Today’s letter calling out the NIH disinformation campaign projecting the illusion that our public health agencies have everything under control….

From: CARL TUTTLE <runagain@comcast.net>
To: Kara.Harris@nih.hhs.gov, tickbornedisease@hhs.gov
Cc: (98 Undisclosed recipients)
Date: April 3, 2020 at 8:48 AM
Subject: National Institutes of Health Response to Lyme Disease

Kara M. Harris, MPH 

Section Chief for Controlled Correspondence and Public Inquiries
Legislative Affairs and Correspondence Management Branch
Office of Communications and Government Relations
National Institute of Allergy and Infectious Diseases
National Institutes of Health

Dear Ms. Harris,

You recently responded to an inquiry from Lyme patient Anne Kupillas on March 31, 2020 which I have included at the end of this email.

I am hoping that you will take the time to answer the highlighted question below in a timely fashion as you did with Anne’s inquiry.

Your note to Anne Kupillas states:

Although progress has been made toward better understanding the challenges resulting from Lyme disease infection, we recognize the importance of tackling those that remain.  Information on how NIAID is addressing Lyme disease is included in the report titled, Current Efforts in Lyme Disease Research, found at 

https://www.niaid.nih.gov/sites/default/files/NIAIDLymeReport.pdf 

You may wish to refer to page 5 which discusses research to address why symptoms persist in some individuals, even after completion of treatment, and page 8 which describes studies underway to better understand and treat Lyme disease infection.

From PAGE 5

Studies on Persistence

NIAID also supports basic research projects to address key questions regarding why symptoms persist in some individuals, even after completion of treatment. Some examples of current research in this area include:

Question [from Carl Tuttle]: Who is doing this research??

·   Studies on drug--tolerant B. burgdorferi persister cells and the underlying mechanisms that may control their formation in response to antibiotic treatment.

·   Investigations into how the bacteria respond to antibiotic stress.

·   Research on how B. burgdorferi may trigger persistent symptoms in the absence of living bacteria, such as autoimmune or chronic inflammatory responses to bacterial components

·    Investigations of persistent infections using xenodiagnosis, a strategy that uses the tick vector to detect the presence of B. burgdorferi in patients when living bacteria are not otherwise detectable by traditional methods.

·    Studies on the mechanisms behind Lyme arthritis, a common manifestation of untreated Lyme disease.

From PAGE 8

NIAID supports several investigators working to better understand both human immunity to B. burgdorferi and the molecular strategies used by the bacteria to avoid these immune responses . These studies will provide insight into multiple areas of Lyme disease research including persistence of symptoms and potential new tools for combating or preventing disease. Some examples include:

Comment [from Carl Tuttle]: Some of these studies are TWENTY-FOUR YEARS OLD!! Adriana Marques has done nothing to find a cure for this antibiotic resistant/tolerant superbug and taxpayer dollars have been squandered on useless research.

ClinicalTrials.gov Identifier:

NCT02446626   2015  Adriana R Marques, M.D.
https://clinicaltrials.gov/ct2/show/NCT02446626

Xenodiagnosis After Antibiotic Treatment for Lyme Disease

NCT00028080  2002 Adriana R Marques, M.D
https://clinicaltrials.gov/ct2/show/NCT00028080?term=NCT00028080

Evaluation, Treatment, and Follow-up of Patients with Lyme Disease

NCT00001539  1996 Adriana R Marques, M.D
https://clinicaltrials.gov/ct2/show/NCT00001539?term=NCT00001539

A Comprehensive Clinical, Microbiological and Immunological Assessment of Patients With Suspected Post Treatment Lyme Disease Syndrome and Selected Control Population

_______________________________________

As far as I’m concerned Ms. Harris, the NIH receives a failing mark regarding its response to Lyme disease! We are dealing with an antibiotic resistant/tolerant superbug and we need better treatment ASAP!!.... patient testimony all across America is describing a disease that is ruining lives, ending careers while leaving its victim in financial ruin. This is not my first encounter with you as you can see from a previous petition update; two years ago you were offering the same useless information

PETITION UPDATE   Aug 2, 2018

Tickborne Diseases — Confronting a Growing Threat (Part 2)
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/23089039

Please answer the highlighted question above.

Sincerely,

Carl Tuttle

______________________________

On Mar 31, 2020, at 11:44 AM, NIAID Ocpostoffice (NIH/NIAID) <OCPOSTOFFICE@niaid.nih.gov> wrote:

Dear Ms. Kupillas:

Thank you for your recent follow-up email to the National Institute of Allergy and Infectious Diseases (NIAID), National Institutes of Health (NIH), regarding Lyme disease.  

Thank you for your inquiry.  We are sorry to hear about your struggle and can understand your need for information. 

You may be interested in reviewing the Tick-borne Disease Working Group 2018 Report to Congress at https://www.hhs.gov/sites/default/files/tbdwg-report-to-congress-2018.pdf  In particular, page 78 states that while there may be disagreement on whether to call it “chronic Lyme disease,” “late-stage Lyme disease,” or “post-treatment Lyme disease syndrome (PTLDS),” it was agreed that individuals with persistent symptoms are legitimately sick and in need of medical care to alleviate suffering today. 

NIAID’s mission is to conduct biomedical research to develop new and improved diagnostics, prevention methods, such as vaccines, and therapeutics to address infectious diseases, including Lyme disease.  Please be assured that the scientists, clinicians, and staff at NIAID care about Lyme disease patients, and our scientific work is unwaveringly rooted in compassion.  Although progress has been made toward better understanding the challenges resulting from Lyme disease infection, we recognize the importance of tackling those that remain.  Information on how NIAID is addressing Lyme disease is included in the report titled, Current Efforts in Lyme Disease Research, found at https://www.niaid.nih.gov/sites/default/files/NIAIDLymeReport.pdf  You may wish to refer to page 5 which discusses research to address why symptoms persist in some individuals, even after completion of treatment, and page 8 which describes studies underway to better understand and treat Lyme disease infection.

Ongoing and future efforts on Lyme disease are also described in the NIAID report titled, NIH Strategic Plan for Tickborne Disease Research.  This report, which may be found at https://www.niaid.nih.gov/sites/default/files/NIH-Strategic-Plan-Tickborne-Disease-Research-2019.pdf highlights current trans-NIH efforts to better understand the complex interplay among host, tick, and pathogen factors that contribute to tick-borne diseases and the body’s defenses against them.  In particular, you may be interested in reviewing the information on page 17 about advancing research on treatment for extended symptoms.

We hope this information will be helpful to you and extend our best wishes for your health.

Sincerely,

Kara M. Harris, MPH     

Section Chief for Controlled Correspondence and Public Inquiries

Legislative Affairs and Correspondence Management Branch

Office of Communications and Government Relations

National Institute of Allergy and Infectious Diseases

National Institutes of Health

DISCLAIMER: NIAID does not endorse or recommend any commercial products, processes, or services. The views and opinions of authors expressed on the NIAID website do not necessarily state or reflect those of the U.S. government and may not be used for advertising or product endorsement purposes. Any non-government resources are provided for your convenience. NIAID is not responsible for the availability, content, or privacy policies of non-federal organizations’ materials or websites, nor does NIAID endorse, warrant, or guarantee the products, services, or information described or offered by such organizations. Non-federal public websites do not necessarily operate under the same laws, regulations, and policies as federal websites. It is not the intention of NIAID to provide specific medical advice, but rather to provide users with information to better understand their health and their diagnosed disorders. Specific medical advice will not be provided, and NIAID urges you to consult with a qualified physician for diagnosis and for answers to your personal questions.