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Story 89

© Illustration by Life in Lyme Light.
How has Lyme Disease affected your life? What inspires you?

January 2016 I was bit by something (which I now believe was a tick). I never got it checked out because it was winter and I hadn’t spent much time outside so I assumed it was a spider bite or something like that. A few months later I started having flu like symptoms and those symptoms never went away. Some days were worse than others, but overall my symptoms progressed. I had been tested for Lyme but it was negative, so I was referred to a rheumatologist and jumped around to a few different doctors after being told it was a mental health issue, food allergy, etc. I decide that if I wanted to get better I needed to do research and be an advocate for myself.

April 13th 2018, the doctor called with my diagnosis: Lyme, Babesia, Bartonella, Q-fever, Candida, Mycoplasma Pneumoniae & Epstein Barr. The doctor’s appointment and tests needed to get this information was almost $1500 to POSSIBLY get a formal Lyme diagnosis (and I do have insurance). I had multiple doctors believe I have Lyme and co-infections, but of course the test was always negative. To put into perspective why I thought the risk is worth it, my previous diagnosis was Chronic Reactivating Epstein Barr, and 2 years & 6 doctors later (11 including ER visits) no one had helped me. This is something that occurs with many people with Lyme as the test commonly used is not accurate and many doctors believe that Lyme cannot be chronic.

In those two years I had to leave a career that I absolutely loved. I lost friends and became distanced from family as my symptoms took over my life. I struggled financially and physically because my insurance wouldn’t give me the help I needed.

This is why awareness and advocating is so important. Not only do I share my story to help those who are looking to live a more “natural” lifestyle, but to raise awareness about the dangers of Lyme and the trials and tribulations of those who are diagnosed late stage. If I had this information when I was bit, I would probably be in remission now. If I am able to help even one person recognize that they may have been bit by a tick it could be life changing!

Everyone kept saying they’re “sorry” to hear about my results, but I was RELIEVED. The moral of my story is to never give up. You know your body more than anyone and the best way to get answers is to be an advocate for yourself. Always speak up and be honest about your symptoms despite negative feedback. It may have taken me two years to get here, but now I’m on the road to remission.

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