In the early hours of an April morning, at her home in Erie, Malea Anderson woke up with what felt like an explosion of ice water up her spine and into her head. She had a massive headache and tried to get out of bed to go to the bathroom, but her limbs wouldn't cooperate. She feared she was having a stroke.
Her partner, Randy, took her to the emergency room. The doctor suspected she had COVID-19, but she couldn't get a test. At the hospital, the 53-year-old had a brain scan that came back normal — no stroke. She was sent home from the hospital, again.
It was her second visit to the emergency room in a matter of weeks and third since March. She'd had countless telehealth appointments with various primary care physicians, seen specialists and started taking supplements like vitamin D and zinc to help with her long list of symptoms: fatigue, brain fog, exhaustion, headaches, vertigo, shortness of breath, chest pain, muscle aches.
Some days she feels like she might be getting better. Then she crashes again.
"I got to where I could walk and function and maybe go make dinner. So I would get up, I would make coffee. And that would determine how the day went," Anderson told Colorado Public Radio. "Most days I would come back to bed. If I could plan meals for my family, that would be a good day. And then outside of that, I was in bed."
Anderson isn't alone. A Facebook group called Survivor Corps for those who describe themselves as "long haulers" has just over 102,000 members. While the World Health Organization estimates that 80% of COVID-19 infections "are mild or asymptomatic," and patients recover after two weeks, those who are still suffering question the notion of a "mild" case.
In Colorado, dozens of people report a wide range of lingering symptoms including shortness of breath, elevated heart rate, fatigue and malaise, headaches, gastrointestinal issues, body aches, brain fog and more.
"I call it the trifecta. I have fatigue, insomnia and exhaustion," said Cindy Maetzold, who lives in Snowmass. "But when I say fatigue, I'll go for a walk, and I'll come back and I just sit down, do nothing. It's not that I'm lazy. It's that I don't have the energy to do anything."
Studies show COVID-19 symptoms can linger, but much is still unknown
It's not clear how many people have had lingering symptoms, and how many moving forward will. In a multistate phone survey of adults who tested positive for the virus, 35% had not returned to their pre-Covid-19 health 2 to 3 weeks after their test, according to the Centers for Disease Control and Prevention.
A small study out of Italy that surveyed 179 patients, found that 87% of patients who were hospitalized still had symptoms 60 days after they started feeling sick. A small study in Germany found that 78% of COVID-19 patients had lingering heart problems two to three months out.
In Colorado Springs, Dr. Robert Lam and his medical students started surveying patients with COVID-19 after they left the hospital. The survey asks about mental, physical and financial health. Initially, the mental implications of isolation and loneliness stood out, until they started to notice some patients just weren't recovering.
"Our initial results showed that up to a fourth of patients were still having lingering symptoms of COVID. And so that was something that we didn't expect," Lam said. "We are starting to see hints and concerns that there is probably some potential long term lung damage as we're not seeing patients recover completely."
Lam's patient population spent time in the hospital, so their long-term impacts will likely be different from those of people like Anderson who were never admitted, never on a ventilator and never treated for COVID-19.
To complicate matters even more, many patients like Anderson weren't able to get a PCR test while they were sick because of a lack of tests in the early months of the pandemic. It further distorts the picture of how many people have contracted the virus, and of those, how many still have symptoms.
"It doesn't look like there's anything to fix and you don't know how to fix it"
On Jan. 15, Ty Godwin, 58, was in South Africa on a work trip. He works in sales and travels internationally a dozen times a year. That night he woke up to his sheets wet from sweat. Like most people in the U.S., he hadn't heard of COVID-19 yet, but he had been traveling internationally for work. It was one of the dozen trips he takes a year. What he thought was a normal cold or flu hung on for weeks.
"I've had three CT scans. I've had two echocardiograms. I had a $25,000 PET scan of my entire body," Godwin said. "And I've been tested for everything from Lyme disease to HIV, to anything and everything you could imagine."
None of those tests resulted in a diagnosis. As he learned more, he started to suspect he might have had the coronavirus. It took time and many tests, but his doctor now thinks the culprit is COVID-19. Early on, he had all the common symptoms, although he got an antibody test that came back negative.
He's been to the doctor at least 40 times since January, and he's registered a fever at some point in the day, every day since.
"I think people have figured out to not ask me, are you feeling better today? There are no good days. There are good hours in the day. Typically mornings are pretty decent, but you know, yesterday I had a fever at 10:30 in the morning," Godwin said. "There's a time when, I call it the witching hour, where more debilitating fatigue would kick in at the end of my business day, and sometimes that creeps in during the day."
After months of research on the SARS-CoV-2 virus and COVID-19, the disease it causes, much still remains unclear. There's no approved treatment nor vaccine, yet, and so doctors are left to use trial treatments and focus on treating symptoms.
"When you've done your traditional testing and you've looked at CAT scans and functional tests, and looked at the data and everything is normal, it's also frustrating for docs out there because they don't know what to do," said Dr. Nir Goldstein, a pulmonologist at National Jewish Health. "It doesn't look like there's anything to fix and you don't know how to fix it. We can at least offer these patients some guidance and at least make them feel like they're not alone and they're not crazy."
Some patients have struggled with their doctors not believing them, a phenomenon that's been documented more often in female patients. Anderson met with a new primary care provider looking for more answers. She was telling him about her shortness of breath when he suggested that perhaps she had anxiety.
"I was like, I do not have anxiety," she said. "And he's still only sort of taking me seriously, but I did get a referral to a neurologist. And, um, she listened, but they don't know. They just don't know what's going on. You know, they prescribed me the low half of a low dose of anxiety medicine. And it has not really helped."
And not everyone has found their community to be more supportive.
"When I talk to people who knew I had COVID back in May, and I talk to them now, they find out I'm still recovering, they tend to be really surprised," said Paul Nielsen, a 60-year-old data architect who lives in Colorado Springs. "I think people don't understand how much damage it does to your body."
Nielsen turned to the internet to find community in online forums like Survivor Corps that helped him to navigate the disease process. He also found a community of people who understood what he was going through. But, there are also people in other Facebook groups who don't understand.
"I find it very frustrating when people say the pandemic as a hoax, or it's just being politicized or they don't feel like they need to wear a mask. Or there's an easy cure with hydroxychloroquine, plus a z-pack plus zinc," he said. "I know from my experience, that the COVID disease is much more complex than any one simple, you know, here you go, it's cured."
Right now, the only thing doctors can do is treat the symptoms
The lives of people with lingering symptoms have been flattened, and in many cases, reduced to long bouts of fatigue, racing heart rate and brain fog.
"I like to say I'm relatively intelligent and sort of articulate, and now I feel like I'm completely inarticulate and incapable of putting a story together in any sort of logical way," said Tara Schumacher, who got sick in mid-March. "If I don't write things down, if I don't make a list before I go to the store, I'm not bringing back the things that I meant to."
Schumacher, 47, is a landscape photographer and runs an Airbnb out of her home in Fort Collins. The worst of her symptoms lasted through May. Now, she's left with lingering brain fog. This week, nearly five months after her first symptoms, she was diagnosed with post-COVID pneumonia.
Until there's more research on long haulers, all doctors can do is treat the symptoms.
"And so it's mainly supportive therapy, and we don't even really know what the best ones are. We are going to try them and we're going to see how people do. And we're going to read the literature and develop and change as more information becomes available," Goldstein said. "And hopefully we'll publish our own experience, but it's really a lot of learning on the job with these patients. There are no established guidelines or trials that can guide you."
In the meantime, patients are left to wait and hope they get better soon.