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Story 148

© Illustration by Life in Lyme Light.

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

My name is Tiana, I am 25 years old and I live in Belgium (Europe).
In the late summer of 2019 I became very ill. I kept losing weight without knowing why.
I had severe muscle weakness and was always super tired, I slept so much but the tiredness didn’t go away.

I went to several doctors and hospitals and nobody knew what was going on.
They misdiagnosed me with many different things like IBD, Crohn’s disease, Fibromyalgia, Chronic Fatigue Syndrome, MS, ME, even cancer, mental health issues and so on.
They even said I made it all up and it was in my head.

I knew something was very wrong with me, it was scary and frustrating not knowing what to do or where to go.
Years have passed and my health kept getting worse, until I had to quit my job and slept for more than 16 hours a day. Some periods I didn’t get out of bed at all.
Every single part of my body is affected—from my muscles, joints, stomach, to my heart and even my brain. I can’t function anymore.

In 2020 I tested positive several times for Lyme disease, but not a single doctor took it seriously and they dismissed my symptoms.
I vaguely remembered having a weird rash on my forearm, I scrolled through my pictures on my phone and came across the bullseye rash, dated May 2019.
I did see my family doctor for this at the time, but he said it was only an allergic reaction to a mosquito bite. Little did we know… I didn’t recall seeing a tick.
I saw over 20 doctors, in 5 different hospitals, but nobody believed in Lyme disease, even with my picture of the rash and my positive test results. I was desperate as I kept getting sicker and sicker. I felt really lonely in this experience. Even my family doubted my symptoms; if so many doctors say nothing is wrong and your labs are normal, then why should something be wrong? Aren’t you just stressed? Maybe you should see a Psychiatrist? I did not know what to do, what to say, I was so sad that nobody believed me, or took me seriously.

It was only in December 2021 that I found my way to an ILADS specialist. He ran multiple tests and in March 2022 I was finally diagnosed with Chronic Lyme disease, as well as Epstein Barr virus, Babesia and Tularemia.
I finally know that it’s not in my head and last week I started my treatment. The doctor is hopeful, in terms of Lyme disease, 3 years is ‘quick’ he said, and it is possible that I can get my health back the way I did before I got bitten. So I cross my fingers and hope for the best!

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