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Some Coronavirus Patients Are Reporting Symptoms That Last Months. Nobody Knows Exactly How to Treat Them

12 minute read
Updated: | Originally published:

Kayla Brim laughed when she learned it could take 10 days to get her COVID-19 test results back. “I thought, ‘Okay, well, within 10 days I should be fine,’” she remembers.

That was on July 2. More than a month later, Brim is still far from fine.

Prior to the pandemic, the 28-year-old from Caldwell, Idaho, juggled homeschooling her two kids with her work as a makeup artist—she was supposed to open her own salon in July. Now, she suffers daily from shortness of breath, exhaustion, excruciating headaches, brain fog, neuropathy, high blood pressure and loss of taste and smell. She feels like “a little old lady,” completely knocked out by simple tasks like making lunch for her children. She’s working just enough to help pay the bills and the lease on her empty salon, but she has no idea when she’ll be able to work full-time again, and no idea how she and her husband will manage financially if she can’t. “Half of my day is spent trying to sleep, and the other half of it is trying to pretend like I’m okay—and I don’t know when I’ll be okay,” Brim says.

This is “long-haul” COVID-19. Even young, healthy people can become long-haulers (as many call themselves), left unable to work, lead a normal life or, some days, get out of bed. The consequences for each individual can be devastating—and at scale, they’re staggering. Over time, long-haul coronavirus may force hundreds of thousands of people out of work and into doctor’s offices, shouldering the double burden of lost wages and hefty medical bills for the indeterminate future. To treat them, the health care system may have to stretch already-thin resources to the breaking point.

It’s going to be “an impending tsunami of patients…on top of all the [usual] chronic care that we do,” says Dr. Zijian Chen, medical director of the Center for Post-COVID Care at New York City’s Mount Sinai Health System, one of the country’s only clinics devoted to caring for patients in the aftermath of coronavirus infection. “At some point it becomes very unsustainable—meaning, the system will collapse.”

When most people think of COVID-19, they imagine two possibilities: a flu-like illness that clears on its own, or a life-threatening condition that requires ventilation and a hospital stay. It’s not hard to see how the latter scenario leads to long-term damage. Mechanical ventilation is incredibly hard on the lungs, and days or weeks spent sedated in a hospital bed can sap physical and mental strength. In a small study published in 2011, nearly all the participants who needed intensive treatment for a severe lung injury reported decreased physical ability and quality of life five years after leaving the hospital. Some took years to return to work. Hospitalized coronavirus patients may face a similar fate.

But with COVID-19, it’s not just the sickest who face a long road back. A July 24 report from the U.S. Centers for Disease Control and Prevention (CDC) found that, out of about 300 non-hospitalized but symptomatic COVID-19 patients, 35% were still experiencing symptoms like coughing, shortness of breath and fatigue up to three weeks after diagnosis. (By contrast, more than 90% of non-hospitalized influenza patients fully recover within two weeks.) Recovery from COVID-19 can be a drawn-out process for patients of all ages, genders and prior levels of health, “potentially leading to prolonged absence from work, studies, or other activities,” the report noted.

The CDC’s surveyors only checked up on people a few weeks after they tested positive for coronavirus, but emerging evidence suggests a large subset of patients are sick for months, not just weeks, on end. Dr. Michael Peluso, who is studying long-term COVID-19 outcomes at the University of California, San Francisco, says about 20% of his research participants are still sick between one and four months after diagnosis.

Kayla Brim with her family, outside their home in Caldwell, Idaho, on Aug. 11. Brim has been sick with COVID-19 since early July.Angie Smith for TIME

The implications of that problem are enormous. If even 10% of the more than 5 million (and counting) confirmed COVID-19 patients in the U.S. suffer symptoms that last this long, half a million people are already or could soon become chronically ill for the foreseeable future.

When Mount Sinai opened its Post-COVID Center in May, the hospital advertised it as the first in the country; since then, a handful of others have opened in states including Colorado, Indiana and Illinois. Mount Sinai’s clinic was modeled after the practice the hospital opened to treat survivors of the 9/11 terrorist attacks. “It’s very similar. It’s a new group, and they need special care,” Chen says. The biggest difference, he says, is the size of the group. Significantly more people have survived COVID-19 than were directly affected by 9/11. Mount Sinai has only scratched the surface of that demand, treating about 300 people so far. The wait time for new patients extends into October.

The challenge for doctors like Chen is that nobody really knows why long-haul COVID-19 happens, let alone how to treat it. Other viral diseases with long-term symptoms, such as HIV/AIDS, offer some clues, but every day in the clinic is essentially uncharted territory. One hypothesis is that the virus persists in the body in some form, causing continuing problems. Another is that coronavirus pushes the immune system into overdrive, and it stays revving even after the acute infection passes. But at this point, it’s not clear which theory, if either, is right, or why certain patients recover in days and others suffer for months, Peluso says.

Plus, just as there’s huge variation in acute COVID-19 symptoms, not all long-term patients have the same issues. A researcher from the Indiana University School of Medicine in July surveyed 1,500 long-haulers from Survivor Corps, an online COVID-19 support group. They reported almost 100 distinct symptoms, from anxiety and fatigue to muscle cramps and breathing problems. A JAMA Cardiology study published in July suggested many recently recovered patients had lingering heart abnormalities, with inflammation the most common.

Some long-term COVID-19 patients have abnormal test results or damage to a specific organ, giving doctors clues as to how they should be treated. But for others, there’s no obvious reason for their suffering, making treatment an educated guessing game. “We don’t know why they [still] have symptoms. We don’t know if our techniques are working,” Chen says. “We don’t know if they’re going to get back to 100%, or 90%, or 80%.”

With little evidence, some doctors turn coronavirus long-haulers away or try to convince them their symptoms are psychological. Marcus Tomoff, a 28-year-old in Tampa, Fla. who is in his second month of debilitating fatigue, back and chest pain, nausea and anxiety after a bout of coronavirus, says he hasn’t been taken seriously by friends or even his doctors. “Several times I’ve cried in front of my doctors and they say, ‘You need to deal with this, you’re young,’” he says.

The haphazard testing system in the U.S. has further complicated patients’ searches for care. Mount Sinai’s Post-COVID Center, for example, only accepts patients who tested positive for COVID-19 or its antibodies, and Chen fears potential patients who couldn’t get tested or got false-negative results may be falling through the cracks. The best he can do right now is refer them to specialists and hope they find a doctor who can help.

For 46-year-old Andrea Ceresa, getting better is a full-time job—minus the paycheck. Ceresa had to stop working as a New Jersey dental office manager after she got sick in mid-April with what she and her doctors believe was COVID-19. (She tested negative for the virus and its antibodies, but her doctors think they were false negatives.) More than 100 days later, she’s in regular contact with her primary care physician, an integrative care doctor and a rotating cast of specialists who she hopes can treat her lingering gastrointestinal problems, hearing and vision issues, weight and hair loss, heart palpitations, migraines, brain fog, neuropathy, fatigue, nausea and anxiety. She finally got an appointment at a post-COVID program after weeks of waiting, but she’s mostly been left to cobble together her own care team.

Ceresa has paid for her own health insurance through the federal COBRA program since she stopped working, which has put her in a precarious financial state. “I have a stack of bills and I just am starting to open them now,” she says. “I’m definitely, at this point, going to be in the hole thousands of dollars. I’m collecting unemployment. I know I’m going to have to go on disability.” Even then, she says, it may not be enough to pay her bills.

There may soon be a lot of patients like Ceresa, says Dr. Bhakti Patel, a pulmonologist at University of Chicago Medicine who studies the long-term effects of critical care. Patel says patients with long-term issues after surviving coronavirus may face a number of obstacles. Patients who remain too sick to return to work (or who are unemployed due to the economic climate) may lose employer-sponsored health insurance at the moment they need it most. Younger patients who do not qualify for Medicare but need public insurance will likely be funneled toward Medicaid, which Patel says is “already over-stretched.” The services long-haul coronavirus patients may need—like physical therapy and mental health care—can be difficult to access, especially via public insurance networks like Medicaid, Patel says. That bottleneck will only get worse if more people need public aid.

As patients with an emerging disease, long-haulers also need “an intensity of outpatient care and expertise,” that goes beyond what the average primary care physician can offer, Peluso says. Very few doctors are experienced in treating long-haul symptoms—and even among those who are, “experienced” is a relative term. “This wasn’t a specialty three months ago,” says Chen.

People who can’t get into a dedicated post-COVID program may need to try a slew of specialists before they find one who can help, an expensive and tiring game of trial-and-error. (That’s assuming patients can get appointments with specialists like pulmonologists and neurologists, who are often few and far between outside of densely populated areas.) The sickest long-haul patients may also require pricey and difficult-to-access rehab or in-home care, on top of other medical costs. If a family member has to give up work to become a caregiver, that can also have serious economic consequences.

Some long-haulers will likely have to file for disability benefits, a byzantine system of its own that’s at risk of becoming overwhelmed. From 2008 to 2017, only about a third of people who applied for disabled-worker benefits in the U.S. were initially approved, according to Social Security Administration (SSA) data. It can be especially difficult for patients without a clear diagnosis or cause of illness, since SSA requires claimants to provide “objective medical evidence” of an impairment.

With few other resources available, thousands of long-haulers have sought help from virtual support groups like Survivor Corps and Body Politic, where members talk about their symptoms and celebrate signs of recovery. Programs like COVID Bootcamp 101, an online rehab series run by the nonprofit Pulmonary Wellness Foundation, are also trying to fill gaps in care. The scientific community is doing its best to catch up, but Chen says the government may need to help develop long-term solutions that address the economic consequences of long-term coronavirus symptoms, like a medical safety net program (as it has done for HIV/AIDS patients) or financial assistance for COVID-19 patients (as it did for 9/11 survivors).

Without clear answers about what happens next, all doctors can offer the public is yet another plea to take coronavirus seriously—because right now, the only surefire way not to become a long-hauler is to not get COVID-19 at all.

That doesn’t help people like Ceresa, though. After more than 100 days of feeling sick, Cersa says she’s still “baffled” this happened to her, an active and healthy woman who’s been a vegan for decades. She stayed home all April except for a couple trips to the grocery store and still had her life destroyed by the virus. She can’t work, sing in her band or plan her wedding after getting engaged a few weeks before the pandemic hit. She tries to comfort herself by thinking about ways it could be worse—it could be cancer—but the truth is, things are bad. “You try to be hopeful and think somehow, miraculously, you’re going to be better, and it doesn’t happen,” she says. “I can’t imagine living like this for another day, let alone the rest of my life.”

At this point, no one knows if she’ll have to.

This story has been updated to reflect Andrea Ceresa’s admission to a post-COVID program.

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Write to Jamie Ducharme at jamie.ducharme@time.com