In early March, Kyler Roper, 24, had all the tell-tale signs of COVID-19 -- fever, dry cough and night sweats. But, nearly three months later he’s still struggling with a severe shortness of breath.
Just a few days ago when he was at the market, his symptoms suddenly returned.
“I started to get a really bad metallic taste in my mouth and then I got really confused and literally felt like I was just gonna collapse, right in front of everyone,” said Roper.
Just talking, he said, makes him lose his breath.
Roper never got tested for COVID-19 because back in March, tests were scarce.
It’s likely he contracted the virus from one of his roommates. His roommate’s boss visited New York and tested positive. The roommate got the whole house sick. And after Roper’s initial wave of symptoms dissipated, a new round of symptoms appeared.
“I started having numbness in my hands. You know, every time I’d wake up my hands would be completely numb, and I have to shake them to kind of get the feeling back,” said Roper.
Patients like Kyler are called COVID-19 “long haulers.” They typically have what’s considered a mild case of the virus and don’t need to be hospitalized. Patients with mild cases recover in about two weeks on average, according to data from the World Health Organization. But, several months out, “long haulers” are still not feeling better.
“I remember one day telling myself, ‘I’m better, I’m all better. I don’t have a fever, I don’t have a cough, I don’t have a sore throat, I’m not tired, I’m better,’” said Shelley Snyder, 52, Salt Lake City. “And two or three days later thinking I feel worse now than I did weeks ago.”
Sometimes the symptoms seem unrelated to the virus.
“I started having this internal, they call it internal tremors, or buzzing,” said Lisa O’Brien. “It feels like this electric buzzing is going through your whole body. Like your head, your arms, your legs.”
O’Brien has also been struggling with COVID-19 symptoms for months. She’s been diagnosed with two blood clots and often wakes up in the middle of the night by a rapid heart rate.
Her doctor dismissed the possibility that the symptoms were related to COVID. So, O’Brien went online and found a support group on Facebook, which encouraged her to start a similar group for patients in Utah.
“I think people thought we were just crazy hypochondriacs, all gathering together,” said O’Brien.
But, O’Brien was not deterred. She signed up for a program at Mt. Sinai in New York that was tracking and studying COVID patients like her -- she finally felt understood.
After her first appointment, she shared the news with her facebook community, which now includes nearly a hundred members.
“I was like oh my gosh, you guys, they believe us – I found people with a medical degree that know what we’re going through,” said O’Brien.
Josh Redd is the owner of Red River Health and Wellness and a chiropractic physician. He started conducting research on COVID-19 antibodies in April. The goal was to trace when the virus first came to the state and in the process, he found something unexpected.
“We started to realize that there were some individuals who had COVID, that still weren’t feeling better,” said Redd.
Redd’s specialty is treating complex autoimmune, neurological and endocrine disorders. He found that some of these chronic COVID-19 patients had bloodwork that seemed to indicate autoimmune and/or inflammatory responses that weren’t present before they had the virus.
“Their immune system actually became a little over zealous and started to cross react to their own soft tissue, meaning that their immune system was attacking the infection and the virus, but it was also cross reacting and attacking their own tissue,” said Redd.
This theory might explain the types of symptoms long haulers are experiencing. But, researchers, like those at Mt. Sinai, are still figuring out exactly how the process works.
“Even the experts aren’t even really the experts because everything’s so new and everyone is trying to kind of identify what in the world is going on here,” said Redd.
Redd is also studying at Johns Hopkins University’s School of Public Health. He gave this example to describe how the immune system may be responding to the coronavirus.
“It would be like taking a sledgehammer to kill a bug. Yea, you’re gonna kill the bug, but at the same time you’re gonna create a massive hole and problems elsewhere,” said Redd.
Redd is currently treating a handful of chronic covid patients for free. The best course of treatment at the moment, he says, is diet, lifestyle changes and anti-inflammatory medications.
“But, not as easy as like, here’s a pill and I’ll see you in six months. It’s a lot of work for the patients, it’s a lot of work for myself,” said Redd.
Redd said that he’s just one practitioner, looking at just one piece of the puzzle.
“Just keep in mind, we’re not, it’s not like we’re treating COVID,” said Redd. “All we’re doing is managing the inflammatory response post-COVID.”
For COVID long haulers like Roper, the road ahead is uncertain.
“The scary thing is, we don’t know what’s gonna happen, is this gonna last for our entire lives, is it gonna go away in a year? Are we gonna require treatment, are we just gonna drop dead one day?” said Roper. “The scarier thing is that our doctors don’t know and they don’t even believe us.”
Auto-immune specialist Redd remains hopeful, he said that many of his patients have seen their symptoms improve. He encourages patients to keep searching for a doctor that’s willing to help.
“There’s things that you can do that can have an impact, we just don’t know how much of an impact. And we don’t know what the long-term ramifications are gonna be because of how new it is,” said Redd.