Yesterday, I posted this:  https://madisonarealymesupportgroup.com/2018/07/26/tickborne-diseases-confronting-a-growing-threat/  (Please read the article in this link including my comments at the bottom before Tuttle’s response below so it will make more sense)

The one thing I didn’t deal with that I will point out now is this regurgitated number in the NEJM article of 10-20% of patients moving on to chronic/persistent Lyme.  The following informative article written by Lorraine Johnson points out this number to be considerably higher which corresponds to my experience as a patient advocate:  https://madisonarealymesupportgroup.com/2018/07/22/lyme-costs-may-exceed-75-billion-per-year/.  Excerpt below:

Besides the staggering financial cost to this 21st century plague, this paper, based on estimates of treatment failure rates associated with early and late Lyme, estimates that 35-50% of those who contract Lyme will develop persistent or chronic disease.

Let that sink in.

And in the Hopkins study found 63% developed late/chronic Lyme symptoms.
For some time I’ve been rankled by the repeated CDC statement that only 10-20% of patents go on to develop chronic symptoms. This mantra in turn is then repeated by everyone else.

While still an estimate, I’d say 35 to over 60% is a tad higher than 10-20%, wouldn’t you? It also better reflects the patient group I deal with on a daily basis. I can tell you this – it’s a far greater number than imagined and is only going to worsen.

Now for Tuttle’s response:

https://www.change.org/p/1120418/u/23062391?utm_medium=email&utm_source=petition_update&ut

PETITION UPDATE

Tickborne Diseases — Confronting a Growing Threat

Carl Tuttle
Hudson, NH
JUL 26, 2018 — Please see the letter below addressed to Anthony S. Fauci, M.D., Director, National Institute of Allergy and Infectious Diseases (NIAID).

It would appear that the racketeering scheme to downplay the severity of Lyme disease is rampant throughout all government health agencies.

Letter to Anthony S. Fauci, M.D:

———- Original Message ———-
From: Carl Tuttle
To: Anthony.Fauci@nih.hhs.gov
Cc: catharine.paules@nih.hhs.gov, hilary.marston@nih.hhs.gov, Marshall.Bloom@nih.hhs.gov, comments@nejm.org, ddutko@hanszenlaporte.com, chris.smith@mail.house.gov, collin.peterson@mail.house.gov, jdrazen@nejm.org, info@massmed.org, president@massmed.org, mmsvp@massmed.org
Date: July 26, 2018 at 9:16 AM
Subject: Tickborne Diseases — Confronting a Growing Threat

Tickborne Diseases — Confronting a Growing Threat

Catharine I. Paules, M.D., Hilary D. Marston, M.D., M.P.H., Marshall E. Bloom, M.D., and Anthony S. Fauci, M.D. This article was published on July 25, 2018, at NEJM.org.
https://www.nejm.org/doi/full/10.1056/NEJMp1807870

Excerpt:

“Although most cases are successfully treated with antibiotics, 10 to 20% of patients report lingering symptoms after receiving appropriate therapy.”

July 26, 2018

Office of the Director,
National Institute of Allergy and Infectious Diseases (NIAID),
National Institutes of Health,
Bethesda, MD 20892
Attn: Anthony S. Fauci, M.D., Director

Dear Dr. Fauci,

There has been a thirty year fixation on the acute stage of Lyme disease (with bulls-eye rash) after early treatment however patients with a prolonged exposure to the pathogen before diagnosis and initial treatment are almost always incapacitated.

You know that untreated strep throat progresses to rheumatic fever causing irreversible heart damage. What happens to the Lyme patient who went months, years or decades before diagnosis? Dr. Neil Spector required a heart transplant after his Lyme went undiagnosed for four years while his laboratory tests (serology) were repeatedly negative. [1]

Singer/songwriter Kris Kristofferson was being treated for Alzheimer’s disease when discovering he had undiagnosed Lyme disease. [2]

Autopsy results identify the destructive nature of Borrelia as evident in Vicky Logan’s liver (nutmeg liver), kidneys, heart, lungs and brain. The patient died after the insurer refused additional IV antibiotic therapy. [3]

There is a growing patient population of this class of disabled patient who has been ignored for nearly four decades. Lyme disease is a life-altering/life-threatening infection misclassified as a low-risk and non-urgent health issue through an elaborate racketeering scheme as outlined in the SHRADER & ASSOCIATES, LLP racketeering lawsuit. [4] The U.S. Centers for Disease Control has aligned themselves with the seven defendants/academics named in this RICO lawsuit.
From your article:

“Nonserologic platform technologies may also improve diagnostic capabilities, particularly in identifying emerging pathogens. Two previously unknown tickborne RNA viruses, Heartland virus and Bourbon virus, were discovered by researchers using next-generation sequencing to help link organisms with sets of unexplained clinical symptoms.”

When Sanger sequencing identified a case of chronic Lyme disease, the CDC stopped all communication with the Director of Milford Molecular Diagnostics. [5], [6]

The recently published Middelveen paper reported persistent infection as the majority of patients were culture positive for infection even after multiple years on antibiotics so there was no relief from current antimicrobials. Some patients had taken as many as eleven different types of antibiotics. [7]
_______________________

Dr. Fauci; your “Perspective” published in the New England Journal of Medicine does not mention anything I have presented here so it would appear that you are caught up in this racketeering scheme to suppress the severity of a disease that is destroying lives, ending careers, causing death and disability while leaving victims in financial ruin. There are no Public Service Announcements informing the public that you could become horribly disabled or die from Lyme disease.

It is time to move Lyme disease to HIGHEST ALERT and remove the CDC’s stronghold over the progress to find a curative approach for the late stage Lyme epidemic. [8]

Acknowledgment and response to this letter is requested.

Respectfully submitted,

Carl Tuttle
Lyme Endemic Hudson, NH

Cc: Attorney Daniel Dutko of Hanszen Laporte
U. S. Representatives Chris Smith and Colin Peterson