Man who has a toxic black fungus growing on his brain – among 120 diagnosed with rare condition
The man with toxic black fungus on his BRAIN: Backpacker who scraped his elbow in Costa Rica suffered crippling migraines, facial paralysis and a stroke before being diagnosed with inoperable disease so rare only 120 have had it
Tyson Bottenus, 35, picked up a rare fungus while backpacking with his fiancé in Costa Rica in January 2018When the couple returned home from the trip, he began suffering from partial facial paralysis and massive migraines that over-the-counter pills couldn’t touch His case baffled doctors, who after eight months of tests were able to determine that , he had Cladophialophora bantiana, also known as ‘black mold’ Since 1911, there have been just 120 cases of culture-proven cases of Bottenus’ condition, according to the United States National Library of Medicine
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A 35-year-old Rhode Island man believes he is the only person alive suffering from a rare, toxic black fungus that’s been sitting on his brain for the past four years.
Tyson Bottenus, of Providence, said he picked up the tropical fungus in January 2018 while embarking on a backpacking trip in Costa Rica to celebrate his recent engagement to fiancé Liza.
Their otherwise-pleasant adventure in the Nicoya Peninsula was hampered when Bottenus took a spill and scraped his elbow while cycling along the region’s dusty roads. He cleaned the wound and later visited a local hospital, where it was again sterilized.
After returning home to months of unbearable migraines, partial facial paralysis and three brain biopsies, he learned the souvenir he picked up in Central America was called Cladophialophora bantiana, also known as ‘black mold’ because of its dark appearance.
Since 1911, there have been just 120 cases of culture-proven cases of Bottenus’ condition recorded, according to the United States National Library of Medicine.
‘I have not encountered anyone else who has this,’ Bottenus told DailyMail.com on Thursday. ‘Everyone else I believe, who has this fungus, is dead unfortunately.’
Tyson Bottenus, 35, became ill after embarking on a backpack tour with his fiancé. Doctors ultimately discovered a growth on his brain, but struggled to identify it. He’s pictured at Massachusetts General Hospital, where he spent months being treated
Bottenus is pictured shortly after doctors diagnosed his brain growth. He said most of the procedures have been covered by medical insurance. Without insurance he said he’d likely be millions of dollars in debt
Shortly after they returned to Rhode Island following their backpacking excursion, Bottenus said part of his face became paralyzed and the migraines became so unbearable that he began ‘abusing Advil’ and taking hot showers to temper the pain.
Doctors initially struggled to diagnosis the unusual brain growth they detected until the third brain biopsy, where samples were sent to a Texas lab that identified his condition.
‘[Doctors] could literally see the fungus growing in my head,’ Bottenus told DailyMail.com Thursday. ‘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.’
It’s not certain where he picked up the fungus, although it’s strongly believed that he either caught it from his elbow injury or by inhaling dust and dirt while cycling in the Central American country.
Armed with a diagnosis, the medical community’s next challenge was to treat the rare growth, which has a mortality rate of up to 65 per cent.
Bottenus has endured 10 brain surgeries since 2018 to relieve the pressure caused by a buildup of excess cerebral spinal fluid, which has sometimes required using an external drain (pictured)
As well as brain surgeries, he’s undergone five spinal taps and a number of other procedures
Bottenus is pictured cycling along the western coast of the Nicoya Peninsula shortly after his injury. They aren’t sure whether he picked up the fungus by inhaling dust, or through his scraped elbow
Bottenus is pictured having his wound cleaned by a nurse following his bike crash in January 2018. It’s believe the dirt in his wound may have contained the rare fungus
Since being diagnosed, doctors have struggled to treat the effectively treat the fungus, which is inoperable due to its deep location in the brain.
Bottenus said they’ve tried medicines, but they couldn’t break the blood-brain barrier to reach the necessary point of treatment. Brain scans have shown some improvement thanks to Bottenus’s natural immune system, but the mold remains present.
Doctors previously prescribed him dexamethasone to treat his inflammation, but it compromised his immune system during a time when the pandemic was heating up in March 2020.
When he stopped taking that steroid drug, his headaches returned and he suffered a stroke that nearly caused him to go blind.
‘I had all sorts of different things happen after that,’ he said. ‘My voice was impacted, I had double vision as a result of that, my muscles in my hands were compromised. I had all sorts of different things going on there.’
Since then, he said he’s been focused on recovering from his stroke while continuing treatment for his brain. He’s since undergone surgery to restore vision to his eyes.
Throughout it all, he said he has endured 10 brain surgeries to relieve swelling, five spinal taps, and a number of other medical procedures.
An MRI (pictured) indicated an abnormal growth in Bottenus’ brain, but doctors initially weren’t sure what it was
Doctors are unable to operate due to the location of the growth, and medication has so far been ineffective at treating it
As the growth remains present, he recently started a new medication to treat it, and doctors are in the process of determining whether it’s working.
‘We’ve figured out the medication is going into my blood at a good level, but we don’t know if it’s going into my brain,’ he said. ‘If that is happening, then we can defeat the fungus. If not, then we’ll have to try another medication.’
Bottenus’ medical insurance have covered most of the expenses he’s incurred through the years-long heath ordeal. If it hadn’t, he said he’d likely be saddled with millions of dollars in debt.
The growth has taken a toll on Bottenus’ professional path as well.
During the early stages of his illness, he realized he was in no condition to continue with his job as a schooner captain, which he described as ‘one of the best jobs I’ve ever had.’
‘I’ve really enjoyed doing that,’ he said. ‘I’m really sad that I can’t.’
He worked remotely for a different employer until his stroke, when he took the opportunity to pursue a lifelong goal of obtaining a master’s degree. He’s now working toward a master’s degree at the University of Rhode Island’s marine affairs department.
He’s currently working on his thesis about offshore wind.
Bottenus worked as a schooner captain before becoming ill, but was forced to give the job up when his pain became too unmanageable to function
Bottenus is pictured with his partner, Liza, who has stood by him throughout his medical ordeal
He and his wife adopted a rescue dog during the ordeal, and the pup happened to arrive on the same day he suffered his stroke. He said the pet, named Honey Boy, and his fiancé have been great sources of comfort.
‘I think my relationship with Liza is stronger than it’s ever been,’ he said. ‘This is one of those tests that you have. And I think we’ve really come out as a stronger couple as a result of this. She’s been super supportive and her family has been very supportive of me.’
Although he can no longer ride a bike, the couple was gifted a tandem bike that allows them to continue their cycling hobby as they move forward with their new normal.
‘We were gifted a tandem bike from Liza’s uncle that allowed me to ride a bike and have Liza be the captain – all I had to do was pedal,’ Bottenus said.
‘This whole experience has taught me to embrace uncertainty. We cannot control what happens to us, we can only control how we respond to different situations. Health care is a human right and we all deserve to have it.’
