My Chronic Lyme Disease & MCAS Journey

2019: The Beginning of Everything

When I think back to the first time Lyme disease entered my life, I remember the confusion more than anything else. It started with fainting in a restaurant where we did go with some friends to have dinner and watch a football match. I suddenly started feeling unwell and wanted to go outside to get some fresh air. But since it was quite a large restaurant, it was a bit of a walk. The restroom was just around the corner, and I thought i’d splash some water on my face. However, once I got to the restroom, I quickly fainted. After rushing to the ER, we were sent home shortly after my vitals were checked.

That was the clearest starting point of my journey. Although I had experienced other symptoms before, which I can now better understand in hindsight. I would become unwell and weak very soon after eating, often having to lie down afterwards. And this was at just 23 years old…

When Life Started Slipping Away

Coming back to my first fainting episode: ever since that incident, I have been living with dizziness – a constant, almost surreal lightheadedness that followed me from morning to night. At first, i thought it would pass. Maybe it was stress. Maybe fatigue. But days became weeks, and weeks became months, and my body began sending stronger and more alarming signals. After some time, I reached a point where I couldn’t even turn in bed without feeling dizzy.

Doctors told me it might be a vestibular organ infection… I Just had to be patient for 6 weeks before it most likely would heal by itself. I tried to push through. During my next visit, the doctor said it could sometimes take up to 3 months and did not offer me any further help. Unfortunately, it didn’t work out like that. Eventually, i found myself unable to work, unable to socialize, and even unable to perform basic daily tasks without feeling “sick”. My life as i knew it collapsed.

The Desperate Search: Chasing Hope in the Dark

Rock Bottom: The Ozone Disaster

My world became very small. I ended up being bedridden, unable to eat more than a few safe foods, and completely dependent on care. (Thanks to my parents who took care of me, they even slept on a matress on the ground in my room because at some point i was totally not functioning and did help me with the smallest tasks).

My body was hypersensitive to almost everything – sounds, smells, foods, even water sometimes. On top of Lyme disease, i was also dealing with MCAS (Mast Cell Activation Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome), which made even the simplest movements and activities challenging.

I had been struggling for some time, but this was the lowest pont – the point where daily survival took all my energy. I could barely stand without feeling dizzy

At that time i was bedridden, i spend all day in bed. Some days i was being able to get out of bed for a mere 5-15 minutes, sometimes i could manage to get spend 30 minutes out of bed. This time i tried to join my family in the living room and sit with them. But at my worst, i couldn’t even sit for 5 seconds before all went dark (POTS).

I lost a lot of weight, i went from 78 kilograms to 49 kilograms. I was highly reactive to everything (MCAS): weather changes, perfume, changing positions, supplements, food… I needed full-time care, could hardly get out of bed and felt like my world had shrunk to four walls.

The Long Road Back: Small Steps Toward Light

2025: A Fragile Dawn

I am not cured, but I am living a different life than I was a few years ago. The severe crashes are rare. I can sit on the computer for an hour or two a day. I can use my phone most of the time without any phsyical problems. I almost always can eat dinner with my parents at the table, and I don’t always have to lied down after every meal.

While I’m still mostly at home, and things like driving and working are not yet possible, I occasionally can get outside easier. I recently went to a McDrive with a friend for the first time in ages. I can walk with friends for 30 or 40 minutes, what is amazing when compared to a couple years ago.

My journey is a testament to the fact that healing from chronic illness is not linear. It’s a slow, two-steps-forward, one-step-back climb. Sometimes it is even one-step-forward, two-steps-back climb. It requires immense patience, and an unwavering commitment to finding what works for your body, even when others (and sometimes you yourself) don’t understand.

My journey is not over, but I’m no longer on the floor. And that, in itself, is a victor.

Why I’m Sharing My Story

Chronic ilness can make you feel invisible – especially when symptoms are complex and not always understood by doctors or those around you. I share my journey because I know how isolating it feels to search for hope in the middle of overwhelming symptoms. While everyone’s path is unique, I hope that parts of my story might inspire others to explore new options, listen to their bodies, and never give up looking for what helps them heal.

This is still an ongoing journey. I’m not “done” with Lyme or MCAS, but I’m no longer trapped in the same dark place I was. And that progress – slow and imperfect – means everything.