CHRONIC LYME
Updated: Oct 15
PERSISTENT LYME?
CHRONIC LYME?
PERSISTENT SYMPTOMS?
PERSISTER BACTERIA?
Here are some of my favorite sources to start understanding this complex disease when not treated early.
If you took your antibiotics, were told you should be fine by now, and you still feel sick, please hear me: you are not imagining it, and you are not alone. I lived this too. For years so many of us were told it wasn't real. Today the research is finally catching up to what we have been saying all along, and I gathered the newest of it here so you have it in one place, for yourself, your loved ones and your doctors.
Trusted Resources:
Read my journey here:
Lyme Disease Possible Solutions post is here:
Wondering if your symptoms fit? My Most Common Symptoms of Lyme, Babesia and Bartonella post is here:
Short on time or energy? A quick-view graphic with the key points is at the bottom of this post.
IN THIS POST
-So many names, one struggle
-You are not alone
-Why Lyme can hang on
-The standard test misses many
-What Dr. Horowitz is finding
-There is real hope
-We are finally being heard
-Older studies that still matter
SO MANY NAMES, ONE STRUGGLE
Doctors and researchers use different names, and it can get confusing. Here is the simple version:
-Chronic Lyme: what most of us and our Lyme literate doctors call it when Lyme keeps going.
-Persistent Lyme: the name Bay Area Lyme Foundation prefers, because it says the illness can continue past treatment. A federal Tick-Borne Disease Working Group subcommittee recommended this name back in 2020.
-PTLDS (post-treatment Lyme disease syndrome): the name many mainstream doctors use for symptoms that stay after treatment.
-Lyme IACI (Lyme infection-associated chronic illness): the newest research name, used by the National Academies in 2025 and by the U.S. Department of Health and Human Services.
-Persister bacteria: Lyme bacteria that can slip into a dormant, sleepy state when antibiotics come along, which may help them ride out treatment.
YOU ARE NOT ALONE
-About 10 to 20 percent of people still have symptoms like fatigue, pain and brain fog after standard antibiotics, and it can last for years (National Academies, 2025).
-Up to 30 percent have ongoing symptoms in the research Bay Area Lyme Foundation shares, and up to two million Americans may be living with persistent Lyme.
-In a 2025 Bay Area Lyme Foundation study of early Lyme, 21 percent (47 of 226) of people who took antibiotics still had symptoms three months later, and only 35 percent of them went back to their doctor about it. If that is you, please go back.
-ILADS estimates five to seven million Americans have been infected over the past ten years.
WHY LYME CAN HANG ON
There is not just one answer, and it may be different for each of us. Here is what the newest research points to.
1. Lyme can hide and survive
-2026: A review by Melissa Fesler NP, Dr. Raphael Stricker and Lorraine Johnson looked at 56 studies. Ten animal studies and 25 human studies showed Lyme bacteria surviving antibiotic treatment, and the bacteria were found anywhere from 2 to 46 months after treatment in rodents, dogs, monkeys, horses and people.
-2024: A study using dried blood spots found Lyme DNA in 39 percent of 105 people with Lyme-like illness. None of the 42 healthy people tested positive.
-2024: Early research funded by Bay Area Lyme Foundation, from Stanford, MIT and UCSF, found that a Lyme surface protein called P66 may work like a "don't eat me" sign that tells immune cells to leave the bacteria alone. This work had not yet been peer reviewed.
-2023: Monica Embers, PhD, and her team at Tulane tested a lab model of persistent Lyme. One antibiotic for 28 days did not clear the infection, but seven antibiotic combinations did clear it from tissue samples. This was a lab study, and they are calling for human studies next.
2. Leftover pieces can keep inflammation going
-2025: Northwestern University researchers found that pieces of the Lyme cell wall (called peptidoglycan) can stay in the body for weeks to months after the bacteria die. They found these pieces in joint fluid and believe they may keep inflammation going.
-2022: In lab testing, Tulane researchers found that pieces of dead Lyme bacteria inflamed brain and nerve tissue even more than live bacteria did, and they also killed brain cells.
3. The immune system and gut can get thrown off
-2025: A Global Lyme Alliance funded study from the University of Kentucky found that monkeys with Lyme lost helpful gut bacteria that make butyrate, whether they were treated or not. Researchers are now asking if these gut changes play a part in lingering symptoms. That question is still open.
-2023: Heather Adkison and Monica Embers, PhD, reviewed why 10 to 30 percent of Lyme patients are not cured by antibiotics. They looked at three main possibilities: the immune system attacking the body, lasting after-effects of the Lyme infection, and bacteria that survive.
4. Other things that can keep us sick
Dr. Marty Ross (2025, updated 2026) shares several more reasons treatment may not work for everyone:
-Mold toxicity, which can look just like chronic Lyme, so he suggests ruling it out first
-Gut damage from antibiotics
-The immune system attacking the body by mistake
-Limbic system overactivity, when the brain's emotional response system becomes overreactive and may keep pain and fatigue going
-Damage to nerves, muscles, the brain and mitochondria
-Ongoing inflammation and an immune system out of balance
Coinfections like Bartonella and Babesia matter too. That same 2024 dried blood spot study found Bartonella DNA in 19 percent of the people with Lyme-like illness.
THE STANDARD TEST MISSES MANY
-2025: In the Bay Area Lyme Foundation study, the standard two-tier Lyme test caught only 23 percent of early Lyme patients.
-2026: IGeneX's single-step ImmunoBlot Lyme tests were FDA cleared. In IGeneX's study, they found 58.3 percent of early Lyme cases, compared to 30 percent with standard two-tier testing.
WHAT DR. HOROWITZ IS FINDING
-2026: He reported a 67-year-old woman with chronic Lyme and mild memory problems. After dapsone combination therapy, an Alzheimer's-related blood marker (p-tau 217) came back into the normal range, and she noticed less knee pain and better focus and memory. This was one person who also had other treatments, and he is calling for a larger study.
-2024: He reported three women who were sick for 4 to 15 years with Lyme, Babesia and Bartonella, even after earlier long treatment. After dapsone combination therapy followed by short high-dose pulses, all three improved greatly, and two stayed in remission for a year or more. This was a small case report.
-He also put together a list of research showing Lyme bacteria can survive antibiotics. It is a great one to keep handy for talks with doctors and loved ones.
THERE IS REAL HOPE
-People heal every day. Lyme literate doctors, researchers and advocates are paving the way for all of us.
-2023: In a case series of 10 people with severe late neurological tick-borne illness, 7 of 10 were in complete remission two years after finishing long-term combined treatment.
-I am living proof that you can rise above this. Never give up.
WE ARE FINALLY BEING HEARD
-May 2025: The National Academies of Sciences, Engineering, and Medicine released a major report. It said there are still no treatments proven safe and effective for long-term symptoms after Lyme, that almost all treatment trials so far have only tested antibiotics, and that research funders should start looking for treatments now instead of waiting until the exact cause is known.
-July 2025: LymeDisease.org shared that the conversation around chronic Lyme is finally shifting, helped in part by Long COVID showing the world that infections can leave lasting illness behind.
-December 2025: The U.S. Department of Health and Human Services held a national Lyme roundtable. ILADS was there asking for recognition of the lingering symptoms so many of us live with, and for doctors to have room to make treatment decisions for their patients.
-January 2026: Dr. Charlotte Mao of Bay Area Lyme Foundation wrote that chronic Lyme patients have been ignored for far too long, and that this attention now needs to turn into real research, progress and better care.
-The Department of Health and Human Services now has a Lyme page with a Clinician Locator that links to the ILADS provider search, so you can look for an experienced doctor by zip code.
OLDER STUDIES THAT STILL MATTER
-2021: Monica Embers, PhD, of Tulane, summarized the evidence that Lyme bacteria can survive after standard treatment.
-2021: Tulane and Columbia researchers studied a patient who took 10 days of doxycycline, later developed dementia, and passed away. Lyme DNA was found in the spinal cord and brain, and whole Lyme bacteria were seen in the spinal cord.
-2019: A Johns Hopkins study in mice found that the persister form of Lyme caused worse arthritis and heart inflammation. Doxycycline or ceftriaxone alone did not clear it, but a three-drug combination did in every mouse.
-2018: An international team found signs of ongoing infection in patients who still had symptoms after antibiotic treatment.
-2017: Monica Embers, PhD, found living Lyme bacteria in monkeys after 28 days of doxycycline.
RELATED RISE ABOVE LYME POSTS
LYME DISEASE - POSSIBLE SOLUTIONS
MOST COMMON SYMPTOMS OF LYME, BABESIA AND BARTONELLA
NEWLY DIAGNOSED CHRONIC LYME
ANTIBIOTICS - WHY USING ONLY ONE IS NOT RECOMMENDED IN CHRONIC LYME
https://www.riseabovelyme.com/post/antibiotics-why-using-only-one-is-not-recommended-in-chronic-lyme
PULSING ANTIBIOTICS
BIOFILMS
DOCTOR LETTERS
SOURCES
Dr. Richard Horowitz, Journal of Alzheimer's Disease Reports, Dapsone Combination Therapy Case Study (2026)
LymeDisease.org, Even More Evidence That Lyme Disease Can Persist After Antibiotics (2026)
LymeDisease.org, HHS Partners with ILADS (2026)
U.S. Department of Health and Human Services, Lyme Disease Page and Clinician Locator (2025, updated 2026)
Bay Area Lyme Foundation, Dr. Charlotte Mao, A New Year Call to Action (2026)
IGeneX FDA-Cleared Lyme Tests, LymeDisease.org (2026)
ILADS, HHS National Lyme Disease Roundtable (2025)
Global Lyme Alliance, New Study Reveals Gut Impact of Lyme Disease (2025)
LymeDisease.org, Is the Chronic Lyme Narrative Finally Shifting? (2025)
Bay Area Lyme Foundation, Early Lyme Patients with Ongoing Symptoms Study (2025)
Northwestern University, Leftover Lyme Cell Wall and Lingering Symptoms (2025)
National Academies, New Treatments for Lyme Infection-Associated Chronic Illnesses (2025)
Dr. Marty Ross, Why Chronic Lyme Regimens Fail (2025, updated 2026)
Pathogens, Bartonella and Lyme DNA in Dry Blood Spots (2024)
Bay Area Lyme Foundation, The "Don't Eat Me" Protein (2024)
Dr. Richard Horowitz, Microorganisms, Dapsone Combination Therapy, 3 Cases (2024)
Bay Area Lyme Foundation, Monica Embers PhD, Combination Antibiotics Study (2023)
Antibiotics, Long-Term Treatment Case Series (2023)
Frontiers in Medicine, Adkison and Embers, Lyme Disease and the Pursuit of a Clinical Cure (2023)
Center for Lyme Action, State of Lyme Disease Research (2023)
LymeDisease.org, Dr. Horowitz on Lyme Persistence (2022)
Tulane University, Could Long-Dead Bacteria Be Behind Lingering Lyme Symptoms? (2022)
Global Lyme Alliance, Persister Bacteria White Paper
Bay Area Lyme Foundation, Persistent Lyme Disease (PLD)
LymeDisease.org, Monica Embers PhD, The Evidence for Persistent Lyme (2021)
LymeDisease.org, Johns Hopkins Persistent Lyme Study (2019)
LymeDisease.org, Infection Found in Treated Patients with Persistent Symptoms (2018)
Bay Area Lyme Foundation, Lyme Bacteria Survive 28-Day Antibiotics (2017)
Disclaimer: Rise Above Lyme makes no claims about any possible benefit of using any product mentioned within this site. Always consult with your doctor before adding anything. The information shared is based on personal experience, years of accumulated researched resources from Lyme Literate doctors and polls conducted within Lyme groups from actual patient experience using these solution ideas.
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