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Story 29

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

I contracted lyme from a tick in Chester County,  PA in 2001. I went misdiagnosed for 9 yrs. It took till 2010 to convince someone to do the bloodwork. And it obviously came back positive.

I’ve taken a lifetime worth of oral antibiotics for 5+ years and had 3 separate picc lines for iv antibiotic treatments. Also there’s the numerous psych and anxiety meds, nerve meds, pain meds, vitamins and natural herbs, foods not to eat and limited foods you can eat. You feel like you’re dying. Herxing is the worst! Epson salt baths, monthly Dr appointments or daily if you have a picc line for 30-60 days not counting weekends, missing out on important occasions like holidays, weddings, births, deaths etc. Then you have the headaches, light sensitivity, pain, random joints hurting, swelling like you couldn’t imagine, depression and anxiety pushing down on top of you every second of every day. This doesn’t include a full list of symptoms. It’s enough to drive you mad or wanting to kill yourself. I’ve been in the psych ward 5 times. Countless ER visits, years of meds that did nothing because my primary Dr couldn’t figure it out and sent me to an infectious disease Dr who didn’t believe in Lyme even though he was holding my positive test results in his hands!

I went from working full time job at a very well paying job, snowboarding and always active to being bed ridden. My late boyfriend went missing for 4 months after he DIED from a seizure caused by Lyme only to be found yards from the house. He suffered for over 15 years, had 13 picc lines, was having grand mal seizures weekly and in his final 2 months he would have several daily.

We need our government and insurance companies to get more involved before this turns into a larger worldwide epidemic. It’s already found throughout the world but if left untreated or left the way things are now for Lyme patients, the entire human race is at risk.

What inspires you?

Nature & Art…I haven’t been able to do either for many years now because of Lyme.

Never Give Up!

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One Comment

  1. Read your story & was horrified to learn of your boyfriends passing !! I am so sorry for your loss. As you know giving up is NOT an option for us who still have voices & the spirit to FIGHT!!!
    Enjoy the few moments when you feel well enough to get out. I am always so grateful for those few hours! Our lives are forever changed but they are still worth living my friend.
    Be well~

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