Understanding what's driving long covid is still largely a mystery to doctors

For Sean Carey, long covid proved fatal.

Carey contracted an early strain of covid in July 2020 when he and his wife, Meghan, lived in Daytona Beach, Fla.

“He had pain that was too inhumane to live with,” his wife said. “He had tremors that were like lightning bolts going through his body.”

He died more than three years later — on Oct. 1, 2023 — at age 51.

After getting sick, Sean Carey’s condition never really improved. The couple moved home to Monroe­ville in January 2021 to be closer to family.

Throughout her husband’s illness, Meghan Carey said some family and friends had trouble understanding why he wasn’t recovering.

“The last thing either of us ever wanted to do was to lay around the house by ourselves every day,” she said. “Sean felt like nobody wanted to listen and nobody believed us.”

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• 'I want to live': Long covid patients battle debilitating symptoms in Western Pa.

Long covid symptoms and whether they resolve for those afflicted largely remain a mystery.

There’s still no targeted treatment for long covid, said Dr. Briana DiSilvio, director of Allegheny Health Network’s Post-Covid-19 Pulmonary Clinic.

However, Dr. Amesh Adalja, a Pittsburgh-based senior scholar at the Johns Hopkins Center for Health Security, said the medical field is starting to gain knowledge about the biology of long covid.

A major finding recently discovered that long covid patients had abnormalities within the body’s complement system, an arm of the immune system, Adalja said. Some studies also are looking at the idea of brain fog and how in some long covid patients the blood-brain barrier is “leaky,” he said. The blood-brain barrier is a layer of cells that defends the brain.

What’s driving long covid at a molecular level remains unknown, said Dr. Michael Risbano, director of the Post-Covid Recovery Clinic at UPMC.

“If we don’t understand how long covid works, then we don’t really understand how to treat it,” he said.

Risbano, who is director of the invasive cardiopulmonary exercise testing program and a pulmonary vascular disease doctor, is the principal investigator for the RECOVER-Vital trial, a National Institutes of Health initiative utilizing the antiviral medication Paxlovid.

“Patients who have long covid may have ongoing virus that just hasn’t really (cleared),” Risbano said.

Paxlovid may decrease some autoimmune effects and inflammation as well as improve symptoms down the road, he said.

DiSilvio, who is associate program director for the pulmonary and critical care fellowship, a pulmonologist and critical care physician, said she looks toward vaccinations, masking and regular good hand hygiene as preventative methods.

DiSilvio said she is surprised there hasn’t been a targeted medication developed for long covid, especially considering how fast covid vaccines were rolled out.

She believes acute covid likely is being underreported because of the prevalence of home testing. There have been fewer acute covid patients at AHN, she said.

“They’re staying home and riding out symptoms,” DiSilvio said.

In previous years, the consequences of covid seemed more dire, and more people were vigilant about testing, she said.

“Now covid is being treated like other respiratory viruses,” DiSilvio said. “It’s become more commonplace.”

But that doesn’t lessen its severity.

Meghan Carey said her husband’s death certificate says he died from cardiac arrest and anoxic brain injury.

“He said he felt like he was in prison for not doing anything wrong,” she said. “His mental health declined throughout this time because of his feeling of loneliness.”

Sean Carey worked in the film industry in Pittsburgh. Meghan Carey said a documentary is being made about his journey.

Sean Carey ended up going to a nursing home in Ohio for subsequent treatment. He needed a breathing tube and kidney dialysis.

“I drove back and forth to see him four days a week because I still needed to work full time,” said Meghan Carey, who works in human resources at Federated Hermes in Pittsburgh.

On Aug. 12, Sean Carey was found unresponsive and was taken to Cleveland Clinic. He never regained consciousness and died about two months later.

Meghan Carey joined several support groups and started a Facebook prayer page for her husband. That page now has 1,500 members.

“Everyone should make sure they have an advocate in their lives,” she said.