Tara Markley ran full marathons before she was infected with COVID-19 in late December.
But since she got sick more than four months ago, she’s barely been able to go on walks. Markley, 42, wants to play with her two young children, but once she gets moving she struggles to catch her breath. Her heart immediately starts to race.
She’s experienced brain fog, fatigue, headaches and joint aches. She has short-term memory loss, and her depression and anxiety have worsened.
“I just want to be back to feeling normal,” Markley said.
Markley, who lives in the Oklahoma City area with her family, is among a number of people known as “long haulers,” who remain or become sick weeks or months after an initial coronavirus infection.
People who experience long COVID, which some researchers call post-acute sequelae of COVID-19, report an array of symptoms such as fatigue, shortness of breath and gastrointestinal problems.
Research is rapidly evolving on COVID-19 and scientists are just starting to scratch the surface on how many long haulers there are, how to best diagnose and treat them, and why it happens to some people and not others.
In Oklahoma, efforts to treat and research long COVID have started to emerge across the state.
Within the last month, Ascension Medical Group St. John opened two clinics in Tulsa and Bartlesville that specialize in the care of patients with lasting symptoms from a coronavirus infection.
Dr. Herman Gonzalez, who supervises the clinic in Tulsa, said he sees at least two to three patients each day.
During a typical office visit, patients get about 15 minutes with their health care provider, but Gonzalez spends 45 minutes with his COVID patients. He aims to take a holistic approach and look at the patient’s overall health. If he focuses only on the coronavirus infection, he might miss another health problem that needs to be addressed. If needed, he can refer patients to specialists, such as cardiologists, neurologists or physical therapists.
There is no average COVID long hauler. Patients’ symptoms range widely, and Gonzalez has treated people as young as 20 and as old as 73. Each person requires a unique approach, he said.
“The purpose of this is to acknowledge that they (patients) are having issues that are directly related to COVID,” Gonzalez said of the clinic.
“Because a lot of times they’ll go see their regular doctor, have labs, X-rays done and a lot of times the stuff is normal, and it makes the patient feel like it’s all in their head because they’re getting the results back and their doctor’s saying everything’s normal here, but they’re obviously having symptoms and such.”
Every three months, Leah Pollan takes her 13-year-old son Cache to a pediatric cardiologist in Houston. Cache fell ill with COVID-19 early last year and since then has been diagnosed with dysautonomia with postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome, a disorder that can lead to allergic and inflammatory symptoms. POTS is a dysfunction of the autonomic nervous system.
Prior to his coronavirus infection he was a healthy and active kid, Pollan said, but since then he often struggles to get out of bed. He’s on eight different medications to help regulate his blood pressure, and he isn’t able to go to school. He’s depressed and is in counseling, his mother said.
Pollan, who lives with her family in Norman, spends an hour every day on her computer researching long COVID and looking for ways to help her son. She said she hasn’t been able to find a health care provider in Oklahoma who can help relieve Cache’s symptoms.
She hopes researchers can soon find answers and solutions for long haulers.
“It’s been a nightmare,” she said. “He’s better than he was six months ago, but he’s still not where he can go to school. We have a long way to go.”
The National Institutes of Health has launched an initiative to investigate the long-term health effects of a COVID-19 infection, investing $1.15 billion over four years. The Oklahoma Medical Research Foundation is participating in the initiative.
Dr. Stephen Prescott, president of the Oklahoma Medical Research Foundation, said one hypothesis scientists there are studying is that a coronavirus infection may trigger an autoimmune response where the immune system attacks the body even when the threat of the virus is gone. Some scientists are also exploring the possibility that long COVID is a persistent, low-level viral infection.
“The bottom line is it’s too soon to tell which of these is going to be correct,” Prescott said.
Dr. Dale Bratzler, chief COVID officer at the University of Oklahoma, said he’s concerned about the ramifications of long COVID on public health as the pandemic continues.
“It could be a substantial population,” he said.
Bratzler noted a study out of the United Kingdom in which 13 percent of participants reported COVID-19 symptoms that lasted for more than 28 days. Research on estimates of long COVID’s prevalence have widely varied.
There’s no single test that can diagnose long COVID, which could foster skepticism about the illness, Bratzler said.
“You’re not going to go to the doctor and they’re going to do a test and that’s going to give you a diagnosis. It’s going to be a clinical diagnosis of exception when you’ve ruled out other things that could be causing the patient’s symptoms,” he said.
“Until we get a good description of exactly what we’re talking about and a test that says ‘this versus that,’ it’s going to be hard,” Prescott said. “It’s going to be hard for everybody. Patients are going to be uncertain. Doctors are going to be frustrated with not being able to give them an answer.
“I predict we’re going to go into a spell of a lot of frustration.”
Markley switched to a new physicians’ office recently after her previous provider seemed to dismiss that her symptoms could stem from a coronavirus infection. Now she’s waiting on test results.
A nurse at Markley’s new doctor’s office told her they’ve had several calls from people with long-lasting COVID symptoms.
“That was almost like a breath of fresh air. You know you’re not crazy. This is happening to other people,” she said. “I’m trying to rebuild my health.”