Today's letter to the Tick-Borne Disease Working Group.
Special note: Karen Vanderhoof-Forschner forwarded her 20year study of the "Lyme Disease Cost to U.S. Patients $343 Billion from 1997 to 2017"
“37% of that cost occurs before diagnosis!!”
---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, brian.napack@wiley.com
Cc: ltp9@cdc.gov (corresponding author Amy M. Schwartz of the CDC)
Date: June 18, 2020 at 10:48 AM
Subject: Epidemiology and cost of Lyme disease-related hospitalizations among patients with employer-sponsored health insurance— United States, 2005–2014
Wiley Online Library
Epidemiology and cost of Lyme disease-related hospitalizations among patients with employer-sponsored health insurance— United States, 2005–2014
https://onlinelibrary.wiley.com/doi/abs/10.1111/zph.12699
Amy M. Schwartz, Manjunath B. Shankar, Kiersten J. Kugeler, Ryan J. Max, Alison F. Hinckley, Martin I. Meltzer, Christina A. Nelson
Excerpt:
Based on extrapolation to the U.S. population, we estimate that 2,196 Lyme disease‐related hospitalizations in persons under 65 years of age occur annually with an estimated annual cost of $25,826,237
To the Tick-Borne Disease Working Group,
Once again, we see another disingenuous study from the CDC as it does not represent the entire Lyme patient population. The true cost of the Lyme disease burden falls on the backs of those who are treating their chronic relapsing seronegative disease. [1] Patient testimony all across America is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin.
All Tuttle family members advanced to late stage Lyme before we knew what had gone wrong with our health. At this stage of disease, (after many years of declining health) the one-size-fits-all IDSA treatment guideline of two to three weeks doesn’t even scratch the surface.
I stopped counting after reaching $100,000 out of pocket and in 2018 my insurance claims exceeded $600,000 as described in the attached testimony for New Hampshire House Bill 490. House Bill 490 by the way passed in the House and Senate and is on the way to the governor’s office for final approval.
Testimony:
https://www.dropbox.com/s/1m3svaws1d37j1h/HB490%20Testimony.docx?dl=0
I met an individual from Salem New Hampshire who had to sell his 1.4-million-dollar summer home on Lake Winnipesaukee in order to treat an entire family of late stage Lyme patients. (Name and contact number available upon request)
Dr. Neil Spector’s untreated Lyme led to a heart transplant. Is the cost of his transplant included in this publication? I am very sorry to report that Dr. Neil Spector recently passed away. [2]
Since the focus has been on the acute stage of disease after early treatment, those who advance to the late debilitating stage are left to fend for themselves. This class of patient has been deliberately and purposely ignored because acknowledging Lyme as a serious life-altering/life-threatening infection exposes the well-established racketeering scheme which categorizes Lyme disease as “hard to catch and easily treated.” [3] One of the strategies of this racketeering scheme was to suppress evidence of persistent infection after extensive antibiotic treatment and then claim there is no evidence.
The 2008 documentary “Under our Skin” exposed the truth about this horribly disabling disease. I recommend you watch the extended trailer to gain an understanding of what is being reported all across America.
Under our Skin 5min extended trailer
https://www.youtube.com/watch?v=sxWgS0XLVqw&feature=channel_page
It is no surprise that the academics who have controlled the Lyme disease narrative for the past thirty years are defendants of a racketeering lawsuit as their narrow view of Lyme disease is nothing like what we are experiencing in real life. The CDC is not counting the number of lives ruined by this disease.
Court upholds claims under RICO, against doctor defendants
https://static1.squarespace.com/static/5936c3f21e5b6c2c02c40842/t/5e4ab27887b2ad50b4a78381/1581953657711/show_temp.pl.pdf
The maximum penalty authorized for a RICO violation is 20 years in jail.
It is blatantly obvious that the CDC has colluded with the defendants of the RICO lawsuit and this article is just another in a long list to downplay the severity of a disease that is wreaking havoc across America. The amount of legislation for Lyme disease alone is proof that the Centers for Disease Control is either corrupt or incompetent.
Respectfully submitted,
Carl Tuttle
Lyme Endemic Hudson, NH
Cc: Brian Napack, Wiley President & CEO
References
[1] Seronegative Chronic Relapsing Neuroborreliosis.
https://www.ncbi.nlm.nih.gov/pubmed/7796837
[2] The Lyme community has lost a hero and a friend: Dr. Neil Spector
https://www.lymedisease.org/dr-neil-spector-has-died/
[3] Lyme Disease Is Hard to Catch And Easy to Halt, Study Finds
New York Times By GINA KOLATA Published: June 13, 2001
http://www.nytimes.com/2001/06/13/us/lyme-disease-is-hard-to-catch-and-easy-to-halt-study-finds.html
Excerpt: But some who have treated hundreds of patients with long-term antibiotics, like Dr. Sam L. Donta of Boston University Medical Center, were not convinced. The antibiotics in the studies were not given for a long enough time, Dr. Donta said, and he would have chosen different ones. Perhaps all that the studies show, he said, is ''that this particular treatment doesn't work.''