A graduate student from the University of Rhode Island discovered that frequent, intense headaches and paralysis in his facial muscles were being caused by black mold in his brain.
Tyson Bottenus underwent three brain biopsies, at least two spinal taps, numerous MRIs, CT scans, and blood tests before doctors discovered the fungus, officially named Cladophialophora bantiana, causing abscessesin his brain.
The graduate student told The Providence Journal: “The doctors were surprised because the fungus, Cladophialophora bantiana, is so rare. The first two brain biopsies were unsuccessful but the third one, instead of finding the brain cancer they suspected, found black mold growing on my brain. My neurosurgeon said she could literally see it.”
Bottenus described the abscesses as they appeared on the MRI as “two little dark circles of doom.”
Despite advances in surgical capabilities and treatment with antifungals, Cladophialophora bantiana infections in the brain carry a high mortality rate that claims the lives of 70 percent of sufferers.
Symptoms of Cladophialophora bantiana-caused brain abscesses, first isolated in 1911, also include damage to a sufferer’s visual field and memory loss. Cladophialophora bantiana is usually found in soil and dead and living plant material and exposure to this matter could be behind human infections.
While Bottenus still doesn’t know how he contracted the fungus, he told The Providence Journal that he believes he picked it up during a cycling trip to Costa Rica in January 2018.
During the vacation, the roads were cloaked in dust meaning Bottenus and his partner, Liza Bukin, had to cover their mouths and noses every time a car passed them. It was during the trip that the graduate student fell and scraped his elbow.
Doctors treating Bottenus suggest he either picked up the infection from breathing dust in Costa Rica or from this elbow wound, with the fungus entering his body, traveling through his bloodstream and eventually to his brain.
A paper published in The Surgery Journal in 2017 seems to support the suspicions of Bottenus’ doctors, stating that Cladophialophora bantiana infects humans via inhalation or via puncture wounds.
Because the abscesses in Bottenus’ brain were too close to critical regions neurosurgeons decided that surgery was not an option. This meant the only treatment available to Bottenus was antifungals. Doctors also prescribed him steroids to control the swelling in his brain.
Bottenus wrote in Buzzfeedthat in 2020 he chose to come off steroids as he worried they would leave him immunocompromised and vulnerable to COVID. Just a week later, the graduate student suffered a series of strokes that damaged his vision, handwriting, and his ability to speak.
He wrote: “The doctors told me later that the pressure inside my skull was 15 times the amount of pressure that the brain normally experiences. They told Liza that if I survived, I’d be completely blind, but when she got a text from me a few days later, she was filled with promise.”
Bottenus’ vision was later restored by surgery though he is still unable to drive or sail. This means he cannot return to his job as captain of an 80-foot schooner in Newport, which the pain his condition caused forced him to leave. In 2020 Bottenus enrolled as a graduate student in the University of Rhode Island’s marine-affairs program.
He wrote: “It has been just short of four years now living with this infection, and while I don’t have any expectations to be ‘cured’ anytime soon, I do expect to live for a long time.
He told The Providence Journal: “Before all of this happened, I was very certain of a good deal — but this chapter has taught me to really embrace the uncertainty of life.
“No one expects to find a find a fungus growing in their brain, but when you do, it’s important to take stock of your life and figure out who can help you solve the problem.”
(Left) a stock image of an MRI and (Right) a stock image of fungal mold being grown in a lab. Tyson Bottenus believes that he was infected with a rare fungus infection that made its way through his blood to his brain while cycling in Costa Rica.
Sinhyu/ Nur Ceren Demir/GETTY