Lyme Disease and POTS

Have you heard of POTS?

Between my freshman and sophomore years of college, I was bitten by a tick while working at a summer camp in the woods of Maine. As I’ve described in many of my blog posts, it took eight years for me to be accurately diagnosed, and during that time I suffered from a range of physical and neurological symptoms. During the fall semester of my sophomore year, I had flu-like symptoms as well as symptoms of what the college nurses thought were panic attacks.

Looking back now, I wonder if my heart palpitations, lightheadedness, and dizziness were in fact signs POTS, or Postural orthostatic tachycardia syndrome. At the time, POTS was little if at all understood, but now researchers and physicians are seeing POTS not just in Lyme disease patients but also in conditions like long COVID and ME/CFS.

POTS occurs when moving from lying to standing causes an increase in heart rate by at least 30 beats per minute for adults and 40 beats per minute for children. In addition to this abnormal increase in heart rate, the Heart Rhythm Society defines POTS as a clinical syndrome characterized by symptoms of lightheadedness, blurring of vision, palpitations, intolerance to exercise, and fatigue, as well as the absence of orthostatic hypotension[i] (meaning the blood pressure does not drop when the heart rate rises). I experienced all of these symptoms that fall in college. Had POTS been more well-known, its symptoms could have pointed puzzled medical practitioners in the direction of tick-borne disease. That was 1997; a recent study shows that the incidence of POTS has increased four-fold since 2000.[ii]

Another Lyme-related condition, Lyme carditis

Heart-related symptoms such as racing heartbeat can also be a sign of another condition known as Lyme carditis, when the Lyme bacteria goes to the heart. This can cause atrioventricular block, often referred to as “heart block,” which is an electrical disconnect between the upper and lower chambers of the heart, causing them to beat at different rhythms. Lyme carditis can also manifest as costochondritis (inflammation of the cartilage that connects the ribs to the breastbone), tachycardia (racing heart rate) and bradycardia (slow heart rate). It can also cause myopericarditis (inflammation of the heart muscle and lining), which patients may feel as chest pain or shortness of breath.

Though Lyme carditis is rare, according to a 2008 study, 4% to 10% of all patients with Lyme borreliosis. Whenever the clinical suspicion of Lyme carditis arises, an ECG is mandatory to detect or exclude an atrioventricular conduction block.

If you have already been diagnosed with Lyme disease, it’s important that your doctor check specifically for Lyme carditis, and also evaluate you for POTS. If you are experiencing symptoms of either Lyme carditis or POTS, see a Lyme Literate Medical Doctor (LLMD) to find out if tick-borne disease may be the cause. I only wish I had seen a LLMD sooner; I might have avoided years of suffering.

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[i] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7255540/

[ii]  Epidemiology of postural tachycardia syndrome. [Apr;2020 ];AbdelRazek M, Low P, Rocca W, Singer W. https://n.neurology.org/content/92/15_Supplement/S18.005 Neurology. 2019 92:0.

The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.