lymepolicywonk.bsky.social
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The 2025 MyLymeData Research Chartbook is a powerful testament to what happens when patients lead the way.
More than 19,000 Lyme patients stepped up to share their experiences, kickstarting a decade of groundbreaking research, and progress.
DOWNLOAD YOUR COPY: www.lymedisease.org/mylymedata-2...
More than 19,000 Lyme patients stepped up to share their experiences, kickstarting a decade of groundbreaking research, and progress.
DOWNLOAD YOUR COPY: www.lymedisease.org/mylymedata-2...
2025 Research Chart Book Released | LymeDisease.org
This year marks a major milestone for the MyLymeData patient registry—our 10th anniversary. To celebrate, we’re publishing the MyLymeData 2025 Research Chartbook—a visual summary of a decade of ground...
www.lymedisease.org
November 1, 2025 at 9:00 PM
The 2025 MyLymeData Research Chartbook is a powerful testament to what happens when patients lead the way.
More than 19,000 Lyme patients stepped up to share their experiences, kickstarting a decade of groundbreaking research, and progress.
DOWNLOAD YOUR COPY: www.lymedisease.org/mylymedata-2...
More than 19,000 Lyme patients stepped up to share their experiences, kickstarting a decade of groundbreaking research, and progress.
DOWNLOAD YOUR COPY: www.lymedisease.org/mylymedata-2...
Reposted by lymepolicywonk.bsky.social
This year marks a major milestone for the MyLymeData patient registry—our 10th anniversary.
To celebrate, we’re publishing the MyLymeData 2025 Research Chartbook—a visual summary of a decade of groundbreaking research, collaboration, and progress.
READ MORE: www.lymedisease.org/mylymedata-2...
To celebrate, we’re publishing the MyLymeData 2025 Research Chartbook—a visual summary of a decade of groundbreaking research, collaboration, and progress.
READ MORE: www.lymedisease.org/mylymedata-2...
October 29, 2025 at 9:36 PM
This year marks a major milestone for the MyLymeData patient registry—our 10th anniversary.
To celebrate, we’re publishing the MyLymeData 2025 Research Chartbook—a visual summary of a decade of groundbreaking research, collaboration, and progress.
READ MORE: www.lymedisease.org/mylymedata-2...
To celebrate, we’re publishing the MyLymeData 2025 Research Chartbook—a visual summary of a decade of groundbreaking research, collaboration, and progress.
READ MORE: www.lymedisease.org/mylymedata-2...
Reposted by lymepolicywonk.bsky.social
Living with Lyme disease can make it impossible to work full-time.
But getting approved for long-term disability (LTD) benefits can be an uphill battle.
This attorney breaks down what you need to know about filing an LTD claim.
READ MORE www.lymedisease.org/navigating-d...
But getting approved for long-term disability (LTD) benefits can be an uphill battle.
This attorney breaks down what you need to know about filing an LTD claim.
READ MORE www.lymedisease.org/navigating-d...
Navigating disability insurance for Lyme disease | LymeDisease.org
By Edward Dabdoub Lyme disease can cause serious and lasting impairments that make it impossible to work full-time. Yet, because symptoms of Lyme disease
www.lymedisease.org
October 25, 2025 at 6:53 PM
Living with Lyme disease can make it impossible to work full-time.
But getting approved for long-term disability (LTD) benefits can be an uphill battle.
This attorney breaks down what you need to know about filing an LTD claim.
READ MORE www.lymedisease.org/navigating-d...
But getting approved for long-term disability (LTD) benefits can be an uphill battle.
This attorney breaks down what you need to know about filing an LTD claim.
READ MORE www.lymedisease.org/navigating-d...
Reposted by lymepolicywonk.bsky.social
Singer-songwriter Jesse Ruben has released “Monster,” a raw and powerful new single born from his years battling Lyme disease.
Learn the story behind the music and listen to the song.
READ MORE www.lymedisease.org/jesse-rubens...
Learn the story behind the music and listen to the song.
READ MORE www.lymedisease.org/jesse-rubens...
Jesse Ruben’s “Monster” tells the story Lyme patients know all too well | LymeDisease.org
Ten years ago, singer-songwriter Jesse Ruben was desperately ill with Lyme disease—wracked with pain, clouded by brain fog, and battling depression. In
www.lymedisease.org
September 27, 2025 at 9:57 PM
Singer-songwriter Jesse Ruben has released “Monster,” a raw and powerful new single born from his years battling Lyme disease.
Learn the story behind the music and listen to the song.
READ MORE www.lymedisease.org/jesse-rubens...
Learn the story behind the music and listen to the song.
READ MORE www.lymedisease.org/jesse-rubens...
Reposted by lymepolicywonk.bsky.social
A recent @60minutes.bsky.social Minutes report highlights a controversial effort to curb Lyme disease by genetically modifying wild mice.
The project is still in the research phase and raises ethical and ecological questions.
WATCH THE FULL SEGMENT HERE www.lymedisease.org/engineered-m...
The project is still in the research phase and raises ethical and ecological questions.
WATCH THE FULL SEGMENT HERE www.lymedisease.org/engineered-m...
Can genetically engineered mice stop Lyme? And at what cost? | LymeDisease.org
A recent 60 Minutes report highlights a controversial effort to curb Lyme disease by genetically modifying wild mice. Researchers, led by MIT’s Kevin
www.lymedisease.org
September 27, 2025 at 9:59 PM
A recent @60minutes.bsky.social Minutes report highlights a controversial effort to curb Lyme disease by genetically modifying wild mice.
The project is still in the research phase and raises ethical and ecological questions.
WATCH THE FULL SEGMENT HERE www.lymedisease.org/engineered-m...
The project is still in the research phase and raises ethical and ecological questions.
WATCH THE FULL SEGMENT HERE www.lymedisease.org/engineered-m...
Reposted by lymepolicywonk.bsky.social
Two authors of the report, retired Air Force Colonel and Lyme advocate Nicole Malachowski and infectious disease physician and researcher Dr. Kent Kester, shed light not only on the significance of the report but also on the road ahead.
READ MORE www.lymedisease.org/nasem-malach...
READ MORE www.lymedisease.org/nasem-malach...
PODCAST: National Academies report opens a new chapter in Lyme research | LymeDisease.org
By Fred Diamond Lyme awareness got a major boost recently with the publication of the new National Academies of Sciences, Engineering, and Medicine
www.lymedisease.org
September 27, 2025 at 10:03 PM
Two authors of the report, retired Air Force Colonel and Lyme advocate Nicole Malachowski and infectious disease physician and researcher Dr. Kent Kester, shed light not only on the significance of the report but also on the road ahead.
READ MORE www.lymedisease.org/nasem-malach...
READ MORE www.lymedisease.org/nasem-malach...
Reposted by lymepolicywonk.bsky.social
At New York Fashion Week, Project Lab Coat turned the spotlight on Lyme disease—and the people fighting it—with fierce fashion and unforgettable purpose.
Journalist Mary Beth Pfeiffer describes what it was like--and how it came to be.
READ MORE www.lymedisease.org/walked-fashi...
Journalist Mary Beth Pfeiffer describes what it was like--and how it came to be.
READ MORE www.lymedisease.org/walked-fashi...
I walked the fashion runway for Lyme—alongside scientists, stars, and survivors | LymeDisease.org
Reprinted by permission of the Rescue substack. By Mary Beth Pfeiffer Magic happened for a far-flung group of scientists, doctors, pop stars, advocates,
www.lymedisease.org
September 27, 2025 at 10:04 PM
At New York Fashion Week, Project Lab Coat turned the spotlight on Lyme disease—and the people fighting it—with fierce fashion and unforgettable purpose.
Journalist Mary Beth Pfeiffer describes what it was like--and how it came to be.
READ MORE www.lymedisease.org/walked-fashi...
Journalist Mary Beth Pfeiffer describes what it was like--and how it came to be.
READ MORE www.lymedisease.org/walked-fashi...
Reposted by lymepolicywonk.bsky.social
Tick-borne alpha-gal syndrome, otherwise known as the red meat allergy, is on the rise across the United States.
Two new continuing medical education courses—one from the CDC and one from VectorWise CME—aim to boost clinician awareness and training.
READ MORE www.lymedisease.org/alpha-gal-tr...
Two new continuing medical education courses—one from the CDC and one from VectorWise CME—aim to boost clinician awareness and training.
READ MORE www.lymedisease.org/alpha-gal-tr...
Two new CME courses aim to close alpha-gal syndrome knowledge gap | LymeDisease.org
As alpha-gal syndrome (AGS) continues to rise across the United States, two new continuing medical education (CME) courses—one from the CDC and one from
www.lymedisease.org
September 27, 2025 at 10:06 PM
Tick-borne alpha-gal syndrome, otherwise known as the red meat allergy, is on the rise across the United States.
Two new continuing medical education courses—one from the CDC and one from VectorWise CME—aim to boost clinician awareness and training.
READ MORE www.lymedisease.org/alpha-gal-tr...
Two new continuing medical education courses—one from the CDC and one from VectorWise CME—aim to boost clinician awareness and training.
READ MORE www.lymedisease.org/alpha-gal-tr...
Reposted by lymepolicywonk.bsky.social
Two years ago, a task force of 17 scientists, physicians, and public health experts submitted a comprehensive plan to New York State.
It outlined urgent steps to address the surge in Lyme & other tick-borne diseases.
But the report was never released.
READ MORE www.lymedisease.org/pfeiffer-nys...
It outlined urgent steps to address the surge in Lyme & other tick-borne diseases.
But the report was never released.
READ MORE www.lymedisease.org/pfeiffer-nys...
New York has a plan to combat Lyme disease. Why is it still buried? | LymeDisease.org
If you care about improving the lives of Lyme patients and protecting public health, you’ll want to read Mary Beth Pfeiffer’s latest exposé.
www.lymedisease.org
September 20, 2025 at 9:28 PM
Two years ago, a task force of 17 scientists, physicians, and public health experts submitted a comprehensive plan to New York State.
It outlined urgent steps to address the surge in Lyme & other tick-borne diseases.
But the report was never released.
READ MORE www.lymedisease.org/pfeiffer-nys...
It outlined urgent steps to address the surge in Lyme & other tick-borne diseases.
But the report was never released.
READ MORE www.lymedisease.org/pfeiffer-nys...
Reposted by lymepolicywonk.bsky.social
Got Lyme? Enroll in MyLymeData to share your experiences with researchers seeking a cure.
Enroll Today: mylymedata.org
Enroll Today: mylymedata.org
September 10, 2025 at 8:37 PM
Got Lyme? Enroll in MyLymeData to share your experiences with researchers seeking a cure.
Enroll Today: mylymedata.org
Enroll Today: mylymedata.org
Reposted by lymepolicywonk.bsky.social
If you’re tired of being unheard, this is your chance to speak louder. Join us. Fuel advocacy. Demand change. Be part of the movement that's rewriting the story of Lyme disease. www.lymedisease.org/members/join...
August 30, 2025 at 4:29 PM
If you’re tired of being unheard, this is your chance to speak louder. Join us. Fuel advocacy. Demand change. Be part of the movement that's rewriting the story of Lyme disease. www.lymedisease.org/members/join...
Reposted by lymepolicywonk.bsky.social
LymeDisease.org’s MyLymeData project is central to a groundbreaking study on how Lyme affects the brain and nervous system.
Professor Jana Gevertz of the The College of New Jersey is collaborating with experts at UCLA.
READ MORE https://www.lymedisease.org/mylymedata-neurological-lyme/
Professor Jana Gevertz of the The College of New Jersey is collaborating with experts at UCLA.
READ MORE https://www.lymedisease.org/mylymedata-neurological-lyme/
https://LymeDisease.org’s
August 18, 2025 at 12:35 AM
LymeDisease.org’s MyLymeData project is central to a groundbreaking study on how Lyme affects the brain and nervous system.
Professor Jana Gevertz of the The College of New Jersey is collaborating with experts at UCLA.
READ MORE https://www.lymedisease.org/mylymedata-neurological-lyme/
Professor Jana Gevertz of the The College of New Jersey is collaborating with experts at UCLA.
READ MORE https://www.lymedisease.org/mylymedata-neurological-lyme/
Reposted by lymepolicywonk.bsky.social
“Mitochondria are the energy factories of the cell,” Dr. Chris Winfrey explains.
“If we support them with the right nutrients, we can begin to reverse fatigue and brain fog.”
READ MORE www.lymedisease.org/faith-streng...
“If we support them with the right nutrients, we can begin to reverse fatigue and brain fog.”
READ MORE www.lymedisease.org/faith-streng...
PODCAST: Healing from Lyme takes faith, strength, and mitochondria | LymeDisease.org
By Fred Diamond One of the most misunderstood and under-discussed aspects of chronic Lyme disease is its impact on the brain and on relationships. During
www.lymedisease.org
August 18, 2025 at 7:38 PM
“Mitochondria are the energy factories of the cell,” Dr. Chris Winfrey explains.
“If we support them with the right nutrients, we can begin to reverse fatigue and brain fog.”
READ MORE www.lymedisease.org/faith-streng...
“If we support them with the right nutrients, we can begin to reverse fatigue and brain fog.”
READ MORE www.lymedisease.org/faith-streng...
Reposted by lymepolicywonk.bsky.social
When doctors said "It's all in your head," we said, "It's all in the research."
For over 35 years, we've been standing with Lyme patients when no one else would.
Stand with us now by becoming a member today: www.lymedisease.org/members/join...
For over 35 years, we've been standing with Lyme patients when no one else would.
Stand with us now by becoming a member today: www.lymedisease.org/members/join...
August 2, 2025 at 10:01 PM
When doctors said "It's all in your head," we said, "It's all in the research."
For over 35 years, we've been standing with Lyme patients when no one else would.
Stand with us now by becoming a member today: www.lymedisease.org/members/join...
For over 35 years, we've been standing with Lyme patients when no one else would.
Stand with us now by becoming a member today: www.lymedisease.org/members/join...
Reposted by lymepolicywonk.bsky.social
New UCLA study uses MyLymeData and machine learning to decode neurological Lyme disease. www.lymedisease.org/ucla-mylymed...
UCLA study uses MyLymeData and machine learning to decode neuro-Lyme | LymeDisease.org
From UCLA, Division of Physical Sciences Despite its presence in over 80 countries, Lyme disease remains one of the least understood illnesses. In the
www.lymedisease.org
July 5, 2025 at 4:33 PM
New UCLA study uses MyLymeData and machine learning to decode neurological Lyme disease. www.lymedisease.org/ucla-mylymed...
Reposted by lymepolicywonk.bsky.social
"Healing from Lyme is not linear. It’s not quick. It’s not always visible from the outside. But it is possible." ~Rabbi Melinda Bernstein
READ: Summer solstice calls us to return to the body’s healing wisdom www.lymedisease.org/bernstein-so...
READ: Summer solstice calls us to return to the body’s healing wisdom www.lymedisease.org/bernstein-so...
Summer solstice calls us to return to the body’s healing wisdom | LymeDisease.org
By Rabbi Melinda Bernstein As we enter the season of the summer solstice, a time of fullness, illumination, and embodied presence, we're invited to
www.lymedisease.org
June 25, 2025 at 4:10 AM
"Healing from Lyme is not linear. It’s not quick. It’s not always visible from the outside. But it is possible." ~Rabbi Melinda Bernstein
READ: Summer solstice calls us to return to the body’s healing wisdom www.lymedisease.org/bernstein-so...
READ: Summer solstice calls us to return to the body’s healing wisdom www.lymedisease.org/bernstein-so...
Reposted by lymepolicywonk.bsky.social
MyLymeData Powers Groundbreaking Study of Neurological Lyme Symptoms. Federal Grant Supports AI-Driven Research to Define, Diagnose, and Treat Neurological Lyme Disease. www.lymedisease.org/members/lyme...
MyLymeData Powers Groundbreaking Study of Neurological Lyme Symptoms - LymeDisease.org Member Community
Federal Grant Supports AI-Driven Research to Define, Diagnose, and Treat Neurological Lyme Disease
www.lymedisease.org
June 21, 2025 at 10:17 PM
MyLymeData Powers Groundbreaking Study of Neurological Lyme Symptoms. Federal Grant Supports AI-Driven Research to Define, Diagnose, and Treat Neurological Lyme Disease. www.lymedisease.org/members/lyme...
Reposted by lymepolicywonk.bsky.social
James Stewart Evans is a seasoned actor with experience in film, television, commercials, and songwriting.
And he's also the father of a daughter battling chronic Lyme disease.
This led him to write a song about Lyme disease.
LISTEN HERE www.lymedisease.org/fathers-lyme...
And he's also the father of a daughter battling chronic Lyme disease.
This led him to write a song about Lyme disease.
LISTEN HERE www.lymedisease.org/fathers-lyme...
A father's song, a daughter's Lyme disease journey | LymeDisease.org
James Stewart Evans is a seasoned actor with experience in film, television, commercials, and songwriting. But beyond his work in entertainment, he plays
www.lymedisease.org
June 17, 2025 at 1:58 PM
James Stewart Evans is a seasoned actor with experience in film, television, commercials, and songwriting.
And he's also the father of a daughter battling chronic Lyme disease.
This led him to write a song about Lyme disease.
LISTEN HERE www.lymedisease.org/fathers-lyme...
And he's also the father of a daughter battling chronic Lyme disease.
This led him to write a song about Lyme disease.
LISTEN HERE www.lymedisease.org/fathers-lyme...
Reposted by lymepolicywonk.bsky.social
Psychiatrist Robert Bransfield explores how infections can inflame the brain, impair cognition, and even trigger violent behavior.
READ: Could Lyme and other infections be driving psychiatric disorders?" www.lymedisease.org/bransfield-p...
READ: Could Lyme and other infections be driving psychiatric disorders?" www.lymedisease.org/bransfield-p...
Could Lyme and other infections be driving psychiatric disorders?" | LymeDisease.org
By Mary Jane Heppe What if some of the world’s mental health crises aren’t just psychological in origin, but microbial? In a compelling article published
www.lymedisease.org
June 15, 2025 at 3:57 PM
Psychiatrist Robert Bransfield explores how infections can inflame the brain, impair cognition, and even trigger violent behavior.
READ: Could Lyme and other infections be driving psychiatric disorders?" www.lymedisease.org/bransfield-p...
READ: Could Lyme and other infections be driving psychiatric disorders?" www.lymedisease.org/bransfield-p...
Reposted by lymepolicywonk.bsky.social
A new do-it-yourself movement in pest management is gaining momentum.
It’s a way to help homeowners and neighborhoods reduce ticks and mosquitoes naturally and affordably--while protecting people, pets, and pollinators.
READ MORE www.lymedisease.org/reclaim-your...
It’s a way to help homeowners and neighborhoods reduce ticks and mosquitoes naturally and affordably--while protecting people, pets, and pollinators.
READ MORE www.lymedisease.org/reclaim-your...
Reclaim your backyard by learning how to control ticks naturally | LymeDisease.org
By Tick BYTES A new do-it-yourself movement in pest management is gaining momentum with the official launch of Tick BYTES (Back Yard Tick Eco-friendly
www.lymedisease.org
June 14, 2025 at 9:43 PM
A new do-it-yourself movement in pest management is gaining momentum.
It’s a way to help homeowners and neighborhoods reduce ticks and mosquitoes naturally and affordably--while protecting people, pets, and pollinators.
READ MORE www.lymedisease.org/reclaim-your...
It’s a way to help homeowners and neighborhoods reduce ticks and mosquitoes naturally and affordably--while protecting people, pets, and pollinators.
READ MORE www.lymedisease.org/reclaim-your...
Reposted by lymepolicywonk.bsky.social
PODCAST: How Ravel Health is changing the Lyme treatment landscape. www.lymedisease.org/ravel-health...
June 12, 2025 at 2:08 PM
PODCAST: How Ravel Health is changing the Lyme treatment landscape. www.lymedisease.org/ravel-health...
Reposted by lymepolicywonk.bsky.social
Our latest issue celebrates MyLymeData’s 10th anniversary, highlighting its impact in reshaping Lyme disease research. It also features news updates and powerful first-person accounts of resilience and recovery from Lyme and other tick-borne diseases. www.lymedisease.org/members/lyme...
2025 Summer LymeTimes - LymeDisease.org Member Community
LymeTimes Summer 2025 - 10 Years of MyLymeData: A Patient-Driven Revolution in Lyme Disease Research
www.lymedisease.org
June 12, 2025 at 2:16 PM
Our latest issue celebrates MyLymeData’s 10th anniversary, highlighting its impact in reshaping Lyme disease research. It also features news updates and powerful first-person accounts of resilience and recovery from Lyme and other tick-borne diseases. www.lymedisease.org/members/lyme...
Reposted by lymepolicywonk.bsky.social
MyLymeData patient-powered research platform includes patients with Lyme disease enrolled from every state. This map reflects patients enrolled in the registry over the past 10 years.
Happy 10 year anniversary to all of you! We are stronger together.
LEARN MORE: www.lymedisease.org/ten-years-st...
Happy 10 year anniversary to all of you! We are stronger together.
LEARN MORE: www.lymedisease.org/ten-years-st...
June 3, 2025 at 1:03 AM
MyLymeData patient-powered research platform includes patients with Lyme disease enrolled from every state. This map reflects patients enrolled in the registry over the past 10 years.
Happy 10 year anniversary to all of you! We are stronger together.
LEARN MORE: www.lymedisease.org/ten-years-st...
Happy 10 year anniversary to all of you! We are stronger together.
LEARN MORE: www.lymedisease.org/ten-years-st...
Reposted by lymepolicywonk.bsky.social
Very little research has been conducted regarding how best to treat patients who do not respond to short-term treatment approaches or who are not diagnosed early. That is why we started MyLymeData. Help us accelerate this research.
Join MyLymeData today: mylymedata.org
Join MyLymeData today: mylymedata.org
May 30, 2025 at 1:17 AM
Very little research has been conducted regarding how best to treat patients who do not respond to short-term treatment approaches or who are not diagnosed early. That is why we started MyLymeData. Help us accelerate this research.
Join MyLymeData today: mylymedata.org
Join MyLymeData today: mylymedata.org
Reposted by lymepolicywonk.bsky.social
#Ticks are built to survive in nearly every environment & climate condition. Whether it is freezing cold, drenching rain, or sweltering heat, ticks keep on ticking. Except in areas where temperatures are extreme ticks are active 365 days/year.
LEARN MORE: www.lymedisease.org/ticks-worldw...
LEARN MORE: www.lymedisease.org/ticks-worldw...
LYME SCI: Ticks are worldwide. We all need to learn more about them.
There are more than 900 species of ticks on earth, though only a handful are known to carry disease to humans.
www.lymedisease.org
May 30, 2025 at 1:22 AM
#Ticks are built to survive in nearly every environment & climate condition. Whether it is freezing cold, drenching rain, or sweltering heat, ticks keep on ticking. Except in areas where temperatures are extreme ticks are active 365 days/year.
LEARN MORE: www.lymedisease.org/ticks-worldw...
LEARN MORE: www.lymedisease.org/ticks-worldw...