Long COVID clinics are wrestling with how to treat their patients

Medical equipment is still scattered around the home of Rick Lucas, 62, who returned home from the hospital nearly two years ago. He grabs a spirometer, a device that measures lung capacity, and takes a deep breath, though not as deep as he’d like.

Still, he’s come a long way for someone who has spent more than three months on a ventilator because of COVID-19.

“I’m almost normal now,” he says. “I was thrilled when I could walk to the mailbox. Now we’re walking all over town.”

Rick is one of the many patients who have found their way to a specialty clinic for patients suffering from long-standing COVID symptoms in search of recovery.

Many large medical centers have set up their own programs, and a crowdsourcing project counted more than 400 clinics nationwide. Despite this, there is no standard protocol for treatment, and experts cast a wide net for cures, very few of which are ready for formal clinical trials. In the absence of proven treatments, doctors are doing everything they can to help their patients.

“People like me go a little bit beyond my skis and look for things to try,” says Dr. Stephen Heyman, a pulmonologist treating Lucas at Ascension Saint Thomas’ long-running COVID clinic in Nashville.

A bumpy road to “almost normal”

It is not clear how many people have suffered from symptoms of long-lasting COVID. Estimates vary widely from study to study, often because the definition of long COVID itself varies. But even using more conservative estimates would still mean millions of people likely developed the disease after being infected.

For some, the lingering symptoms are worse than the initial bout of COVID-19.

Others, like Rick, were on the brink of death and just had a bigger roller coaster ride of recovery than one would otherwise expect. He had brain fog, fatigue and depression. He would start to regain his energy, then try his hand at some light gardening and end up in the hospital with pneumonia. It wasn’t clear which ailments stemmed from being on a ventilator for so long and which stemmed from a yet new, mysterious condition called Long COVID.

“I wanted to go to work four months after I came back,” Rick says over the laughter of his wife and main caregiver, Cinde Lucas.

“I said, ‘You know what, just get up and walk. You can’t drive. You can’t walk. But go to an interview. Let’s see how that works,'” she recalls.

Rick eventually got back to work.

Earlier this year he began accepting short-term assignments in his old role as a nursing home administrator, but he is still partially disabled.

Rick Lucas says he didn't realize how badly he was doing when he returned home after five months in intensive care with Covid-19.  It was more than a year before he was able to return to work, and even then he struggled with ongoing depression and fatigue.  Today he is able to do household chores and works at his old job as a nursing home administrator, although he remains partially disabled.

/Blake Farmer/WPLN

/

Blake Farmer/WPLN

Rick Lucas says he didn’t realize how badly he was doing when he returned home after five months in intensive care with Covid-19. It was more than a year before he was able to return to work, and even then he struggled with ongoing depression and fatigue. Today he is able to do household chores and works at his old job as a nursing home administrator, although he remains partially disabled.

There’s no telling why Lucas has largely recovered and why so many have not shaken off their symptoms years later. What treatments work and what recovery looks like is unique to each long COVID patient.

“There is absolutely nothing that is clear about long COVID,” says Dr. Steven Deeks, an infectious disease specialist at the University of California, San Francisco. “We have a guess as to how often that happens. But right now, everyone is in a data-free zone.”

Researchers like Deeks are still trying to pinpoint the underlying causes — some of the theories include persistent inflammation, autoimmunity, and parts of the virus remaining in the body. According to Deeks, institutions need more money to set up regional centers of excellence to bring together doctors of different specialties to treat patients and research therapies.

Patients are desperate and willing to try anything to get back to normal. And often they post their personal anecdotes online.

“I follow this stuff on social media looking for a home run,” says Deeks.

The National Institutes of Health promise major advances in the near future through the RECOVER initiative, which involves thousands of patients and hundreds of researchers.

“Given the widespread and varied effects that the virus is having on the human body, it is unlikely that there will be a cure, a treatment,” wrote Dr. Gary Gibbons, director of the National Heart, Lung, and Blood Institute, in an email to NPR. “It is important that we help to find solutions for everyone. Therefore, there will be several clinical trials in the coming months.”

trial and error

Some tension is building in the medical community over what appears to be a grab bag approach to treating long-lived COVID before major clinical trials. Some clinicians are more reluctant to try therapies before research supports them.

dr Kristin Englund, who cares for more than 2,000 long-COVID patients at the Cleveland Clinic, says a series of one-patient experiments could muddy the waters for research. She says she encouraged her team to stick with “evidence-based medicine.”

“I’d rather not just try single things with people, because we really need more data and evidence-based data,” she says, “we need to try to put things into some sort of protocol to move forward.”

It’s not that she lacks urgency. Englund has experienced her own lengthy COVID symptoms. She felt horrible for months after falling ill in 2020 and “literally napping on the floor of my office in the afternoons,” she says.

She says that above all, these long COVID clinics need to validate patients’ experiences with their disease and give them hope. She tries to stick to proven therapies.

For example, some long-COVID patients develop POTS — a syndrome that causes dizziness and heart palpitations when they stand up. These are symptoms that Englund generally have knows how to treat, but it’s not so easy with other patients.

Rick Lucas of Hendersonville, Tennessee spent five months in the hospital on a ventilator with Covid.  When he got home, he could barely walk.  It took him weeks to build up the stamina to make it to the mailbox with the help of a walker.

/Blake Farmer/WPLN

/

Blake Farmer/WPLN

Rick Lucas of Hendersonville, Tennessee spent five months in the hospital on a ventilator with Covid. When he got home, he could barely walk. It took him weeks to build up the stamina to make it to the mailbox with the help of a walker.

Englund’s long-running COVID clinic places a lot of emphasis on diet, sleep, meditation and slowly increasing physical activity. But some doctors are willing to throw all possible treatments against the wall to see what might stick.

At the Lucas home in Tennessee, the kitchen counter can barely hold all the pill bottles of supplements and prescriptions. One is a memory drug. “We noticed that his memory was worse [after taking it]’ says Cinde.

However, other treatments seemed to have really helped. Cinde asked her doctor, Stephen Heyman, about testosterone for her husband’s energy. After doing some research, Heyman agreed to give it a try.

He’s trying out drugs — addiction treatments, or combinations of drugs for cholesterol and blood clots — that were seen as potentially showing promise for long COVID. And he’s considering becoming a little guinea pig himself.

Heyman has been up and down with his own lengthy COVID symptoms.

At one point he thought he was over the memory lapses and breathing difficulties. Then he caught the virus a second time and feels more tired than ever.

“I don’t think I can wait for someone to tell me what to do,” says Heyman. “I’m going to have to use my expertise to figure out why I’m not feeling well.”

This story comes from NPR’s reporting partnership with Nashville Public Radio and KHN (Kaiser Health News).

Copyright 2022 WPLN News

Source