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Story 126

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

It was 3 or 4 days after I found the tick. I’m thinking it was probably attached to my ankle for 3 days prior to me finding it. I had sat in the grass early one morning and then walked in the woods kicking around the leaf litter and kneeling down into the green mossy forest floor right after that and found the tick 3 days later when showering. We were camping in Thompkin’s county in a rural area of New York State. I am from New Mexico so had absolutely no idea how bad the ticks and Lyme disease risk were at the time. I had ankle socks and didn’t do a tick check. I didn’t shower for 3 days because we were camping. So, by the time I found it I already had the rash and it was after I removed the tick that I started getting other symptoms.

Bullseye rash with a wriggling tick swollen with my blood in its belly, high fever with body aches at the beginning and then the bad stuff hit. Had positive WB after a tick bite. Still having symptoms and MCAS with a negative WB after oral Doxy capsules. I was told it’s Post Lyme Disease Syndrome by my GP. Some days I feel like it’s worse than when they said it was positive. My joint pain and swelling is out of control. My Homeopathic doctor says it’s because the Lyme likes to hide after treatment with antibiotics and isn’t picked up by the WB, but is most likely still there. Been battling every day since September 2017.

Lyme has changed my life completely, changed me completely. Even the smallest things that you wouldn’t think about get shaken up and changes made because of Lyme.

Like music for example, someone who knew me before Lyme would say, ‘yeah Sharon the metal head’ when after having Lyme—I cannot listen to anything that makes loud noise or has a heavy bass. I ended up changing my music style to folk music like singer songwriter type music with only lyrics and acoustic guitar. 

Then, there were food changes that had to be made almost immediately after I got sick, allergies to clothing and make up lotions and perfumes. Physical changes, I lost weight, had to start wearing glasses, the rashes from MCAS… it takes a toll in every aspect of life.

What inspires you?

I spend time in my garden (nothing too difficult, but I sit with the plants, harvest herbs and connect to the earth) and I make quilts. It’s therapeutic and meditative. My mantra is Look to Mother Earth for healing. Nature is the most healing place with all the medicine readily at hand. It’s ironic that the place I was bit by a tick (in nature) would be where I find the most healing from Lyme (herbal medicines and gardening).

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