SALT LAKE CITY — Christine Maughan knew something was off when she could no longer taste Sriracha, a spicy Thai chili sauce.
It happened in March, when COVID-19 was just beginning to creep into Utah and little was known about the new disease. When she also developed a rash, she thought it was just an allergic reaction.
But a few weeks later, Maughan was still experiencing symptoms like painful shortness of breath. “Whenever I would breathe, it felt like there were thousands of tiny knives in my chest,” she recalled.
By then, COVID-19 testing in Utah had opened to anyone with at least one of six symptoms, including cough, shortness of breath, sore throat, muscle aches and chills, or decreased sense of smell or taste. Maughan tested positive for the new coronavirus, prompting 28 days of home isolation.
Seven months later, “I’m not the person I was before I caught COVID,” the 38-year-old says.
Maughan is one of hundreds of Utahns who say they’re experiencing what’s recently been termed “long COVID,” which can include a range of symptoms including inflammation, chronic fatigue, shortness of breath, brain fog and heart issues, among other things.
One Utah “long-haulers” Facebook group has grown to more than 500 people.
As many as 10% of COVID-19 patients experience symptoms for more than three weeks after their diagnoses, with some still having issues months later, according to international studies.
“We do know ... a number of post-viral syndromes that occur and are a little better described than what we’re seeing in COVID, but there is some precedent for there being a subset of individuals who persist in having symptoms after a viral infection, including fatigue, muscle aches, joint pains, any number of psychiatric conditions including depression and anxiety,” said Dr. Adam Spivak, infectious disease physician at University of Utah Health.
Early research shows that the coronavirus is having serious consequences on the cardiovascular system.
However, Spivak said, “There’s still a lot of unknowns as far as what’s happening.”
Clinics dedicated specifically to treatment for those suffering from post-COVID-19 symptoms are cropping up across the U.S., where doctors hope to find answers, including in major health care systems including New York’s Mount Sinai and Mayo Clinic.
Maughan, the mother of an 8-year-old daughter, says that although she took precautions against the disease, she assumed that if she got it she’d be better within a few weeks. Though she’s grateful she survived and didn’t need hospital care, she’s now unable to do much of what she used to enjoy, including skiing, biking and hiking.
As part of a University of Utah Health study, Maughan said she was diagnosed with decreased function of her large blood vessels due to the coronavirus.
“I’ve worked up to a mile walk in my neighborhood, which is good, but it’s nothing compared to what I used to do,” Maughan said. “And the worst symptom of all is just the debilitating fatigue. It’s really hard. It’s hard to get through the days when you have that level of fatigue.”
University of California, Davis in Sacramento recently formed its own post-coronavirus clinic, in part because health care providers in its system contracted the disease and still experienced symptoms after they recovered from the initial infection.
“Typically very robust, younger, athletic type folks who, they just noticed that their performance when they would go running or bike riding — they just didn’t feel quite the same,” Dr. Mark Avdalovic, director of UC Davis’ Post-COVID-19 Clinic told the Deseret News.
While patients were complaining of similar symptoms across clinics, university officials decided to combine efforts in a “comprehensive way” from the beginning in order to examine patterns and any abnormalities between patients, Avdalovic said.
Patients seeking care at the clinic range from those who were hospitalized when they had active COVID-19 infections to those who had only minor symptoms. For those who did have serious illnesses during their active infections, some residual symptoms are expected.
“That could be anywhere from issues with their lung capacity manifested by shortness of breath and exercise endurance issues, some of them certainly have some of the side effects of being so sick and in the ICU in that it’s affected their muscle fitness, the endurance of their muscles — so they have some weakness, some deconditioning,” Avdalovic said.
But many weren’t very sick when they had COVID-19, and “it’s really many weeks later that they start to notice some unusual symptoms.”
The Post-COVID-19 Clinic gives all patients a basic diagnostic test, lung function tests and lung imaging, as well as a review of their symptom history and how the symptoms evolved. Some also receive tests that identify ongoing inflammation, and an echocardiogram — which is an ultrasound of their heart — especially if they have persistent shortness of breath, Avdalovic said.
Many of the patients seen at the clinic continue to experience physical issues including a mild cough or decreased exercise endurance. But some of them feel their concentration isn’t as good as it used to be, they continue to have lack of smell, some have bizarre symptoms in terms of muscles and nerves, tingling in their hands, and feeling like their hands are cold when it’s not really cold, according to the doctor.
With younger adults who have ongoing symptoms after COVID-19, Avdalovic said doctors in the clinic haven’t discovered anything about them that seems to make them vulnerable to the disease.
“This has been fairly random at this point,” he said.
He said he hopes the work happening at his clinics and others will help bring answers to those experiencing long-COVID symptoms.
“I think because we in the medical community are all motivated by the same thing, which is, we’re seeing these patients, we’re affected by the fact that we’re seeing them and they’re suffering, and we want to help them. ... If we can identify something that’s tangible that can be treated, we want to do that,” Avdalovic said.
He said he imagines medical systems in Utah and other states with large case counts will eventually develop their own post-COVID-19 clinics.
The creator of the Utah Long-Haulers Facebook group, Lisa O’Brien, continues to advocate for resources for those, like herself, who are still recovering from the disease months later.
“It’s kind of nice that we’re starting to get these diagnoses, but these things that we’re starting to get diagnosed with are very underrecognized and underresearched, so not a lot of people know about them,” O’Brien said.
Some of the friends she’s met in the Utah long-haulers network have received diagnoses of dysfunction of autonomic nervous system called dysautonomia, and chronic fatigue system.
“We’ve got several in our group who have not been able to go back to work because of this, some of them have lost insurance, and so I want to try and help ease the burden for them,” she said.
O’Brien is currently working with others to create a nonprofit dedicated to education and help for those suffering from long-term conditions due to COVID-19.
At University of Utah Health, an ongoing hydroxychloroquine study on newly diagnosed cases also comes with a promise of more answers about the long-term effects of the disease on some.
As part of the study, which has the goal of enrolling 400 people, patients complete questionnaires about their symptoms and have their blood drawn at one month and six months after diagnosis.
That will give doctors a better idea of how common long-haul symptoms are, Spivak said.
Spivak said he’s interested to see if those who develop long-term symptoms are more susceptible to reinfection, or less so compared to those who don’t develop long-term symptoms. As of now, doctors don’t know much about their immunity and development of antibodies that neutralize the virus.
“It’s not surprising that there are some folks that have post-infectious syndromes because we’ve seen that before. Whether those will be more severe or more prevalent, I think we don’t know yet. And I think it’s a very important thing to study because, again, none of us have ever been exposed to these pathogens before, and as far as we can tell, the virus strains that are circulating are more or less the same,” Spivak explained
“So what we’re seeing in terms of different responses to the disease, to the same illness, really reflects differences among people. It’s not like COVID-19 is a different virus ... but people are responding very differently to it. And that kind of variability, we see it in human disease, but there’s important things to understand about that. Who really is at risk for these long-term symptoms, is there a way to prevent them?”
He said the research team expects to learn more as many six-month results are returned in December and January.
And as Utah’s case counts continue to increase, Spivak noted that there’s no way to know how the disease might affect each person — and so we should do what we can to protect each other.