59%
http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/lyme-legislature-2010.pdf -- 2010, 43%
http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/2011-lyme-legislature.pdf -- 2011, 42%
http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/2012-lyme-legislature.pdf -- 2012, 49%
These numbers indicate that your chances of developing the bulls-eye rash are worse than a coin toss.
3. “For extracutaneous manifestations of Lyme disease, the sensitivity of antibody tests is excellent (87%-100%)”
Duke University Oncologist Dr. Neil Spector required a heart transplant after his Lyme went undiagnosed for four years while his laboratory tests (serology) were repeatedly negative. (Additional examples of seronegative Lyme are available upon request)
What It’s Like to Have Severe Lyme Disease
https://www.thecut.com/2015/06/what-its-like-to-have-severe-lyme-disease.html
Dr. Fontanarosa, as an MD, you know that untreated strep throat progresses to rheumatic fever causing irreversible heart damage. You also know that that untreated syphilis leads to progressive disability and dementia while untreated HIV infection progresses to AIDS with significant disability and death.
Wormser and Shapiro have spent their careers downplaying the severity of Lyme disease often comparing Lyme to the “aches and pains of daily living.”
Case in point; In the Wormser/Shapiro Viewpoint, where is the paragraph on the consequences of untreated Lyme disease?
Somehow the peer-review process at the Journal of the American Medical Association has failed to detect this “viewpoint” as propaganda. Might this be considered collusion in a court of law?
As spokesperson for the 65,000 individuals signing the petition calling for a congressional investigation of the mishandling of Lyme disease I respectfully request that you consider retracting this deplorable viewpoint which deliberately misleads the reader.
A copy of this request has been sent to Attorney Daniel Dutko of Hanszen Laporte and U. S. Representatives Chris Smith and Colin Peterson.
Sincerely,
Carl Tuttle
Lyme Endemic Hudson, NH
____________________________________
Second letter sent to the JAMA Editorial Office:
---------- Original Message ----------
From: Carl Tuttle <runagain@comcast.net>
To: Phil.Fontanarosa@jamanetwork.org
Cc: Rosa.Miranda@jamanetwork.org, Howard.Bauchner@jamanetwork.org
Date: August 3, 2018 at 2:43 PM
Subject: RE: Lyme Disease in 2018 What Is New (and What Is Not)
Dear Dr. Fontanarosa,
Thank you for taking the time to respond to my inquiry. I want to be certain that you understand I mean no disrespect here but I think there is something you need to see.
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/Personal Dropbox account)
https://www.dropbox.com/s/qwuo4yss38ov1f3/petition_comments_June%2018%202018.pdf?dl=0
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
Respectfully submitted,
-Carl Tuttle
Lyme Endemic Hudson, NH
___________________________________________
First letter sent to the JAMA Editorial Office:
--------- Original Message ----------
From: Carl Tuttle <runagain@comcast.net>
To: bauchner@bu.edu
Cc: p-fontanarosa@northwestern.edu, james.madara@northwestern.edu, jamams@jamanetwork.org
Date: August 3, 2018 at 9:20 AM
Subject: Lyme Disease in 2018 What Is New (and What Is Not)
Aug 3, 2018
JAMA Editorial Office
American Medical Association
P.O. Box 10946
Chicago, IL 60654
Howard Bauchner, MD, Editor in Chief
Dear Dr. Bauchner,
Please be advised that Shapiro and Wormser have been named in a racketeering lawsuit (RICO) filed in Texas District Court over the mishandling of Lyme disease here in the United States.
I have attached a copy of the court document for your review.
https://www.dropbox.com/s/18uyrli878ug51m/LymeDisease%20RICO%20Lawsuit.pdf?dl=0
Why is this not stated in the Conflict of Interest Disclosures area of this published JAMA viewpoint?
There has been a thirty year fixation on the acute stage of Lyme with bulls-eye rash after early treatment but what happens to the Lyme patient who went months, years or decades before diagnosis?
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.
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)
Quite frankly Wormser and Shapiro are a disgrace to the medical profession and yet you give them the stage to broadcast their propaganda. Shameful indeed.
Carl Tuttle
Lyme Endemic Hudson, NH
Cc: Attorney Daniel Dutko of Hanszen Laporte
Representatives Chris Smith and Colin Peterson