A few months ago, Lana Lynch had resigned herself to never getting better. Months after testing positive for COVID-19, she still felt fatigued, still got daily headaches, still had to carefully regulate how much she exerted herself each day. She was coming to terms with her new normal—until she didn’t have to.
After receiving her second dose of the Pfizer-BioNTech COVID-19 vaccine in May, Lynch, a 32-year-old from Texas, noticed that she wasn’t quite so tired anymore. She could get through a yoga class without hitting a wall. “I felt like I had some energy,” she says, “but I didn’t want to jinx it.”
After weeks of waiting for the other shoe to drop, she says, “I feel confident enough to declare myself cured.”
In recent months, a small but growing number of people with Long COVID—the name adopted by those who develop lingering health problems after catching the virus—are experiencing improvements like Lynch’s. These stories are anecdotal and far from universal. But after months of debilitating illness, even small improvements can feel like a new lease on life for those lucky enough to experience them. “Just knowing that it’s not really anchoring me down,” Lynch says, “is a huge weight off my shoulders.”
Experts believe somewhere between 10% and 30% of COVID-19 patients develop long-term symptoms, including fatigue, chronic pain, brain fog, shortness of breath and gastrointestinal problems, though the severity of these can vary. Doctors still aren’t entirely sure how to treat Long COVID or even what causes it, though there are two main theories: either remnants of the virus linger in some people’s bodies, or certain elements of the immune system rev into overdrive after exposure to the virus, essentially causing the body to attack itself.
No two Long COVID cases are exactly alike, which complicates the search for treatments. In one July 2020 survey, a group of about 1,500 Long COVID patients affiliated with the support group Survivor Corps reported almost 100 different symptoms. Some patients have visible damage to a particular organ, such as the lungs or heart, while others have no obvious reason for their suffering—their lab tests and scans come back normal, despite how sick they feel.
Until recently, there weren’t many stories of Long COVID patients getting better. In previous conversations with TIME, multiple experts have said it’s possible that Long COVID could last for decades or even the rest of a patient’s life, similar to myalgic encephalomyelitis/chronic fatigue syndrome, another debilitating condition that can follow viral illnesses. That may end up being true for some patients, but others are beginning to report improvements.
Dr. Federico Cerrone is a pulmonologist and the co-medical director of Atlantic Health’s COVID Recovery Center in New Jersey, which has treated about 500 Long COVID patients since it opened in October 2020. Some of their patients simply improved with time, Cerrone says, while others have had luck after working with sleep or behavioral health specialists. Some—but not all—Long COVID patients with persistent respiratory symptoms respond to drugs like steroids and bronchodilators, adds Dr. Gerard Criner, director of the Temple Lung Center in Philadelphia. Doctors are also getting better at spotting syndromes that may overlap with Long COVID, like the autonomic nervous system disorder known as POTS. But there is still not a “cure” for Long COVID.
“There seem to be some individual success stories, but I don’t know if I could tell you that one thing fits all,” Cerrone says. “Sometimes it works, and sometimes it doesn’t work. We’ve learned a lot, but there’s still a lot to learn.”
COVID-19 vaccination seems to help in some cases. Akiko Iwasaki, an immunobiologist at the Yale University School of Medicine who is studying how COVID-19 vaccines available in the U.S. affect Long COVID patients, says getting a shot seems to lessen symptoms, at least a little bit, for some sufferers. But some people feel no relief, and others feel worse, she says.
Iwasaki and her team are taking blood and saliva samples from Long COVID patients before and after vaccination to monitor changes in their immune responses. By comparing those results with any changes in symptoms, her team hopes to determine if vaccination can help lead to recovery. It’s possible that the vaccine-prompted immune response overrides the body’s attacks on itself, or that vaccine-produced antibodies help clear any lingering remnants of the virus, Iwasaki says, but as of now, those are just hypotheses. Depending on what she and her team find, the research could be impactful not only for Long COVID sufferers, she says, but also for people with ME/CFS and other post-viral illnesses.
Netta Wang, a 24-year-old from California who tested positive for COVID-19 in August 2020, can’t say for sure that the vaccine helped her feel better, but she did notice an improvement in her symptoms after getting her second Moderna dose in March. Around the same time, her doctor recommended that she begin exercising again to help rebuild her strength and energy. Wang was nervous, since many people with Long COVID feel worse after physical exertion, but was pleasantly surprised that she was able to ride a bike without relapsing. Her strength slowly returned and she now considers herself 95% recovered, though she’s not sure whether that’s thanks to the vaccine, physical activity or pure chance.
Dr. Hassan Sajjad, a pulmonologist involved in post-COVID care at Iowa’s Mercy Medical Center, says some of his patients have also had luck with physical therapy and physical activity. Physical therapy can help rebuild strength, improve organ health and minimize the risk of complications like inflammatory blood clots, he says. Still, as is typical with Long COVID, it’s not entirely clear why movement helps some people and makes others feel worse.
“I got very lucky. Health and bodies are very random,” Wang says. “I know lots of people who are still [sick] a year on, and I don’t think they’re doing anything wrong.”
With so little known about their condition, some Long COVID patients have taken recovery into their own hands. “[Doctors] can’t explain it themselves,” says Sherri Klipowicz, a 35-year-old from Colorado who got sick with what she believes was COVID-19 in March 2020, “so they’re really listening to us.”
Klipowicz started to feel better in February 2021, after months of tinkering with her diet, sleep and physical activity. She now practices restorative yoga, takes supplements like magnesium and glutathione, and follows a diet heavy on plants and low on gluten and dairy. She’s also working with an insomnia specialist, since she’s noticed her symptoms are worse when she sleeps poorly, and has tried ozone therapy, a controversial practice that involves infusing the blood with ozone gas. Ozone therapy has not been endorsed by the U.S. Food and Drug Administration, though some Italian researchers have suggested it could be used as a potential COVID-19 therapy.
Though Klipowicz can’t put her finger on what, exactly, worked for her, she says she now feels about 90% recovered after a night of good sleep. (Klipowicz received both doses of the Pfizer-BioNTech shot but doesn’t think it made the difference, since her improvement began before getting vaccinated.) She still struggles with shortness of breath, and doesn’t feel confident enough in her health to return to her consulting job—but, she says, “I’m able to be active. I’m able to go out for walks more, work in the yard. I can drive now because my cognition is better. I have independence back.”
And with each day her symptoms recede, Klipowicz says, she can more clearly envision a future without COVID-19, something that seemed impossible just six months ago.
Wang can relate to that feeling of hopelessness. She remembers desperately searching social media, looking for a single example of a person who’d recovered from Long COVID, and finding little comfort. And even though she feels she’s largely recovered, and has a lot to look forward to—after graduating from Stanford this month she’ll start an internship and begin job hunting—she recognizes that there are still scores of patients searching for relief. “I don’t want to forget about all the people that might have [Long COVID] for a long time, and all the other chronic pain patients that are still struggling and had been struggling before COVID,” Wang says. “Their situations don’t fit into our neat stories of getting sick and getting better.”
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Contributor: Jamie Ducharme