Medical equipment is still strewn around the house of Rick Lucas, 62, who has been home from the hospital nearly two years. He picks up a spirometer, which measures his lung capacity, and takes a deep breath, though not as deep as he’d like.

But he’s come a long way since spending the last five months of 2020 in the hospital with COVID and on a ventilator.

“I’m almost normal now. Right now, I don’t know what I can’t do that I used to,” he says. “I was thrilled when I could walk to the mailbox. Now, we’re walking all over town.”

No one knows how many people have symptoms from long COVID. But estimates are in the millions. For some, the lingering symptoms are worse than the initial sickness. Others, like Lucas, were on death’s door and have had more of a rollercoaster of recovery than you’d otherwise expect. 

Even though specialized clinics have popped up around the country to treat this mysterious syndrome, little is known about what actually works. 

Each experience is unique. Lucas had the brain fog, fatigue and depression. He’d start getting energy back then go try some light yard work and end up in the hospital with pneumonia. 

It wasn’t clear what ailments were just from being on a vent so long and what was from this new, mysterious condition called long COVID.

“I had no doubt that I was going to be back to normal. In fact, I was wanting to go to work four months after I got home,” Rick says over the laughter of his wife and primary caregiver, Cinde.

“I said, ‘You know what? Just get up and go. You can’t drive. You can’t walk. But go in for an interview. Let’s see how that works,’” Cinde recalls. 

Blake Farmer WPLN News

Cinde Lucas has to explain much of the treatment for her husband, Rick, because he doesn’t have much memory of it. He spent five months in the hospital on a ventilator. And even when he came home, he could do nothing for himself and experienced severe symptoms of long COVID, including fatigue, brain fog and depression.

Rick did start working earlier this year, taking short-term assignments in his old field as a nursing home administrator. But he’s still on partial disability.

There’s no telling why Rick has mostly recovered and so many haven’t shaken the symptoms, even years later. 

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

Researchers like Deeks are still trying to establish the underlying cause. Theories include inflammation, autoimmunity and bits of the virus left in the body. Deeks says there need to be big national centers of excellence where researchers can work together on promising treatments. So far, those haven’t been established, though the National Institutes of Health is promising big advances in the near future through the RECOVER Initiative, involving thousands of patients and hundreds of researchers.

There are specialized COVID clinics established by dozens of big medical centers. A crowd-sourced project counted more than 400. But there’s no standard protocol for treatment. And experts are still casting a wide net for cures, seeing what works for patients around the world. 

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

Patients, especially those who were perfectly healthy pre-COVID, are desperate and willing to try anything.

“Given the widespread and diverse impact the virus has on the human body, it is unlikely that there will be one cure, one treatment,” Dr. Gary Gibbons, director of the National Heart, Lung, and Blood Institute, says in a statement to NPR. “It is important that we help find solutions for everyone. This is why there will be multiple clinical trials over the coming months.”

There’s some tension building in the medical community on what remains a grab bag approach ahead of big clinical trials. Dr. Kristin Englund, who oversees more than 2,000 long COVID patients at the Cleveland Clinic, says a bunch of one-patient experiments could muddy the waters for research.

“I’d rather not just kind of one-off trying things with people because we really do need to get more data and evidence-based data. So that means we need to try to put things in some sort of a protocol moving forward,” she says.

It’s not that she lacks the urgency. Englund experienced her own long COVID symptoms. She felt terrible for months after getting sick in 2020, “literally taking naps on the floor of my office in the afternoon.”

So she says the biggest job of these long COVID clinics is still to validate patients and give them some hope. She tries to stick with proven therapies. When they have a syndrome known as POTS, where they get dizzy and their heart races when they stand up, she treats the symptoms. Otherwise, there’s a lot of focus on diet, exercise and mindfulness.

But some doctors are willing to throw all sorts of treatments at the wall to see what might work. 

Blake Farmer WPLN News

Cinde Lucas explains all the supplements and medications her husband has taken since returning home from five months in the hospital with COVID.

At the Lucas house in Tennessee, the kitchen counter can barely contain all the pill bottles of supplements and prescriptions. One is a drug for memory. “We discovered his memory was worse,” Cinde says. 

Others, however, seemed to really help. Cinde asked their doctor about testosterone for energy, and after doing some research, he gave it a shot.

Colleen Heyman submitted

Dr. Stephen Heyman spent several weeks in the hospital recovering from COVID in mid-2020. He battled back from long COVID symptoms but was set back again after a second round of COVID infection. He leads the long COVID clinic at Ascension Saint Thomas in Nashville.

“People like myself are getting a little bit out over my skis, looking for things that I can try,” says Dr. Stephen Heyman, a critical care physician who treats Rick Lucas at the long COVID clinic at Ascension Saint Thomas in Nashville.

Heyman has become a bit of a guinea pig himself. He’s been up and down with his own long COVID. He thought he was past the memory lapses and breathing trouble, then he caught the virus a second time and feels more fatigued than ever. 

He’s trying medications used for addiction and cholesterol, which have both been seen as promising therapies. 

“I don’t think I can wait for somebody to tell me what I need to do directly,” he says. “I’m going to have to use my expertise to try and find out why I don’t feel well.”