Madison Area Lyme Support Group

Notice to everyone who has signed this petition:

The following so-called “National Committee” has been established turning persistent Lyme symptoms into a new acronym: Lyme Infection-Associated Chronic Illness (Lyme IACI)

Medscape

‘Doesn’t Fit Anything I Trained for’: National Committee Examines Treatment for Chronic Illness Following Lyme Disease

https://www.medscape.com/viewarticle/doesnt-fit-anything-i-trained-national-committee-examines-2024a1000dru

So now, Chronic Lyme will be swept under the rug for more decades to come despite the mountain of evidence that we have been dealing with an antibiotic resistant/tolerant superbug!

I don’t think this committee is looking to solve (expose) the chronic Lyme epidemic …. it seems more likely this is an opportunity to exploit the chronically infected with money making pharmaceuticals to treat the symptoms of an antibiotic resistant/tolerant superbug.

“Lyme IACI” conveniently sweeps chronic Lyme under the rug.

Please see the email below addressed to Dr. Ben Beard of the CDC with carbon copy to all members of this committee. I ask that everyone demand a response from Beard. You can copy all email addresses below and send a private email or post a comment to the NASEM Committee’s website: https://www8.nationalacademies.org/pa/feedback.aspx?type=project&key=HMD-HSP-23-07

Inquiry to Ben Beard:

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “cbb0@cdc.gov” <cbb0@cdc.gov>
Cc: “jjohnson@genevausa.org” <jjohnson@genevausa.org>, “theerhisamariee@gmail.com” <theerhisamariee@gmail.com>, “jaucott@jhmi.edu” <jaucott@jhmi.edu>, “cbb0@cdc.gov” <cbb0@cdc.gov>, “jraitt1@stanford.edu” <jraitt1@stanford.edu>, “dclauw@med.umich.edu” <dclauw@med.umich.edu>, “john.leong@tufts.edu” <john.leong@tufts.edu>, “avindra.nath@nih.gov” <avindra.nath@nih.gov>, “charles.chiu@ucsf.edu” <charles.chiu@ucsf.edu>, “elliot.cowan@partnersindiagnostics.com” <elliot.cowan@partnersindiagnostics.com>, “beth.jaworski@nih.hhs.gov” <beth.jaworski@nih.hhs.gov>, “roger@lundquist.org” <roger@lundquist.org>, “rachele.hendricks.sturrup@duke.edu” <rachele.hendricks.sturrup@duke.edu>, “info@lymebiobank.org” <info@lymebiobank.org>, “lorrainejohnson@outlook.com” <lorrainejohnson@outlook.com>, “wendyadams1@gmail.com” <wendyadams1@gmail.com>, “Leith.States@hhs.gov” <Leith.States@hhs.gov>, “tindall.matt@gmail.com” <tindall.matt@gmail.com>, “stacie.hudgens@clinoutsolutions.com” <stacie.hudgens@clinoutsolutions.com>, “raymond_dattwyler@nymc.edu” <raymond_dattwyler@nymc.edu>, “timothy.sellati@globallymealliance.org” <timothy.sellati@globallymealliance.org>, “nklimas@nova.edu” <nklimas@nova.edu>, “kester@genevausa.org” <kester@genevausa.org>, “nicole@nicolemalachowski.com” <nicole@nicolemalachowski.com>, “marcom@genevausa.org” <marcom@genevausa.org>, “stephen.gluckman@pennmedicine.upenn.edu” <stephen.gluckman@pennmedicine.upenn.edu>, “epocratesMedia@athenahealth.com” <epocratesMedia@athenahealth.com>, “epocrates@athenahealth.com” <epocrates@athenahealth.com>
Date: 07/31/2024 7:40 AM EDT
Subject: Inquiry to the Deputy Director of the Vector-Borne Diseases Division at the CDC

Charles B Beard
Deputy Division Director, Division of Vector-Borne Diseases
Centers for Disease Control and Prevention

Dear Dr. Beard,

In 1991 the Lyme disease organism, Borrelia burgdorferi, was grown from the cerebrospinal fluid of patient Vicki Logan at the Centers for Disease Control in Fort Collins, Colorado despite prior treatment with intravenous antibiotics. The patient died when the insurer refused additional IV antibiotics. I have attached a copy of Logan’s positive culture report for your review:

Logan CDC Fort Collins Positive CSF Culture Report (Personal Dropbox storage area)
https://www.dropbox.com/scl/fi/agca4ynn9ok2ykgw6484q/Logan-CDC-Fort-Collins-Positive-CSF-Culture-Report.JPG?rlkey=krhiecm1xdmqs6ubhvjxuzzeo&dl=0

In 1995 the following publication identified treatment-resistant neuroborreliosis:
 
European Neurology 1995
Seronegative Chronic Relapsing Neuroborreliosis
https://www.karger.com/Article/Abstract/117104

In 2018 all patients were culture positive even after multiple years on antibiotics so there was no relief from current antimicrobials. Some of these patients had taken as many as eleven different types of antibiotics. Barbour-Stoener-Kelly (BSK) medium was used and is the same complex medium used in the NIH funded Klempner antibiotic trials.

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
https://www.mdpi.com/2227-9032/6/2/33

A recently published autopsy study for a young Lyme patient who committed suicide identifies chronic Lyme disease in the patient’s brain which was responsible for his neurological symptoms.

Concurrent Infection of the Human Brain with Multiple Borrelia Species
Published in MDPI Nov. 29, 2023
https://www.mdpi.com/1422-0067/24/23/16906

Excerpt:

The diverse strategies used by spirochetes to avoid the host immune system and persist in the host include active immune suppression, induction of immune tolerance, phase and antigenic variation, intracellular seclusion, changing of morphological and physiological state in varying environments, formation of biofilms and persistent forms, and, importantly, incursion into immune-privileged sites such as the brain. Invasion of immune-privileged sites allows the spirochetes to not only escape from the host immune system but can also reduce the efficacy of antibiotic therapy. 

In addition, there are 700 peer reviewed publications identifying persistent infection and more evidence of seronegative disease.

Question:

As Deputy Director of the Vector-Borne Diseases Division at the CDC, why has all the evidence indicating Borrelia as an antibiotic resistant/tolerant superbug been ignored for decades?

A response to this inquiry is requested.

Please hit reply all when responding.

Carl Tuttle
Hudson, NH

_______________

**Comment**

When reading the Medscape article, please notice the following:

The committee will not make recommendations on specific approaches to diagnosis and treatment when it issues a report in early 2025 but will instead present “consensus findings” on treatment for chronic illness associated with Lyme disease, including recommendations for advancing treatment.

There have been only a few randomized controlled trials (RCTs) conducted on what the committee is calling Lyme Infection-Associated Chronic Illness (Lyme IACI) for now, and no National Institutes of Health (NIH)-funded RCTs in the past 20 years or so. It’s an area void of the US Food and Drug Administration-approved therapies, void of any consensus on the off-label use of medications, and without any current standard of care or proven mechanisms and pathophysiology, said John Aucott, MD, director of the Johns Hopkins Medicine Lyme Disease Clinical Research Center, Baltimore, one of the invited speakers at a public meeting held by the NASEM in Washington, DC, in July.”

The best way to look at this illness is not from the silos of infectious disease or the silos of rheumatology; you have to look across disciplines,” Aucott, also associate professor of medicine in the Division of Rheumatology, told the committee. “The story doesn’t fit anything I trained for in my infectious disease fellowship. Even today, I’d posit that PTLD is like an island — it’s still not connected to a lot of the mainstream of medicine.”

COVID showed the world the devastating impact of ‘consensus-based medicine,’ which a report has deemed ‘shocking and immortal.’ In this Communist-type paradigm doctors are told by bureaucrats how to treat, what they can use to treat, and what they can’t use to treat.  Anything outside the lines of this monolith simply aren’t allowed.  Doctors who dare to think for themselves are persecuted and ostracized – with the full weight of the government pressing down upon them –  often times losing their medical license.

This is the world Lyme literate doctors (LLMDs) have lived in for forty years.

The article also regurgitates that only 10-20% go on to suffer with persistent symptoms after treatment, when the actual percentages are approximately 60% as many are not diagnosed or treated until much later – often years later.

Lyme/MSIDS will never fit into RCTs because there are too many variables to fit into a nice four-cornered research box.  Many never test positive on the CDC-2-tiered testing, many never get an EM rash, numerous coinfections are involved, not to mention the fact there are multiple strains of borrelia that testing will not pick up, and symptoms are wildly variable.  No two patients look alike.