Archive for the ‘Uncategorized’ Category

Live Lyme Awareness Events

Dr. Rawls Live Lyme Awareness Event

Lyme Awareness Month is well underway, and the stories and conversations happening in the #WeSeeYou space are already inspiring real connection and momentum.
We’re especially excited for our featured event this Friday at 1 PM ET, where we’ll be joined by Nicole Bell, author of What Lurks in the Woods.
Nicole will share her powerful journey through illness, caregiving, and advocacy—shining a light on what it means to search for answers in the face of the unknown.
Now the CEO of Galaxy Diagnostics, Nicole brings a unique blend of personal and professional insight into the challenges of chronic illness and the urgent need for better diagnostics and deeper understanding.

New Podcast Conversations with Dr. Rawls

This month, Dr. Rawls has been sharing his insights on chronic illness and recovery through a series of podcast interviews.

Catch him on:

  • Culture Apothecary – A heartfelt discussion on healing, trauma, and resilience in chronic illness. Listen or watch here »
  • Ancient Health Podcast with Dr. Chris Motley – A dynamic conversation covering chronic infections, herbal therapies, and how cellular health is key to recovery. Listen here »

Save the Date and RSVP:

Join us next week for a live conversation with Olivia Abrams, co-founder and CEO of TiCK MiTT to hear her powerful story of being impacted by Lyme disease as a child and how it led her to create a tool with her father that’s changing prevention for others! Hosted by Ali Moresco.

Event Date: Wednesday, May 14th, 2 pm ET

RSVP here »

We hope to see you at an upcoming event soon!
– The RawlsMD Team
P.S. Get a pair of our limited edition Lyme Awareness Sunglasses at Vital Plan! Buy a pair for your self or a loved one or get a pair for free with any order over $50 at Vital Plan.

Advances in Lyme & Babesiosis Research

https://www.globallymealliance.org/news/from-diagnostics-to-disease-mechanisms-advances-in-lyme-and-babesiosis-research?

Cutting-edge research funded by GLA advances diagnostics and insights into Lyme disease and babesiosis, identifying key biomarkers and genetic risk factors.

Three GLA-funded investigators have been making exciting progress. Dr. Rafal Tokarz’s team has been uncovering key insights into the immune response to specific proteins of Lyme bacteria, paving the way for more accurate diagnostics. Dr. Ben Mamoun has achieved an important milestone by developing the first diagnostic tests for detecting active Babesia duncani infections.  Dr. Klemen Strle’s research suggests that specific genetic factors may increase the risk of developing chronic Lyme arthritis. Meanwhile, Dr. Strle’s new findings are shedding light on how certain genetic factors may heighten the risk of developing chronic Lyme arthritis. 

Summary: 

GLA-funded research continues to shed light on key aspects of Lyme and tick-borne diseases, from diagnostic biomarkers to genetic factors influencing disease outcomes. 

Dr. Rafal Tokarz and his team at Columbia University used peptide arrays and machine learning to identify immune reactive proteins in Borrelia burgdorferi to differentiate between phases of Lyme disease. These insights could enhance the accuracy of antibody-based diagnostic tests by improving their sensitivity and specificity (Tokarz et al., 2024). 

At Yale University, Dr. Choukri Ben Mamoun and his team developed the first antigen detection tests for Babesia duncani, a parasite often responsible for severe babesiosis. These assays, validated with over 1,700 samples, can detect active infections with high sensitivity and specificity, paving the way for early diagnosis, reservoir animal screening, and improved blood safety (Chand et al., 2024).  

Research by Dr. Klemen Strle and his group at Tufts University identified genetic variations associated with chronic Lyme arthritis. These variations are linked to increased inflammation and autoantibody responses, suggesting that some patients may have a genetic predisposition to persistent arthritis in Lyme disease. These findings may guide future biomarker development to predict disease risk (Ehrbar et al., 2024). 

These studies reflect GLA’s unwavering commitment to support research that addresses critical challenges in diagnosing and managing tick-borne diseases. 

Publications: 

Tokarz, R., Guo, C., Sanchez-Vicente, S., Horn, E., Eschman, A., Turk, S. P., Lipkin, W. I., & Marques, A. (2024). Identification of reactive Borrelia burgdorferi peptides associated with Lyme disease. mBio, 15(10). https://doi.org/10.1128/mbio.02360-24   

Chand, M., Vydyam, P., Pal, A. C., Thekkiniath, J., Darif, D., Li, Z., Choi, J. Y., Magni, R., Luchini, A., Tonnetti, L., Horn, E. J., Tufts, D. M., & Ben Mamoun, C. (2024). A set of diagnostic tests for detection of active Babesia duncani infection. International Journal of Infectious Diseases, 147, 107178. https://doi.org/10.1016/j.ijid.2024.107178  

Ehrbar, D., Arvikar, S. L., Sulka, K. B., Chiumento, G., Nelson, N. L. J., Hernandez, S. A., Williams, M. A., Strle, F., Steere, A. C., & Strle, K. (2024). Variants in the late cornified envelope gene locus are associated with elevated T-helper 17 responses in patients with postinfectious Lyme arthritis. The Journal of Infectious Diseases, 230(Supplement_1), S40–S50. https://doi.org/10.1093/infdis/jiae164  

https://www.globallymealliance.org/news/decoding-chronic-lyme-investigating-epigenetic-signatures?

Pictured: Tanja Petnicki-Ocwieja, PhD, courtesy of Tufts University School of Medicine
Tufts University, with support from GLA, is leading research to uncover epigenetic mechanisms behind chronic Lyme disease. Dr. Tanja Petnicki-Ocwieja’s work could improve treatments and reveal commonalities with other post-infectious syndromes like long COVID.

By Mase Peterson

In the fight against Lyme disease, cutting-edge research is essential for advancing treatment and prevention strategies. Tanja Petnicki-Ocwieja, PhD, a research assistant professor at Tufts University School of Medicine, is a key contributor to this effort through her work with the Tufts Lyme Disease Initiative. This collaborative group of faculty, staff, and students is dedicated to eliminating the public health threat of Lyme disease by 2030.

Tufts is home to one of the world’s most comprehensive groups of tick-borne disease researchers. Led by co-directors Linden Hu, Paul and Elaine Chervinsky Professor of Immunology, and Robert P. Smith, a physician at Maine Medical Center and professor of medicine, the team recently secured a $20.7 million federal grant, further solidifying Tufts’ position as a global leader in Lyme disease research.

In this Q&A, part of a feature series spotlighting members of the Initiative, Professor Petnicki-Ocwieja discusses her research on the immunological and epigenetic mechanisms underlying chronic Lyme disease and its potential to transform patient outcomes…

Read the rest from Tufts School of Medicine

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**Comment**

I’d love to be hopeful, but when the moniker PTLDS continues to be used it shows an inherent bias that ongoing infections aren’t to blame for people’s ongoing symptoms.  This must change.

For more:

Sign Up Today: HHS Virtual Session on TBDs & Diagnosis

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/33132197?

Sign Up Today! HHS Virtual Session on Tick-Borne Diseases and Diagnosis

Carl Tuttle
Hudson, NH, United States
Dec 27, 2024

I received an invitation from the Office of Infectious Disease and HIV/AIDS Policy (OIDP) to submit questions in relation to their “National Community Engagement Initiative” which came out of the Tick-Borne Disease Working Group established by Congress in 2016 as part of the 21st Century Cures Act.  This so-called working group turned out to be a total farce as those in charge refused to acknowledge chronic Lyme disease; the illusion of a working group.

My questions follow: (How about everyone reading this demand a response?)

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “James.Berger@hhs.gov” <James.Berger@hhs.gov>, “tickbornedisease@hhs.gov” <tickbornedisease@hhs.gov>
Cc: “tbdengagement@roseliassociates.com” <tbdengagement@roseliassociates.com>, “kaye.hayes@hhs.gov” <kaye.hayes@hhs.gov>, “ross_boyce@med.unc.edu” <ross_boyce@med.unc.edu>, “ASH@hhs.gov” <ASH@hhs.gov>, “OIDP-HAI@hhs.gov” <OIDP-HAI@hhs.gov>, “mwcurtis@bcm.edu” <mwcurtis@bcm.edu>, “job.lopez@bcm.edu” <job.lopez@bcm.edu>, “michael.a.boatwright2.mil@health.mil” <michael.a.boatwright2.mil@health.mil>, “tlalani@idcrp.org” <tlalani@idcrp.org>, “Schotthoefer.Anna@MarshfieldResearch.org” <Schotthoefer.Anna@MarshfieldResearch.org>, “Linz.Alexandra@MarshfieldResearch.org” <Linz.Alexandra@MarshfieldResearch.org>, “lashyra_nolen@hms.harvard.edu” <lashyra_nolen@hms.harvard.edu>, “bennett.nemser@steveandalex.org” <bennett.nemser@steveandalex.org>

Date: 12/26/2024 9:47 AM EST
Subject: Re: Sign Up Today! HHS Virtual Session on Tick-Borne Diseases and Diagnosis

Tick-Borne Disease and Associated Illnesses Virtual Community Engagement Session
https://www.hhs.gov/oidp/initiatives/tick-borne-diseases-associated-illnesses-national-community-engagement-initiative/index.html
Thursday, January 28th, 1:00 pm – 4:15 PM Eastern

“If you would like to submit a question for one of the speakers, please send it by Jan 17th at 11:59 PM to tickbornedisease@hhs.gov. Questions will be compiled prior to the meeting and presented to the speakers during the Q&A sessions.” 

ATTN: James Berger, MS, MT(ASCP), SBB
Office of Infectious Disease and HIV/AIDS Policy (OIDP)

In reference to Lyme disease; There are literally hundreds and hundreds of publications identifying persistent infection after antibiotic treatment dating all the way back to 1977.

Here is just one example from 1995: 

European Neurology 1995
Seronegative Chronic Relapsing Neuroborreliosis
https://www.karger.com/Article/Abstract/117104
Lawrence C., Lipton R.B., Lowy F.D., Coyle P.K.d

Abstract 
We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.

Questions:  
What is the motivation driving the deliberate suppression of this evidence identifying Borrelia burgdorferi as an antibiotic resistant/tolerant superbug? Does a chronic relapsing seronegative disease fit the vaccine model?

Carl Tuttle
Independent Researcher
Hudson, NH

“The Quiet Epidemic” Showing at the U.S. Capital Nov. 20, 2024

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

The Quiet Epidemic Film Presentation at the U.S. Capitol November 20th

Carl Tuttle
Hudson, NH, United States
Oct 29, 2024

The Quiet Epidemic Film Presentation at the U.S. Capitol

Please join us on Capitol Hill for a special presentation of the award-winning documentary The Quiet Epidemic

Hosted by Senator Richard Blumenthal, with a special appearance by Chris Meloni, Actor & Global Lyme Alliance Celebrity Ambassador

Since the earliest days of production, the team and supporters behind The Quiet Epidemic hoped the film might one day screen on Capitol Hill, and that moment has arrived.

Please join us for a free and open to the public presentation of The Quiet Epidemic on Wednesday, November 20th, from 5:30 PM to 9:00 PM, at the U.S. Capitol. The film will be preceded by a reception and followed by a discussion and Q&A with the film’s subjects, experts and actor Chris Meloni.

While the event is free to attend, RSVPs via Eventbrite are required for entry. You’ll find a PDF invitation attached to this email which includes the RSVP link—please circulate this widely, as our team is prohibited from promoting the event on social media. Details regarding the exact venue location within the Capitol will be sent to all registrants via Eventbrite approximately one week prior to November 20th.

The Quiet Epidemic team would like to thank our generous sponsors who have made our Capitol Hill events possible: LymeLight Foundation, Global Lyme Alliance, Sarena Snider, Project Lyme, NatCapLyme and lymeLNK. Among our sponsors are The Quiet Epidemic Executive Producers Phyllis & Scott Bedford—founders of LymeLight Foundation—and Sarena Sarena, each of whom generously supported the creation of the film itself, the film’s festival tour and release, and our team since the very beginning.

Please share the Eventbrite link and the attached PDF with anyone in your network who may wish to attend this event—especally those in the Washington D.C. area. We also encourage you to invite your representatives and include a brief statement about the impact Lyme has had on your life, and the prevalence in their state.

PDF invitation

https://www.dropbox.com/scl/fi/rp1qqnln1w6ztk6yimecq/11.20.24_The-Quiet-Epidemic-on-Capitol-Hill.pdf?rlkey=ecmsm63kwn8w27pymi1x8dlqk&dl=0

This is a culminating moment for The Quiet Epidemic film and impact campaign, nine years in the making. Thank you for being a part of this journey and for making it possible in so many ways! We hope to see you in D.C.

With gratitude,
The Quiet Epidemic Team

Watch The Quiet Epidemic trailer:
https://www.youtube.com/watch?v=I4C71N290co

23andMe Reportedly Faces Bankruptcy – What Will Happen to Everyone’s DNA Samples?

https://activistpost.com/2024/10/23andme-reportedly-faces-bankruptcy-what-will-happen-to-everyones-dna-samples.

23andMe Reportedly Faces Bankruptcy — What Will Happen to Everyone’s DNA Samples?

By Megan PrictorThe University of Melbourne

Since it was founded nearly two decades ago, 23andMe has grown into one of the largest biotechnology companies in the world. Millions of people have used its simple genetic testing service, which involves ordering a saliva test, spitting into a tube, and sending it back to the company for a detailed DNA analysis.

But now the company is on the brink of bankruptcy. This has raised concerns about what will happen to the troves of genetic data it has in its possession.

The company’s chief executive, Anne Wojcicki, has said she is committed to customer privacy and will “maintain our current privacy policy”.

But what can customers of 23andMe themselves do to make sure their highly personal genetic data is protected? And should we be concerned about other companies that also collect our DNA?

What happened to 23andMe?

23andMe has had a rapid downfall after the 2021 high of its public listing.

Its value has dropped more than 97%. In 2023 it suffered a major data breach affecting almost seven million users, and settled a class action lawsuit for US$30 million.

Last month its seven independent directors resigned amid news the original founder is planning to take the company private once more. The company has never made a profit and is reportedly on the verge of bankruptcy.

What this might mean for its vast stores of genetic data is unclear.  (See link for article)

______________

**Comment**

Many Lyme/MSIDS patients have had this genetic testing done, often to determine if they have a problem detoxing due to genetics.

The article advises:

The simplest thing is to delete your account, which opts you out of any future research and discards your saliva sample. But if your data has already been de-identified and used in research, it can’t be retrieved. And even if you delete your account, 23andMe says it will keep hold of information including your genetic data, date of birth and sex, to comply with its own legal obligations.

For more: