After thinking that this man was suffering from a brain tumor, doctors discovered that it was mold. After 10 brain surgeries and many other difficult tests, the mold is still there, but there’s also good news.
It was only after the third biopsy that doctors were able to identify the mysterious brain disease that plagued Tyson Bottenus. Luckily, it turned out it wasn’t a brain tumor as they had thought, but the findings were really gross - it was mold.
Bottenus, a ship captain from Rhode Island in his early 30s, was a healthy man by every measure, but black mold was growing on his brain. More precisely, he had a rare tropical fungus known as Cladophialophora bantiana which is so rare that only about 120 cases have been documented since it was discovered in 1911, of which 70% were fatal.
In the three years since his diagnosis, Bottenus told BuzzFeed he’s fought this fungal infection with ten brain surgeries, five lumbar punctures and two sets of tubes implanted to connect his brain to his abdomen. He also had a stroke, which forced him to have to learn to walk and talk again.
The doctors' best guess was that Bottenus caught the infection during a vacation in Costa Rica in 2018 with his partner Liza after his elbow was cut open when he fell off his bike onto a gravel road. The initial symptoms of debilitating headaches and facial paralysis began months later when he was already home.
Mold removal surgery was ruled out because doctors thought it was too dangerous, so the mold was treated with antifungal drugs and steroids. But his doctors learned recently that the antifungal drugs hadn’t penetrated the blood-brain barrier and were therefore ineffective.
He’s now receiving a new type of treatment, and the good news is that the condition is not fatal. The fact that he has survived this long improves his chances of survival. Bottenus said that while he doesn’t expect to be cured entirely, he does expect to live a long and happy life.