Doug Frizzell can't remember what "normal" feels like anymore.
Sitting at the kitchen table of his East Brainerd home in February, his uncle on a nearby couch to help him recount his life since falling ill, Frizzell described what's been 21 months of "pure hell," experiencing a range of unexplained symptoms that mirror long COVID.
He's endured excruciating headaches, debilitating brain fog, insomnia and gastrointestinal issues that make it difficult to ever leave home. Among the 20 different symptoms he's documented, the worst, he said, were the internal tremors that "felt like 1,000 bees stinging" and made him fear for his life.
"It's like internally just chaos going on in my body," Frizzell said. "I would lay on my couch and cry for hours until I just, hopefully, fell asleep, if I could. But I was under such stress that I couldn't sleep at this time, as crazy as that sounds."
Tennessee's first reported COVID-19 case was three years ago Sunday. As the pandemic spread rapidly across the globe, some previously healthy people who became infected -- even those with initially mild illnesses -- noticed they were struggling to recover or grappling with new, enduring health issues weeks after their initial infection.
Several doctors told Frizzell they believe he has long COVID (also known as post-acute COVID syndrome or just post-COVID conditions) and documented it in his medical charts. But he has another problem: No one can prove whether he was ever infected by the coronavirus.
Frizzell started feeling "off" in April 2021 but never displayed the classic signs of COVID-19: fever, chills, cough and shortness of breath. By the time his condition escalated to the point of concern in May 2021, diagnostic tests turned up negative. He's taken an antibody test, as well, which was also negative.
There's no cure for long COVID-19, although some providers specialize in treating patients' symptoms. But without definitive test results, Frizzell has been denied from the few clinics in the region that offer these services, despite his primary care doctor telling him those clinics are his best options.
"I literally feel like I've been set aside on the Island of Misfit Toys, and no one knows what to do with me," he said.
LOST AND CONFUSED
Frizzell is far from the only one in this predicament.
Many people who contract COVID-19 never get formally diagnosed for a variety of reasons, such as lack of testing availability, cost or because they were told it wasn't necessary to take a test or seek medical care for mild symptoms. It's also possible for tests to return false-negative results. Other people may test positive using an at-home test and then throw their results away, not realizing they may need them down the road.
Sometimes, people can't pinpoint if or when they were infected, which is the case with Frizzell.
For most, this isn't an issue. The majority of COVID-19 patients feel better after two weeks and go about their lives.
But for people with long COVID, unexplained and wide-varying symptoms can last weeks, months or years.
It's difficult to say how many people suffer from long COVID. The most recent data from the U.S. Centers for Disease Control and Prevention estimate that 15% of adults experienced COVID-19 symptoms lasting three months or more at some point, with more than 12.5 million U.S. adults still reporting symptoms. Other estimates suggest the burden could be much higher.
The CDC website lists 19 of the post-COVID conditions most commonly reported, but the agency notes the list is not comprehensive.
In addition to fatigue that often worsens after physical or mental exertion, some patients experience trouble breathing or shortness of breath. Heart palpitations and neurological symptoms, such as brain fog, memory loss, headache, trouble sleeping and dizziness, are also common. Digestive issues and joint or muscle pain are also among the reported symptoms.
Frizzell's condition deteriorated to the point he was forced to take a leave of absence from work in August 2021. Prior to his sickness, Frizzell graduated from Middle Tennessee State University in 2005 and had worked in transportation logistics since 2006.
Although he's improved from his lowest point in late 2021 and early 2022, his neurological issues are still too severe for him to return to work. He said his fast-paced job was similar to an air traffic controller, except for 18-wheelers instead of planes. It required him to juggle phone calls, emails and math problems throughout the day.
"I don't know how to function most days by myself, and I get lost and confused where I used to be able to multitask and do seven things at once," said Frizzell, 41. He applied for disability in November 2021, but disability would amount to only a fraction of his former paycheck. Regardless, he doesn't expect approval anytime soon due to a backlog of other applications causing processing delays.
With medical bills piling up and no income, Frizzell said he needs all the help he can get, but he'd take being healthy and going to work over a monthly disability check any day.
Finding little help from medical providers, he now spends most of his time online searching for potential therapies that could help him get his life back.
"It's a sink or swim scenario where you're having to become your own advocate and doctor in your own spare time," he said. "I'm not saying that doctors should have the magic bullet answer, by any means. I know they've got a difficult job, but you shouldn't have to go to social media for medical advice."
Survivor Corps on Facebook, a public group for COVID-19 survivors and long-haulers with nearly 192,000 members, is the page he visits most. On the group discussion board, thousands of people with confirmed or suspected long COVID post their stories, but Frizzell said he finds the comment section under each post the most useful.
"That's where you see that it's not just that person," he said. "These 150 other people are struggling, and they're saying, 'Yes, I'm dealing with the exact same thing,' or very close to it."
Frizzell said he knows something else could be causing his health woes.
"But statistically speaking, if all these people that I'm interacting with and talking to are having 20 of the same 22 symptoms, and they had COVID -- I'm just using the process of elimination," he said.
Either way, Frizzell said he just wants to find a doctor who will take his issues seriously rather than pass the buck along to someone else. After all this time, he said, he still doesn't have a treatment plan.
Even patients with definitive long COVID diagnoses experience challenges navigating a fragmented health care system in which providers rarely communicate or have time to spend with complex patients with conditions that are poorly understood.
FINDING RELIEF
Dr. Lisa Baron, a family physician from Colorado, was unable to find a doctor who was willing or able to treat her exhaustion and heart issues that began after recovering from COVID-19.
Baron said in a phone interview that her heart rate will sometimes range between spikes as high as 220 beats per minute and then drop to 60 beats per minute.
"I couldn't function for a long time because I'd sit up and I'd have to lay right back down," Baron said. "Can you imagine living that and not knowing what's wrong, and then nobody wants to help you?"
Like many patients with unexplained and complex chronic illnesses, Baron turned to the internet. While it's important to thoroughly vet everything you read or hear, she says social media groups and podcasts have assisted her recovery more than the health care system.
"We should have doctors who know, but we don't," she said. "I would not be getting better right now if it wasn't for these groups, because you can talk to people who actually have a provider that's done research."
(READ MORE: No protocol for long COVID-19 leaves treatment to guesswork)
In addition to some other treatments, she said she's found relief by taking a combination of supplements and low-dose naltrexone, a medication approved by the Food and Drug Administration to treat opioid and alcohol use disorders. She was able to get an online prescription for off-label use of the drug.
Baron is no stranger to having her health concerns dismissed.
She recently penned a column for the website KevinMD about the consequences of "medical gaslighting," a term for when health care providers deny the existence of a patient's illness or blame their symptoms on psychological factors. While it can happen to anyone, studies support that women, people of color, the LGBTQ community and other marginalized groups are more likely to become victims of medical gaslighting.
Long before the pandemic, Baron began experiencing dry mouth and eyes, joint pain and significant fatigue. She went to her primary care physician.
"He said I was suffering from postpartum bone hunger and that everyone in Colorado had a dry mouth and eyes," she wrote. "That encounter stung. I doubted the validity of my symptoms and thought that maybe it was postpartum depression."
After numerous doctor visits over more than two years, Baron was finally diagnosed with celiac sprue, rheumatoid arthritis and Sjogren's syndrome.
At the time, she said she knew she wasn't the first person to be repeatedly dismissed by doctors before ultimately finding the root cause of her problems. Patients with "invisible illnesses," such as chronic fatigue syndrome, fibromyalgia and many autoimmune diseases have long struggled to gain recognition within both the medical community and general public.
But once she became a COVID long hauler and turned to social media, she realized the pervasiveness of the issue.
"I can't imagine those patients who have suffered for decades with no one listening, and they're probably not even aware of all these other patients out there," Baron said. "It's just nice to be able to support each other and feel like you're not alone."
FOUR ER VISITS
Throughout his illness, Frizzell has gone to the emergency room four times, been admitted to the hospital once and seen five different primary care doctors and specialists in Chattanooga.
He's undergone countless labs and tests, including a spinal tap to rule out multiple sclerosis, and been prescribed dozens of medications in hopes of finding relief.
Although he's confident his condition is physical and not mental, despite several encounters where the provider wrote off his symptoms as anxiety or depression, he saw a psychiatrist to cover all the bases.
"Over this period, I have definitely questioned if it's something else, but I keep coming back to the consistency of all my symptoms," he said.
Frizzell's next appointment is with a neurologist in Atlanta at the end of March, but he's skeptical that the experience will be different from the rest.
Frizzell wants to get well, but he said he also wants other people in similar situations to listen to their bodies even when outsiders are saying they're fine.
"Just because it can't be proven doesn't mean that there's nothing wrong," he said. "I want people to know that you're not out there by yourself. And I know there's people in Chattanooga, in Hixson, Red Bank, everywhere around town, North Georgia -- I know people are hurting."
Contact Elizabeth Fite at [email protected] or 423-757-6673.
