https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/23622076?

Dr. Paul Mead, Acting Branch Chief

Carl Tuttle
Hudson, NH, United States

NOV 16, 2018 —
Today’s letter to Dr. Paul Mead of the CDC with Cc: to the TBD Working Group.
—— Original Message ———-
From: Carl Tuttle <runagain@comcast.net>
To: pfm0@cdc.gov, tickbornedisease@hhs.gov
Date: November 16, 2018 at 11:00 AM
Subject: Re: Direct Diagnostic Tests for Lyme Disease Published: 11 October 2018
Nov 16, 2018

Division of Vector-Borne Diseases
Centers for Disease Control and Prevention
3156 Rampart Rd
Fort Collins, Colorado CO 80521
Attn: Paul Mead, MD, MPH Acting Branch Chief
pfm0@cdc.gov

Dear Dr. Mead,
You recently coauthored the following paper in Clinical Infectious Diseases:
Direct Diagnostic Tests for Lyme Disease
Clinical Infectious Diseases, ciy614, https://doi.org/10.1093/cid/ciy614
Published: 11 October 2018

Excerpt:

“… serologic tests cannot distinguish active infection, past infection, or reinfection. Reliable direct-detection methods for active B. burgdorferi infection have been lacking in the past but are needed and appear achievable.”

You are aware that Dr. Neil Spector’s serologic tests were repeatedly negative missing his Lyme disease which led to the destruction of his heart requiring a transplant.[i] And I’m sure you have seen the lawsuit in the Supreme Court of Pennsylvania regarding a misdiagnosis of Multiple Sclerosis due to four negative serology results for Lyme disease. [ii]

These are just two examples of how faulty/misleading antibody tests can alter a person’s life; proof that we are dealing with a very serious life-altering/life-threatening infection here when left untreated.

I want to point out that Post Treatment Lyme Disease Syndrome (PTLDS) and untreated Lyme disease of months, years or decades are two entirely separate disease states with the latter being entirely ignored for over three decades. (Wormser’s racketeering scheme to downplay the severity of Lyme disease)

Could you please answer the following six questions?

  1. What is the CDC’s plan to fast track direct detection laboratory methods for the early detection of Lyme disease i.e.; DNA/Sanger Sequencing, NIST which has been “shown to detect the disease near the time of infection” but has been put on the shelf or PHELIX Phage based PCR?
  2. Just two days ago the CDC announced a “record number” of tickborne diseases:
    Record Number of Tickborne Diseases Reported in U.S. in 2017 November 14, 2018
    https://www.cdc.gov/media/releases/2018/s1114-record-number-tickborne-diseases.html   Excerpt:
    These 2017 data capture only a fraction of the number of people with tickborne illnesses. Under-reporting of all tickborne diseases is common, so the number of people actually infected is much higher. [End of excerpt]
    With over 300,000 new cases of Lyme disease per year, Lyme now has an infection rate six times the AIDS epidemic and twice as prevalent as breast cancer. At what point in time will the U.S. Centers for Disease Control escalate Lyme disease to Highest Alert? (With funding equivalent to the level of threat to public health)
  3. When will the CDC officially recognize chronic relapsing seronegative Lyme disease?
    Seronegative Chronic Relapsing Neuroborreliosis.
    https://www.ncbi.nlm.nih.gov/pubmed/7796837
    A PubMed search for persistent Borrilia infection will uncover hundreds of papers.
  4. When will the CDC disassociate themselves with the seven defendants in the RICO lawsuit who have had a thirty year bias against persistent infection? (No research funding to anyone with a bias against chronic Lyme disease)
  5. What is the plan to fast track research to determine how Lyme disables it victim so we know what we’re dealing with here and how to treat it? In other words, stop focusing on the acute stage of disease after early treatment as listed on page 133 in the Final EIS Assignments of 2017 https://www.cdc.gov/eis/downloads/position-description-book-2017.pdf
    Excerpt: “Analyze existing data from a prospective cohort of 1,000 Lyme disease patients to determine the frequency and identify risk factors for post-treatment Lyme disease syndrome (PTLDS).”
  6. When will the CDC publicly state that Lyme disease is capable of death and severe disability as reported by the patient community for the past three decades?

Dr. Mead, I would like to call attention to your perspective on plague published last year in the New England Journal of Medicine as one of your comments struck a chord with me:
Plague in Madagascar — A Tragic Opportunity for Improving Public Health
https://www.nejm.org/doi/10.1056/NEJMp1713881
Paul S. Mead, M.D., M.P.H.

Excerpt:

“Recent reports suggest that the outbreak is subsiding. This is encouraging news, but the epidemic will leave in its wake several important questions — first and foremost: How big was it really? Without diminishing the suffering of individual patients and their loved ones, it’s important to recognize that plague’s gruesome reputation can cloud short-term understanding of an outbreak.4” [End of excerpt]

How ironic is that statement!

“Without diminishing the suffering of individual patients and their loved ones”

Public outcry over the severity of Lyme has been ignored for decades by the CDC so this is a slap in the face to the horribly sick and disabled Lyme disease patient.

A response to these six questions is requested and please hit “Reply All” as I have carbon copied our legislators here in New Hampshire who have recognized Lyme disease as an “insidious disease.”

Sincerely,
-Carl Tuttle
Lyme endemic Hudson, NH
References:

[i] Neil Spector “Gone in a Heartbeat”
https://www.bayarealyme.org/blog/story/neil-spector/

[ii] [J-13-2018] IN THE SUPREME COURT OF PENNSYLVANIA MIDDLE DISTRICT http://www.pacourts.us/assets/opinions/Supreme/out/Majority%20Opinion%20%20ReversedVacatedRemanded%20%2010373940443079867.pdf?cb=1