My Lyme Story: Isabella Pignataro

“Healthy people don’t get sick”

That is a statement I heard many times in my life, so I chose to naively believe it. I grew up under the impression, like many others, that chronic illness happens to those who make poor life decisions such as smoking, drinking, and eating unhealthy food. Growing up playing a sport and living with parents who always made sure we ate healthy kept this as the one thing I was never afraid of. Imagine my own surprise when I was diagnosed with Lyme disease, Chronic Migraine Disorder, and PCOS all between middle school and college.

Isabella Pignataro
Isabella Pignataro

The story started with a simple sinus infection. Remember getting sick as a child? On one hand you felt crappy, but you could always find joy in the days spent laying on the couch watching your favorite tv shows. This particular cold started off completely normal. The usual routine of going to the doctor, getting some antibiotics, and resting at home began. My nonna would make her classic vegetable minestrone and drop off pots of it, so large it could feed an army of ill people. After a week or so, I was feeling back to my usual sixth grade self. Until I woke up the
next day, with a sensation of air filling my legs.

The doctors believed it was an allergy to an antibiotic that I took for the sinus infection. What they weren’t expecting was for the feeling of air to turn into severe joint pain in my legs, wrists, elbows, back, and other joints. I went from being an active child, to barely being able to get out of bed every day. I had to wear different ankle, wrist, and knee braces as the Lyme would mimic different injuries with its severity of pain. I went to see multiple neurologists, rheumatologists, and other specialists who all told me I was completely fine.

Technically, all my tests were coming back completely healthy and normal, yet I was not okay physically or mentally after dealing with all of this pain and discomfort. I was also beginning to develop anxiety at doctors from the constant disbelief and dismissal.

Finally, my mom was able to find a doctor in Chicago who was an integrative specialist in Lyme disease. She was the biggest blessing in my life because she was the first doctor to validate how I was feeling and look deeper than the obvious issues. She determined that I had Lyme disease and was able to start me on some treatments.

After the pain started to subside, the Lyme attacked my GI system. It started with stomach pain here and there. The doctors thought I was becoming intolerant to gluten and dairy, but it was more than that. I eventually was in so much pain, that I stopped eating solid food all together and was just drinking soup. I had to be put on a liquid diet of medical shakes until they figured out what was going on. It was determined that I had developed SIBO which is small intestinal bacterial overgrowth, generally of E.COli bacteria. Once I went through the treatment of this, the Lyme moved to its next target which was my neurological system.

As I continued through the initial stages of Lyme disease these were more symptoms and conditions I developed: heart palpitations, brain fog, lightheadedness, stomach pain, second round of SIBO, nausea frequent colds/sickness, intense joint pain, hair loss and thyroid problems. 

I will never forget the appointment where I received my diagnosis because my life changed forever. Although I have made so much progress in my healing journey, that does not change everything I have endured and could potentially endure in the future. Living with a chronic illness means sacrificing some of the normalcy of your childhood or adulthood or both depending on when the diagnosis occurs. Even at that point, I couldn’t fully wrap my head around what my life would be like now.

They call it an invisible illness for a reason and that is because it can single handedly attack each system in your body, yet you can look perfectly fine on the outside. You might even be accused of faking symptoms or over exaggerating because people genuinely have a hard time believing that you are going through something without physical proof, and I sometimes don’t blame them.

Fast forward to 2024, I also have been diagnosed with Chronic Migraine disorder and PCOS which may or may not be connected to Lyme disease and have had to endure similar struggles with getting a diagnosis.

The goal of sharing my story is to convince you to never stop fighting for yourself in the medical world. There are doctors out there who will take the time to hear your story and help you, even if it isn’t in your expertise, they are just harder to find. I completely understand the frustration that comes with this and wanting to give up. However, your health is not worth giving up on.