The Dark Lesion on His Brain? It Wasn't Cancer. It Was Mold

Tyson Bottenus writes in BuzzFeed of his fight to defeat an extremely rare infection
By John Johnson,  Newser Staff
Posted Jan 29, 2022 11:00 AM CST
His Brain Ailment Wasn't Cancer, It Was Mold
Stock image of mold. For Tyson Bottenus, the mold is actually on his brain.   (Getty/Prasith_To)

It wasn't until the third biopsy that doctors managed to identify the mysterious brain ailment plaguing Tyson Bottenus. Turns out it wasn't a tumor—it was mold. Bottenus, a Rhode Island ship captain in his early 30s who had been the model of health, had black mold growing on his brain, he writes in a harrowing first-person piece for BuzzFeed. More specifically, Bottenus had a rare tropical fungus known as Cladophialophora bantiana. So rare that only about 120 cases have been documented since it was discovered in 1911, and most of the cases (70%) have been fatal. In the three years or so since his diagnosis, Bottenus has "fought this fungal infection with ten brain surgeries, five spinal taps, and two sets of cyborg-like tubes implanted to connect my brain’s ventricles to my abdomen." He's also had a stroke, forcing him to learn to walk and talk all over again.

The best guess is that Bottenus picked up the infection during a 2018 vacation in Costa Rica with his partner Liza, probably when he badly scraped up his elbow in a fall from his bike on a gravel road. The first symptoms—debilitating headaches and facial palsy—began months later back home. Surgery to remove the mold has been ruled out as too risky, and doctors have been treating Bottenus with anti-fungals and steroids. They recently learned that the antifungals have not been penetrating the blood-brain barrier and thus have been ineffective. A new regimen is underway, and the good news is that if the infection were going to kill Bottenus, it probably already would have. "While I don’t have any expectations to be 'cured' anytime soon, I do expect to live for a long time," writes Bottenus, who had to give up his job as a ship captain. (Read the full story.)

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