Long haulers turning to researchers to understand months-long symptoms

VIDEO: Long haulers turning to researchers to understand months-long symptoms

CHARLESTON, S.C. (WCSC) - Some COVID-19 survivors recover very quickly or don’t even know they have the virus. Others feel life-changing symptoms for weeks and even months on end.

Some of those patients, so-called “Long-haulers,” are turning to researchers to find out why they are still sick.

“I’m sick of being sick,” said Lowcountry mom Renn Kronsberg.

She’s used to full days and an active tennis schedule, but COVID-19 has changed her whole life.

“I could be having a great day and then all of a sudden 5 o’clock comes around, and I’m exhausted, physically exhausted,” she said. “Whereas before I was never like that.”

Kronsberg said she’s tested positive for COVID-19 three times since October but talked to experts at DHEC who said she’s no longer contagious. They aren’t sure why she’s still testing positive, she said, but she hasn’t stopped feeling the symptoms.

Kronsberg described experiencing body aches, extreme fatigue and shortness of breath. And she feels like her brain just isn’t working right.

“They call it brain fog,” she said. “I consider myself to be someone who’s on time. If I say I’m going to do something, I do it. But that has not been the case ever since I was diagnosed with COVID.”

She and other long haulers report an impact on their mental health, too.

“I think a little depression has started to set in especially with the no taste and no smell,” she said.

The CDC describes long haulers as people who still have COVID symptoms more than four weeks after infection.

UC Davis Health described them as patients who “have in theory recovered from the worst impacts of COVID-19 and have tested negative” but still feel some symptoms for no known reason.

One neurology study showed 85% of long-haulers reported brain fog, 68% have headaches, 60% experience numbness or tingling, 59% have changes in taste, 55% have loss of smell, and 55% feel muscle aches & pains.

MUSC Dr. Krutika Kuppalli said, “Actually there’s a name for it now. Post-Acute Sequalae Coronavirus. They call it PASC. There’s no official criteria for that diagnosis.” But researchers worldwide are now studying long haulers.

Kuppalli specializes in infectious disease. Live 5 asked her about the theory that in some long haulers, the virus has triggered an auto-immune disorder.

She says it’s just too early to know for sure.

“I think it appears like there’s some sort of very strong inflammatory response. We’ve seen it in other infections. For me, the one that comes most readily to mind is Ebola. We saw patients who had Ebola and developed post-Ebola syndrome. And I wouldn’t necessarily say it was an auto-immune syndrome, but we saw some inflammatory type syndrome in these people,” Kuppalli said.

Long-term symptoms aren’t necessarily rare, either.

One group of UK scientists estimated 10% of people with COVID have long-term symptoms.

Renn Kronsberg just joined a study with MUSC.

“Basically, I’m hooked up to a stimulator and a tablet that communicates to researchers your every day brain activity,” she said. The stimulators are noninvasive, she said, and she wears them for an hour at a time every day for four weeks starting this week.

Kronsberg is “hoping that me participating in this study will hope provide answers not only for me but for other long haulers.”

“Non-hospitalized COVID-19 ‘long haulers’ experience prominent and persistent ‘Brain fog’ and fatigue that affect their cognition and quality of life,” said one study in the Annals of Clinical and Translational Neurology.

I asked Charleston attorney David Pearlman about workers’ rights if Long Covid is hurting their ability to work.

“We are an employee-at-will state so generally a worker or employee has very little protection,” said Pearlman, Partner at Steinberg Law Firm.

Pearlman said they’re working a couple dozen workers comp claim cases for people who they think they got COVID at work.

“These are frontline workers. People who every day went to work and tried to save lives and put themselves at risk at got sick,” he said. “They should be covered. They should be protected. Right now, insurance companies, at least the cases I’ve been involved in, have not been accepting these cases which is really egregious as far as I’m concerned.”

Pearlman said some of his clients are long haulers who still can’t work.

Kronsberg understands. “It’s no joke. People need to take it serious. I know a lot of mandates are being lifted and mask ordinances. I’m all about taking off a mask, but I’m also all about getting vaccinated. Vaccinations are out there. Go get them,” she said. “Hopefully, we’re going to turn the corner here soon. We’ve had a very, very, very rough 14 months.”

For her and other long haulers, getting back to “normal” after covid goes beyond masks and distancing.

It’s waiting for their bodies go back to normal, too.

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