The IDSA’s Post Treatment Lyme Disease Syndrome was not good enough! (Part 2)
Please see the following response to my inquiry previously sent to Dr. Marcia McNutt regarding the National Academies Report “Lyme Infection-Associated Chronic Illnesses”
Original inquiry found here:
The IDSA’s Post Treatment Lyme Disease Syndrome was not good enough!
Response from the National Academies of Sciences:
———- Original Message ———-
From: “Liao, Julie” <JLiao@nas.edu>
To: CARL TUTTLE <runagain@comcast.net>
Date: 05/19/2025 9:47 AM EDT
Subject: Re: Inquiry on National Academies report, Charting a Path Toward New Treatments for Lyme Infection-Associated Chronic Illnesses
Good morning,
I am a senior program officer at the National Academies and co-director of the study that produced the report, Charting a Path Toward New Treatments for Lyme Infection-Associated Chronic Illnesses. Dr. McNutt shared your message with me, and I am responding on her behalf as a lead staff for the project.
First of all, thank you for your interest in this report and sharing these concerns. The National Academies committee that authored this report is aware of the painful history of disbelief and mistrust in the early days of recognizing and studying persistent symptoms associated with Lyme disease. It is their hope that this report takes the first step toward moving past this history to catalyze actions that prioritize discovery and development of new, effective, safe treatments for people living with these symptoms. To this end, the report explicitly recognizes that Lyme infection-associated chronic illnesses are real, and that these illnesses are debilitating to the health and well-being of many individuals.
Regarding the concern on funding development and use of new antimicrobials, the report recognizes that there may be a multitude of pathogenic mechanisms and calls for exploration of new treatments that can address the different potential pathways leading to these chronic symptoms. This includes pathogen persistence, as well as autoimmunity or other immune dysregulation as a result of Lyme disease.
It is the committee’s hope that new evidence will continue to emerge and advance our collective knowledge and ability to mitigate and one day cure these infection-associated chronic illnesses, including those associated with Lyme disease.
Warm regards,
Julie
Julie Liao, PhD (she/her)
Co-Director
Forum on Microbial Threats
Study on Evidence Base for Lyme-IACI Treatment
Keck 854 | (202) 334-2191
National Academies of Sciences, Engineering, and Medicine
500 Fifth Street, NW
Washington, DC 20001
nationalacademies.org/HMD
Carl Tuttle’s reply:
———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “Liao, Julie” <JLiao@nas.edu>
Cc: “mmcnutt@nas.edu” <mmcnutt@nas.edu>, “vdzau@nas.edu” <vdzau@nas.edu>, “wkearney@nas.edu” <wkearney@nas.edu>, “dmay@nas.edu” <dmay@nas.edu>, “amacdonald@nas.edu” <amacdonald@nas.edu>
Date: 05/20/2025 10:02 AM EDT
Subject: Re: Inquiry on National Academies report, Charting a Path Toward New Treatments for Lyme Infection-Associated Chronic Illnesses
Dear Dr. Liao,
Thank you for responding to my inquiry sent to Dr. Marcia McNutt which is now in the public domain posted as an Update to the Change.org petition; Calling for a Congressional investigation of the CDC, IDSA and ALDF with 106,773 verified signatures.
The optimal treatment for Lyme disease has yet to be determined because the focus early on went directly into developing a vaccine. Here are some examples of how other difficult infections have been handled:
It was once believed that rifampin was curative in treating Brucellosis but when symptoms returned doxycycline was added to the mix and when that too failed a third antibiotic, streptomycin was added to the current treatment regimen. [1] [2]
In 1985 the worldwide incidence of leprosy was 6,000,000. Last year, it was 800,000. The only thing that changed was the addition of rifampin to dapsone in the treatment of the disease. Rifampin was added to dapsone because the M leprae were becoming resistant and it was a new antibiotic at that time.
Treatments for multidrug-resistant tuberculosis have been introduced (bedaquiline and delamanid) with more in the pipeline. [3]
A new treatment for recurrent Clostridium difficile was recently studied (bezlotoxumab) for reducing the risk of a repeat infection. [4]
In contrast, oral amoxicillin or doxycycline remains the treatment of choice for treating Lyme disease for over thirty years regardless if debilitating symptoms return. In 1977 Dr. Allen Steere knew that these antibiotics were not effective for all patients [5] but there has been no change in treatment or research to find more effective ways to eradicate the infection in all stages/forms of disease.
At what point in time do we recognize that we are dealing with an antibiotic resistant/tolerant superbug and focus our research on finding new antimicrobials for this life-altering/life-threatening disease as more of the population becomes severely disabled from inappropriately treated Lyme disease.
From your reply: The report recognizes that there may be a multitude of pathogenic mechanisms and calls for exploration of new treatments that can address the different potential pathways leading to these chronic symptoms. This includes pathogen persistence, as well as autoimmunity or other immune dysregulation as a result of Lyme disease.”
Those of us who have studied the mishandling of Lyme disease believe this is just lip service and the real effort will be spent on expensive treatments for the sick and disabled Lyme community still suffering from chronic Lyme; there’s more profit in providing a lifetime of drugs than on a cure and if a chronic relapsing seronegative disease were identified through the proposed “actions” it would end the current vaccine dream overnight because you cannot prove vaccine efficacy in a disease where we do not know who has or does not have the infection; having a curative approach would also give the public an excuse not to take their vaccine. (Let that sink in)
The Evidence is overwhelming that we have been dealing with an antibiotic resistant/tolerant superbug while the so-called science is (mis)used for legalized gaslighting (Follow the science) The IDSA/CDC have defined the disease (= high costs) away so when patients object; MD’s successfully hide behind their definition and guidelines.
I want to make this crystal clear: Suppressing evidence of antibiotic resistance (as well as ignoring these actions) is a crime and the National Academies has been given detailed notice of this atrocity.
Questions:
1. Will the search to find new antibiotics [6] be the research priority?
2. Who will be given responsibility for these studies? (certainly not the same researchers who previously received Lyme funding from the CDC/NIH)
A response to this inquiry is requested.
Carl Tuttle
Independent Researcher
Hudson, NH
Cc: Marcia McNutt, President of the National Academy of Sciences and Chair of the National Research Council
REFERENCES (PLEASE READ!)
1. Chronic Brucellosis and Persistence of Brucella melitensis DNA
https://www.ncbi.nlm.nih.gov/pubmed/?term=Chronic+Brucellosis+and+Persistence+of+Brucella+melitensis+DNA
After acute brucellosis infection, symptoms persist in a minority of patients for more than 1 year. Such patients are defined as having chronic brucellosis. Since no objective laboratory methods exist to confirm the presence of chronic disease, these patients suffer delays in both diagnosis and treatment.
2. Administration of a triple versus a standard double antimicrobial regimen for human brucellosis more efficiently eliminates bacterial DNA load.
https://www.ncbi.nlm.nih.gov/pubmed/25246401
The doxycycline-streptomycin-rifampin regimen eliminates Brucella DNA more efficiently than doxycycline-streptomycin, which may result in superior long-term clearance of Brucella.
3. Global Introduction of New Multidrug-Resistant Tuberculosis Drugs—Balancing Regulation with Urgent Patient Needs
https://wwwnc.cdc.gov/eid/article/22/3/15-1228_article
4. New C.diff treatment reduces recurrent infections by 40%
https://www.sciencedaily.com/releases/2017/01/170126081724.htm
5. Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three connecticut communities. (1977)
Steere AC, Malawista SE, Snydman DR, Shope RE, Andiman WA, Ross MR, Steele FM.
Excerpt:
“The best treatment for this illness is not clear. Some physicians have reported that penicillin or tetracycline results in disappearance of the skin lesion (41,42), but others find antibiotics ineffective. Four of the patients with expanding skin lesions received penicillin but still developed arthritis.”
6. Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic
Raphael B. Stricker, Lorraine Johnson
Published: January 02, 2014
http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.1003796
Carl Tuttle’s follow-up message:
———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “Liao, Julie” <JLiao@nas.edu>
Cc: “mmcnutt@nas.edu” <mmcnutt@nas.edu>, “vdzau@nas.edu” <vdzau@nas.edu>, “wkearney@nas.edu” <wkearney@nas.edu>, “dmay@nas.edu” <dmay@nas.edu>, “amacdonald@nas.edu” <amacdonald@nas.edu>
Date: 05/21/2025 8:42 AM EDT
Subject: Re: Inquiry on National Academies report, Charting a Path Toward New Treatments for Lyme Infection-Associated Chronic Illnesses
Dr. Liao,
It’s no surprise that the Chair of your committee that published the Consensus Study Report is a vaccinologist. This validates everything I have been reporting about the rush to create a vaccine for Lyme which led to the deliberate mishandling of the disease.
It is obvious that the priority here is still the Lyme vaccine and finding a cure for chronic Lyme is just lip service.
THE GENEVA FOUNDATION
CHAIR OF THE BOARD OF DIRECTORS
KENT KESTER, MD, COL (RET.), USA
https://genevausa.org/about/leadership-in-military-medicine/board-of-directors/col-ret-kent-kester/
Kent E. Kester, M.D., is currently Executive Director
Vaccine Research and Development at the Coalition
for Epidemic Preparedness Innovations (CEPI)
Carl Tuttle
_______________
Part 1 here: https://madisonarealymesupportgroup.com/2025/05/16/tuttle-destroys-nasems-lyme-disease-report/
I posted the NASEM Report – ‘new treatments for Lyme Infection-Associated Chronic Illnesses’ here: https://madisonarealymesupportgroup.com/2025/05/09/charting-a-path-towards-new-treatments-for-chronic-lyme-disease/
Again, here is the old 2014 interview with Willy Burgdorfer where he states research must be started over at square one because the same people have been doing the research and coming up with the same results – nothing!
http:// Approx. 5 Min
Willy Burgdorfer 2014
“Money goes to people that have for the past 30 years produced the same thing. Nothing.” ~ Willy Burgdorfer
Well, it’s now been a total of more than 40 years and the same thing is being produced, which is nothing.
Yeah – I agree. Total lip-service to patients.
Madison Area Lyme Support Group 