AUSTIN, Texas -- Doctors at UT Health Austin have been trying to solve the puzzle of why some COVID-19 patients remain sick for months or now years.
Since last July, people who have what some call long COVID or long-haulers COVID have been treated at a post-COVID-19 program at UT Health Austin, the clinical arm of University of Texas Dell Medical School.
"Now, we've learned a lot," said Dr. W. Michael Brode, the medical director of the post-COVID-19 program.
People who continue to have symptoms from COVID-19 long after the initial infection fall into three categories:
** People who were hospitalized and were even on a ventilator who have lingering symptoms from the ventilator and recovering from a serious illness. They typically get better within six months to a year.
** People who have lingering symptoms such as a cough that can go on for three to six months, as a cough can with other illnesses.
** And there are people whose COVID-19 infection triggered a new disease, Brode said. This new disease is long COVID or post-COVID-19 or long-haulers COVID. Typically, these were not the people hospitalized for COVID-19. It doesn't seem to matter how severe the disease initially was. Instead, their autonomic nervous system has been disrupted by COVID-19. That's the system that controls such things as breathing, heartbeat and digestion.
"This third group the medical community doesn't know what to do with," Brode said.
Their common complaints often are fatigue similar to chronic fatigue syndrome and brain fog. They also might have shortness of breath, rapid heart rate, dizziness because of changes in blood pressure, problems with digestion, trouble regulating their body temperature and difficulty sleeping. A common phenomenon is post-exertional malaise, in which they actually get worse after physical or mental activity.
People also can experience food allergies or sensitivities that they have not had before, or they might have rashes. Some people also experience heightened anxiety or new anxieties.
Brode said that, while long COVID can happen to anyone, there are some definite groups of people that it seems to happen to more often: otherwise healthy women in their 30s and 40s; men in their 40s and 50s; and teenagers.
We still don't know how long these symptoms will last, Brode said.
"We have people who were sick in March and April of 2020 who are not fully recovered," he said.
The program is now seeing about 150 patients.
What happens in long COVID?
COVID-19's effects are still being researched, but some clues can be found in previous viral outbreaks, as well as less talked about side effects that can come after any virus.
"In some ways, I'm becoming a student of history," Brode said. "This clearly happened after the 1918 Spanish flu and the 1890s flu."
Long COVID is the body's reaction to the COVID-19 virus, which is a systemic disease that invades everywhere. COVID-19 is happening in the vasculature — the body's arrangement of blood vessels. Because COVID-19 is new, it's a disease that the body doesn't recognize to know how to handle properly.
Researchers have looked at skin biopsies in people with long COVID and found small fiber neuropathy, or damage to the smallest nerves in the body. Those nerves regulate the body's sensory perceptions. These same small nerve cells also are found in the nose, the ears, the heart and lungs, which is why such COVID-19 symptoms as loss of smell, difficulty with balance, rapid heart rate or shortness of breath might continue.
Unlike people who had severe COVID-19 and were hospitalized and on ventilators, people with long COVID don't have damaged lungs or damaged hearts, at least not that shows up on tests, Brode said. It could be that current tests aren't good enough to detect the small fiber damage, he said.
Instead, the people who have long COVID might not have anything wrong with their lungs or heart, but the autonomic nervous system thinks they do. It's like the body is still sending signals that it's experiencing the virus and needs to react, triggering rapid heart rate and shortness of breath.
Treating variant by variant for long COVID
Right now, the Austin program is working with people who were infected in the first three waves, through the delta variant. It is too early to treat people who got the omicron variant because the center typically starts working with people who have had symptoms for at least three months.
Brode has not seen any difference between people who were infected with the original coronavirus and people infected with the delta variant. He suspects in a few months he won't see a difference in people infected with omicron compared with delta or earlier variants.
"It's hard to prognosticate," he said, but the hope is that there might be less long COVID with omicron because of the number of people who have been vaccinated. Vaccination tends to reduce the symptoms of the virus in a breakthrough case. The hope is that, if the COVID-19 virus is a trigger for long COVID, perhaps the vaccine can help protect against that, "but it doesn't bring it to zero," he said.
He estimates that right now about 4% of people who have had COVID-19 fall into the third category of people and will have long COVID. His hope is that with omicron, it might get to as low as 1% for people who had that variant.
How doctors are treating long COVID
At first, doctors were treating each symptom to try to ease those. Now, they are leaning on treatments that have worked for chronic fatigue syndrome or dysautonomia — when your body can't regulate its autonomic nervous system. Some antidepressant medications that are more stimulating have been shown to be helpful with fatigue and anxiety. It also helps with inflammation in the brain.
Doctors are prescribing physical therapy, but not standard courses in which you push through to build up strength. New protocols have been written to provide physical therapy designed for people with post-exertional malaise. That means slowly getting moving again.
"I have not met anyone who pushing through that wall is effective," Brode said. "In all scenarios, it makes it worse."
Doctors also can prescribe mental health therapy to help with the long-term effects of having a chronic illness.
Much of the other therapies are about treating the symptoms. Melatonin two hours before bedtime is suggested for people who are having difficulty sleeping. For people who lost their sense of smell, nasal steroids and smell therapy can help regain that sense. People with daily headaches are offered medications.
There have yet to be targeted therapies specific to long COVID, but Brode is hopeful there will be and that the post-COVID program at UT Health will be able to participate in clinical trials for those.
What to do if your COVID-19 symptoms linger
Most lingering COVID-19 symptoms will start to get better within four to 12 weeks after the initial infection. See your primary care physician if they are getting worse, there are new symptoms, or it's been four weeks without improvement.
Treat the symptoms by doing such things as using over-the-counter cough medicine for cough or acetaminophen for headache. If you're experiencing gastrointestinal issues, try smaller meals more often and stay hydrated.
If you are dizzy when getting up, get up slowly to allow your blood pressure to adjust. Brode said he has seen a lot of people in the hospital after COVID-19 because they have fallen.
If it's exhaustion or brain fog, don't try to push through it and do too much; that can make symptoms worsen. Take frequent breaks and slowly build back up to your usual level of activity.
"I think this is a time to really listen to the body, give yourself some grace and just rest when your body says so," Brode said.
But if you're having trouble getting back to your usual activities, physical therapy from someone who knows how to treat people after COVID-19 is important, Brode said.
If things haven't improved by three months, ask for a referral to the post-COVID program.
For patient resources and more information about the post-COVID program at UT Health Austin, visit uthealthaustin.org/clinics/services/post-covid-19-program or call 1-833-882-2737.
