Emerging tick species in CT found to carry rare bacteria that can be deadly, officials say

June 4, 2025 Looking for the LightLeave a comment

HARTFORD, Conn. — An invasive tick species in Connecticut has been found to carry the bacteria that can cause ehrlichiosis in humans, a discovery that has alarmed state biologists as the tick continues to increase its spread throughout the state.

Longhorned ticks, an emerging invasive species in the state, have now been found to carry the bacteria that causes ehrlichiosis. The bacteria, while rare in Connecticut, has been found in the state for a while, according to Dr. Goudarz Molaei, a state entomologist with the Connecticut Agriculture Experiment Station.

Between 2001 and 2019, the number of cases of the bacteria increased from 142 to 2,093, a roughly 15-fold rise. Only two erlichiosis cases were recorded in Connecticut between 2008 and 2018, however, 28 cases were reported in the state between 2019 and 2023, according to CAES data.

“This is concerning because before we only saw this bacteria present in the lone star tick, this is the first case detected in the longhorned tick,” Molaei said. “What is concerning about this is that the longhorned tick doesn’t need a mate to reproduce. So it has the potential to spread quickly and we already are seeing that as its population increases.”

Longhorned ticks primarily reproduce through a process called parthenogenesis, where females can lay viable eggs without mating to reproduce. This means a single female tick can create an entire population without a male partner, increasing the risks of rapid spread, Molaei said.

“This is very unusual and something we don’t see too often,” Molaei said. “So far this is the only tick in the United States that has this ability to reproduce without a mate. In other animals like arthropods and certain vertebrae, parthenogenesis has been reported, but it’s still very rare.”

Molaei said that a rise in ehrlichiosis cases is expected in the future. The bacterial infection can be a serious illness, though most cases are not fatal with prompt treatment. Untreated, it can lead to severe complications like organ damage, brain problems and even death. There is no vaccine available, but antibiotics are the traditional course of treatment, he said.

The invasive ticks are not native to the United States and are considered an exotic species. They originally were found in tropical environments in Asia before being detected in the U.S. in 2017. Since its initial discovery, the longhorned tick has expanded into at least 21 states, primarily in the East and Northeast, as well as the District of Columbia, according to CAES. The species was first detected in Connecticut in 2018.

In both its native and invasive range, the longhorned tick is known to transmit a wide variety of pathogens, Molaei said. Researchers have found evidence of infection in field-collected specimens in the U.S. with pathogens that cause Lyme disease, anaplasmosis, babesiosis, Bourbon virus disease and theileriosis. However, it is still unknown if the tick can spread many of these disease agents.

“What is also unusual about this species is that we have shown this tick is capable of attaching and detaching with partial blood feeding,” Molaei said. “Most ticks will stay on a host until they are fully engorged, so this increases the risks of disease transmission. Unfortunately these ticks co-exist with lone star ticks, and to make the matter worse, both of these ticks feed on white tail deer. Deer can act as a reservoir for the bacteria that causes ehrlichiosis. Longhorned ticks can pick up the bacteria after feeding on an infected deer.”

The tick species is now found scattered throughout Fairfield and New Haven counties, according Molaei. However, their range is expected to increase its range further northward. Last year, the ticks were identified in Fairfield, New London, Middlesex and New Haven counties, according to data from CAES.

“As the climate changes, we expect to see this species further north into New England and Canada,” Molaei said. “We are fortunate that. at least for the time being, the population is rather patchy in Fairfield and New Haven counties. It is not widespread yet, but eventually it will become more widespread, and that is where the concern increases.”

Melinda

Reference:

https://www.msn.com/en-us/news/other/emerging-tick-species-in-ct-found-to-carry-rare-bacteria-that-can-be-deadly-officials-say/ar-AA1FDjJX

Celebrate Life · Chronic Illness · Chronic Pain · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Tick Borne Illnesses

After 18 joint replacements in 6 years, she’s now a fierce Lyme advocate

June 3, 2025 Looking for the Light4 Comments

Meghan Bradshaw was just 25 when severe joint pain appeared seemingly overnight.

Once active and independent, she found herself unable to walk, dress, or function on her own. She returned to her mother’s care while doctors struggled to explain her condition.

After two years of misdiagnosis and ineffective treatments for rheumatoid arthritis, Bradshaw finally received clarity. She tested positive for Lyme disease and other tick-borne illnesses.

That diagnosis came after she turned to OrthoCarolina, where her orthopedic team helped connect her with a specialist who identified the root cause of her symptoms. Though the diagnosis came with its own challenges, it offered the one thing she had been missing: hope.

Over the next six years, Bradshaw underwent 18 joint replacements and reconstructions at OrthoCarolina, including procedures on her shoulders, elbows, hips, knees, hands, and meniscus. Her care was guided by a team of four orthopedic specialists who worked together to create a patient-centered, personalized treatment plan tailored to her needs.

“When I was finally diagnosed with Lyme disease and other tick-borne diseases, it felt like I had a chance to fight again,” said Bradshaw. “The doctors at OrthoCarolina didn’t just treat my joints – they helped restore pieces of my life I thought were lost forever. Every surgery brought me closer to feeling like myself again.”

OrthoCarolina’s collaborative care model played a critical role in her recovery. Surgeons, physical therapists, and staff maintained open communication with Bradshaw throughout each stage of treatment. Shared decision-making, comprehensive education, and clear expectations helped her feel confident and supported at every step.

Extraordinary resilience

“Meghan’s case of Lyme arthropathy was one of the most advanced that I’ve encountered,” said Dr. Glenn Gaston, a hand specialist at OrthoCarolina. “She showed extraordinary resilience throughout her entire journey. Our goal wasn’t just to restore joint function, but it was also to help give her life back.”

Today, Bradshaw calls herself the “Bionic Woman,” a title she embraces with pride. But her story doesn’t end with recovery. It has evolved into advocacy.

After earning her master’s in public health from the University of North Carolina at Chapel Hill, she became a national voice for Lyme disease awareness. As Government Relations Manager for the Center for Lyme Action, she has met with more than 100 members of Congress to push for improved education, diagnosis, and care for tick-borne illnesses.

“I’ve turned my pain into purpose,” Bradshaw said. “Every time I share my story, it’s for the people still searching for answers, just like I was.”

Marking a decade since her first symptoms, Bradshaw’s journey continues. This May, during Lyme Disease Awareness Month, her voice stands as a testament to the power of perseverance, the value of accurate diagnosis, and the life-changing impact of compassionate, expert care.

Melinda

Reference:

https://www.lymedisease.org/18-joint-replacements-in-6-years/

Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Men & Womens Health · Tick Borne Illnesses

Eyes wide open: Tackling Lyme-induced spatial visual dysfunction

May 8, 2025 Looking for the Light11 Comments

Rachel Leland, who often posts on social media about her Lyme-related experiences, recently visited the Padula Institute of Vision Rehabilitation. She posted the following account of her appointment on Instagram.

What I knew before this week

My eyes have been hurting every single day for quite some time now. The muscles behind my eyes felt a constant pain and strain. I had daily headaches around my eyes and temples.

In college, I had a rare eye condition for a 21 year old that no one should be getting until they are elderly. That specific problem resolved a long time ago. But, my eyesight has been getting significantly worse over the past few years. My contacts prescription is only good for a few months before I need a stronger one.

What I thought before this week

Everything I was experiencing was normal and that everyone’s eyes probably felt like mine, but they just weren’t talking about it. So I should just keep taking Advil each day to manage the pain and keep smiling through everything, like always. If you pretend everything is fine, then it’s fine…right?

What I know now after my appointment

My eyes should not be in pain every day. The muscles behind my eyes should not feel constant pressure and pain just from turning them slightly left and right, or up and down. My eye muscles are spasming each time I try to focus on something, causing me to sway between double vision and seeing just one thing.

My eyes and brain have to work too hard to correct this, which is causing my eyesight to rapidly deteriorate. I should not be slamming my shoulder into the door frame multiple times a week when I walk through doors. My eyesight should not be getting worse every few months.

Spatial visual processing dysfunction

Extensive testing yesterday shows I have spatial visual processing dysfunction and the problems I’ve been experiencing aren’t just with my eyes, they are with how my eyes communicate the information to my brain.

I was originally going to schedule this appointment during the summer, so as not to miss work. But after a phone consultation with the doctor, we learned that this couldn’t wait. I’m so grateful that we listened.

There is no quick fix. A number of changes are coming my way, and it’s been a lot to process and it all feels overwhelming right now. If you have Lyme and are dealing with issues with your eyes, here’s an interview my mom did with this doctor a few years ago:

Rehabilitating your Lyme-impaired vision

Rachel Leland is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease. On Instagram, she’s @ResilientlyRachel. For more information about Lyme-related eye problems, see the website of the Padula Institute of Vision Rehabilitation.

Melinda

Reference:

Lyme Disease Org

Looking for the Light

Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Tick Borne Illnesses

Lyme Disease Awareness Month-My Experience

May 7, 2025May 7, 2025 Looking for the Light12 Comments

Before my diagnosis of Lyme Disease, I would have looked at this graphic and paid no attention. After 18 months of IV Antibiotic Therapy, experiencing unbelievable pain, and cognitive dysfunction. I would be the poster child for the graphic. Lyme Disease kills and it can take you down slowly. I’m blessed to be in remission.

Testing is inaccurate because doctors have The Western Block test, which tests for several strains of Lyme, but only use one or two of the tests available. Interestingly enough all of my tests for Lyme came back negative until years after I’d been in remission.

When you read about Lyme you will hear about the Bulls-eye rash, yes some people do have a round puffy rash emerge but it’s only about 30% of the time. Don’t be bullied into thinking no rash, no Lyme. BS. I did not get the rash and I’m not sure where I picked up a tick.

If you catch Lyme early a 2-4 week treatment of antibiotics will kill the virus. If not caught early, the Spirochetes make their way into your blood-stream looking for an organ to play host. At this point, you’ve entered the Chronic Lyme stage. Your journey will be the fight of your life.

The CDC does not ackowledge Chronic Lyme exisist which means medical insurance companies will not pay for your doctor visits, IV Therapy and many of the other drugs you need. Some of my prescrptions were covered but not any of the suppliments recommened.

When choosing a doctor, look for a Lyme Literate Doctor or an Infectious Disease Doctor. If you run into problems finding the right doctor, visit the ILADS website and request a referral. They are tight with the information because many of the doctors are being targeted for treating Chronic Lyme.

You and your family do not have to go down the rabbit hole. If you firmly believe you or a loved one may have Lyme go directly to one of the most comprehensive lab testing companies, IGenex. It’s worth every penny spent because my treatments cost over $150,000 and caused us to take a second mortgage.

Be Lyme and Tick-Borne Illness aware. Your health depends on it.

Melinda

Looking for the Light

Reference:

www.lymedisease.org

Celebrate Life · Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Tick Borne Illnesses

Babesiosis on the rise in the Mid-Atlantic region of US

May 6, 2025 Looking for the Light2 Comments

A newly published study in the Journal of Medical Entomologyhighlights the growing presence of babesiosis in the Mid-Atlantic region of the United States.

Researchers documented human cases and detected Babesia microti in local tick populations.

Historically concentrated in the Northeast and Upper Midwest, babesiosis is now emerging in areas where it was previously rare.

Key findings indicate that locally acquired babesiosis cases have been reported for the first time in Maryland, Virginia, West Virginia, and Washington, D.C.

Additionally, Babesia microti was detected in ticks collected from Delaware, Maryland, Virginia, West Virginia, and D.C., marking a concerning expansion of the disease. The study also presents Ixodes keiransi as a potential vector—a first in babesiosis research.

Click here to read the press release from the Entomological Society of America

Melinda

Looking for the Light

Lyme Disease Org

Celebrate Life · Chronic Illness · Climate Change · Health and Wellbeing · Infectious Diease · Medical · Men & Womens Health

Lyme advocate Julia Bruzzese remembers when Pope Francis blessed her

May 5, 2025 Looking for the Light2 Comments

Ten years ago, then-13-year old Julia Bruzzese was unable to walk, due to complications of Lyme disease. Her family took her to JFK airport, to see Pope Francis, who visiting the United States at the time.

She made the national news, when the Pope stopped and blessed her.

Now, after the death of Pope Francis, Julie recalls how that moment changed her life. See this report from ABC7 New York:

Melinda

Reference:

https://www.lymedisease.org/bruzzese-pope-blessing/

Chronic Illness · Infectious Diease · Medical · Men & Womens Health · Tick Borne Illnesses

A mother’s story: When “just anxiety” was really Lyme disease

April 26, 2025 Looking for the Light3 Comments

By Whitney Goetsch

I was a young mother living my dream life when everything changed. At a wedding, I absentmindedly pulled a tick off the back of my leg, crushed it into the pavement, and moved on.

I never realized that tiny creature would alter the course of my life.

Not long after, my health began to unravel. Crippling symptoms emerged, yet every doctor I saw dismissed them as anxiety. But deep down, I knew something was terribly wrong.

What followed was a terrifying descent into medical uncertainty, a relentless fight to uncover the truth while my body continued to deteriorate.

For five years, I battled through a system that refused to listen, all while my family suffered alongside me. I suspected Lyme disease early on, but each time I voiced my concerns, I was brushed aside. “It’s just anxiety.” “You’re overreacting.” “Maybe it’s depression.” The gaslighting was endless.

Finally, after years of searching, I received the diagnoses that changed everything: Lyme disease, multiple co-infections, and alpha-gal syndrome. By then, the damage had already been done.

Documenting every struggle

Throughout this journey, I kept a journal, documenting every struggle, every setback, and every moment of resilience. In 2023, newly diagnosed and still fighting for my life, I turned those pages into a book—because this cannot not keep happening. Not to young mothers. Not to fathers, children, or anyone else. The cycle of medical dismissal and gaslighting must end.

I wrote my book while still in the fight, in the trenches of this disease, so it would be raw, real, and relatable. So others would know they are not alone.

You are not Lyme. You are not a burden. Lyme is the burden placed upon you.

Today, my battle continues. In the summer of 2024, I began SOT therapy for Lyme disease. This winter, I started SOT therapy for Babesia and Bartonella, alongside herbals and methylene blue.

Recent tests have revealed demyelination and autoimmune markers resembling those seen in multiple sclerosis and Alzheimer’s — the result of years of untreated infections.

To help heal my brain and reduce inflammation, I will soon begin peptide therapy. My medical team is also exploring stem cell therapy in Europe. The road ahead remains steep, but I refuse to give up.

Because this fight is not just for me. It’s for every person who has been dismissed, misdiagnosed, and left to suffer in silence.

For more information about Whitney Goetsch’s book, click here: Waves: A Memoir of Perseverance in Battling Chronic Lyme Disease.

Melinda

Reference:

https://www.lymedisease.org/just-anxiety-lyme/

Celebrate Life · Communicating · Health and Wellbeing · Infectious Diease · Mental Health

Friday Quote

April 18, 2025 Looking for the Light1 Comment

Thank you for joining me for this week’s Friday Quote.

Melinda

Celebrate Life · Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Tick Borne Illnesses

Lyme Resources To Help Figure Out Your Next Move

March 25, 2025 Looking for the Light2 Comments

One of the most important things a person with Lyme disease needs is clear, concise information.

Here’s a list of useful resources to get you going in the right direction.

LymeDisease.org is one of the foremost Lyme patient advocacy organizations in the United States. We provide a wealth of information on our website–about ticks, Lyme and other tick-borne diseases, prevention, diagnosis and treatment.

Special features include:

Symptom Checklist: Patients can answer a series of questions, print out the filled-in form and take it to their doctor. The printout describes basic facts, explains the two standards of care for Lyme disease, and endorses the ILADS guidelines. It’s a way to help your doctor help you.

Physician Directory: Find a Lyme-literate practitioner near you.

Our blogs keep the Lyme community up to date on news, analysis, and opinion.

Social media. We spread the word via Facebook, Twitter, Instagram and Pinterest.

Our free weekly email newsletters keep you informed on Lyme-related developments. Click here to sign up.

US National Lyme Online Support Group: Information and emotional support for people dealing with Lyme and other tick-borne diseases.

MyLymeData patient registry: This big data research project allows patients to privately pool information about their Lyme disease experiences. So far, more than 17,000 people have enrolled in the project, providing millions of data points on Lyme disease demographics, tick bites, diagnosis, symptoms, lab tests, co-infections, treatment and quality of life. Add your Lyme data to MyLymeData to help find a cure for Lyme disease.

Lyme disease posters

Children and Lyme disease

Basic info about children with Lyme disease

Gestational Lyme disease LymeHope, a Canadian Lyme advocacy organization, has taken a particular interest in the issue of mother-to-fetus Lyme transmission.

LymeAid4Kids–Financial assistance for Lyme treatment for those under age 21.

Lymelight Foundation–financial assistance for Lyme treatment for children and young adults through age 25.

LivLyme Foundation–Financial grants for children with Lyme disease (under 21).

Mothers Against Lyme–Advocacy and education about congenital and childhood Lyme

Video: Lyme Disease & Pregnancy: State of the Science & Opportunities for Research

Book: When Your Child Has Lyme Disease: A Parent’s Survival Guide by Sandra Berenbaum and Dorothy Kupcha Leland.

Book: Brain Inflamed: Uncovering the Hidden Causes of Anxiety, Depression, and other Mood Disorders in Adolescents and Teens by Dr. Kenneth Bock.

Book: Protecting Your Child From the Child Protection System, by Beth Alison Maloney

Book: Finding Resilience: A Teen’s Journey Through Lyme Disease, by Rachel Leland and Dorothy Kupcha Leland.

Article: Healthy Mom Best Prescription for Healthy Baby (The Lyme Times) (PDF)

Wrightslaw.com–Website with information about Special Education law.

PANS/PANDAS

ASPIRE: The Alliance to Solve PANS and Immune Related Encephalopathies

New England PANS/PANDAS Association

Northwest PANDAS/PANS Network

PANDAS Network

Moleculera Labs

Three books by Beth Alison Maloney: Saving Sammy, Childhood Interrupted: The Complete Guide to PANDAS and PANS, and Protecting Your Child from the Child Protection system (The author of these books is the mother of a child who healed from PANDAS. She is an attorney/advocate for the recognition and treatment of PANS/PANDAS, and advises parents about legal issues related to PANS/PANDAS and other complex medical conditions.)

Parenting with PANS

Ticks

Types of ticks

How to protect yourself from ticks

Find the repellent that’s right for you (EPA website)

Help! I’ve gotten a tick bite. Now what?

TickEncounter Resource Center—University of Rhode Island

Tick testing. There are various places to get ticks tested. Here are several: IGeneX, TickCheck, Ticknology, Tick Report

MilTICK—free tick testing and identification service available for ticks removed from Department of Defense (DoD) personnel and their dependents.

Mast cell activation syndrome and food-related issues

MCAS, when your immune system goes haywire

The agony of mast cell activation syndrome (MCAS)

Healing from mast cell activation syndrome

What to eat when you’re allergic to everything?

Severe weather can worsen mast cell activation syndrome

Alpha-gal syndrome

There is growing evidence that certain types of tick bites can trigger alpha-gal syndrome (AGS) a life-threatening allergy to red meat and meat-related products.

Alpha-gal syndrome–symptoms, diagnosis, treatment

Tick-Borne Conditions United

Alpha-gal Information Website

Other Lyme-related symptoms & issues

Lyme carditis and heart block

Lyme disease can affect the heart in complicated ways

Lyme disease and cognitive impairments

Gastrointestinal manifestations of Lyme

Psychiatric manifestations of Lyme

Lyme disease and hearing loss

Lyme and multiple sclerosis

Lyme and allodynia

Medical marijuana and Lyme disease

The dreaded Jarisch-Herxheimer reaction

How Lyme disease can affect your vision

12 ways you can help yourself manage chronic pain

Morgellons

The Charles E. Holman Morgellons Disease Foundation

Morgellons: The legitimization of a disease (book review)

Skin Deep: The Battle Over Morgellons (documentary film)

Treating Lyme disease with disulfiram

What is disulfiram and why does it spark excitement in Lyme community?

Treating psychiatric Lyme symptoms with disulfiram

Co-infections

The Lyme Times Special Issue on Co-infections (PDF)

About Lyme disease co-infections

Co-infections poster

Mold

Lyme and mold

Survivingmold.com

Dealing with Lyme disease and mold illness at the same time

Mold Testing Guide (How to test your home for mold)

Your guide to mold in your home

Clean indoor air on a budget

Are you unknowingly ingesting toxic mold?

How to donate blood and tissue for Lyme research

Lyme Disease Biobank

Lyme and pets

Basic information about Lyme and pets

Parasite prevalence maps Educational website includes a US map down to the county level, showing where dogs have tested positive for Lyme, anaplasmosis, erhlichiosis and other diseases. Also, information about protecting your pet from tick-borne diseases.

Companion Animal Parasite Council website has comprehensive information about how to protect your pets from ticks and other parasites.

Books (Treatment, healing modalities, family life)

Brain Inflamed: Uncovering the Hidden Causes of Anxiety, Depression, and Other Mood Disorders in Adolescents and Teens, by Dr. Kenneth Bock

CHRONIC: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again, by Dr. Steven Phillips and Dana Parish

Conquering Lyme Disease: Science Bridges the Great Divide, by Brian A. Fallon, MD, and Jennifer Sotsky, MD

The Deep Places: A Memoir of Illness and Discovery, by Ross Douthat. The New York Times columnist delves into his personal years-long battle with chronic Lyme disease.

Finding Resilience: A Teen’s Journey Through Lyme Disease, by Rachel Leland and Dorothy Kupcha Leland. Based on the journal Rachel kept during the worst years of her illness, with additional insights from her mother, Dorothy.

How can I get better? An Action Plan for Treating Resistant Lyme and Chronic Disease, by Dr. Richard Horowitz

The Lyme Diet, by Dr. Nicola McFadzean. What to eat while healing from Lyme.

Recovery from Lyme Disease: The Integrative Medicine Guide to Diagnosing and Treating Tick-Borne Illness, by Dr. Daniel Kinderlehrer.

TOXIC: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness, by Dr. Neil Nathan.

When Your Child Has Lyme Disease: A Parent’s Survival Guide by Sandra Berenbaum and Dorothy Kupcha Leland.

Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, by Dr. Richard Horowitz.

Books (History, Policy, and Science)

Bitten: The Secret History of Lyme Disease and Biological Weapons, by Kris Newby

Cure Unknown: Inside the Lyme Epidemic, by Pamela Weintraub.

Lyme: The First Epidemic of Climate Change, by Mary Beth Pfeiffer.

Film and Video

I’m Not Crazy, I’m sick, Lyme documentary, available on various streaming services.

The Quiet Epidemic, documentary film about chronic Lyme disease, available on various streaming services.

Under Our Skin, award-winning Lyme documentary film.

Under Our Skin 2: Emergence (sequel)

The Red Ring, documentary takes a global look at Lyme disease.

Your Labs Are Normal, feature film based on real-life experiences.

Financial assistance

LymeTAP.com–Lyme Testing Access Program. Financial assistance for Lyme diagnostic testing.

Needymeds.com–Clearing house for information about various kinds of financial assistance for obtaining medication.

Lymelight Foundation–financial assistance for Lyme treatment for children and young adults through age 25.

Lyme Treatment Foundation–financial assistance for Lyme treatment. No age restrictions.

LivLyme Foundation–Financial grants for children with Lyme disease.

LymeAid4Kids—grants for young Lyme patients (up to age 21).

Partner in Lyme—grants for Lyme treatment for residents of Connecticut.

Applying for Social Security benefits for Lyme disease

Outside of the United States

ALCE Asociación de Lyme Crónico España (Spain)

Canadian Lyme Disease Foundation

LymeHope (Canada)

LYRI (Mexico)

Lyme Disease Action (UK)

LymeDiseaseUK

Lyme Disease Association of Australia

Karl McManus Foundation (Australia)

France Lyme

Tick Talk Ireland

Lyme Poland

Association Luxembourgeoise Borréliose de Lyme (Luxembourg)

Onlyme-aktion.org (Germany)

Lymevereniging (Netherlands)

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .

Melinda

Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Mental Health · Tick Borne Illnesses

When Lyme patients must fight to be believed by doctors

March 11, 2025 Looking for the LightLeave a comment

By Nancy Dougherty

llness invalidation by medical professionals—sometimes called “gaslighting”—is an underappreciated and understudied problem in Lyme disease.

Many Lyme disease patients complain not only of fighting to recover their health but also of fighting to be believed by health care practitioners.

Expecting to receive understanding and proficient care from medical professionals, many instead experience having their persistent debilitating symptoms dismissed, minimized, disbelieved and/or psychologized.

How common is the occurrence of medical gaslighting in Lyme disease? Is illness invalidation by medical professionals related to disease severity? Are there specific constituencies who are being affected more than others?

These are some of the questions that a team of researchers led by Alison Rebman, MPH, Assistant Professor in Medicine and Director for Clinical and Epidemiological Research at the Johns Hopkins Lyme Disease Research Center at Johns Hopkins Medicine, set out to identify and quantify in a cohort of well-characterized Lyme disease patients.

Invalidating encounters

The Johns Hopkins study, published in August 2024 in Scientific Reports, finds that invalidating encounters with medical professionals are common for post-treatment Lyme disease (PTLD) patients, particularly women and younger patients, and also are linked to higher illness severity.

Lyme disease is the most common tick and vector-borne disease in the US with about 500,000 new cases per year. Lyme infections are expanding geographically, and acute and chronic cases are on the rise in the US and Eurasia. Lyme infection-associated chronic illness affects around 2 million Americans and can be difficult to properly diagnose and effectively treat.

A Lyme infection can affect multiple body systems including musculoskeletal, neurologic, and cardiovascular. Patients with early diagnosis and appropriate treatment usually get better. However, about 10-20% of patients even when treated promptly with standard of care antibiotics do not return to health and are functionally impaired by persistent musculoskeletal pain, crushing fatigue, and cognitive dysfunction, known in the research setting as post-treatment Lyme disease (PTLD).

Patients frequently refer to this as “chronic Lyme.” Misdiagnosis and delayed treatments further increase the risk for PTLD as well as for more broadly defined community-based Lyme infection-associated chronic illness or “chronic Lyme.”

Women and younger patients

In the Johns Hopkins study, 49% of the PTLD patients reported a lack of understanding and 29% experienced discounting from medical professionals. Additionally, women and younger patients were at higher risk for experiencing more invalidation than men or older age patients.

The study found, “Before their initial diagnosis of Lyme disease, approximately half (51.3%) had first been told that their symptoms represented another illness or condition. This high rate is consistent with the hypothesis that diagnosis and treatment delays, and possibly exposure to inappropriate treatment, may be risk factors for PTLD.”

Women more often received alternative diagnoses (such as another contested illness like fibromyalgia or ME/CFS and/or a psychological illness) which in turn correlated with more discounting and lack of understanding. PTLD patients who reported the highest levels of illness invalidation were discovered to have greater symptom severity, lower quality of life, and less trust in physicians.

The pervasiveness of Lyme disease illness invalidation and the consequential negative effects on illness burden and health outcomes are not broadly known by medical professionals.

Improved physician education is needed to help engender more patient-centered paradigms that incorporate the patient illness experience and better recognize how that experience may impact the healing process.

National Academies look at IACI

The National Academies of Sciences, Engineering and Medicine (NASEM) has helped validate infection- associated chronic illnesses as being significant public health problems that need greater national attention, a coordinated strategy, and considerably more federal resources.

NASEM held its first national workshop on infection-associated chronic illnesses (IACI) in June 2023 to explore overlapping symptoms and biologic pathways for IACIs including Lyme disease, long COVID, ME/CFS, MS, and others.

In July 2024, a follow-up NASEM meeting focused specifically on Lyme infection-associated chronic Illness. Both forums discussed the importance of listening to and incorporating patients’ illness experience perspectives into improving diagnostic and treatment approaches. For example, patient-driven data such as MyLymeData can be leveraged to improve research and clinical care. It is vital to listen to patients especially when diagnostics are problematic, treatments are inadequate, and the science is contested or evolving.

Building upon insights and collaborative momentum from the NASEM IACI meetings, a coalition of advocates (patient, scientific and medical) are now calling for the creation of a new National Institutes of Health (NIH) office to help strengthen and coordinate research across infection-associated chronic conditions and illnesses including Lyme infection-associated chronic illness, Long COVID, ME/CFS, PANS/PANDAS, POTS/dysautonomia and others.

Listening to patients will be key to advancing solutions, reducing invalidating patient-practitioner encounters, and improving health outcomes.

Nancy Dougherty is an education and communications consultant for the Johns Hopkins Lyme Disease Research Center. Other research investigations at the Center include Pilot Treatment Trials and the SLICE Studies.

Melinda