Stuck in ‘COVID limbo’: What long haul patients in Austin are experiencing

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AUSTIN (KXAN) — As Austin manages its fourth surge of COVID-19, one group is still seeing patients of past waves.

UT Health Austin’s Post-COVID-19 Program is studying the long-term effects of the virus.

UT Health Austin, the clinical practice of Dell Medical School, said it is currently still seeing patients who experienced previous variants, like delta, but expect omicron patients in about three months.

Jenny Lorraine is a patient of the program, which offers clinical medical services, mental health services, care coordination and education to other providers, along with conducting research.

KXAN first spoke with Lorraine in June of 2020, about three months after initially contracting COVID-19 when undergoing a heart procedure.

“I think the worst thing was my bones hurt,” she said.

Although she said that has gotten a little better, it’s still one of many symptoms Lorraine feels nearly two years later.

“My ears ringing 24/7. I still get short of breath, and I still have, like, weakness. I still haven’t gotten like, my strength back,” she said.

Dr. W. Michael Brode, medical director of the Post-COVID-19 Program, said so far, they’ve seen about 140 long-COVID patients, which he says are those who have symptoms that last more than four weeks.

“We’re really seeing it comes in three different groups,” he said.

The first group is patients who ended up in the hospital. He said many now have heart damage and lung scarring.

“There’s a group that just has kind of persistent symptoms, usually cough, shortness of breath, fatigue that just lasts a while,” Brode said.

The third group, he said, has neurological symptoms.

“We are doing biopsies of the skin and looking at the nerves under the microscope and we’re seeing people with long COVID have fewer nerves or nerve damage directly,” he explained.

They think that’s what’s leading to problems like tingling and numbness.

“And their inability to regulate sweating, or their heart rate because that’s what those nerves regulate,” he added.

Dr. Brode says these folks are usually young and healthy — and more likely to be women.

They’re also seeing chronic fatigue and severe brain fog in adolescents between 14-24 years old.

“We’re also looking at anxiety and depression and how that is affecting people from their illness,” Brode said, as well as potential blood signatures that can help them detect who has long COVID and who doesn’t.

Lorraine is recovering from a second bout of COVID-19 she contracted at the end of December, after being fully vaccinated and boosted.

Some of her previous symptoms have come back, like fatigue.

“One day you’re, you know, active, and the next day, you have to rest every 10 feet. It’s really bizarre,” she said.

But she said going to the Post-COVID-19 Program and the resources they’ve connected her with has helped her recovery.

Brode said they are trying to expand their research to pediatrics, which Lorraine hopes will include her child, who also has long COVID.

“If somebody thinks they are still sick after they’ve gone through COVID… Don’t be afraid to ask your doctor,” Brode said.

The good news

There is some good news for folks who have are longing to taste their food once again.

“That is the one thing we actually know for certain: Why people lose their sense of taste and smell. It has been definitively shown it’s not the smell nerves in the nose are damaged, it’s the supporting cells and those structures,” he said.

Brode said those supporting cells come from stem cells that regrow, “and so almost everybody is regaining your sense of smell at one year.”

He also said their tests don’t show damage to lungs or the heart for COVID patients who didn’t get sick enough to go to the hospital.

“The question is, are tests not good enough to detect that small damage? But I think the reassuring part is that they’re not damaged enough for us to detect… which makes me really think, I think this is a problem inflammation and likely the nervous system more than organs themselves,” Brode explained.

He said that means there’s likely not any permanent damage to those organs.

Physical therapy uptick

One local physical therapy company said they’re seeing a change in their patients with long-term symptoms related to COVID-19.

Ben Morgan with Texas Physical Therapy Specialists said after the last surge, they saw patients who had trouble with fatigue.

Now, he said about 5-10% of their patients have had COVID-19 and his team is seeing more patients with lower back pain and muscle aches instead of respiratory and endurance, as he says was the case after the delta variant.

“My body hurts, my muscles hurt — not just the joints that we think of with the flu but also with the muscles, so we’re having more treatments around.. helping people deal through that,” he said.

Morgan advises that if you have severe lower back pain, you should see your primary care doctor.

If you have persistent low to moderate symptoms, you may want to see a physical therapist.

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