CARDIOLOGIST LETTER
Updated: Oct 19
This letter is for you to give to your cardiologist, so they understand how Lyme disease and its co-infections can affect the heart, take you seriously and screen you properly. Copy and paste it into an email or your patient portal, or print this page and bring it to your appointment. Add your name at the bottom. Every point is backed by a source listed at the end, so your doctor can check it for themselves.
There is a quick-view graphic with the key points at the bottom of this post.
Dear Doctor,
Thank you for taking the time to read this. Because of my Lyme disease (and/or tick-borne co-infections), I'm asking that my heart be carefully screened and monitored. I'm not asking you to have all the answers. I'm asking you to keep an open mind, because a lot of new information about Lyme and the heart has come out in the last few years.
WHAT ILADS TEACHES
- The International Lyme and Associated Diseases Society (ILADS) teaches that Lyme is a clinical diagnosis, and that lab results can't make or rule out the diagnosis on their own.
- ILADS lists palpitations, chest pain, shortness of breath, lightheadedness and fainting among the symptoms of Lyme.
- ILADS notes that Bartonella is associated with myocarditis and endocarditis.
- In May 2026, the U.S. Department of Health and Human Services (HHS) announced a partnership with ILADS. Patients can now find ILADS's clinician locator through hhs.gov/lyme.
- Please know there are two different medical guidelines for Lyme, one from ILADS and one from the IDSA. In its final report to Congress (2022), the federal Tick-Borne Disease Working Group asked that federal websites acknowledge there are divergent views on diagnosing and treating persistent and chronic Lyme.
LYME CAN AFFECT THE HEART
- The CDC states that Lyme carditis occurs in about 1 out of every 100 Lyme disease cases reported to the CDC.
- Dr. Adrian Baranchuk, a cardiologist and Lyme carditis expert, has estimated that about 3% to 5% of people with Lyme may have heart involvement (Bay Area Lyme Foundation, 2023).
- Lyme carditis can cause light-headedness, fainting, shortness of breath, heart palpitations or chest pain. The heart block it causes can vary in degree and change quickly (CDC).
- The CDC advises doctors to ask every patient with suspected Lyme about heart symptoms, and to treat suspected Lyme carditis with antibiotics right away instead of waiting for Lyme test results. Patients with suspected severe Lyme carditis need to be hospitalized for heart monitoring and IV antibiotics.
PLEASE CONSIDER LYME BEFORE A PERMANENT PACEMAKER
- Dr. Baranchuk's advice to fellow doctors: before implanting a pacemaker, consider Lyme carditis (Bay Area Lyme Foundation, 2023).
- A 2023 Swedish national study (Open Forum Infectious Diseases) estimated that 59% of adults with Lyme carditis received a permanent pacemaker, which the authors called a cause for concern.
- Even the IDSA guideline (2020), which many doctors follow, strongly recommends temporary pacing, rather than a permanent pacemaker, when a patient with Lyme carditis needs pacing for a slow heart rate.
MISSING IT CAN BE DANGEROUS
- Mass General researchers (PLOS ONE, 2021) studied more than 96,000 Lyme hospitalizations. Patients with Lyme carditis died in the hospital three times as often as other Lyme patients (1.5% compared with 0.5%, before adjusting for other factors).
- Peter Smith was 25 when he died of Lyme carditis in 2017. At a hospital in Portland, Maine, his doctor noted a target-shaped spot but recorded no sign of Lyme and diagnosed a skin infection. In 2023, a jury ordered the hospital and doctor to pay $6.5 million to his family. In 2025, Maine's highest court threw out the $2 million awarded for lost future earnings, and the rest of the verdict stood.
- Joseph Elone was 17 when he died of Lyme carditis in 2013. His family lived in Poughkeepsie, New York. As LymeDisease.org reported, a standard Lyme test was used to wrongly rule out his Lyme. His parents sued four doctors, a pediatric practice and a hospital, and the case settled in 2023, just days before trial.
- Dr. Neil Spector, a leading cancer researcher at Duke, struggled with Lyme disease that was first misdiagnosed. In 2009, after near-fatal heart failure, he needed a heart transplant.
CO-INFECTIONS CAN AFFECT THE HEART TOO
- Babesia: in a Yale study of 163 patients hospitalized with babesiosis (Clinical Infectious Diseases, 2022), about 1 in 5 had at least one heart complication, including atrial fibrillation, heart failure, QT prolongation and cardiac ischemia. Patients with heart complications died more often (9.4% compared with 0.8%).
- Bartonella: the American Heart Association (2025) lists Bartonella among the hard-to-culture germs that cause blood culture-negative endocarditis. In a 2023 study of 420 U.S. patients with Bartonella found by molecular testing, 140 had endocarditis (Emerging Infectious Diseases).
- Rocky Mountain spotted fever: this tick-borne infection damages the lining of blood vessels and can affect many organs, including the heart. Heart involvement is rare, but a 2023 case report (Cureus) described heart rhythm problems as a late, severe complication. The CDC warns that without early doxycycline, it can be fatal within days.
POTS AND DYSAUTONOMIA
- Johns Hopkins (2026) lists Lyme disease among the conditions known to potentially cause autonomic neuropathy, which can lead to POTS.
- Johns Hopkins researchers (Frontiers in Neurology, 2024) reviewed dysautonomia after Lyme and asked whether it may be a key part of post-treatment Lyme disease. They noted it has not yet been established as a complication of Lyme in the medical literature, and that more research is needed.
- A 2025 study from Serbia (Biomedicines) found orthostatic hypotension in 53.4% of patients with late-stage Lyme.
WHAT I'M ASKING
- Please ask me about heart symptoms, like palpitations, chest pain, light-headedness, fainting or shortness of breath.
- Please consider an ECG, and any other heart monitoring you feel is needed.
- If I have heart block, please consider Lyme carditis before a permanent pacemaker.
- Please consider co-infections like Babesia, Bartonella and Rocky Mountain spotted fever.
- If I feel worse when I stand up, please consider POTS or dysautonomia.
- Please work with me as a partner. I want to get better, and I believe we can do that together.
Thank you for your time, your care and your willingness to learn more about this illness with me.
Sincerely,
(Your name)
SOURCES
ILADS - Lyme Disease Basics for Providers (updated 2026)
HHS - HHS Unveils Plan to Combat Lyme Disease (May 2026)
HHS Tick-Borne Disease Working Group - 2022 Report to Congress
CDC - Clinical Care and Treatment of Lyme Carditis (reviewed September 2026)
Bay Area Lyme Foundation - How to Diagnose if Lyme Disease is Affecting the Heart (Dr. Adrian Baranchuk interview, 2023, updated 2024)
Clinical Infectious Diseases - IDSA, AAN and ACR 2020 Guidelines for the Prevention, Diagnosis and Treatment of Lyme Disease
Open Forum Infectious Diseases - Incidence of Lyme Carditis and Lyme Carditis as a Cause of Pacemaker Implantation (December 2023)
PLOS ONE - Mass General study of Lyme carditis hospitalizations in the U.S. (November 2021)
Maine Public - Mercy Hospital, physician ordered to pay $6.5 million in wrongful death suit (February 2023)
Maine Supreme Judicial Court - Smith v. Henson, 2025 ME 55 (June 2025)
LymeDisease.org - Mary Beth Pfeiffer on the Joseph Elone lawsuit settlement (May 2023)
Duke Health - Bay Area Lyme Foundation grant honors Spector (September 2023)
Clinical Infectious Diseases - Cardiac Complications of Human Babesiosis (Yale, 2022)
American Heart Association - Blood Culture-Negative Endocarditis scientific statement (March 2025)
Emerging Infectious Diseases - Bartonella in U.S. patients by molecular testing (March 2023)
CDC - Rocky Mountain Spotted Fever: Clinical Signs and Symptoms (2024)
Cureus - Rocky Mountain Spotted Fever Associated With Cardiac Arrhythmias (case report, July 2023)
Johns Hopkins Medicine - Postural Orthostatic Tachycardia Syndrome (POTS) (2026)
Frontiers in Neurology - Dysautonomia following Lyme disease: a key component of post-treatment Lyme disease syndrome? (Johns Hopkins, February 2024)
Biomedicines - Autonomic nervous system testing in post-COVID syndrome, chronic fatigue syndrome and Lyme disease (Milovanovic et al., 2025)
RELATED POSTS
Cardiology - Lyme Carditis and POTS
Doctor Letter
Doctor Letters and Education
POTS Causes and Symptoms
POTS Testing
POTS and Dysautonomia Possible Solutions
Autonomic Nervous System (ANS) Dysfunction in Lyme
Blood Pressure Issues Possible Solutions
Babesia Most Common Symptoms
Bartonella Most Common Symptoms
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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