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We have known about long COVID since the early months of the pandemic, and specialty long COVID clinics have popped up all over the country. But there is still a lack of evidence for how to treat it. Blake Farmer of member station WPLN in Nashville reports that getting better still involves trial and error and a lot of patience.
CINDE LUCAS: I still have all of that kind of stuff.
BLAKE FARMER, BYLINE: Medical equipment is still strewn around the house, even though Rick Lucas 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.
RICK LUCAS: See; I've been sitting around, not walking around today, so my lungs are not expanded.
FARMER: But he's come a long way. In the summer of 2020, Lucas went into the hospital near his home in Hendersonville, Tenn. Pretty soon, he was transferred to a COVID unit in Nashville and put on a ventilator. He didn't come home for five months. And when he did, his wife, Cinde, had to do everything. 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.
R LUCAS: I had no doubt that I was going to be back to normal. In fact, I was wanting to go to work - what? - four months after I got home.
C LUCAS: I said, well, you know what? Just get up and go. You can't drive. You can't walk. But hey; let's go in for an interview. Tell me how that works.
R LUCAS: It was a year and two weeks after I got home from the hospital that I went back to work.
FARMER: He's been taking short-term assignments this year in his old field as a nursing home administrator, but he's still on partial disability. It's estimated that there have been millions of Americans with long COVID symptoms, and each experience is unique. For some, the lingering symptoms are worse than the initial sickness. Others, like Lucas, were on death's door and have just had more of a roller coaster of recovery than you'd expect. Lucas had the brain fog, fatigue, depression. He'd start getting energy back, then go try some light yardwork and end up in the hospital with pneumonia. And there's really no telling why some are shaking the symptoms after a few years and others aren't getting better, says Dr. Steven Deeks.
STEVEN DEEKS: There's absolutely nothing anywhere that's clear about long COVID. We have a guess at how frequently it happens, but right now, we're really - everyone's in a data-free zone.
FARMER: Deeks is an infectious disease specialist at the University of California, San Francisco. Researchers are still trying to establish the underlying cause. Theories include inflammation, autoimmunity, even bits of the virus left in the body. Deeks says there need to be big national sites where researchers can work together on promising treatments. There are specialized COVID clinics established by dozens of big medical centers, casting a wide net for cures.
DEEKS: And I'm following this stuff on social media, looking for a home run.
FARMER: Patients, especially those who were perfectly healthy pre-COVID, are desperate and willing to try anything. But there's some tension building in the medical community on this grab bag approach. Dr. Kristin Englund says a bunch of one-patient experiments could muddy the waters for research. She oversees more than 2,000 long COVID patients at the Cleveland Clinic.
KRISTIN ENGLUND: I'd rather not just kind of one-off try things with people because we really do need to get more data and evidence-based data. So that means we need to try and put things in some sort of a protocol moving forward.
FARMER: It's not that she doesn't get the urgency. She's experienced her own long COVID symptoms. She felt terrible for months after getting COVID in 2020.
ENGLUND: Literally taking naps on the floor in my office in the afternoon.
FARMER: 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 so when they have symptoms, like where they get dizzy and their heart races when they stand up, that she can treat. Otherwise, there's a lot of focus on diet, exercise and mindfulness. But other doctors are throwing all sorts of things at the wall. At the Lucas house in Tennessee, the kitchen counter can barely contain all the pill bottles.
C LUCAS: This is the one, memantine. That was for memory. We discovered his memory was worse.
FARMER: But other pills seem to help. Cinde Lucas suggested testosterone, and their doctor gave it a shot.
C LUCAS: He said, you know, I hadn't thought about that, but I bet that would work. And it did. We saw a huge improvement in his energy.
FARMER: That doctor was Stephen Heyman, who leads the long COVID clinic at Ascension Saint Thomas.
STEPHEN HEYMAN: People like myself are getting a little bit out of - over my skis, trying to look for things that I can try.
FARMER: Heyman's also right there struggling through long COVID. He thought he was past the memory lapses and breathing trouble, then caught COVID a second time and feels more fatigued than ever. He's looking at medications used for addiction and cholesterol, and he's decided he may just have to be a guinea pig himself.
HEYMAN: Directly, I'm going to have to do - use my expertise to try and find out why I don't feel well.
FARMER: Heyman says he doesn't have years to waste waiting for a proven long COVID cure. For NPR News, I'm Blake Farmer in Nashville. Transcript provided by NPR, Copyright NPR.