It started for Melanie Montano with a tightness in her chest, almost like someone was sitting on top of her. It was March 15, and she was sweating but freezing cold. And she had a strange “pins-and-needles” sensation on the back of her legs.
“It was as if I woke up in a totally different body,” she recalled.
Over the following weeks, Montano, 32, developed a fever, cough, stomach problems, and lost her sense of taste and smell like other sufferers of the novel coronavirus. Unlike most of them, though, her symptoms never went away. They kept coming and going in waves like a roller coaster that has kept her bed-bound for 78 days straight — through school shutdowns, shelter-in-place orders, protests over those restrictions, and now, state reopenings.
Those infected with the coronavirus are urged to self-quarantine for 14 days, partly based on the idea that symptoms usually last about that long. While the majority of people with mild illness recover completely in that time, doctors say they’re seeing a small percentage like Montano who remain sick for many weeks, or even months.
But with so little known about the virus, they’re unsure whether those symptoms suggest it is still alive in the body and creating continued havoc, or whether it has come and gone, leaving a lingering immune or inflammatory response that makes people continue to feel sick.
“The bottom line is we just don’t know,” said Adam Lauring, an infectious- diseases physician at the University of Michigan.
Juana Diaz, 62, from Washington, D.C., has had symptoms since April 3. They started with a headache and scratchy throat. She wasn’t concerned, she said, although “I never have headaches.” The following day, she lost her sense of taste and smell and immediately knew what was happening.
Cara Schiavo, a 31-year-old social worker from Cedar Grove, N.J., came down with something that looked like pinkeye on March 15, and then wound up in the emergency room when she developed a fever and other symptoms. Since then, “I haven’t had a day when I’ve been back to normal.”
Matthew Long-Middleton, 35, a radio journalist in Kansas City, Mo., was struck with fever, chills and typical flu-like symptoms on March 11, and has never fully recovered. “I sometimes try to work from bed, but sometimes just sitting up is too much,” he said.
Post-viral syndromes have been associated with numerous viruses in the past, but until the pandemic, they were considered relatively rare. In the case of COVID-19, researchers are unsure whether people with extended symptoms are simply facing a long recovery — or whether their illness will come to resemble something like myalgic encephalomyelitis/chronic fatigue syndrome, a complex illness characterized by profound exhaustion and sleep problems, or other conditions that can last for years, or a lifetime.
“COVID is a totally different animal,” said Bruce Farber, chief of infectious diseases at Northwell Health, New York State’s largest health system. “You see that with very few respiratory diseases. Even with influenza for the most part, you live or die.”
The virus also involves so many parts of the body — from the brains to the toes — that some symptoms may be due to damage to different organs that have not repaired themselves. Patients describe everything from a decrease in lung function to a persistent loss of taste and smell.
“It’s a pretty bad infection even in mild cases,” said Avindra Nath, clinical director of the National Institute of Neurological Disorders and Stroke at the National Institutes of Health.
Some patients with long-tail illness are testing positive, then negative and positive again for the coronavirus. Many scientists believe the tests are likely picking up dead virus — in studies, it has only been active nine to 11 days. But a few autopsies have shown the virus lurking in puzzling place like the spleen, creating continuing uncertainty. Nath, who is launching a study on the long-term trajectories and persistent symptoms of some COVID-19 survivors, said he hopes to answer some of these questions in the coming months as research begins to yield results.
“It is hard to know if this kind of long-tail phenomenon is more pronounced or more common” with this virus, Lauring said. “Or we are just seeing things that come to our attention because there is a heightened awareness. Because everything is new with COVID.”
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Before the coronavirus came into her life, Montano was a writing instructor from Teaneck, N.J., who commuted by subway, jogged for miles, went to bars and hung out with friends. But since she got sick, she’s been sleeping 14, 18, sometimes even 22 hours a day.
Her odyssey began the second week of March when she kept waking up gasping for air. She had a long video call with her primary care provider, who thought it unnecessary for her to come in. She asked about the coronavirus, but few people were infected then and she hadn’t traveled so her doctor thought it unnecessary to test her.
On March 24, her condition worsened to the point that she felt like she was choking. She went to Holy Name Medical Center, where they took a chest X-ray and tested her for the coronavirus (which, as she had guessed days before, was positive). Propped up in a wheelchair and attached to oxygen tanks, she waited for over five hours in an isolation room surrounded mostly by people on ventilators. She remembered nurses bringing in priests for last rites, and she could hear families breaking down outside.
“That was really terrifying. I was the only young one there,” she said.
By around 4 a.m., convinced she would never get a bed because people sicker than her kept arriving, Montano asked if she could leave and staggered out the door.
The second phase of Montano’s illness was more of the same except her coughing got worse, although, strangely, she was breathing more easily. Her friends dropped groceries in front of her apartment door while she struggled just to shuffle to the bathroom or fold laundry. Every few days, she tried to create an audio or video log to create a diary of sorts of her illness.
When her condition had not improved by April, the self-isolation began to take its toll.
On April 8, she texted her mother: “I would call 911, but what’s the point? For the hospitals to shove me into a corner and neglect me … I know it’s not their fault they’re inundated; it’s also not mine, re. seeking help.”
By mid-month, she said, she fell into despair as she started to recognize her symptoms were cyclical. She’d have a few days of feeling like she might be starting to get better until her fever spiked and she’d be very sick again.
This sickness has “rocked my world in a way that I never thought was possible,” she said in one video entry.
On Day 59, she ventured out in her car for the first time since her hospital visit, and took another video. She went to the Rite Aid drive-through to get tested for the coronavirus again on the advice of a physician. “Two to five days, I’ll know whether I test positive and still be clueless as to what that means,” she says into the camera.
In the third month of being sick, Montano’s fever broke, and she got her sense of smell back — but the searing heat she had felt in her lungs at the beginning of her illness returned.
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While Montano’s illness has consisted of a similar set of cyclic symptoms, Schiavo’s has been one of constant surprises.
On March 7, she developed what initially looked like pinkeye; on the 11th, a cough; on the 14th, diarrhea; on the 15th, fever; on the 16th, loss of taste and smell. On March 17, the chest pains started and she fainted — sending her to the hospital where she said doctors confirmed she had COVID-19 but felt she was stable enough to tough it out at home.
April brought more gastrointestinal issues, fatigue and muscle aches. In May, she developed a rash on her face and sores all over her mouth.
Schiavo has contacted her doctors multiple times, she said, and their explanation is always some version of: “Your body took a traumatic hit, and it’s going to take a while to recover.” She’s been treated with five rounds of antibiotics, two steroids and was given an inhaler to help with her breathing.
The most difficult part has been the isolation. “Dealing with this virus at home alone was the scariest thing of my life,” she said. “I did not see another person for 24 days.”
Schiavo feels fortunate her employer, a hospital, has let her counsel patients from home when she is able to do her job as a social worker. But some of her friends and family members remain confused — and, she believes, possibly skeptical that she’s still sick. A former high school athlete who was kickboxing or going to the gym every day before COVID-19, she said she has had barely enough energy to get out of bed for more than two months.
Over the past two weeks, Schiavo has been feeling somewhat better but still not normal. She recently completed another round of steroids for chest pain and achy joints. Any physical exertion still leaves her exhausted.
“I feel like I’m living in a nightmare,” Schiavo said. “I have literally cried, saying, ‘I just want to be back to myself.’ “
Long-Middleton, a triathlete, describes the illness as “mercurial” with better days and hours. After a full month of being extremely sick in bed, he is better, but struggles with lingering symptoms, including profound weakness and what he called a “buzzing/tingling/vibration/tremor sensation” that can make it difficult to walk, much less return to cycling, swimming and running.
“I’m better, but the hardest, most confusing thing about this is that I’m not well,” he said this week.
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Before she fell ill, said Diaz, the Washington, D.C., woman worked out five days a week and ran each weekend. She is scrupulous about eating a healthful diet.
But since shortly before April 8, when test results showed she was positive for the coronavirus, she has suffered symptoms that include fatigue, sore throat, poor appetite and minor lung congestion, but has never had the disease’s telltale cough or fever. She has never been hospitalized. Her sense of taste and smell has partially returned. She has been tested for strep and flu, treated for thrush and checked for less common ailments that might cause this cluster of symptoms, but all have come back negative.
By process of elimination, her physician has concluded that Diaz has a lingering form of COVID-19.
“The only conclusion has to be this has to be related to the patient having COVID-19,” said Ranit Mishori, a professor of family medicine at Georgetown University School of Medicine and Diaz’s doctor. She spoke generally to avoid violating patient privacy by speaking about one person’s case.
Mishori said she has seen a handful of patients with similar symptoms that have lingered since the beginning of the outbreak. “It’s incredibly frustrating for the patients and the doctors taking care of them,” she said. Some patients experience rotating symptoms — fatigue one week, headache the next, sore throat after that. “It changes and lingers,” Mishori said, but usually doesn’t become more severe.
“I can’t tell them that next week, they won’t have it,” she said. “Or it’s going to be for eight to 10 weeks. Or that it’s going away.”
On May 1, Diaz tested positive for the coronavirus again, though doctors have told her it’s likely the test is just turning up dead remnants of the virus. Still, her sore throat remains, and the disease has caused tremendous anxiety. She has been on administrative leave from her job since April 3 and is angry and frustrated.
As of this week — a little over two months into her illness — Diaz was finally feeling like she was just starting to get better with just a bit of lingering sore throat pain, congestion and drastically reduced endurance.
“I’m the fixer. I take care of everything,” she said. “I take care of my household. Something that happens to me that I cannot fix, I shut down. I feel like I have lost control.”