Man Who Suffered From Migraines Stunned To Discover He Actually Has Condition That Only 120 People Have Ever Had

By Haider Ali in Health and Fitness On 9th July 2024

A man from Rhode Island has shared his story of getting migraines and then learning he has an uncommon illness.

With his fiancé Liza, Tyson Bottenus of Providence went on a backpacking trip throughout Costa Rica in 2018.

He had no idea that a bike fall on those sandy roads would permanently alter his course in life.

At that moment, Bottenus was at the Nicoya Peninsula when he fell from his bike and scraped his elbow.

Bottenus fell off his bike in Costa Rica Instagram/ @astralgrandad

He washed himself up and, just to be sure, went to the nearby hospital.

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He started having migraines and eventually had partial facial paralysis, which required three brain biopsies.

Later, Bottenus would receive a diagnosis of Cladophialophora bantiana, commonly known as "black mould," and be recognized as one of the 120 individuals known to have it.

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As per the United States National Library of Medicine, there are 120 documented cases of Bottenus's ailment; all except him seem to have ended in death.

It is stated that "complete surgical resection was the only way long-term survival from cerebral black mold abscesses has been reported."

The disease left him unable to walk unaided at one point Instagram/ @astralgrandad

"I have not encountered anyone else who has this... everyone else I believe, who has this fungus, is dead unfortunately," he told Mail Online in 2022.

Initially, medical professionals found it difficult to diagnose Bottenus because the ailment is so uncommon.

But samples from the third brain biopsy were transferred to a lab in Texas, which was able to diagnose his ailment.

"[Doctors] could literally see the fungus growing in my head. That was great to figure that out, but it's not great that I have fungus in my head. How do I get this fungus out? We're not supposed to have fungus in our heads," he said.

Although experts say it's extremely likely that he inhaled dirt and dust while backpacking, there's also a chance he got it up somewhere else.

Bottenus is back on his bike Instagram/ @astralgrandad

The fungus was most likely spread by his fall in Costa Rica.

Even though the condition has a 65 percent death rate, Bottenus continues to travel the world on his bicycle and share his experiences with his Instagram followers, along with updates on his health.

In 2020, he updated his followers on his progress by posting two brain scans on Instagram and writing: 

"There’s still some fungus hiding out in the fluid filled ventricles of my brain that are proving to be stubborn places to kill and there’s still maybe 2-3 years of treatment ahead of me (this is on the conservative side to prevent the fungus from ever growing back) but by and large 2019 will be known as the year where I escaped death and declared nuclear war on an existential threat to my life that I never in my wildest dreams could have ever imagined I’d get from going on a stupid bike tour in a tropical country."

Bottenus shared a health update with followers in 2020 Instagram/ @astralgrandad

"You live, you learn, you get a brain fungus, you kill the brain fungus and then you hop on your bike again and hope you don’t get another one. I guess that’s the takeaway message of the decade for me."

Even more, in 2022, Bottenus met Jerry, a man whose brain had been identified with Cladophialophora bantiana.

Bottenus' caption reads: "He has pretty much defeated it and after two years of antifungals, it doesn’t show up on PET scans."

In a more recent video, one of his fans made the following comment: "Keep us posted! Sending tons of good energy for the best possible results."