When Stephanie Hedrick realized she was having trouble breathing, blurred vision and mental fogginess months after overcoming covid-19, she decided she needed more specialized care than her doctor could provide.
“Not all doctors know everything,” says the 62-year-old retired professor from the state of Virginia, in the United States.
After months of rehabilitation therapy at a specialized clinic near Washington, Hedrick was finally able to play in the ocean with his five grandchildren this past summer.
The MedStar Covid Recovery Program she turned to is part of the clinics that treat patients suffering from long-term covid, a post-infection syndrome that can affect almost every part of the body.
“The clinic gave me hope that life was going on,” Hedrick said.
There are similar clinics in other parts of the United States, which were emerging as it was found that some patients who had had the new coronavirus continued to have health problems.
Doctors have known for years that some patients recovering from viral infections develop postviral syndromes, but the reason is unknown.
“Something is going on. It’s clearly not patients’ imaginations,” said Hana Akselrod, co-director of the George Washington University-linked COVID-19 Recovery Clinic.
Estimates of long-term covid-19 cases vary widely from study to study (from 10% to 35% or even 50%).
After falling ill, Hedrick had arrhythmias, joint pain and shortness of breath.
“It’s like someone took all your energy, strength and motivation to be able to do something,” he describes.
Eric Wisotzky, director of the MedStar clinic, strategizes with patients that involve a “delicate balance” of exercise and rest.
Some even restore lost smell by inhaling essential oils several times a day.
To improve endurance, Hedrick had to do short, easy exercises.
And when she gets confused in a store, she uses the strategies her speech therapist taught her to slow down and go through her shopping list item by item. He acknowledges that he has not yet fully recovered but “has longer periods of good days.”
Alba Azola, co-director of the post-acute covid-19 team at Johns Hopkins in Baltimore, has “multiple theories” about the causes of long-lasting covid-19, from fragments of virus left in the body to a lack of control of the immune system. “I think there is more than one mechanism at play.”
The United States Centers for Disease Control and Prevention (CDC) defines long-term covid as a set of “new or continuing” symptoms that manifest four or more weeks after the acute infection has passed, although there is disagreement about which ailments are attributable to the condition.
For many patients, the mere fact that a doctor recognizes their suffering already relieves them.
Marijke Sutter, 39, is a nurse from Baltimore who contracted covid-19 in March 2020. She thinks it was due to a lack of proper personal protective equipment. He ended up resigning when he realized he needed more time to rest.
“Those first four months are a blur,” said Sutter, who says she was very tired and had insomnia.
He consulted doctors at Johns Hopkins in June 2021.
“It’s okay for doctors to validate my experience as a patient,” Sutter said.
Sutter says meditation and yoga have been the most helpful in her recovery, and she’s now back to work part-time, teaching nursing remotely. But he still needs three-hour naps most days.
Rachel Curley, 32, also found it helpful to switch to a part-time job.
Curley was infected in December 2020. Within a few weeks, the fever was gone and was replaced by extreme fatigue, brain fog and dizziness. His heart rate skyrocketed with little he did.
“It was scary in a way,” Curley said. “What if I don’t get better?” You have been told to avoid stress and increase physical activity and so far it works.
There is no single solution, explains Hedrick.