Melissa Mazur developed COVID-19 symptoms in March 2020 — and she’s still feeling them today. The 40-year-old from Philadelphia is what’s known as a long-hauler, someone who experiences often unexplainable and random symptoms months after getting the virus.
Mazur has suffered from insomnia, fatigue, swollen lymph nodes, shortness of breath, gastrointestinal issues, brain fog, and neuropathy in her hands and feet. Symptoms come and go, and constantly change.
“If you’ve ever seen the Disney movie ‘Inside Out,’ it almost feels like someone is in the control room of my body, pressing buttons at random,” Mazur said.
Similarly, Jenni Paradiso was diagnosed with COVID-19 in November and still is experiencing unusual symptoms.
The 49-year-old from Philadelphia has struggled with shortness of breath, exhaustion, changes in appetite, high cholesterol, weight gain, bloating, brain fog, and mood changes like depression. She also was diagnosed with a thyroid condition, which she believes worsened after she contracted the virus. Paradiso teaches fitness professionally, and she dances, but now she gets winded by physical activity.
“So … I can start training myself again little by little, but I just get winded easier than I ever would in my life,” Paradiso said.
There’s no clear explanation why people experience long COVID, and there’s no cure. Some long-haulers have reported their symptoms resolved after getting the COVID-19 vaccine. However, other long-haulers don’t experience any changes after getting the shot.
Since she was vaccinated in April, Mazur said, she hasn’t noticed improvement or worsening of her long COVID symptoms. But it’s difficult to pinpoint, she said, because her symptoms ebb and flow.
Within the past couple of weeks, Paradiso said, she has felt like she can move more easily, but she’s not sure if it’s because she’s been vaccinated, or if she’s progressing on her own.
Here’s what the medical experts know, and don’t know, about long COVID:
Why do some people get long COVID?
Physicians don’t have all the answers, but there are a couple theories, said Dr. Daniel Griffin, an infectious disease specialist and instructor in clinical medicine at Columbia University Vagelos College of Physicians and Surgeons.
One theory is that “viral persistence” causes long COVID. That’s when the virus is not cleared from the body of an infected individual, instead remaining in specific cells.
Another is that long COVID is driven by a problem with the immune system.
“It’s not the virus that’s making people with long COVID sick, it’s the immune response to the virus if it’s persistent,” Griffin said.
For patients who become severely ill with COVID-19, the intensive interventions required to cure them could have serious effects on the body, said Dr. Panagis Galiatsatos, assistant professor of pulmonary and critical care medicine at Johns Hopkins Medicine.
“So putting patients on breathing machines comes with ongoing consequences that they feel weeks to months later, from anxiety and depression to muscle wasting, because you keep them rather bed-bound until you take the breathing machines away from them,” said Galiatsatos, who treats patients at Johns Hopkins’ post-COVID clinic.
But for long-lasting symptoms that are directly caused by COVID itself, rather than medical intervention, there are three categories.
The first, Galiatsatos said, is that the symptoms are a part of the healing process.
“The analogy I give to patients here is think of a broken bone: When we take a cast off, it’s still going to hurt for a while as you repair it, reheal, and regrow that muscle. For a lot of patients, the injury that they experience to their lungs takes them a while for their lung to recover,” he said.
The second category includes patients who develop a new pathology or disease.
“Either one that they’ve always had — maybe they have childhood asthma, and it just kind of resurfaced — or it’s a whole new disease related to the lungs or other organs. That’s a smaller group of patients, not very common, but a smaller cohort,” Galiatsatos said.
The third category encompasses people who experience a collection of symptoms that physicians don’t have answers for, and that don’t fit into a pathology that physicians are aware of.
“So it means a lot more investigation and a lot more patient advocacy as we try to figure this out,” Galiatsatos said.
“But honestly, doing post-COVID-19 work now a year later, it doesn’t seem to have variables that I could predict. It does seem to affect more women than men, but for the men, they tend to have more diseases that we can kind of identify. For women, it tends to have a lot more diseases that are harder to put together in a consistent manner,” he said. “Even that gender identification isn’t one that I would say is consistent. It’s the one that, at the most, sometimes pops up with a potential pattern.”
“The challenge that we have is patients’ equilibrium is thrown off and we can’t get it back to normal, and the challenge is there isn’t a disease that their symptoms nicely fall under the category of. So from our standpoint, it’s a lot of thinking outside the box with such patients,” Galiatsatos said. “So really, this post-COVID situation really warrants physicians that kind of go back to the root of medicine, which has always been data-gathering and listening.”
Can long COVID cause permanent damage?
That’s another difficult question to answer, physicians say.
“COVID-19 came out in 2019, and survivors are still early on, and the notion of permanence is hard for us to kind of nail down,” Galiatsatos said. “We often see patients with fibrosis, which can face almost a permanent scarring of the lung, that itself resolves a few months later. So I don’t know. I really don’t.”
“We know patients who are ill from infection, from common viruses that we see, that result in significant health issues,” he said. “Most of these patients who survive other respiratory illnesses may experience symptoms for up to a year later, but they do self-resolve. So I try to prepare patients for that. But I’m hoping there is a self-resolution, even if we don’t have a medical intervention for about a year later.”
Can long COVID cause an autoimmune condition?
That all depends on what’s causing long COVID in the first place, Griffin said.
“That would fall into the issue that people bring up, either it just continues to be active, it could be tied to T cells, or it could be similar to something like lupus, where you’re making autoantibodies and those are causing neurological issues, they’re causing joint pains, actually causing a lot of symptoms we see in long COVID that actually are not that much different than a lot of people with immune disease,” he said.
Galiatsatos said it’s more common that patients who already had an underlying autoimmune disorder get worsening flares with long COVID.
“Things like, ‘It was well-controlled. I was barely on any medications. Now, I can’t control it,’” he said.
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