My Journey from Lyme to POTS

The story of my health is a long one, which is unfortunate, considering I’m only 17. I was a healthy child, except for having severe Lyme disease at one year old, and I call it severe because I couldn’t bear weight. I also am prone to migraine headaches, which run in the family.

However, when I was around 13, weird symptoms arose. I used to be a competitive swimmer, but suddenly I began to dread going to practices and meets because of how sick and awful I would feel in the pool. My heart would race, I’d feel like vomiting, and I felt exhausted afterwards. Once, during a race, my mom watched me zig zag in the lane. I was so dizzy and disoriented. My heart was beating so fast. We thought it was a panic attack - where a person becomes so anxious and fearful that their body produces physical symptoms like rapid heartbeat, headache, nausea, etc. 

Then, in 9th grade, I began to feel ‘weird in the head’. I lost all motivation, had no ability to concentrate, had short term memory loss, and was completely exhausted all the time. I didn’t feel like myself. I was tested for Lyme disease, and I was incredibly positive. It was unclear whether this was from the tick bite when I was one or something more recent. I was treated for Lyme disease with heavy antibiotics for 6 months, and it seemed like things were looking up. For the last couple years, I’ve seen so many doctors and my medications have changed a thousand times.  It was hard. I continued my fight with Lyme through freshman and sophomore year of high school, along with feelings of depression, isolation, confusion, and frustration. 

In December of 2016, I began to experience new symptoms again. I would feel very dizzy, more than ‘normal’. I got more headaches, was tired, and despite my BEST efforts, I couldn’t stay focused and organized at school. I even felt close to fainting sometimes. My mom took me to a 30 minute aerobics style class (where the average age in the room was probably 60) and afterwards I vomited and had to lie down. So, in a fit of frustration, I began my own investigation. 

Using a home blood pressure cuff, I tested my blood pressure and heart rate laying down, sitting, and standing, and was surprised by the clear spike in beats per minute by standing. I remembered a girl from my gym class telling me she had postural orthostatic tachycardia syndrome (POTS), where her blood pressure is off and heart rate changes when standing. I researched the condition and was completely convinced this was what was wrong. I saw a cardiologist, who confirmed the diagnosis only two short months ago.

Living with an invisible illness has proven to be difficult, especially when it was invisible even to me. But with determination, support, and hopefulness, I really do think that it is possible to stand up to POTS, or to stand up to anything.