Please feel free to use the letter below for future legislation/litigation in the mishandling of Lyme disease here in the U.S.
Two Lyme disease Bills are being submitted in New Hampshire as this disease continues to wreak havoc on the unsuspecting public.
A Bill requiring doctors to inform patients that Lyme testing is unreliable:
HB490
https://legiscan.com/NH/text/HB490/id/1962817/New_Hampshire-2019-HB490-Amended.html
A Bill requiring insurance companies to pay for long term antibiotic treatment:
HB 1287 relative to the duration of antibiotic therapy for tick-borne illness.
http://gencourt.state.nh.us/bill_status/billText.aspx?sy=2020&v=HI&id=1206&txtFormat=html
--------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov
Cc: (83 Undisclosed recipients)
Date: January 23, 2020 at 12:43 PM
Subject: HB 1287 relative to the duration of antibiotic therapy for tick-borne illness.
To The Tick-Borne Disease Working Group,
Please see the letter below addressed to the New Hampshire House Committee regarding proposed legislation requiring insurance companies to pay for long term antibiotics.
Carl Tuttle
Lyme Endemic Hudson, NH
Letter to the New Hampshire House Committee:
---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: edofthenotch@gmail.com, Wendy.E.Thomas@leg.state.nh.us, Kathryn.Stack@leg.state.nh.us
Cc: (27 Undisclosed recipients)
Date: January 23, 2020 at 12:21 PM
Subject: HB 1287 relative to the duration of antibiotic therapy for tick-borne illness.
HB 1287 relative to the duration of antibiotic therapy for tick-borne illness. http://gencourt.state.nh.us/bill_status/billText.aspx?sy=2020&v=HI&id=1206&txtFormat=html
Jan 23, 2019
New Hampshire House Committee
Room 302, Legislative Office Building
107 North Main Street
Concord, NH 03301
Attn: Representative Edward Butler, Committee Chair
Dear Rep Butler,
In 2009 the Tuttle family was featured on New Hampshire Chronicle’s “Living with Lyme” along with two other families. (One hour special)
All Tuttle family members advanced to late stage Lyme before obtaining a diagnosis after years of deteriorating health. If we hadn’t met Dr. Sam Donta who spent a career studying Lyme disease at BU School of Medicine, none of us would have been treated. None of us tested positive for Lyme disease under the current FDA approved two-tier testing algorithm as we did not meet the strict CDC Western blot criteria for positive results. (2 out of 3 IgM bands and 5 out of 10 IgG bands)
Our daughter developed an attention deficit disorder so severe that she could no longer read a chapter and retain what was read. A stroke-like episode landed her in the hospital and an MRI revealed white matter lesions but an astute neurologist recognized that these lesions did not resemble the lesions found in MS patients.
My wife could barely walk up a flight of stairs without excruciating knee pain and we thought for certain that she would require knee replacement surgery.
In the fall of 2008 I was bedridden, on oxygen and near death after chasing an unresolved fatigue for twelve years. I was ping-ponged through the medical community with deteriorating health and told that I had chronic fatigue syndrome, mitochondrial disease etc. I was forgetting the names of my coworkers of twenty-five years and often did not recognize where I was on my commute home. I was being tested for early Alzheimer's disease. (Similar to Kris Kristofferson)
Lyme disease ended my 25yr career in High Tech.
Carl Tuttle with O2 concentrator: https://www.dropbox.com/s/z5918st7pegw4lf/Carl%20Tuttle%20O2%20Concentrator.JPG?dl=0
A Slow Slipping Away Kris Kristofferson’s Long Undiagnosed Battle with Lyme Disease. By Dana Parish https://www.lymedisease.org/members/lyme-times/2016-fall-news/kris-kristofferson-lyme-disease/
I’m happy to report that my wife has fully recovered with no remaining symptoms but that was only achieved after two years of antibiotics. My daughter reached similar results but her recovery took three years of antibiotics.
I’m finally off antibiotics after nine years which included 7 months with a PICC line for administering IV antibiotics. Each and every time I stopped taking the antibiotics all Lyme symptoms would return with a vengeance. Unfortunately my case of Lyme progressed to Lymphoma as I often tested positive for reactivated Epstein Barr virus (Mono) while treating Lyme.
Chronic Epstein Barr has been associated with Lymphoma.
Epstein Barr laboratory result (my personal Dropbox storage area)
https://www.dropbox.com/s/iuco0lwurit7a6s/Reactivated%20EBV.JPG?dl=0
My insurance claims in 2018 exceeded $600,000 and my right kidney was removed in March of 2019.
So what is the take-home message for someone reading our family’s experience with Lyme disease?
-Good luck developing the bulls-eye rash after tick bite.
-Good luck obtaining a positive test result for Lyme disease.
-Good luck finding a doctor who knows how to recognize Lyme disease symptoms.
-Good luck getting reimbursed after the one-size fits-all treatment approach fails.
Everyone reading this letter is a single tick bite away from experiencing this travesty as patient testimony all across America is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin.
For the record; it should be noted that the seven academics who have controlled the Lyme disease narrative for the past thirty years are all defendants in a racketeering lawsuit out of Texas District Court. Eight insurance companies along with the Infectious Diseases Society of America (Who established the treatment guidelines) are also defendants. One insurance company has already settled out of court and I believe this case goes to trial in February.
All the defendants have colluded to deny persistent infection (chronic Lyme) after antibiotic treatment.
Court Document: https://www.dropbox.com/s/18uyrli878ug51m/LymeDisease%20RICO%20Lawsuit.pdf?dl=0
Summary: In the absence of the bulls-eye rash, the likelihood of obtaining a timely diagnosis in a state with one of the highest reported number of Lyme disease cases is virtually nonexistent. Lyme disease is a national public health disaster as we are dealing with an antibiotic resistant/tolerant superbug.
Respectfully submitted,
Carl Tuttle
Lyme Endemic Hudson, NH
Cc: Rep. Wendy Thomas, Rep Kathryn Stack,
James Potter, Executive Vice President, New Hampshire Medical Society