WATERLOO — There’s hope for recovery for so-called “long COVID” patients, people who keep having symptoms weeks or even months after a positive coronavirus diagnosis. Dr. Raul Villacreses has seen it firsthand.
The clinical assistant professor of internal medicine has been one of the physicians working in the University of Iowa Health Care’s Respiratory Illness Follow-Up Clinic, the state’s only clinic dedicated to studying the ongoing symptoms of those who have gotten COVID-19.
Villacreses said that a couple of patients with acute respiratory distress syndrome caused by COVID — a deadly condition where fluid collects in the air sacs of the lungs — have improved, with CT scans as well as pulmonary function tests showing their lungs recovering.
“Even in ARDS — which is the most severe lung damage you can have — we have seen that they improved over time,” he said.
That, he noted, was without much treatment. Some patients were given inhalers to help them breathe. Others, he said, got better “because their body is just recovering from it.”
“So far, the frustrating thing is there’s not a magic bullet,” said Dr. Pradeep Ramesh, medical director of hospitalists at UnityPoint Waterloo. “There’s so much we don’t know about COVID.”
As health care providers work to figure out why some patients don’t recover right away from COVID-19 while others do, they want other physicians and the wider public to know: These people aren’t faking it. Long COVID is real and affects a not-insignificant portion of those who have gotten the virus.
“They’re not alone in this,” Villacreses said. “There’s definitely people working on it, and trying to get to the bottom of it.”
The respiratory illness clinic opened in June, just months after the first Iowans were diagnosed, and quickly found its services in demand. Other providers were wary of seeing patients who might still have COVID-19, or didn’t know what to tell them about persistent symptoms, Villacreses said.
“We went from two to three patients per day to 20 patients per day,” he said. They also went from four to eight physicians.
Those patients, who are at least 16 years of age and recovered from their initial illness, complained of ongoing respiratory symptoms like shortness of breath, coughing and chest pain.
They also experienced what Villacreses calls “neuro-cognitive issues” and nervous system issues like chronic fatigue, headaches, brain fog, joint pain and prolonged loss of taste and smell. Several “long haulers” interviewed by The Courier a few weeks ago had similar issues.
“We are recognizing right now there is a pattern,” Villacreses said, noting patients tend to complain about headaches in one spot on their head, for example.
Ramesh said although other viruses, like influenza, can also lead to neurological issues like confusion, agitation and even strokes, they seem to be more likely with COVID.
“These things are quite common in COVID patients — more so than any infection I’ve seen,” he said. It’s not certain if it has to do with blood vessels, clotting in the legs and lungs or even the brain’s own response. “It is quite frustrating. I don’t have answers to most of these.”
But there aren’t always patterns. Ramesh has seen patients with long COVID who had to be hospitalized, while some stayed home and napped it off.
“There’s no reason why some people get it and some don’t,” Ramesh said.
And various studies Ramesh has looked at haven’t been able to put a number on how many people will get long COVID, with some studies saying 10% and others up to 60%. He believes it would be the lower number when more studies are done.
“Even if once the dust settles and we come up with a number of how frequent this is — even if it’s 5% of all COVID patients — that is a lot of patients,” Ramesh said. “That’s a lot of people in the U.S. dealing with a lot of symptoms even after they recover.”
Studying the problem
To come up with a treatment, doctors first have to figure out what, exactly, they’re up against. Is the virus simply hanging around longer in some people, known as inadequate viral clearing? Is the immune system of some people overactive, trying to fight a virus long gone?
“These are some of the theories that have been floated around,” Ramesh said. “But, again, no one knows.”
So besides treating patients, the respiratory illness clinic is asking willing patients to have CT scans, pulmonary function tests and blood samples analyzed to pinpoint the causes.
“We recognized we had a need to have information for research purposes, and be able to share within institutions,” Villacreses said.
Eventually, Villacreses hopes research will include how the virus is impacting the brain, noting the frequent neuro-cognitive symptoms being seen. A few of the clinic’s patients have also shown symptoms like twitching, or what he said was a “significant neurological symptom,” though more commonly it was the loss of taste and smell.
“Truly, it’s a syndrome that needs to be better described and have more research about,” Villacreses said, noting patients were advised to “try to do their best to cope with it, in a way, until we can get more information.”
What you can do
But health care providers say you don’t have to suffer alone. The more patients visit their doctors, the more doctors are familiar with it — and the more research can be done.
“First, you seek help — don’t keep it on yourself — because we might be able to find some explanation of how you’re feeling and get to the bottom of it,” Villacreses said.
Providers can also rule out other illnesses or conditions that may have arisen coincidentally, or been exacerbated by a COVID diagnosis, Villacreses noted.
“Although we are lung doctors, we are broad,” he said.
Ramesh shared Villacreses’ optimism that most patients will see most of their symptoms go away over time.
“Make sure that you are well hydrated, have a good diet, sleep well, exercise well and we just hope that things get better,” Ramesh said.
But a lack of treatments doesn’t mean providers don’t believe you, he noted.
“Maybe people ... dismiss these symptoms, but these are very real, and they can be quite debilitating,” Ramesh said.
And know that, at least for some people Villacreses is studying, long COVID isn’t permanent.
“What is reassuring is we are seeing improvement in our patients, not only just in respiratory symptoms but also the patients that were complaining of brain fog,” Villacreses said. “I think it’s too early to tell, but we’re hoping that this is going to be the trend.”