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Story 119

How has Lyme Disease affected your life? What inspires you?

I don’t remember being bitten nor do I remember seeing a bullseye rash, the staple for your textbook Lyme case, although a majority of cases never get the rash anyway making diagnosis complicated. I’ve scoured pictures looking for any evidence. Was it from the beach or a botanical garden in Sicily? Did it happen seven years ago and resurface with extreme physical and emotional trauma, as it does? I honestly wouldn’t have known either way, I didn’t grow up in an area where ticks were top of mind. I didn’t get checked for them as a kid and as far as I know I’ve never seen one.

I remember being on the phone with a holistic healer who told me my symptoms sounded like chronic Lyme. I immediately googled it and became lightheaded as panic washed over me. It all made so much sense and at the same time no sense at all. When I finally was tested for the standard blood test at a Lyme clinic, the doctors made me feel like I was insane. They refused to check for co-infections nor did they believe in chronic Lyme and no rash? I must be kidding them — they tested me, sent me a letter that said negative and sent me on my way. I was embarrassed so I closed that chapter and continued searching for other answers. 

It wasn’t until finding a LLMD that it all finally sunk in. The clinical diagnosis was made within one appointment. So simple that I almost didn’t believe it. And then the layers began to peel back – Lyme/co-infections, mold toxicity, MCAS. The unreliability of testing is unbelievably dangerous and frustrating, the gaslighting from doctors is damaging — not to mention the emotional and physical toll of being sick without understanding how or why.

I’m here to share my journey however vulnerable or raw that gets. I’m here to connect with others who are chronically ill and are struggling or who have struggled to offer support and information. That’s the power we have — to spread awareness and help each other along the way. <3

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