The 35-year-old Rhode Island resident believes that he is the only living person suffering from the rare and toxic black moldus. This has been festering on his brain for 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. Bottenus cleaned up the injury and went to a nearby hospital where it was sterilized again.

After suffering from migraines for months, facial paralysis, and brain biopsies that left him in severe pain, he returned to his home only to discover the souvenir Cladophialophora Bantiana. It is also called ‘black mold’ due 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. 

Bottenus stated that he has not met anyone with this fungus. I don’t believe anyone else has this disease. 

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

Tyson Bottenus, 35, became ill after embarking on a backpack tour with his fiancé. His brain was eventually diagnosed with a cancerous growth, which doctors were not able to recognize. Pictured at Massachusetts General Hospital where he was treated for months

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

Bottenus is seen shortly after being diagnosed with brain cancer. According to him, most of his procedures are covered under medical insurance. He stated that he could be in millions without any insurance.

Bottenus claimed that one of their faces became paralyzed shortly after returning to Rhode Island from their backpacking adventure. The migraines were so severe, he started to ‘abuse Advil’ to relieve the pain and took hot showers.

Doctors struggled initially to diagnose the abnormal brain growth that was detected. However, a third brain biopsy revealed the diagnosis and samples were sent to Texas to confirm the diagnosis.  

‘[Doctors]Bottenus said Thursday that he could see the fungus in his head. ‘That was great to figure that out, but it’s not  great that I have fungus in my head. How can I remove this fungus from my head? It’s not allowed to grow fungus inside our heads.

Although it is not clear where the fungus was found, it is strongly believed that it may have been caused by an elbow injury or inhaling dirt and dust while riding in Central America.

The next step for the medical community was to diagnose rare growth. This condition has a high mortality rate, at up to 65%.

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)

Bottenus underwent 10 brain surgeries in 2018 for pressure relief. This was due to excess cerebral spinal fluid buildup. Sometimes, an external drain has been required (pictured).

As well as brain surgeries, he's undergone five spinal taps and a number of other procedures

In addition to brain surgery, he has had five spinal taps as well as a variety 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 can be seen cycling along Nicoya Peninsula’s western coast shortly after his injury. The doctors aren’t certain if Bottenus picked up the fungus from inhaling dust or his scratched 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

Bottenus was seen getting his wound cleaned up by a nurse after his crash on his bicycle in January 2018. Bottenus may have had the rare fungus in the dirt from his wound after he crashed his bike on January 2018.

The fungus is difficult to treat since being first discovered.

Bottenus stated that they tried many medications, but couldn’t overcome the blood-brain barrier in order to get the treatment they needed. Bottenus has a natural immune system that shows some improvements in brain scans. However, mold still remains.

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. 

He stopped using the steroid drug and his headaches returned. A stroke nearly cost him his sight.

 ‘I had all sorts of different things happen after that,’ he said. “My voice was affected, I had double vision, and my muscles in the hands were compromised as a consequence. There were many different issues going on.

He said that he has been focusing on his recovery from the stroke and continuing his treatment for his brain. Since then, he has had surgery to improve his vision.

He stated that during all of it, he’d had 10 brain surgeries to alleviate swelling, five spinal taps and many other medical procedures.

An MRI (pictured) indicated an abnormal growth in Bottenus' brain, but doctors initially weren't sure what it was

A MRI (photo) showed that Bottenus had an abnormal brain growth. Doctors initially didn’t know what this was.

Doctors are unable to operate due to the location of the growth, and medication has so far been ineffective at treating it

 Doctors are unable to operate due to the location of the growth, and medication has so far been ineffective at treating it

He continues to experience growth and has started taking new medications. Doctors are trying to determine if it is working.

“We have figured out that the medication is entering my blood at a healthy level but don’t know whether it’s reaching my brain,” he stated. “If this is the case, we will be able to defeat the fungus.” Otherwise, we will need to look for another remedy.

Bottenus has been able to claim most of the medical expenses that he’s had to incur over his long and difficult health ordeal. He said that if it had, Bottenus would likely have millions in debt.

Bottenus’ career path has also been affected by the growth. 

In the early stages, his condition deteriorated and he had to stop working as a captain on schooners. He described it as one of the greatest jobs he ever held.

He stated, “I’ve enjoyed that.” “It is really sad that it’s not possible for me to do this.

The stroke caused him to work remotely at a new employer. He then decided that he would pursue his lifelong dream of earning a master’s. He is currently working on a master’s degree in 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 was a captain of schooners before he became ill. He had to quit the job when his pain made it impossible to live.

Bottenus is pictured with his partner, Liza, who has stood by him throughout his medical ordeal

Bottenus and Liza are pictured together. Liza has been there for Bottenus throughout the entire medical process.

He adopted his rescue dog with his wife during his ordeal. It arrived the day after he was struck by stroke. He said the pet, named Honey Boy, and his fiancé have been great sources of comfort. 

He stated, “I feel that my relationship is stronger with Liza than ever,” “This is one test that you must pass. We’ve come out stronger as a couple because of it. I have been supported by her and my family.

He can’t ride a bicycle anymore, but he was given a tandem bike by his wife that will allow him to enjoy their hobby while they adapt to their new lifestyle.

Bottenus explained that Liza’s uncle gave us a tandem bike. This allowed Liza to take the wheel and I to pedal.  

“This experience taught me how to accept uncertainty. It is impossible to control the outcome of life, but we can control our reactions to it. The right to healthcare is a fundamental human right that all people should have.

Learn more about the rare, deadly brain fungus known as “Blood Fungus”, which can kill up to 65 percent of those who are affected

  • Cladophialophora bantiana a type of black mold, prefers brains for abscess-formations. The mortality rate is up to 65%
  • Most of the mold’s victims are men over 35 years old.
  • Although it is more common in subtropical regions, the fungus can still be found in areas with moderate climates.
  •  Since 1911 there have been 120 cases of culture-proven CNS-infections reported in medical literature
  • The mortality rate in the first cases was 100%, because the patients weren’t treated or had to have surgery.
  • Without therapy, 21 people were described. None survived. 

Source:  United States National Library of Medicine