DISMISSIVE DOCTORS / MEDICAL GASLIGHTING
Updated: 1 day ago
Once you're actually a person impacted by the horror and disability Lyme can create, you quickly realize how little help is available to you. A doctor not knowing what to do is NOT an excuse to turn someone away. Solutions are only found by those who say, "I'll try." Others who won't try should be ashamed.
Please feel free to use my Doctor Letter or Cardiologist Letter (linked below). Email it to your doctor so they can read the links. You're allowed to fire a dismissive doctor. Keep the ones who at least try.
Take your power back by being your own health advocate. You are worth fighting for. - Jessica
Short on time or energy? A quick-view graphic with the key points is at the bottom of this post.
Some doctors are working with short appointments, real uncertainty about tick-borne illness and tests that miss a lot. Knowing why dismissal happens can help you speak up and find the right care.
WHAT MEDICAL GASLIGHTING CAN LOOK LIKE
Medical gaslighting is when a patient is made to doubt what they know about their own body. Global Lyme Alliance shares these red flags from a New York Times article:
- You're interrupted often and not allowed to explain.
- Your symptoms are downplayed, or the provider won't talk about them.
- Key lab work or imaging that could confirm or rule out a diagnosis isn't ordered.
- You're treated in a rude, condescending or belittling way.
- Mental health gets the blame for your symptoms, without any screening or referral.
WHY LYME PATIENTS GET DISMISSED
- Diagnosis often takes a long time. ILADS says many Lyme patients go from provider to provider for months, or even years, before getting an accurate diagnosis.
- A 2023 survey of 986 people with Lyme (published in Healthcare) found that respondents saw a median of 10 doctors before diagnosis. Many were told their symptoms came from stress, anxiety, aging or mental illness, and some had their blood tests and EM rashes brushed aside.
- In that same survey, a positive blood test didn't change much. Among U.S. respondents, most said their doctor still wasn't convinced they had Lyme, whether or not they'd had a positive test.
- Many clinicians are unsure about Lyme. A 2021 Cornell review found notable uncertainty among healthcare providers about how to diagnose and treat Lyme. Dr. Daniel Cameron, lead author of the 2014 ILADS guidelines, notes that complex Lyme visits can feel time-consuming and frustrating for doctors, and that persistent symptoms deserve careful reassessment rather than assumptions either way.
- Lyme-literate care is hard to find. A LymeDisease.org study (2022) found that clinicians who treat persistent Lyme face clinical, regulatory and financial barriers, which may make it hard to recruit and keep enough of them.
- When we polled 295 members of our Rise Above Lyme support group, 136 said it took 10 to 20 years to get diagnosed. Only 26 were diagnosed within a year.
WHY A NEGATIVE TEST DOESN'T END THE CONVERSATION
- Lyme is a clinical diagnosis. ILADS teaches that a doctor looks at your history, symptoms, exam and tick exposure. Labs can back up a diagnosis, but no lab result alone can confirm Lyme or rule it out.
- Antibody tests can miss Lyme. ILADS explains that testing too early or too late can give a false negative, and antibodies can fade over time.
- A 2026 study supported by the Bay Area Lyme Foundation (Journal of Clinical Microbiology) found that common two-tier tests missed 64% to 78% of early Lyme cases, even in people with an EM rash.
- Fewer than 30% of U.S. Lyme patients remember a tick bite, and fewer than 20% of Lyme rashes look like a classic bull's-eye (ILADS). Not remembering a bite doesn't rule out Lyme.
CLINICAL DIAGNOSIS
LYME DISEASE AND CO-INFECTION TESTING
WHY IT MATTERS
- A 2024 Johns Hopkins study of 80 people with post-treatment Lyme disease found that patients who felt more misunderstood or discounted by medical professionals also had worse symptoms, lower quality of life and less trust in doctors. Women and younger patients reported more of this. The researchers suggest that reducing invalidation could help patients.
- A 2025 review of 151 studies (more than 11,000 people with conditions like long COVID, fibromyalgia, POTS, lupus and ME/CFS) found that having symptoms dismissed was linked to shame, anxiety and trauma around healthcare, avoiding care and delayed diagnosis.
- A 2024 paper in Current Psychology describes medical gaslighting as a pathway to medical trauma, with symptoms that can look like PTSD.
- Missed Lyme can be serious. In 2023, a Maine jury awarded $6.5 million to the family of a young man whose early signs of possible Lyme were missed by a hospital doctor. According to the family's attorneys, a different team later diagnosed the 25-year-old with Lyme disease and Lyme carditis (Lyme in the heart), and he died about a week later (WGME).
CARDIOLOGIST LETTER
WHEN IT HAPPENS OVER AND OVER
Being dismissed once is frustrating. Being dismissed again and again can leave real scars. Medical trauma, sometimes called medical PTSD, is a real outcome of medical gaslighting, and I know because I've lived it. If this is you, you're not overreacting, and you're not alone. I shared my own story, and what has helped me, here:
MEDICAL PTSD / MEDICAL TRAUMA
HOW TO ADVOCATE FOR YOURSELF
- Write out your story ahead of time: when your symptoms started, how they changed and how you feel now. Include the medicines you take and the questions you want to ask. Global Lyme Alliance suggests giving this to your doctor before the visit so they can see the whole picture.
- Appointments are often short, so lead with your most troubling symptoms.
- Bring someone you trust to take notes and help you remember to speak up.
- Stay polite, confident and firm. If you've been diagnosed, share it as a fact, not a question.
- Ask for shared decision-making. ILADS recommends that a patient's goals and values be identified and strongly considered when choosing treatment.
- Bring a letter. My Doctor Letter shares the newest Lyme science in a short, respectful way.
PREPARING FOR YOUR LYME DOCTOR APPOINTMENT
FREE SYMPTOM CHECKLIST: A TOOL TO BRING TO YOUR APPOINTMENTS
DOCTOR LETTER
My video on dismissive doctors:
FINDING LYME-LITERATE CARE
- Look for a doctor who listens. Global Lyme Alliance describes a Lyme-literate doctor who heard the whole story, reviewed the full medical record, asked questions, made time for questions and ran specialized tests.
- You can always change doctors. Global Lyme Alliance reminds us that you have the final say over your care, and if a doctor doesn't feel right, you can look for someone new.
- Keep the doctors who try. A doctor doesn't have to be Lyme-literate to help with other health issues, and a doctor who is willing to learn is worth keeping.
- Change is happening. A 2026 paper from the Office of the U.S. Surgeon General calls for patient-centered care for Lyme-related chronic symptoms and other infection-associated chronic illnesses, including validating what patients go through.
LYME LITERATE DOCTORS
MY EXPERIENCE
Many years ago, I tested negative for Lyme. Six weeks later, I tested positive. When I first got all of my results, I reached out to 25 different infectious disease doctors. My neurologist and cardiologist sent referrals too. Not one of them would let me make an appointment.
A Lyme-literate naturopathic doctor is who saved my life. I am so thankful to the Lyme-literate doctors who stepped up, and to the few infectious disease doctors who have opened their eyes and done the research to help us.
RELATED POSTS
TIPS ON HOW TO DEAL WITH CONVENTIONAL DOCTORS (walking in with good information and confidence)
AVERAGE TIME FOR DIAGNOSIS (our member poll on how long diagnosis took)
SOURCES
ILADS, Lyme Disease Basics for Providers (no date shown)
ILADS, Controversies and Challenges in Lyme Disease (no date shown)
ILADS, Treatment Guidelines (no date shown)
Global Lyme Alliance, Medical Gaslighting and Lyme Disease (2022)
Global Lyme Alliance, How to Be an Advocate with Your Non-Lyme Doctor (2019, older source, still worth reading)
Fagen et al., Medical Gaslighting and Lyme Disease: The Patient Experience, Healthcare (2023)
Rebman, Yang and Aucott (Johns Hopkins), Invalidation in Post-Treatment Lyme Disease, Scientific Reports (2024)
Horn et al., Two-Tiered Testing in Early Lyme Disease, Journal of Clinical Microbiology (2026)
LymeDisease.org, New study shows standard Lyme tests miss most early infections (April 2026)
Johnson and Maloney (LymeDisease.org), Access to Care in Lyme Disease: Clinician Barriers, Healthcare (2022)
Nesgos et al., Lyme Disease Patient-Provider Communication Review, Ticks and Tick-borne Diseases (2021)
Dr. Daniel Cameron, Physician Frustration With Lyme Disease Patients (updated 2026)
Bontempo et al., Harmful Consequences of Invalidation in Health Care, Psychological Bulletin (2025)
Shapiro and Hayburn, Medical Gaslighting as a Mechanism for Medical Trauma, Current Psychology (2024)
Iskander and Haridopolos, Making Invisible Illnesses Visible, Clinical Infectious Diseases (2026)
WGME, Jury awards $6.5M to Maine family for wrongful death, negligent misdiagnosis (2023)
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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