Julia’s story of living with Lyme’s carditis and POTs

I’m extremely ill. Prior to 2010, I was a ballroom dancer and extremely active for 53. In june of 2010, I suddenly lost balance and coordination along with other symptoms. I went to the Cleveland clinic and all over trying to figure out what was happening.

In 2011, I was diagnosed with pots. I kept asking why but no one was interested. I became home bound a lot and I needed help. I had horrible dizziness like rocking on a boat. I had muscle and joint pain with fatigue. I saw so many Drs.

In late 2013, I was diagnosed with Lyme. I thought an infectious disease dr would help but no one would. I tried different treatments and went to a Lyme clinic. Insurance didn’t cover my costs. I became somewhat functional but pots and balance issues limited me. I had to be careful because of falling.

In 2016, I got up from a chair and fell backwards getting a concussion. Pots and everything worsened. I became bed bound often and home bound. I was/am sooo dizzy. I began getting extremely weak and had to use a wheelchair. Talking is difficult. Lyme retesting showed I still have it. In January this year, I lost my beloved son. The grief and stress has created chaos in me. Lyme gave me pots. The dizziness and loss of balance has taken my life. Pots symptoms are off the chart. I don’t know what to do. Thank you for recognizing Lyme. Sincerely

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