LOS ANGELES (CBSLA) - It's now estimated that around 30% of those who get COVID-19 will suffer from what's referred to as "Long COVID," where they continue to experience some symptoms and feel the effects of the virus for weeks, even months in some cases.
For these so called "long haulers," it can be tough find the medical care that they need.
"There are points in time where I felt like I was experiencing a slow death, and I understand why people say they don't want to live anymore," said Peggy Marie.
Marie is one of the millions of Americans struggling with Long COVID.
"There were times when I woke up at 4 o'clock in the morning in pain from my hair follicles to my toes," she added.
Her lingering symptoms have ranged from brain fog and fatigue to losing the nails on her fingers and toes.
"It would go two nails, and then another nail, and it's not like the nail died and comes off. It would lift up from the nail bed and I would literally pull it out like this," Marie said.
Despite the fact that Long COVID is now recognized by the medical community as its own illness, experts still don't know how to define symptoms of the condition.
"Defining them is indeed a problem, because unless you know what it is or have a very clear definition, it's hard to do research or hard to come up with treatments," said Dr. Otto Yang.
Dr. Yang is the Associate Chief of Infectious Diseases at the University of Southern California's David Geffen School of Medicine. He said we don't yet know what causes Long COVID, but it's believed to be tied to the immune system.
"...and so, a lot of theories with Long COVID are the immune system not tuning back down to a normal level after COVID is over," he said.
According to Dr. Yang, long haulers can be those who had both mild and severe COVID symptoms, and those who are otherwise very healthy, like Brent Boschetti. He got COVID in March of 2020 and suffered Long COVID symptoms for more than a year.
"Nobody could give me assurances about anything," Boschetti said. "It got to the point that the longer it went on, people started to make feel like I was crazy.
Boschetti dealt with brain fog, inflammation and heart palpitations. He also lost his sense of taste and smell for 10 months.
"It's a weird feeling and dynamic, and you start to think, 'Can I ever enjoy food again?'"
Experts say women are more prone to Long COVID, as their immune systems are more active than in men. There is also no cure for the condition. At this point, doctors can only treat the symptoms.
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