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Story 122

© Illustration by Life in Lyme Light.

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

I am 58 years old. My name is MUS. I live in the Netherlands. I have suffered from strange pain since I was a child. In my early twenties I had paralysis in my legs. They told me I was depressed again… but I felt there was more… PLEASE ALWAYS LISTEN TO YOUR BODY. 

In 2010 march I had a kind of stroke. Bell’s palsy, I have suffered for more than 5 years from head cluster ache. All my things looked like ms (multiple sclerosis). But they couldn’t find anything. The only thing the doctors found out was that I was depressed. I was not. 

In the meantime I was losing my husband, friends and family. I felt very alone. I had a positive lyme test in 2015. But still the doctors did not believe me. The CEO of the laboratory was a good one. She arranged an internist who gave me an infusion of 4 weeks… things started to change. I began to feel better. But after a few months everything started to come back. 

I left my grown up daughters to move to Spain. Alone. I found a neurologist over there who helped me again… the doctors in Holland said it was illegal to give me antibiotics again. But the Spanish specialist said, you are a sick woman. 

It helped again for more than 18 months. Last year I moved back to Holland to be near my daughters. The pain is back, I am desperate, they still tell me I am depressed.

Yesterday was a black day… I could not see any light. I feel hopeless, misunderstood and very alone.

But there is a light at the end of the tunnel. I will try to get a new appointment in Spain because he said I could come back when the pain returns.

So that’s my new little bright spot, it will take some time.

Always believe in yourself️.

With love, MUS

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