Archive for the ‘Lyme’ Category

Lyme Disease Research in Review: Triumphs, Trials, and the Path Forward

https://www.lymedisease.org/lyme-disease-research-review/

Lyme disease research in review: triumphs, trials, and the path forward

As always, the world of Lyme is complicated with both good news and bad. Looking back over the past year, I want to highlight a few of the biggest scientific advances that stand out in my mind.

Co-Infections

First I want to share something that science keeps validating—the majority of patients with persistent symptoms following a diagnosis of Lyme disease have co-infections.

This means they are infected with two or more pathogens (such as bacteria, viruses, or fungi) at the same time. These co-infections (including COVID-19) complicate the immune response and likely increase the chance of developing chronic Lyme.

As I wrote about previously, North America is “ground zero” for babesiosis, which is likely playing a much greater role in patients with chronic Lyme than we know. In the MyLymeData study, over 60% of patients report they were diagnosed with an additional tick-borne infection along with Lyme. For most of them, it’s Babesia.

In July 2024, researchers conducting a Lyme disease pilot study at North Carolina State University discovered that all seven participants were infected with Babesia, and six out of the seven were co-infected with at least one (sometimes two or more) species of Bartonella.

Babesia is a parasite, similar to malaria. It requires a separate test and special anti-parasitic medications outside of the standard tests and antibiotics used for Lyme disease alone.

Diagnostics

As I wrote about in December 2023, Borrelia (Lyme) has some unique features allowing it to hide from our immune system. That stealth technique, which keeps the number of bacteria low in the blood stream, also makes it difficult for standard blood tests to detect Lyme disease. In April of 2024, Dr. Michal Tal and her team published another clue as to how Borrelia hides from the immune system.

Right now, all eyes are on the six teams competing in the LymeX diagnostic challenge as they move forward with their innovations. These will hopefully result in a more accurate test becoming available to the public than the standard outdated test that has been around since 1994. (Note: Lyme X Phase 3 winners will be announced soon.)

While an accurate Lyme diagnostic is absolutely needed, I cannot ignore the fact that ticks in North America are known to transmit over 18 different pathogens.

In August of 2024, a team of biologists at City University of New York Graduate Center produced a genetic analysis of 47 different strains of Borrelia. This may pave the way for improved diagnosis, treatment, and prevention of Lyme disease.

I hope that with this new genetic mapping, we will finally be able to take advantage of the next-generation metagenomic testing which is capable of detecting multiple pathogens.

Treatment

One of the top priorities of patients with chronic Lyme disease is finding an effective treatment.

Two recent studies have shown that combination therapy for Lyme, and combination therapy for Babesia work better than monotherapy.

But not everyone responds favorably to pharmaceuticals. One reason for this, may be a condition called alpha-gal syndrome (AGS).

AGS is triggered by the bite of a tick and causes an allergy to anything derived from red meats including some medications. An estimated 450,000 people have AGS in the U.S., making it the tenth most common food allergen.

If enacted, the Alpha-Gal Inclusion Act would require the FDA to list alpha-gal as a major allergen and require labeling to include it as an ingredient.

Mast cell activation syndrome

Another complicating factor common in patients with chronic Lyme is mast cell activation syndrome (MCAS). MCAS can make patients extremely sensitive to certain types of chemicals, foods and additives.

In fact, MCAS is such an important topic, in 2024 we devoted an entire issue of the Lyme Times to Mast Cell Activation Syndrome which you can download and read for free.

Alas, there is nothing simple about treating complex medical conditions triggered by the bite of a tick. Many of the patients I know who’ve gotten better took years before they found the root cause of their misery followed by the right combination of treatment that worked.

In 2023 we devoted an entire issue of the Lyme Times trying to answer the question: What does it take to get better?

My hope is that we continue to see scientific progress in finding better diagnostics and treatment. And if you are struggling with a chronic illness, please do not give up hope.

LymeSci is written by Lonnie Marcum, a physical therapist and mother of a daughter with Lyme. She served two terms on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on X: @LonnieRhea   Email her at: lmarcum@lymedisease.org.

_______________

**Comment**

To my knowledge, treating this complex illness has hardly moved forward in over 40 years.  The medical industrial complex is myopically focused on ‘vaccines,’ which are big money makers for both Big Pharma and the government, which owns patents on many aspects of them.  As long as this remains the singular focus, patients will not be treated properly.  Further, as long as ‘consensus based‘ medicine reigns, innovative doctors who dare to use their God-given brains to help patients will continue to be persecuted, leaving patients to suffer.  As it is, the only true help for Lyme/MSIDS is to get to an independent, trained, and experienced Lyme literate doctor.

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Category:

Lyme, Mast Cell Activation Syndrome (MCAS), research, Testing, Ticks, Treatment

Optimizing Exclusion Criteria For Clinical Trials of Persistent Lyme Disease Using Real-World Data

https://www.mdpi.com/2227-9032/13/1/20

Optimizing Exclusion Criteria for Clinical Trials of Persistent Lyme Disease Using Real-World Data

by Lorraine Johnson1, Mira Shapiro2, Deanna Needell3 and Raphael B. Stricker4,*
1LymeDisease.org, Los Angeles, CA 91040, USA
2Analytic Designers LLC, Bethesda, MD 20817, USA
3Department of Mathematics, University of California, Los Angeles, CA 90025, USA
4Union Square Medical Associates, 595 Buckingham Way, Suite 350, San Francisco, CA 94132, USA
*Author to whom correspondence should be addressed.
Healthcare 2025, 13(1), 20; https://doi.org/10.3390/healthcare13010020
Submission received: 15 October 2024 / Revised: 19 December 2024 / Accepted: 21 December 2024 / Published: 25 December 2024
(This article belongs to the Topic Public Health and Healthcare in the Context of Big Data)

Abstract

Background/Objectives: Although eligibility criteria for clinical trials significantly impact study outcomes, these criteria are often established without scientific justification, leading to delayed recruitment, small sample sizes, and limited study generalizability. Persistent Lyme disease (PLD) presents unique challenges due to symptom variability, inconsistent treatment responses, and the lack of reliable biomarkers, underscoring the need for scientifically justified eligibility criteria.
Objective: This study examines the effects of commonly used enrollment criteria on sample yield in PLD clinical trials using real-world data (RWD) from the MyLymeData patient registry. The study also compares the effects of these criteria on enrollment for PLD versus acute Lyme disease (ALD) trials and evaluates the scientific rationale for each criterion.
Methods: Data from 4183 Lyme disease patients enrolled in the MyLymeData registry were analyzed to assess the prevalence and cumulative impact of various criteria on sample yield. A comparative analysis of cohorts with PLD (n = 3589) versus ALD (n = 594) was conducted to identify differences in sample attrition.
Results: In a large PLD cohort study, we found that current commonly used eligibility criteria would exclude approximately 90% of patients, significantly limiting study generalizability. Substantial differences in sample attrition between PLD and ALD cohorts highlight the need for tailored criteria. The strength of scientific justification varied widely among criteria.
Conclusions: This study demonstrates the importance of using RWD to optimize eligibility criteria in PLD clinical trials. By providing insights into the balance between sample attrition and scientific justification, researchers can enhance trial feasibility, generalizability, and robustness. Our RWD sample demonstrates that researchers could substantially increase the sample yield from 10% to 64% by loosening restrictions on coinfections and misdiagnoses of chronic fatigue syndrome, fibromyalgia syndrome, and psychiatric conditions.

Category:

Lyme, research

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

Take the next step!

Category:

Activism, Lyme, Uncategorized

Letter Breaking Down Timeline & Deception of Lyme Disease: No Studies Have Ruled out Sexual Transmission

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

Question for Aaron Siri, Managing Partner Siri & Glimstad

Carl Tuttle
Hudson, NH, United States
Dec 18, 2024

If antibiotic resistance was acknowledged early on by our Public Health Officials as it was by Dr. Allen Steere in 1977 the focus would have been on developing new antimicrobials (or different combinations) as seen in the treatment of Brucellosis but the potential money grab from a Lyme vaccine was far too lucrative to pass up. Everything about Lyme from that point forward had to support vaccine development. A chronic relapsing SERONEGATIVE disease did not fit the vaccine model. The money orgy produced by vaccines could not be more obvious through recent Covid events. The rest of the world now has a bird’s eye view of what our Public Health Officials are capable of when a false narrative has been dictated. The disabled Lyme community has been shouting from the rooftops for decades and everyone reading this knows of someone severely affected from Lyme disease; shame on you for not speaking up!

The following letter to Aaron Siri, Managing Partner of Siri & Glimstad breaks down the timeline and deception. Attorney Siri recently exposed the truth/facts about childhood vaccines through the depositions of Stanley Plotkin world’s leading authority on vaccines and Dr. Kathryn Edwards world’s leading vaccinologist.

Letter to Attorney Siri:

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “aaron@sirillp.com” <aaron@sirillp.com>
Cc: “mbarney@sirillp.com” <mbarney@sirillp.com>, “ebrehm@sirillp.com” <ebrehm@sirillp.com>, “ddisabato@sirillp.com” <ddisabato@sirillp.com>, “lconsidine@sirillp.com” <lconsidine@sirillp.com>, “wmoller@sirillp.com” <wmoller@sirillp.com>, “mconnett@sirillp.com” <mconnett@sirillp.com>, “ahaskins@sirillp.com” <ahaskins@sirillp.com>, “cxenides@sirillp.com” <cxenides@sirillp.com>
Date: 12/13/2024 12:29 PM EST
Subject: Question for Aaron Siri, Managing Partner Siri & Glimstad

Siri & Glimstad
Aaron Siri, Managing Partner

Dear Attorney Siri,

When and who ruled out sexually transmitted Lyme disease?

Hold that thought for one moment please….

Weren’t we told by IDSA/Eugene Shapiro that there has never been one case of congenital Lyme? WRONG! WRONG!

Weren’t we told by the New York Times that Lyme is “hard to catch and easy to halt”? WRONG!

Weren’t we told by Wormser that persistent symptoms are nothing more than the aches and pains of daily living? WRONG!

Weren’t we told by Mainstream media that LYMErix was taken off the market due to poor sales? WRONG!

Weren’t we told by the CDC/IDSA that the bulls-eye rash appears 80% of the time?  WRONG!

Weren’t we told by the CDC/IDSA Paul Auwaerter that the two-tier Lyme test is a good test?  WRONG! WRONG!

Weren’t we told by Wormser that single dose Doxycycline as a prophylaxis after tick bite is sufficient in stopping the disease? WRONG!

Weren’t we told by the CDC/IDSA that there’s no Lyme disease in the south?  WRONG!

Weren’t we told by the CDC/IDSA that it takes 48hrs of tick attachment before the disease can be transmitted. WRONG! WRONG!

Weren’t we told by the (CDC/IDSA/ALDF) that there is no toxin involved in Lyme disease? WRONG! Again.

So what else have they gotten wrong??

Getting back to my original question: “sexually transmitted Lyme disease” ...

The 2014 study below found culture positive evidence of Borrelia spirochetes in the genital secretions of these patients:

Culture and identification of Borrelia spirochetes in human vaginal and seminal secretions
https://pmc.ncbi.nlm.nih.gov/articles/PMC5482345/

Conclusions:  The culture of viable Borrelia spirochetes in genital secretions suggests that Lyme disease could be transmitted by intimate contact from person to person. Further studies are needed to evaluate this hypothesis.

Here is the CDC’s stance on sexually transmitted Lyme disease:

About other modes of transmission
https://www.cdc.gov/lyme/causes/index.html

There is no credible scientific evidence that Lyme disease is spread through touching, kissing, or sexual contact. Published studies in animals do not support sexual transmission (Moody 1991; Woodrum 1999), and the biology of the Lyme disease spirochete is not compatible this route of exposure (Porcella 2001).

Carl Tuttle’s comment: ONE SINGLE PUBLICATION 23 YEARS AGO! This is not an actual study proving or ruling out sexual transmission; this is one man’s perspective using the words “suggest/suggests/suggesting.”

Don’t look!  That assures you won’t find!

Isn’t that exactly what you just exposed Attorney Siri in the depositions of Stanley Plotkin and Dr. Kathryn Edwards regarding the vaccine and autism debate? There have been no autism studies for the childhood vaccine schedule to challenge the mantra “Vaccines Do Not Cause Autism because we say so.”

There have been no studies to rule out sexually transmitted Lyme disease so how much sexually transmitted Lyme has been circulating in the public for the past three decades or more?

In 2003 Texas physicians Harvey and Salvato tested their chronically ill patients for Lyme disease via CDC Western blot criteria finding all patients positive for the infection in a state where the prevalence of Lyme infected ticks is only about 1-2%. “No history of bull’s-eye rash or illness following tick bite was reported by these patients.” The CDC defines “Lyme disease” exclusively as a zoonotic illness. Congenital and gestational transfer cases have been disregarded for reasons not evident to us.”

Here is an example of how other infections have been managed:

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.

Why haven’t we done this with Borrelia burgdorferi infection…..

1. 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.

2. Different Clinical Presentations of Brucellosis.
https://www.ncbi.nlm.nih.gov/pubmed/27284398

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.

In contrast, oral amoxicillin or doxycycline remains the treatment of choice for treating Lyme disease for over thirty years regardless if debilitating symptoms return. Dr. Allen Steere knew that these antibiotics were not effective for all patients (see 1977 reference) but there has been no change in treatment or research to find more effective ways to eradicate the infection in all stages of disease.

Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three connecticut communities. (1977)  https://pubmed.ncbi.nlm.nih.gov/836338/

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.”

In contrast, the only action item we have in the pipeline after FORTY years for Lyme disease is a vaccine fast-tracked by the FDA in 2017. Since all the eggs have been put into the vaccine basket it would appear that our Health Agencies are in the shot business with annual revenue of $4.3 billion from the sales and patent royalties.

A chronic relapsing seronegative disease DOES NOT fit the vaccine model because you cannot prove vaccine efficacy in a disease where we don’t know who has or does not have the infection! So, deny the chronically infected by suppressing all evidence of antibiotic resistance, claim that the infection is easily treated because newer curative treatment for all stages of disease would give the public an excuse not to take the vaccine, reject all direct-detection methods that prove chronic infection and voila! move forward with patent royalties, vaccine development and pharmaceutical profits. The federal watchdog is no more. People suffering and dying and for what? Lyme for Profit.

The CDC has propagated this false Lyme disease narrative for decades and to this day refuses to recognize the disabling stage of the disease exposed in the documentaries Under our Skin and The Quiet Epidemic.

Suppressing evidence of antibiotic resistance for the sake of a vaccine is a crime Attorney Siri!

This is a criminal case that must be exposed as you have done with the childhood vaccine mantra; “Vaccines do not cause autism because we say so.”

Chronic Lyme does not exist because we say so! DO NOT QUESTION OUR PUBLIC HEALTH NARRATIVE, PERIOD!!! Or else…

We need your help Attorney Siri! We need your help!

Respectfully submitted,

Carl Tuttle
Independent Researcher
Lyme Endemic Hudson, NH

PS. Publication from our public health officials of Vector Borne Division of the CDC:

Post-treatment Lyme borreliosis in context: Advancing the science and patient care
Grace E. Marx*, Alison F. Hinckley, Paul S. Mead
Published 27 June 2021
https://www.thelancet.com/pdfs/journals/lanepe/PIIS2666-7762(21)00130-7.pdf

Tuttle’s comment:

This is the same old garbage (junk science) regurgitated by the CDC/IDSA year after year, decade after decade while avoiding the elephant in the room.

Conclusion: “Fortunately, safe and effective vaccines for Lyme disease may be on the horizon which could both reduce LB incidence on a population scale while averting long-term patient suffering”  Voila and there you have it folks!!!!

_________________

**Comment**

Our case is a perfect example of sexual transmission.  For our story:   https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/

Lida Mattman was able to culture spirochetes from tears, sweat, urine, CSF, blood, plasma, fleas, mites, mosquitoes, etc. and UW researcher Elizabeth Burgess could infect cats orally, ocularly, via IV, and via contact transmission in dogs:  https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/  She almost lost her job over these findings because they didn’t want them found.

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Category:

Activism, Lyme, research, Testing, Transmission, Treatment

The Haunting Legacy of Lyme

https://krisnewby.substack.com/p/the-haunting-legacy-of-lyme

The Haunting Legacy of Lyme

The ‘Polly Murray Papers’ reveal the horrific symptoms of ground-zero Lyme disease sufferers.

Kris Newby
Jul 12, 2024

Sadness washed over me as I walked through the house in Lyme, Connecticut, where Mary Luckett “Polly” Murray used to live. Built in 1853, it was located in a rural area surrounded by forests, rolling hills, and cranberry bogs. The house needed a fresh coat of paint, and the yard had gone to seed. The new owner had recently divorced and hadn’t replaced the furniture his ex-wife had taken. There were mattresses on the floor and unfinished projects spilling out of the garage. The owner and his dog seemed unwell. Taking in the scene, I thought, this looks like the flotsam and jetsam of another family destroyed by Lyme disease.

The previous owner, Polly Murray, was an artist, a mother of four sick children, and the disease’s first unofficial epidemiologist. She died in 2019 of Alzheimer’s disease. In the 1960s, she began documenting the bizarre constellation of symptoms that afflicted her family and neighbors living along the Connecticut River. In April, I visited the Medical Historical Library at Yale University to review her original Lyme patient case histories, turning back the pages of time in search of the origins of this mysterious outbreak.

These first-hand accounts raised a lot of questions for me. Why did it take 11 years, from 1964 to 1975, for the medical system to take notice and take action? In 1975, the investigation was assigned to Allen Steere, MD, a young Yale rheumatology fellow who had just returned from a CDC Epidemic Intelligence Service (EIS) assignment in Liberia. Why did Steere narrow the symptomology so soon in the investigation and downplay most of the neurological symptoms? Why did it take six more years to identify the underlying tick-borne bacterium, Borrelia burgdorferi? Did CDC-EIS, the U.S. organization that investigates suspicious disease outbreaks, find it strange that three tick-borne diseases suddenly appeared a few miles from the Plum Island biological weapons lab?

As I looked through the boxes of her notes, I was struck by the unusual nature of the symptoms and the point-source geographic origin. What happened there, and what can we learn from Polly’s eyewitness account?  (See link for article)

________________

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Category:

Activism, Lyme, research