For six months, Jessica Lovett wasn’t strong enough to pick up her then 2-year-old son.
She and her husband Dave Lovett both got COVID-19 in June 2020 after he went back to work as a musician in a local bar. He was sick for 12 days.
“I’m still going on 14 months,” said Jessica Lovett, 41.
Initially, she had gastrointestinal distress, a migraine, chills then sweating and extreme fatigue. Then a week later the brain fog set in.
“It was like I was intoxicated,” she said.
Her heart would race. She had shortness of breath. Showering or walking up stairs became difficult. She spent much of her time in bed. Her symptoms continued as she went from doctor to doctor to try to get help. The previously healthy mom who said she used to be “a beast” at Orange Theory fitness classes was unable to work at her job as an event planner for an Austin music school and had to have other people watch her toddler.
Lovett has what is now known as long COVID, when symptoms of COVID-19 last beyond the initial infection.
UT Health Austin, the clinical arm of Dell Medical School at the University of Texas at Austin, began a post-COVID-19 program in July to both study people with long COVID and help treat them. The medical director of that program, Dr. W. Michael Brode, said that during the first four weeks of symptoms, it’s considered acute COVID-19. Symptoms that linger from four to 12 weeks are labeled subacute COVID-19. People with symptoms continuing past 12 weeks are considered to have long COVID, so called long-haulers.
There’s a lot we we don’t know about long COVID, Brode said. Different studies estimate that 10% to 30% of people infected with COVID-19 develop long COVID.
Since the pandemic began, more than 100,000 people have been diagnosed with COVID-19 in Travis County, 50,000 in Williamson County, almost 25,000 in Hays County, and almost 9,000 in Bastrop County.
Long-haulers fall into three categories, Brode said:
- People who were severely ill in the hospital and have scars and organ damage from COVID-19,
- People who needed oxygen but are slowly recovering over a long period, and
- People who had mild to moderate symptoms and recovered at home, but then develop new symptoms.
“The third group is the most troubling,” Brode said.
They can have some pretty severe symptoms of long COVID that are worse than the initial infection, he said, including severe fatigue, brain fog, and an inability to regulate body temperature or blood pressure.
Bethany Meier, 44, said she had about 100 symptoms when her COVID-19 lingered after her April 2020 initial infection. They included hair loss and stroke-like symptoms of slurred speech. Her biggest remaining symptoms are asthma, which she didn’t have before COVID-19, and allergic reactions to things that never bothered her before, including many foods. She carries an epinephrine injection pen with her wherever she goes.
She had no pre-existing conditions and was active, swimming and hiking, as well as walking every day.
“When I got diagnosed (with COVID-19), I expected to spend two weeks in bed binging Netflix and then I’d be back to normal,” said Meier, an online course builder at UT. Now, when she breathes, “it feels like I’m wearing a corset or like I’m drowning. I use three different inhalers daily.”
Researchers find long COVID commonalities
Brode and other specialists and researchers are seeing some common themes: Long COVID is more prevalent in women, more prevalent in people who have had more initial symptoms and more prevalent as you age. Previously healthy people are getting long COVID, as are children.
Texas Children’s Hospital in Houston has set up a pediatric clinic for long COVID. Dr. Sara Kristen Sexson Tejtel, who runs that clinic, is seeing similar symptoms in children as present in adults: Youth with long COVID have trouble concentrating, fatigue, headaches, anxiety, irritability, trouble getting out of bed and chest palpitations, among other things.
Tracy Galindo’s three children — Izabella, 18, Izaac, 12, and Lorenzo, 8 — all got COVID-19 in July 2020, as did her husband. She did not. Izabella was the sickest of all of them, with body aches, a cough and sore throat. Tracy Galindo’s husband also had symptoms, but the boys did not.
Her children previously had been healthy and hardly ever sick, Galindo said. Soon after having COVID-19, though, the boys were having trouble riding their bikes around their Baytown neighborhood.
“Lorenzo was so out of breath, his face was red,” Galindo said. Izabella had chest pains and shortness of breath.
Their pediatrician referred them all to the post-COVID clinic at Texas Children’s. Sexson Tejtel’s clinic found inflammation in Izabella’s heart caused by COVID-19.
Now a freshman at UT, she gets out of breath walking across campus. Izabella is considered immunocompromised now because of her heart and received her third vaccine shot on Friday.
The boys continue to be short of breath during activities. Izaac is fully vaccinated. Tests found Lorenzo, who is too young to be vaccinated, had some antibodies to COVID-19 in his blood. Still, Galindo said she worries about her family getting exposed to the virus again.
“Now a year later, what we’re still going through — it’s real,” Galindo said. “This is serious.”
Why does long COVID happen?
The National Institutes of Health has put $1.15 billion toward researching the new disease.
Brode said some research shows it may be caused by an on overactive immune response to COVID-19.
This kind of response to a virus is not new. Brode said diseases like chronic fatigue syndrome and postural orthostatic tachycardia syndrome can be triggered by a virus. He said an 1810 Russian influenza outbreak caused neurological damage in an entire generation of people who got that flu.
While long COVID might have similarities to other diseases and outbreaks, Brode said, “there might be some components specific to COVID. We haven’t seen a virus on this scale.”
Doctors have no test for long COVID. Blood tests and other screenings and body scans often come back normal. By the time patients get to the UT Health Austin’s post-COVID program, Brode said, they have been suffering and often have been told it’s all in their heads.
“They feel vindicated,” Brode said, when the program acknowledges what they are feeling.
Lovett went to seven primary care doctors and saw more specialists than she can remember. She hired a functional medicine doctor and was told by multiple physicians that she was fine or that she just had anxiety, she said.
“Dr. Brode is unlike any doctor I’ve seen in the past 14 months,” Lovett said. “It was the first time I’ve been to the doctor where he knew more about long COVID than I did.”
Treatment for long COVID varies
People experiencing lingering COVID-19 symptoms should first go to their primary care providers to have some tests done and to try to treat their symptoms. If they don’t receive relief, then they should call the post-COVID program.
Brode and his team look for evidence of organ scarring, hormone imbalances and other markers that could cause symptoms. They then treat the physical symptoms. The program also takes a wholistic approach to care, Brode said, including physical therapy and mental health counseling. It also connects patients to resources, such as government assistance and help from nonprofit organizations..
He typically recommends a carefully managed return to physical activity, getting more sleep, improving their diets and not doing too much at once.
For the kids she sees, Sexson Tejtel said treatment includesphysical therapy and mental health counseling.
“You don’t want them to see themselves as the sick kid,” she said of the mental health therapy. “It’s harder to get back to the place where you’re the healthy kid.”
At first, they might feel worse when they start moving again, she said, but not moving gets them into a dangerous cycle that makes it harder and harder to start. Pacing is important. She has high school athletes slowly re-enter sports because too much activity will set them back and make their symptoms worse.
“They are sick for a long time,” Sexson Tejtel said. “You don’t get better overnight. It takes a while … but they are slowly improving.”
For COVID long-haulers, disease end is unknown
Brode and other doctors cannot tell patients how long their symptoms will last because this is a new disease, but most start to see improvement by the one-year mark.
Alex Carranza, 34, saw improvement within months, but it still felt like a long time. When he got COVID-19 in December, he woke up with a fever.
“I had never had a fever in my life before,” he said. “I had never been sick a day in my life.”
A physician assistant who works at Baylor Scott & White Medical Center Round Rock, Carranza said it “felt like you had been hit by a bus” once the fatigue set in. He couldn’t sleep, yet he needed to sleep. He couldn’t get up. He couldn’t lift his arms to comb his hair. The most difficult part of his day was taking a shower, and then he would go back to bed. He had to have other people take care of his dog.
He had an extreme headache, ringing in his ears and blurry vision and was tested to make sure he wasn’t having a stroke. He was hospitalized for six days to have steroid infusions to help some of the symptoms.
“In January, I thought I was going to be bed-bound,” Carranza said, but he slowly began to get better. He had to go back to work two months into his recovery because he was out of sick time, but he still had blurry vision and fatigue. He continues to have ringing in his ears.
When he got sick, Carranza was five days from being vaccinated for COVID-19, as the vaccine was becoming available for health care workers.
“I feel like I am a poster child for why you should be vaccinated,” Carranza said. “I had no risk factors whatsoever to have such severity and degree of COVID.”
Carranza received the vaccine in April and May and said he feels it helped him.
Brode said that about 25% of long-haulers feel better after vaccination, about 5% feel worse and the rest see no change.
Lovett has found some relief from antihistamines, supplements, hydration and pacing herself carefully. She now can take care of her son independently a few days a week, but she still searches for words and deals with fatigue.
Meier has tried many things but said the most helpful have been a low-histamine diet, staying hydrated, antihistamines, managing stress and pacing herself.
“I still have to carefully manage my day-to-day,” she said.
The mom of four children said some days she feels semi-normal and other days her heart races, she has asthma attacks, extreme body aches or fainting spells. The hardest thing for Meier has been “not feeling like myself anymore, and not knowing whether I will ever feel like myself again,” she said. “There is a lot of grief involved.”
Lovett, Carranza, Galindo and Meier all encourage people to get vaccinated.
“You just don’t know how your body will react to getting COVID,” Meier says. “It could be like a cold, or you could end up on a ventilator. You could end up with no symptoms, or you could have to deal with long COVID. Right now, there’s no way to know.”
How to get help and support for “long-haulers”
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.
Jessica Lovett and others have created a Facebook group for local long-haulers: facebook.com/groups/atxcovidlonghaulers