Long-COVID sufferers beg for answers

By Maggie Brown, WRAL multiplatform producer

Chapel Hill, N.C. — Even though Angela Hogan and her daughter, Rachel Hogan, were hospitalized with coronavirus more than eight months ago, they're both still struggling with symptoms. They're among the millions of people across the globe who are continuing to experience symptoms of COVID-19, months after their initial infection.

During the day, Angela is so fatigued and dizzy, she can hardly move. Her heart is racing and she has pain in all of her joints.

"I'm actually to the point of getting a cane," Angela, from Asheboro, said. She can hardly stand up straight.

At night, when she wants to sleep, she has to use supplemental oxygen. Her daughter, Rachel, only 23, is struggling with heart issues.

"A lot of us are still suffering, begging for help," she said.

Both of the Hogans were in a COVID ward of a local hospital, in Greensboro, together. Angela almost didn't make it after staying in the hospital for weeks.

"Unfortunately, COVID is something that makes you feel alone," Angela said.

But the two say having each other makes the recovery more bearable.

"She has been my rock," Angela said.

"People don't really get it. They can empathize with it, but they don't understand," Rachel said.

Now, the pair face medical bills they don't have the money to pay — for neurologists, cardiologists and pulmonologists. Neither woman has found many answers in the search for treatment.

"I'm hoping and praying that UNC can help," Angela said. The University of North Carolina at Chapel Hill's School of Medicine opened a coronavirus "long-haul" clinic for patients still experiencing debilitating symptoms after their initial COVID infection. Angela has her first appointment in the fall.

More than 300 people are in the program, and 70% of them are women, according to John Michael Baratta, one of the directors of the clinic. The majority of his patients are younger, between the ages of 18 and 49.

Previously perfectly healthy people come into the clinic, he said, with symptoms that range from memory loss to breathing troubles.

"We've been seeing a wide range of folks, but there are definitely a lot who didn't have any pre-existing conditions and now have this new chronic illness," he said.

The most common symptom that Baratta sees is fatigue. People are exhausted when they wake up, and exhausted when they fall asleep.

Patients often develop chronic neurological disorders, like depression, anxiety, substance abuse and insomnia. Barrata said that people can get stuck in a cycle, too discouraged to pull themselves out of bed, and that makes them feel worse.

"It really takes a toll on you, the trauma," Rachel said. "I don't think a lot of people realize it."

The mystery of long-COVID

Scientists and health experts are still unsure about what causes long-term effects after COVID. Some studies suggest it could be caused by low-levels of the virus persisting in the body, while others believe it could be an autoimmune disorder.

Jason Baley, instructor in medicine at Harvard Medical School, says long-COVID could also be damage to people's nerve pathways. Baratta believes the syndrome could be caused by inflammation in the body, but some patients don't show signs of that in their blood work, so he isn't totally sure.

A recent study out of England suggests that millions of people could be suffering from long-COVID across the globe. And those patients aren't left with much hope for a solution. UNC's long- haul clinic mostly helps people manage their symptoms through different forms of physical therapy.

One patient advocacy group, Survivor Corps, has a poll that suggests that people feel better after getting the Pfizer or Moderna vaccine. Rachel's experience backs that up. She said that after getting vaccinated, she has felt much better. But Baratta cautions that this boost in health could only be temporary for many long-haulers.

"It's unclear, I think, from at least the data that I saw there, as to whether this is a temporary or permanent benefit," Baratta said.

Some people only have a mild case of the virus, but develop long-term symptoms months later. The majority of patients in UNC's long-term clinic were not sick enough to require hospitalization.

"I expected that a large percentage of people would have needed hospitalization, but, in actuality, the majority were not hospitalized," Baratta said.

Desperate, people turn to experimental medicine

Luke Volkmar, 40, from Charlotte, got sick early on in the pandemic, in February 2020. He only had a mild case of the virus, but since then, his health has been declining.

Before the pandemic, he was a runner and would run 400 miles a year.

"We're a very active family," he said. "We enjoy hiking outside."

Now he can hardly walk around the block.

He said he was involved in the community, serving on non-profit boards and managed a team at his architecture firm. Now he is in bed for hours a day, at times barely able to move.

Volkmar is trying everything he can to get better. That includes experimental treatment of a drug most often used to treat parasites in animals, Ivermectin. The Food and Drug Administration has issued numerous warnings about the drug advising people not to take the medication to treat COVID. The FDA is, however, conducting ongoing research into the possible benefits of taking Ivermectin to treat COVID.

Volkmar is paying out-of-pocket for the drug from a long-COVID clinic in Charlotte.

"I'm confident I'm going to get back," he said. "I've got to, for my family."

Already, after taking the medication, Volkmar says he feels a bit better. His chest hasn't hurt as much, and he feels as if he has more energy.

He is seeing Dr. Bruce Patterson based in Charlotte, who is doing his own research into the virus. Patterson's clinic suggests that the reason people stay sick with the virus is due to pro-inflammatory cytokines, or proteins, which he says that Ivermectin can combat.

Volkmar has two young boys. He said his children understand he is sick, but he worries his 3-year-old has no memories of who he was before long-COVID.

"That's been the hardest part. I can't play, I can't wrestle. I can't be dad. That's all on hold," he said.