The following letters were written after reviewing two projects from the LymeX team as reported by Lymedisease.org:
Asst. HHS Secretary Levine keynotes Congressional Lyme Series event
https://www.lymedisease.org/levine-keynote-congressional-lyme/
Project# 1 Health+ Lyme Disease Human-Centered Design Report (from Coforma)
https://medium.com/coformaco/health-plus-lyme-disease-archetypes-e71e8586b36c
Project# 2 Roundtable Summary Report called Bridging the Trust Gap
https://www.lymedisease.org/wp-content/uploads/2021/06/Bridging-the-Trust-Gap.pdf
Email sent to Assistant Secretary for Health, Dr. Rachel Levine followed by the letter sent to Coforma:
---------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>To: "Rachel.Levine@hhs.gov" <Rachel.Levine@hhs.gov>Cc: "Kristen.Honey@hhs.gov" <Kristen.Honey@hhs.gov>, "mtal@stanford.edu" <mtal@stanford.edu>, "info@rideoutlyme.org" <info@rideoutlyme.org>, "marybethpf@aol.com" <marybethpf@aol.com>
Date: 06/29/2021 9:39 AM
Subject: Asst. HHS Secretary Levine keynotes Congressional Lyme Series event
Asst. HHS Secretary Levine keynotes Congressional Lyme Series event
https://www.lymedisease.org/levine-keynote-congressional-lyme/
June 29, 2021
The U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
Attn: Assistant Secretary for Health, Dr. Rachel Levine
Dear Dr. Levine,
In reference to your keynote address at Tuesday’s Congressional Lyme Series presentation, I sent the following letter to Coforma to set the record straight.
Carl Tuttle
Hudson, NH
Member of Governor Chris Sununu’s Lyme Disease Study Commission
http://www.gencourt.state.nh.us/statstudcomm/details.aspx?id=1515&rbl=1&txtbillnumber=hb490
Letter to Coforma:
Health+ Lyme Disease Human-Centered Design Report Articulates Four Patient Archetypes
https://medium.com/coformaco/health-plus-lyme-disease-archetypes-e71e8586b36c
Coforma, LLC
1200 18th St NW
Washington, DC 20036
Attn: Eduardo Ortiz, Chief Executive Officer
Dear Mr. Ortiz,
I find it rather disturbing that Coforma avoids using the word “DISABLED” when describing the later stage of Lyme disease which leaves patients bedridden or in a wheelchair. [i] Instead, Coforma uses the term “Disrupted Without Capacity” perpetuating the established 30yr dogma that Lyme is not a disabling disease.
Lyme was pigeonholed into the category of “Hard to Catch and Easily Treated” through an elaborate scheme focusing on the acute stage of disease with bulls-eye rash and early treatment while avoiding the horribly disabled Lyme patient population. The Centers for Disease Control financed the dishonest science using taxpayer dollars [ii] under grant# RO1 CK 000152 [iii] which has misguided a nation of intelligent physicians through the deliberate suppression of evidence of persistent Borrelia infection after aggressive antibiotic treatment. [iv]
This well-orchestrated scheme has misclassified Lyme as a low-risk and non-urgent health threat which actually belongs in the same health threat category as AIDS, Zika, cancer etc. and requires a Manhattan Project to understand how the infection disables its victim just like untreated strep throat leads to rheumatic fever causing irreversible heart damage, untreated HIV leads to AIDS with substantial disability and death and untreated syphilis leads to progressive disability and dementia. Patients with a prolonged exposure to the Lyme disease pathogen are almost always incapacitated. A large number of these patients are often diagnosed with the chronic diseases of our time with no known etiology as exposed in the “Under our Skin” extended trailer:
Under Our Skin - Extended Trailer
https://www.youtube.com/watch?v=sxWgS0XLVqw
There are no guidelines for treating the late stage disabled Lyme patient who ends up bedridden or in a wheelchair listed in the recently revised IDSA Lyme Treatment Guideline because that class of patient has been deliberately avoided at all costs so as not to expose the truth while keeping the current paradigm intact.
In fact, the IDSA doesn’t want clinicians to rule out Lyme in patients who have been diagnosed with the chronic diseases of our time:
June article in Medscape by past IDSA president Paul Auwaerter
A Quick Tour of the New Lyme Disease Guideline
https://www.medscape.com/viewarticle/951589
Paul G. Auwaerter, MD
June 14, 2021
Excerpt:
“Of importance, the guideline goes out of its way to cite the lack of evidence for performing Lyme disease tests, specifically routine testing in cases where there's no evidence or link to Lyme disease. Examples include someone who is asymptomatic after a tick bite, even when they have a neurologic condition such as amyotrophic lateral sclerosis, multiple sclerosis, Parkinson's disease, dementia, or any kind of new-onset seizures or psychiatric illness. In children, behavioral and developmental disorders don't warrant assessing a Lyme disease serology.”
__________________________________
I sent an email to Dr. Auwaerter pointing out that a recent study identified tick-borne infections in nine out of ten institutionalized adolescents: [v] [vi]
Study detects tick-borne illness in teens hospitalized for depression
https://www.lymedisease.org/hospitalized-teens-lyme-depression/
-Ten patients were diagnosed with DSM-5 Major Depressive Disorder, seven were additionally diagnosed with Generalized Anxiety Disorder, and three had made serious suicide attempts.
-Ten adolescents picked at random with mental illness severe enough that they required institutionalization— nine of them had evidence of tick-borne infections and nine had evidence of autoimmune encephalitis.
_________________________________________
Instead of playing along with the dishonesty by avoiding the truth/evidence that Lyme is a disabling disease, our public health officials responsible for this travesty should be thoroughly investigated and held accountable to ensure this atrocity will never repeat itself.
Respectfully Submitted,
Carl Tuttle
Hudson, NH
Member of Governor Chris Sununu’s Lyme Disease Study Commission
http://www.gencourt.state.nh.us/statstudcomm/details.aspx?id=1515&rbl=1&txtbillnumber=hb490
References (please read them!)
[i] NEWS: Former patient who testified as a child about Lyme disease recalls encounter with Sen. Ted Kennedy
https://www.lymedisease.org/186/
Evan White testified from his wheelchair in 1993 at Senator Ted Kennedy’s Hearing, Washington DC
Excerpt:
“No one could hear or feel the moment of that child and not be moved,” Kennedy explained to the [Boston] Globe at the time. Anyone who wasn’t moved, he said, “hasn’t got a heart.”
[ii] Feb 4, 2020 complaint regarding the misuse of taxpayer dollars
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/25876147
[iii] Subjective Symptoms after Treatment of Lyme Disease
https://reporter.nih.gov/search/14E9C8084784C1D47598B8961CAA4A01A2FFCEB861BF/projects?shared=true&legacy=1
[iv] Lyme borreliosis: diagnosis and management
https://www.bmj.com/content/369/bmj.m1041/rr-1
[v] A Quick Tour of the New (IDSA) Lyme Disease Guideline
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/29231613
[vi] A Quick Tour of the New (IDSA) Lyme Disease Guideline #2
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/29263852