He contracted a brain-eating amoeba while jet skiing – and beat the 97% fatality rate

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YORK, Penn. -- Sunday, May 7, 2019, started out lousy. It had rained overnight and into the morning, but as the day progressed, the weather cleared up. It turned out to be a warm, sunny day, and Ryan Perry felt it would be a good day to get out on the river.

Perry hauled his jet ski from his home in Street, in northern Maryland, to the boat landing along the Susquehanna River above the Conowingo Dam — a spot he had frequented. He took his fishing gear with him, figuring he’d spend the day riding his jet ski and fishing for small-mouth bass in the placid water above the dam.

When he got on the river, he noticed that the water seemed roiled up and opaque with sediment and silt stirred up by the overnight rain.

He was on the water for a couple of hours, maybe three, tearing around the reservoir on his jet ski. It felt good, the mist kicking up and cooling him as the machine sliced through the water.

It was a good day, just having a good time on the river.

The next day at work – he's a sales manager for Verizon in Baltimore – he had a horrible headache, the worst he’d ever experienced, excruciating. The headache didn’t pass, and the next day he went to his doctor. His headache persisted. The next day, he wound up in the emergency room at the Upper Chesapeake Medical Center in Harford County.

The headache didn’t fade, and he was admitted to the hospital. He developed a fever. As the days passed, his condition got worse. His mother is a nurse, and she was concerned. Nobody seemed to know what had afflicted him. They did tests, even a spinal tap, and couldn’t figure out what was attacking his body.

His condition deteriorated, and he was transferred to the University of Maryland Hospital in Baltimore.

There, he said, “I tanked.”

He was put into a medically induced coma and placed on a ventilator. He was paralyzed from the neck down.

The doctors were puzzled. They tried to figure out what had happened. They asked the Mayo Clinic and the Centers for Disease Control and Prevention to examine his blood and figure out what had caused a healthy 31-year-old man to suddenly crash to the point that he was close to death.

Nobody, it seemed, could figure it out.

It turned out it was something in the river.

Perry grew up on the river and in the Chesapeake Bay. His family fished, and he has been on the water “all my life,” he said.

A place that had given such joy and recreation in life had threatened his life.

After batteries of tests, including MRIs, doctors and researchers narrowed it down to an infection caused by Naegleria foweri, an amoeba that resides in warmer, still waters. The amoeba, according to the CDC, causes “a devastating infection of the brain called primary amebic meningoencephalitis (PAM).” It usually enters the body through the nose, the CDC reports, and cannot be contracted by swallowing contaminated water.

“Once the amoeba enters the nose,” the CDC reports, “it travels to the brain where it causes PAM, which is usually fatal.”

In layman’s terms, they suspected that Perry had contracted what’s commonly known as “brain-eating amoeba,” an organism that, in effect, attacks and consumes brain cells.

The doctors came to the conclusion by virtue of his recent behavior – jet-skiing – and by eliminating pretty much every other cause. They reasoned that the amoeba was living in the sediment in the river and that the recent rains had stirred it up.

They couldn’t diagnose it to a medical certainty. In the majority of cases – 75 percent – the only way to detect it with certainty is to examine the brain for its presence during an autopsy, according to the CDC.

It is an exceeding rare malady. The CDC reports, “In the 10 years from 2009 to 2018, 34 infections were reported in the U.S. Of those cases, 30 people were infected by recreational water, 3 people were infected after performing nasal irrigation using contaminated tap water, and 1 person was infected by contaminated tap water used on a backyard slip-n-slide.”

And it is almost always fatal. According to the CDC, the fatality rate is 97 percent. “Only four people out of 145 known infected individuals in the United States from 1962 to 2018 have survived,” the CDC reports.

The odds of contracting the disease, and surviving, are exponentially steeper than winning the Powerball.

Considering the odds, people have told Perry that perhaps he should have played the lottery that day.

Yeah, he responds, this is one lottery you don’t want to win, that kind of jackpot that you wouldn’t wish on your worst enemy.

'My brain was trying to blow up'

As he lay in the hospital, a machine keeping him alive, the doctors prepared his family for the worst. The best-case scenario, the doctors said, was that he would never walk again. Other outcomes ranged from a permanent vegetative state to death, the doctors told his family. “Basically,” Perry said, “my brain was trying to blow up.”

As far as treatments, they told them, “they were shooting in the dark,” Perry said. According to the CDC, there is no effective treatment protocol. “Several drugs are effective against Naegleria fowleri in the laboratory,” the CDC reports. “However, their effectiveness is unclear since almost all infections have been fatal, even when people were treated with similar drug combinations.”

In Perry’s case, the doctors treated him with a procedure called plasmapheresis in which the blood is routed to a machine that filters and removes plasma, replacing it with known uninfected plasma. Typically used to treat a variety of critical illnesses, according to the National Institutes of Health, it has proven effective in treating brain and nervous system disorders, including Guillain-Barre syndrome.

Perry remained on a ventilator until June 13, 2019. He had awakened prior to that, his memory after being hospitalized being the pain caused by doctors moving his breathing tube from his mouth to his throat.

He remembered being confused when he woke from the coma. He didn’t know what happened to him, where he was, anything. “I lost my memory from December on,” he said. He was only able to piece together what he had gone through by speaking with his family and his doctors.

He was transferred to the University of Maryland’s Orthopedic Rehab. “They didn’t think I was going to walk again,” Perry said. His brain had sustained damage, similar to that seen in stroke patients, and he had to essentially rewire his brain so it could work again, bypassing the damage. He had to come to terms with the probability that he’d be in a wheelchair the rest of his life.

He was in rehab for two months. “It was the hardest thing I’ve ever done in my life,” Perry said. “You’ve walked all of your life, and then you can’t, and you have to learn how to do it all over again. I’m stronger than I ever thought I was. I learned a lot about myself, that’s for sure.”

He now serves on the patient advisory council at the rehab. “Nobody’s gone through what I have,” he said. “I thought, more than once, ‘Why me?’ I’m not a religious person, but the past (two years) make me think that there’s something different for me out there. It steered me in the direction to help other people going through hard times. And it humbled me a lot.”

Very expensive treatment

He left rehab on Aug. 9 and continued rehabbing at home, using a walker. On Oct. 16, he returned to work, using a cane to walk. He pretty much had to, he said; his short-term disability insurance had run out.

His treatment, in total, cost about $800,000, he said. Most of it was covered by insurance, but he was still on the hook for $35,000. His sister Jessica set up a GoFundMe page with a $50,000 goal. As of April, it had raised almost $4,400.

Getting back on the water

“From where I came from to now,” Perry said, “I’m doing really well.”

He still has a lot of pain in his feet and legs, but it was getting better, he said. He still uses a cane, but not all of the time. He still can't be on his feet for long periods of time and, he said, "While no doctor is able to say for sure if I will ever get back to normal, I'm grateful for the progress I have been able to make, which has been way beyond my medical prognosis. It's likely that I will always have residual effects on my health and ability to walk without deficit."

Earlier this year, before the coronavirus lockdown, Perry went jet-skiing for the first time since he got sick. His mother thought he was crazy, but he said, “I decided to get over the hump.” He assured her that he would be careful about getting water up his nose, and wouldn't go out on the water after heavy rains.

Still, he was apprehensive. “On the way over, I thought maybe I should turn around. Maybe I shouldn’t do this,” he said.

He overcame his anxiety and got back on the water.

“It was a good day,” he said. “The water was the cleanest I’ve ever seen it.”

Columnist/reporter Mike Argento has been a Daily Record staffer since 1982. Reach him at 717-771-2046 or at mike@ydr.com.