POTS CAUSES AND SYMPTOMS
Updated: Oct 20
Lyme disease and Babesia caused POTS for me. I speak from experience, as POTS was one of the most common reasons I had to go to the ER. Once it was managed, I was better able to understand my health and not live in such fear.
It gives me a feeling of anxiety when my heart rate spikes, and it can even look like anxiety to those around me. It also puts me in a drunken, confused state. That's scary, because I know what to do to fix it, but in the middle of it, I go blank. My husband knows how to recognize it and what to do. Low blood pressure and a high heart rate are my obvious signs.
I hope this post helps you know whether you should be tested, so you can manage your symptoms better.
Short on time or energy? A quick-view graphic with the key points is at the bottom of this post.
Looking for ideas to help? See my POTS - POSSIBLE SOLUTIONS post:
WHAT IS POTS?
-POTS stands for postural orthostatic tachycardia syndrome. It's a form of dysautonomia, which means the part of the nervous system that controls things like heart rate and blood pressure isn't working the way it should.
-With POTS, your heart rate jumps when you stand up. For adults, that's a rise of at least 30 beats per minute (at least 40 for ages 12 to 19) within 10 minutes of standing, without a big drop in blood pressure (Johns Hopkins, CMAJ 2022).
-Symptoms happen often when upright, get better lying down, and last at least 3 months.
-In the US, POTS has had its own diagnosis code, G90.A, since October 1, 2022, thanks to advocacy by Dysautonomia International.
COMMON SIGNS AND SYMPTOMS
-High heart rate when you go from lying down to standing
-Dizziness or lightheadedness, especially when changing positions (some people faint)
-Blurry vision
-Heart palpitations
-Blood pressure that runs low or high
-Fatigue and trouble exercising
-Brain fog and trouble concentrating
-Nausea and belly pain
-Shortness of breath (possible chest pain)
-Trouble with hot or cold temperatures, and random sweating
-Reddish or purple legs when standing
-Sleep problems
-Symptoms that sneak up after standing in one place too long
-Tremors
These are signs I and many in our groups have had. They can point to other things too, so please talk with your doctor.
LYME AND POTS
-Johns Hopkins lists Lyme disease among the conditions that can lead to POTS.
-A 2024 Johns Hopkins review (including Dr. Peter Rowe) says dysautonomia hasn't been proven yet as a complication of Lyme, but case reports and small studies point to a possible link that researchers are still studying.
-ILADS lists palpitations, chest pain, shortness of breath, lightheadedness and fainting among symptoms of spread Lyme disease.
-Dr. Tania Dempsey sees POTS symptoms in at least half of her Lyme patients. She lists Epstein-Barr, Bartonella, Borrelia (Lyme), strep and Babesia among infections that can trigger it, and finds mast cell activation (MCAS) is a big factor for many.
-In our Lyme groups, POTS comes up often too. Research on Bartonella and Babesia as POTS causes is still very limited, so that part comes mostly from doctor and patient experience.
-The good news: Dr. Dempsey describes POTS as treatable, controllable and potentially reversible with the right help.
CONDITIONS LINKED TO POTS
While researchers are still working to find the root causes of POTS, Dysautonomia International lists several conditions known to cause or be linked to it. Here's a partial list:
-Amyloidosis
-Autoimmune diseases (like autoimmune autonomic ganglionopathy, Sjogren's, lupus, sarcoidosis and antiphospholipid syndrome)
-Chiari malformation
-Deconditioning
-Delta storage pool deficiency
-Diabetes and prediabetes
-Ehlers-Danlos syndrome (a collagen disorder that can cause loose joints and stretchy veins)
-Genetic disorders
-Infections (like mono, Epstein-Barr virus, Lyme disease, Mycoplasma pneumonia and hepatitis C)
-Multiple sclerosis
-Mitochondrial diseases
-Mast cell activation disorders
-Paraneoplastic syndrome
-Toxicity (like alcoholism, chemotherapy and heavy metal poisoning)
-Trauma, pregnancy or surgery
-Vaccinations
-Vitamin deficiencies and anemia
Cleveland Clinic also lists viral illnesses like mono and COVID-19, and Johns Hopkins lists diabetes, Lyme disease and lupus among conditions linked to POTS.
THINGS THAT CAN MAKE IT WORSE
-Getting up too fast, long standing, and heat (PoTS UK).
-Alcohol and large meals high in sugar and white flour (PoTS UK).
-Menstrual periods (PoTS UK).
-In my experience and in our groups, flares often come with infections, hormone changes, mast cell flares, stress, mold and chemicals.
GETTING TESTED
-POTS is diagnosed with a 10-minute standing test or a tilt table test (Johns Hopkins).
-Learn more about testing, and take my Cardiologist Letter to your appointment. Both posts are linked below.
RELATED POSTS
POTS - Possible Solutions
POTS Testing
POTS / Dysautonomia
Cardiologist Letter
Most Common Symptoms
POTS Directory (all my POTS posts in one place)
SOURCES
Dr. Tania Dempsey - Lyme Disease and Postural Orthostatic Tachycardia Syndrome (2019, updated November 2023) - older source, still worth reading
Johns Hopkins Medicine - POTS (2026)
CMAJ - Diagnosis and Management of POTS (March 2022)
Dysautonomia International - New ICD-10 Code for POTS (June 2022)
Dysautonomia International - Conditions linked to POTS (2019) - older source, still worth reading
Frontiers in Neurology - Dysautonomia Following Lyme Disease (Johns Hopkins, February 2024)
ILADS - Lyme Disease Basics for Providers (updated 2026)
Cleveland Clinic - POTS (reviewed 2026)
PoTS UK - General Advice
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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