Featured Image Credit: Instagram@astralgrandad
Topics: Health, World News, Travel
Poppy Bilderbeck
A Rhode Island man has opened up about discovering that he suffers from a rare condition after experiencing migraines.
In 2018, Tyson Bottenus of Providence backpacked across Costa Rica with his fiancé Liza.
Little did he know that a fall off a bike while cycling along some dusty roads would see his life change forever.
Bottenus was in Nicoya Peninsula at the time and tumbled to the ground from his bike, scraping his elbow in the process.
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He cleaned himself up and just to be on the safe side, took a trip to the local hospital, where his wound was sterilized and that was that - or so he thought.
However, over the forthcoming months, Bottenus' health began to deteriorate. He began to experience migraines and also ended up experiencing partial facial paralysis, which led to him undergoing three brain biopsies.
Bottenus would later be diagnosed with - and become known as one of the 120 people known to have - Cladophialophora bantiana, also known as 'black mould'.
According to United States National Library of Medicine, there's been 120 known cases of Bottenus's condition – and apart from him, everyone appears to have died as a result, and 'long-term survival from cerebral black mould abscesses has been reported only when complete surgical resection was possible'.
"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.
Due to the condition being so rare, doctors struggled to give Bottenus a diagnosis at first. However, after the third brain biopsy, samples were sent to a lab in Texas that managed to identify his condition.
"[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.
While it's highly speculated that the fungus came from his fall in Costa Rica, doctors said he could have inhaled dirt and dust while backpacking, and there's also the chance he picked it up somewhere else.
The mortality rate for the disease stands at up to 65 percent, however, Bottenus is still adventuring the world and cycling away, sharing his travels - alongside various health updates with his followers on Instagram.
In a post to Instagram in 2020, he shared two scans of his brain, updating followers on his progress, 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.
"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."
In 2022, Bottenus even met another man called Jerry who'd been diagnosed with a Cladophialophora bantiana in his brain.
Bottenus' caption reads: "He has pretty much defeated it and after two years of antifungals, it doesn’t show up on PET scans."
As one of his followers commented on a more recent video: "Keep us posted! Sending tons of good energy for the best possible results."