It's a medical phenomenon troubling doctors and patients all over the country. People who still suffer from debilitating symptoms, months--even a year--after they test positive for COVID-19.
Now, one doctor believes the key could lie in the nervous system.
Dr. Noah Greenspan says long-haulers are challenging to treat because objective tests often come back normal. And yet, patients know something just isn't right.
"COVID was horrible,” says Maria Jimenez-Correa. The 60-year-old teacher and behavioral therapist caught the virus last December. But nearly three months later, she is still haunted by the virus.
"I wake up at night feeling like I can’t breathe and I’m afraid to go to sleep,” Jimenez-Correa said.
The 60-year-old teacher and behavioral therapist also suffers brain fog, joint and leg pain, crippling headaches and now a new ailment.
"I have blisters in my mouth and all over my throat,” Jimenez-Correa said. “So, I just started medication for that."
While healing at home, she found support online.
“I just happened to fall into the advocacy group and started realizing I was not alone out there,” Jimenez-Correa said. “I’m not crazy. I do have these things that still linger."
The support group is run by Dr. Noah Greenspan, director of the Pulmonary Wellness Foundation, who works with hundreds of long-haulers and also runs a boot camp for more than 1,750 long-hauler patients.
“We’ve learned so much from long-haulers,” Greenspan said. “These people have taught us. I think it’s important that we continue to listen."
Initially, Greenspan says he started taking copious notes, searching for similarities between patients and experimenting with treatment.
“We’re playing a game of ‘COVID may I?’” Greenspan said.
As opposed to one long-hauler theory that COVID-19 might attack organs and make them weaker. He believes there's a link to the autonomic nervous system – which regulates all the things we don’t think about – like breathing, our heartbeat, etc.
"In my experience," Greenspan said. “Long-haulers don’t act like somebody who has been very sick. They act like someone who has experienced multi-system trauma – like somebody who has been hit by a truck.”
He says long-hauler patients can walk across the room and feel out of breath, or feel their heartbeat spike by 50 bpm while resting.
"And that’s like a wild card,” Greenspan said.
The good news - with slow exercises designed to improve communication with the nervous system, Greenspan says his patients have improved their aerobic capacity by more than 50%.
“We’ve seen more people get better than people not get better at all,” Greenspan said. "I want people to hang in there. I want them to know there is hope and to not give up.”
Greenspan says the majority of his long-haulers are not elderly patients with underlying heart or lung conditions. The complete opposite. Most are women in the 30s to 50s who are not just healthy, but very fit and psychically active.