For Texans with long COVID, specialized centers can provide more effective treatments — if they can access them

After going for a quick run last year, weeks out from a mild COVID-19 infection, Dr. Monica Verduzco-Gutierrez returned home more exhausted than usual. She broke out in hives and felt a migraine crash down on her.

The next months marked changes in her daily lifestyle: her blood pressure and heart rate would fluctuate wildly. It was hard to go on walks.

She had treated hundreds of patients with long-term symptoms of COVID, or “long COVID,” for almost two years, operating out of a center based in San Antonio with a months-long waitlist. But even then, she felt other doctors wouldn’t listen to what she needed.

“It took me almost a year to get what is, I think, better,” she said, “but still I question: am I all the way better?”

While some scientific research has made advances in care, there are still so many questions left on long COVID’s wide ranging symptoms, treatments and effects.

At the Department of Rehabilitation Medicine at the University of Texas Health Science Center at San Antonio, Verduzco-Gutierrez has worked with other medical specialists to treat a still-growing population of patients weekly, but she said awareness of the disease seems to have dropped for the 15% of Texans who have experienced long COVID at some point, according to a recent Centers for Disease Control and Prevention survey.

“It’s sad that we did all of this stuff at operation warp speed before: we got vaccines so quickly, we got all of these treatments, and now it’s like — everything’s over,” she said. “Where’s warp speed for people who have long COVID? Because they’re suffering, they have disabilities. They aren’t able to get back to work or back to their lives.”

More than a dozen clinics popped up across the state to address long COVID since the pandemic began, which is an umbrella term for a wide range of symptoms including virus-induced organ failure, chronic fatigue syndrome, chronic heart conditions, brain fog and the worsening of preexisting conditions. Many used a team of interdisciplinary doctors to try and attack the all-over-the-place symptoms and nail down exact causes.

But some of these clinics shuttered after a year, some refocused on inpatient-only care for people coming out of the ICU with COVID, and some were rehab centers unspecific to long COVID care. All the while, wait times at those clinics still existing have ebbed and flowed with surges of the virus. Many Texans don’t even know to look for the specific care, and for those who do, a stigma around whether long COVID actually “exists” has yet to subside, Verduzco-Gutierrez said.

“I had another doctor tell me, ‘I don’t want you to give me the diagnosis of long COVID, because I don’t want to be labeled as that kind of patient,’” Verduzco-Gutierrez said. “Some people look at it negatively because we just don’t know enough about it yet. And that’s really unfortunate.”

The rate of people infected with COVID who end up with long COVID has generally decreased since the pandemic began, according to KFF, a health policy research organization. But reinfections can still cause the condition, and up-to-date vaccinations may help prevent its development, according to the CDC.

What long COVID looks like

Days after recovering from COVID-19, Amy Goldenburg started having stomach pain and intestinal issues in 2020. Chronic fatigue soon hit her, and she began sleeping 16 to 18 hours almost every day, waking up to different results of a “symptom lottery.”

For months, her heart rate would jump when just rising to use the bathroom and she could only eat Raisin Bran cereal. At her doctor’s office, Goldenburg, 50, was told that she was most likely experiencing anxiety, depression or menopause.

“I kept saying, if this is menopause, we would never see any middle-aged women, ever,” she said. “We just wouldn’t be able to leave the house.”

It wasn’t until later that year that a different physician identified her initial COVID-19 infection, and she found others on social media experiencing similar, serious long-term symptoms. She joined their Facebook group — ATX Covid Long Haulers — where a small group ballooned over time to create a safe space and support system, she said.

They discussed symptoms, being admonished by doctors, family and friends for issues, and shared resources for doctors who seemed to empathize with them more.

“It’s a lifeline for a lot of us,” she said. “We would talk about, when we feel well enough, maybe we’ll get together someday. Nobody is well enough for that yet.”

Dr. Luis Ostrosky, chief of infectious diseases and epidemiology at UTHealth Houston and Memorial Hermann and staff physician at the facility’s COVID-19 Center of Excellence, said he’s seen three different patterns of long COVID: people who had severe bouts that damaged major organs like lungs and kidneys where patients need rehabilitation, people who had underlying conditions that manifest and worsen, or, the “true” long COVID patients.

These are people who had little to no health issues before but whose bodies either struggled to fully eliminate the virus and continue to take damage from it, or had their immune system flare as a result of viral infection, he said.

“I want to emphasize that we’re still seeing long COVID,” Ostrosky, whose clinic has a two-to-three month waiting period, said. “There’s some thought out there that, as the virus gets milder, we’re not seeing as much long COVID. But our clinic is as busy as ever and for some people, this is completely disabling. This is life changing.”

One of Ostrosky’s patients, Roger Weill, traveled from Mississippi to receive care after testing positive and experiencing serious COVID symptoms for months. He said his local doctors had done all they could but hit a wall, and Weill’s previous experience receiving chemotherapy for lymphoma had complicated his recovery.

“It just kept getting worse and worse and worse, and I even confessed to my sister before we made the trip to Houston that I wasn’t sure that I was coming back,” Weill, 65, said.

After months of specialized testing and treatment, Weill received a convalescent plasma infusion, which resulted in his first negative COVID test in almost a year. This infusion allowed his body to fight the infection.

Since then, he’s returned home and been able to make himself breakfast and even ride a bike.

“The clinic had more freedom, based on their experience, to treat me in a different way,” Weill said. “It was just a wealth of experience.”

The UTHealth Houston Covid Center is part of the National Institutes of Health’s Recover initiative, which allows Ostrosky to conduct more research trials on the best treatments for different kinds of long COVID, Otrosky said.

The future of long COVID treatment

In September, the Department of Rehabilitation Medicine at the UT Health San Antonio, where Gutierrez-Verduzco works, received a federal grant of $1 million from the Biden Administration to expand its capacity for patient care, educate more people and train physicians in long COVID care.

It’s something, but “still not enough” to keep up with what patients need, she said.

“It’s going in the right direction, and it’s good that this is happening,” she said. “But still, there’s the need for research trials to happen quicker. If this is a step to that, I would love it.”

One example of lagging research remains around the understanding of pediatric long COVID. Not much is known about the condition in children, but it is considered uncommon, according to the National Institutes of Health.

“In the pediatric community, I will say we’re in full panic because it’s different with children,” said Megan Carmilani, founder of nonprofit Long Covid Families. “Children’s symptoms have to be observed by an adult. They can’t take themselves to a doctor. And so what typically happens is it’s six months, nine months, sometimes 12 months after the infection that parents are finally like — ‘wait a minute.’”

The NIH research program has launched a study to find out more about children’s experiences with the condition.

But things have changed since the chaos of the pandemic’s inception, and the more resources increase, the more care can improve.

Dr. Fidaa Shaib, director of the Post COVID Care Clinic at Baylor College of Medicine, said continued research is one part of resources doctors can now refer to when treating new patients.

“There is more hope,” Shaib said. “We have had the experience now, so we feel more comfortable and more confident seeing the patients and making a plan with them. And the patients, they come in, they have expectations, and we can share with them good stories of recovery.”

Shaib said she’s working to develop more treatment centers with the Baylor model in parts of Texas with less health care access, including at a health center in Pasadena, in hopes of reaching underserved populations.

In the end, though, there is hope this specialized treatment will become less necessary at some point.

“Can we figure out how people get long COVID, prevent COVID, and can COVID be over with and we find treatments for these patients?” Verduzco-Gutierrez said. “The goal of the clinic, eventually, will be to shut down.”