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Long-haulers: Tampa Bay residents can’t shake COVID-19 symptoms months later

They survived the coronavirus, but they’re still struggling with strange symptoms they never expected.

Greg Branch not only achieved his dream of becoming a pilot, he had one of the best gigs in the industry. For 13 years, he flew pro athletes, famous musicians and CEOs of major companies around the world on private jets.

“Sometimes, it was just wealthy retirees who’d fly to Canada for lunch,” said Branch, 37. “You don’t ask why, but you learn a lot from talking to them. Every day is something different.”

Every day now, he said, is pretty much the same. Headaches, confusion and fatigue that can make a walk to the kitchen feel as draining as running a mile uphill. Unable to fly, Branch and his wife left West Palm Beach and moved into a home in Tampa owned by her parents.

It all started in June. Casinos reopened. Branch flew clients to Las Vegas. He had a night off and decided to do a little gambling.

“Nobody was wearing a mask,” he said. “I didn’t wear one. I wasn’t taking it seriously.”

His senses of taste and smell vanished a week later, and he had a mild cough. He tested positive for COVID-19. But that was as bad as it got in the first couple weeks.

He expected to be back in the air within a month. “I was in good shape. You have to be pretty healthy to fly.” Plus, everything he had heard about COVID-19 said recovery would take a week or two.

But as the weeks went by, new symptoms appeared. When he and his wife went out on their boat, he felt so tired he could hardly hold his fishing pole.

Branch, like tens of thousands of others, describes himself as a COVID-19 “long-hauler.” The term, which arose as the long-haulers found each other and banded together online, describes people who survive the disease but experience an array of lingering symptoms.

A small but growing body of research suggests as many as one in 10 people who get COVID-19 may fall into the long-hauler category.

More than four months later, small chores wipe Branch out. He helped hang a TV on a wall at home recently. “That crashed me for two days,” he said.

He gets wobbly and everything aches. His heart races out of nowhere, he said, and has approached 180 beats per minute while sitting still at his computer. The worst is the “brain fog” that makes it hard to speak and causes memory gaps.

“I was driving to physical therapy, and I got pulled over,” Branch said. “The officer said, ‘Do you realize you ran a red light?’ I said, ‘No, sir.’ I had no memory of even going through a light.”

Another time he drove to an appointment a mile from home and couldn’t figure out how to get back. His wife drives him places now.

The most high-profile mention of long-haulers yet came recently when Dr. Anthony Fauci spoke on 60 Minutes of a “significant number” of COVID-19 survivors who have fatigue or brain fog for months “or possibly longer.” Fauci has said that, anecdotally, their symptoms suggest myalgic encephalomyelitis, also known as chronic fatigue syndrome, which can be a decades-long illness brought on by viral infections.

Dr. Elimarys Perez-Colon is a professor at the University of South Florida’s Morsani College of Medicine and medical director for the COVID-19 Confirmed (CoCo) Clinic at Tampa General Hospital. She said lung damage and heart failure are the “concrete” issues patients are dealing with post-COVID-19, but “we’re also seeing all these symptoms that we don’t have quite a good understanding or explanation for yet.” They include lingering shortness of breath, chest and joint pain and the inability to return to a formerly active lifestyle due to extreme fatigue.

“How we treat those patients will be a major issue in the future.”

Many long-haulers say they have felt dismissed by doctors or frustrated by suggestions their symptoms could be anxiety or stress. But as time goes by and their numbers grow, physicians are seeing an undeniable pattern.

Related: Florida reports 3,377 infections Monday

Tests often come back normal, but the symptoms are real. “The best we can tell (patients) now,” Perez-Colon said, "is I definitely believe you’re having these symptoms, but I don’t have an answer for you yet. We’re working on getting those answers, but that is going to take time.

“In a year or two from now, if we’re discussing in medical schools all over the world some kind of a post-COVID syndrome, none of us will be surprised.”

Dr. John T. Sinnott, chairman of internal medicine at USF’s college of medicine, said he can’t help but think of his experience traveling to Asia in 2004 to study patients infected by SARS-CoV-1, another coronavirus.

“When we sent those patients home, we thought they were well,” he said. “In five years, when I returned, about 15 percent had chronic lung problems, 12 percent needed one or both hips replaced and 8 percent were physically weak or needed walkers.”

Dr. Seetha Lakshmi, a USF professor and infectious disease specialist who has treated COVID-19 patients at Tampa General, said the long-haulers should be a warning to avoid becoming infected in the first place.

“Young people out there who don’t think this will damage them short-term, you have no idea long-term,” she said.

Many long-haulers have mild initial symptoms and don’t require hospitalization. Sometimes, they’re never even tested, which can complicate things later on when they have no definitive record of having had COVID-19.

Some have found reassurance, if not relief, in Facebook groups like Survivor Corps, where more than 100,000 members compare symptoms and trade stories about their treatments.

“It was really just comforting to finally find other people like me and to realize, you know, I’m not crazy,” said Marcus Tomoff, 28, who created a Facebook group called Florida Longhaulers. The Tampa Bay Times spoke to seven Tampa Bay residents from the group who described ongoing issues after thinking they’d recovered. Some tested positive as far back as March. Only one had been hospitalized around the time they first started showing symptoms.

Tomoff said he had to leave his jobs working in a Tampa restaurant and a nightclub in June, and has struggled for more than four months with chest pain that repeatedly sends him to the emergency room. He recently returned to some light duty at work, but was in the emergency department at Memorial Hospital as recently as Oct. 19.

He can no longer handle the long bike rides on Bayshore Boulevard that he used to take because he gets exhausted easily and has trouble walking.

“He’s 27, but walks like an old man,” said Tomoff’s stepfather Mitchel Banks, 62, who was also infected in June but has no lingering symptoms. “He’s lost 10 or 15 pounds, and he was already skinny.”

Stacey Kelch, 36, described finding the long-hauler support groups on Facebook as “almost like The Twilight Zone,” because of how eerily similar other people’s symptoms were to her own. “All the sudden, you’re seeing yourself after feeling like you couldn’t get any information.”

Before contracting COVID-19 in June, Kelch worked as a bartender at the Castle and the Boneyard in Ybor City. She went to the emergency room twice in October. The first time was after she blacked out and woke up on the floor to her dog, Lucy, licking her. The second was after her blood pressure plummeted and her pulse raced to 160 and wouldn’t come down.

Tests from that last visit showed an enlargement of the right ventricle of her heart. Kelch said she had no health issues prior to COVID-19. She now has frequent rashes, fevers and headaches, and becomes exhausted easily. She can’t work and can no longer read to pass the time.

Kelch’s girlfriend, Sheri Shuttleworth, said Kelch was a speed reader. She once saw Kelch finish George R.R. Martin’s first three books in the Game of Thrones series in only a few days. That’s around 800,000 words.

Stacey Kelch, left, and her partner Sheri Shuttleworth, in an undated photo. Kelch, who contracted the coronavirus in June, is still unable to to return to work as of late October.
Stacey Kelch, left, and her partner Sheri Shuttleworth, in an undated photo. Kelch, who contracted the coronavirus in June, is still unable to to return to work as of late October. [ Courtesy of Christopher Spires / Drunk Camera Guy ]

“Now I have to read the same paragraph, over and over, 15 times to comprehend it,” Kelch said.

Specialized post-COVID clinics opened in recent months around the U.S., mostly at teaching hospitals. The clinic at Mount Sinai in New York City was one of the first, followed by Penn Medicine’s clinic in Philadelphia, Northwestern Memorial Hospital in Chicago, the Stanford University Medical Center, the University of California-San Francisco and others. They’re bringing physicians with different specialties — cardiologists, pulmonologists, neurologists — together and incorporating speech therapy, physical therapy and psychology.

In the United Kingdom, where long-haulers' symptoms are referred to as “long covid,” the National Health Service announced on Oct. 7 a plan to open long covid clinics in every area across England, a recognition that medicine could be reckoning with the effects of the virus long into the future. The NHS specifically noted that it will include people who have had COVID but who may not have had a hospital admission or a previous positive test.

There are no such clinics in Florida yet.

“Treating these patients will cost a lot of health care dollars,” Perez-Colon said.

Perez-Colon said theCoCo Clinic could be folded into USF’s new Global Emerging Diseases Institute and transition into a clinic more focused on “long-haulers” who may or may not have been hospitalized with COVID-19. The CoCo clinic has so far focused mostly on telemedicine and currently follows patients who were already treated for confirmed cases within the USF or TGH systems.

She said the new institute will have many lines of funding through research grants and that an expanded CoCo Clinic is being proposed as part of that project.

Branch, the pilot, said that for now, he feels somewhat lucky to have found a general practitioner who listens and acknowledges that he is dealing with chronic COVID-19, even if all they can do is treat the symptoms and refer him to specialists.

He said the more frustrating part is having his health and career ripped away due to an illness that he believes many people still think is fake. He doesn’t know if he’ll be able to fly again. The intense medical approval process with the Federal Aviation Authority, once he’s ready, feels daunting.

“It makes me want to scream when I see people without a mask,” he said. “If people knew what this feels like, they’d take it seriously.”

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