PINEHURST, N.C. (WTVD) -- It started as symptoms he thought would last a few days, but now more than a year later Tony Marks is still suffering daily from COVID-19.
"I had a couple of doctors who said, 'You know you were really, really lucky to walk out of that hospital.' But then to never recover?!" Marks said. "I was told that would be back to normal in six to eight weeks. At four weeks, I knew something's wrong, something's not right."
The Pinehurst resident had a string of lingering symptoms, insomnia, rashes, coughing, fatigue and muscle pain; symptoms he still experiences 15 months later.
"I've described it almost like being beaten with a baseball bat every single day. The muscles just hurt that bad," Marks said. "On top of that, I deal with muscle spasms and not just what we've kind of--we've considered normal muscle spasms. If I try to focus on the spasm, I have literally thousands of spasms per minute and that goes on 24 hours a day, seven days a week. It's just unrelenting."
While researching what these symptoms meant, he learned about 'Long COVID' and about a clinic at UNC that provided in-depth comprehensive care.
For the last 10 months, Marks has been one of the 1,000 patients at the UNC COVID-19 Recovery Clinic.
"I think it is a developing crisis. Unfortunately, there are probably hundreds of thousands of people in our state who have symptoms," said Dr. John Baratta, the director of the COVID-19 Recovery Clinic. "Some may just be nuisance symptoms, (but) for certain people it dramatically impacts their ability to do daily activities and to be employed."
Marks received physical therapy and is now being prescribed medication through the clinic, however his persisting symptoms led him to resign from his job.
"There are a lot of people out there suffering from this that are losing their jobs because they cannot work; they cannot perform at their job. And so it's pretty tough," Marks admitted. "The mental damage that a lot of us are going through is just something that you've never heard of a year and a half ago."
Baratta said around half of his patients are unable to work. This paired with the cost of treatment leaves many patients suffering mentally, physically and financially months after their initial COVID-19 diagnosis.
"It is great that vaccines and testing have been covered and provided for free to Americans. Unfortunately, 'Long COVID' care is not at this point," he said.
A recent Government Accountability Office report estimated up to 23 million Americans suffer from 'Long COVID'. Despite the growing number of people impacted, there is still only a limited number of specialized clinics.
The Beckers Hospital Review reports just around 66 around the country.
Baratta said his clinic has seen people from 75 of the 100 North Carolina counties along with 12 different states.
"We are still receiving referrals from patients who had gotten COVID In the earliest waves back in March, April 2020. They've been dealing with symptoms for two years, and they're just at this point seeking out specialty care. So I think that this, unfortunately, is going to be a syndrome that we're dealing with for years to come," he said.
The UNC clinic has about a two-month wait. Baratta said while primary care doctors can treat 'Long COVID' some patients require more in-depth comprehensive care.
Long-term symptoms of COVID-19 can vary from hundreds of different things from fatigue to shortness of breath to brain fog.
Because COVID-19 can impact everything from the brain to muscles, long haulers often need speech therapy along with physical and occupational therapy.
WakeMed also has a COVID-19 Recovery Program that offers a holistic approach to recovery. The program has treated 130 people since it started in May 2020.
"For individual patients, it's getting them back to what they want to be doing, getting them back to work, back to school, hobbies. A lot of our patients are working-age, which is a little bit different than the population we saw before COVID," said Naomi Bauer who leads WakeMed's Comprehensive COVID-19 Recovery (CCR) therapy program.
The program has had a huge impact on Kim Stotz who is working on getting back to normal nearly a year after catching COVID-19.
"It's hard. I have sad days. I do. But for the most part, I'm grateful," Stotz said.
She started getting a fever and she fainted last August. She spent months hospitalized and hooked up to a ventilator. For a while, she couldn't walk. Now after nearly two months at WakeMed's clinic she's able to walk multiple laps without getting out of breath. Stotz goes through physical and occupational therapy multiple times a week.
"It's hard. It's hard but slow and steady. I will keep getting better," Stotz said.
"I don't think people take 'Long COVID' serious enough. And it is kind of frustrating for those of us that have been through it or are still going through it back a little over a year later. It's hard to convince people of what we go through," Marks said.
Next week Marks is meeting with members of the U.S. House of Representatives and Senate as leaders figure out how to fund and handle 'Long COVID' patients in the future. Congress allocated around a billion dollars in funding for 'Long COVID' research last year.
As cases and hospitalizations increase across the state and nation, doctors remind people to continue to take precautions to keep them safe.
"We do have quite a lot of patients who are fully boosted, fully vaccinated and they still get COVID and they still have symptoms that they need rehab for, so being vaccinated doesn't completely protect you from getting COVID so do what you need to do to keep yourself safe," Bauer said.
Baratta said around 80% of his 'Long Covid' patients were not hospitalized and some of them developed lasting symptoms after catching the virus two or three times.