When Tyson Bottenus from Providence, Rhode Island, embarked on a backpacking trip across Costa Rica with his fiancé Liza in 2018, he had no idea a simple bike accident would dramatically alter his life. While cycling along the dusty roads of the Nicoya Peninsula, Tyson fell and scraped his elbow. Thinking little of it, he cleaned the wound and even visited a local hospital to have it sterilized—a decision that seemed routine at the time.
However, in the months that followed, Tyson’s health began to decline. He started suffering from severe migraines and even experienced partial facial paralysis, which led to him undergoing three brain biopsies. It was after these intense medical procedures that Tyson was diagnosed with a rare and deadly condition known as Cladophialophora bantiana, or ‘black mould’. According to the United States National Library of Medicine, Tyson is one of only 120 known cases of this condition. Tragically, he learned that apart from him, nearly all other patients have succumbed to the disease.
“I have not encountered anyone else who has this… everyone else I believe, who has this fungus, is dead unfortunately,” Tyson shared with Mail Online in 2022.
Diagnosing Tyson proved challenging due to the rarity of his condition. It wasn’t until the third brain biopsy that doctors sent samples to a laboratory in Texas, which finally identified the fungus. “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,” Tyson recounted.
While it’s suspected that the fungus entered his system during his fall in Costa Rica, there’s also the possibility that he inhaled spores from the dirt and dust while biking, or that it came from another source altogether. Despite the high mortality rate of up to 65 percent associated with this disease, Tyson continues to share his life and health updates with his followers on Instagram, showcasing his resilience and passion for life.
In a heartfelt Instagram post in 2020, Tyson shared brain scans and an update on his treatment progress. He wrote: “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, Tyson met another survivor, a man named Jerry, who had been diagnosed with the same brain fungus. Their encounter was a source of hope and solidarity. Tyson’s update about Jerry read: “He has pretty much defeated it and after two years of antifungals, it doesn’t show up on PET scans.”
As one follower commented on a recent video update, “Keep us posted! Sending tons of good energy for the best possible results.” Tyson Bottenus’s story is a stark reminder of the unpredictability of life and the incredible strength of the human spirit in the face of adversity.