Symptoms can fall into a wide spectrum from mild to severe, but for patients and doctors, it can be incredibly puzzling and frustrating to treat. One California author said her experience with long COVID is like a chapter that won't end.
For the past two years, writer Jennifer Dornan-Fish feels like she's endured the plot twists of a character in one of her books.
"I write crime thrillers under a pen name, Ellison Cooper," she said. Her protagonist is an FBI neuroscientist who studies serial killers' brains. Dornan-Fish said she enjoys solving difficult puzzles.
"This has been my own personal medical mystery," she said.
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In March 2020, just as California issued stay-at-home orders, the novelist was exposed to the novel coronavirus.
"I never turned purple. My blood oxygen never dipped down too low. I never went to the ER," Dornan-Fish said.
But after a few weeks, her illness took on different forms.
"I got weird rashes. I started having tachycardia. I got headaches," she said. The 46-year-old's heart rate would skyrocket just from standing up.
"That started my round robin of seeing every specialist under the sun. I got to the point where after about three months, I was completely bed-bound," Dornan-Fish said.
Researchers say one third of people with mild to moderate COVID go on to have various degrees of long haul symptoms.
After nearly a year, Dornan-Fish, who is also a wife and mother, could barely function.
"That was a very, very dark period where I thought, 'Well, am I just stuck in bed for the rest of my life?'" she said.
Dornan-Fish read and researched everything she could get her hands on about long COVID syndrome.
"Many, many viruses cause all kinds of serious, long-term problems," she said.
Doctors diagnosed Dornan-Fish with dysautonomia and POTS, a blood flow disorder that makes her dizzy when she stands up.
While there's no standard treatment for post-COVID syndrome, lifestyle changes, medications to treat symptoms and supplements such as D-Ribose, CoQ10, NADH and high dose B vitamins have helped.
"I'm able to shower regularly. I can actually play with my son, but one of the hardest things was not being able to be his mother at all," Dornan-Fish said.
As Americans get ready to resume life as if the virus is gone, Dornan-Fish hopes what happened to her will serve as a cautionary tale.
"The story that this is a mild virus for most people, is not accurate, and I think that we are going to regret not acknowledging the potential problems that COVID can cause," she said.