Four years into the pandemic, long COVID remains a mystery
ATLANTA — Casey Dantzler of Atlanta was hit hard by COVID-19 early in the pandemic before vaccines or treatment were available. Four years later, the virus continues to effect his daily life in ways he could have never imagined.
In his late 50s when he became ill, the virus took away his ability to work as a private investigator. He can no longer work out at the gym. Even reading the Bible, always an essential part of his life, became difficult. The words blurred on the page.
Also unimaginable: Four years later, he’s no better.
“My whole life changed. My whole body changed when I got COVID,” Dantzler said.
Dantzler is one of the millions of American adults believed to be suffering from long COVID.
The cause of the lingering symptoms is still a mystery. More than 200 long COVID symptoms have been documented according to the National Institutes of Health, including debilitating fatigue, memory and sleep problems, and heart issues.
A recent survey by the U.S. Census Bureau has found about 18% of American adults say they have suffered from postCOVID-19 symptoms lasting at least three months. The estimate for Georgians is also 18%.
It was four years ago — March 2, 2020 — when Georgia health officials confirmed the first two cases of what was then a new respiratory virus in a father and son in Fulton County. Since then, an estimated 3 million cases in Georgia have been reported, according to the Georgia Department of Public Health. The actual number is far higher since official counts don’t include home tests.
Despite the intervening years of research and treatments, aspects of the virus that causes COVID-19 continue to confound doctors and patients. But doctors are optimistic breakthroughs are coming, even for those who have suffered with the baffling illness for years.
“If I am looking at myself and the clinic now compared to two years ago, I’m much more hopeful that we can make people better,” said Dr. Alex Truong, a pulmonologist who leads Emory’s long COVID clinic at Emory University Hospital Midtown where some 500 patients are seeking treatment for a gamut of symptoms. “Hopefully with each visit, they’re better than the last visit. That’s what I am shooting for.”
Emory and Grady are among nine medical centers in the country receiving up to $5 million in funding from a U.S. Department of Health and Human Services grant. The funding will support extended hours and telehealth appointments including providing telehealth services for people who live in rural areas. The funding will also support behavioral health specialists, care coordinators and social workers, and is aimed at giving care to the poor and uninsured.
‘IT’S REAL’
Local doctors treating patients with long COVID say the main message they have about long COVID is that it’s real.
And its effect can be profound.
By the time patients come to a long COVID clinic like Emory’s, Truong said they may have been sick for a while, or been told by other doctors that they’ll get better eventually or that “it’s in their head.”
When patients see him, “they finally find somebody who can validate them as what they are going through and there may be some things we can help. They have this sense of relief and … safety, I guess is the word for that.”
News reports talk about “brain fog” and “fatigue,” in these patients, but the public may not understand what that means and what it looks like in the dayto-day lives of people suffering.
In reality, it can mean people sleeping 14 hours during the day because of crippling fatigue. Or adults in their prime, unable to work, getting fired or retiring early.
Even the simplest things can become impossibly hard. Young parents may feel tremendous guilt because they don’t have the energy to play with their kids. Truong recalls one of his patients, a young adult, who became disoriented and lost in his own neighborhood while walking his dog.
Researchers from several studies have reported encouraging findings that people now are far less likely to develop long COVID than those who were sickened by the earliest strains of the virus.
The patients who struggle the most, Truong said, were exposed to the coronavirus during the first waves of the pandemic from early 2020 to the summer of 2021, when people had less immunity and more virulent strains were circulating. Those patients are the hardest to treat and more resistant to medications than those who had more recent variants, he said.
Truong said he recently “graduated” two patients who had recovered from long COVID. Most, however, fall into the category of “moderately” better, anywhere from 25% to 50% better, he said.
While there are still new cases of long COVID happening, the likelihood is being reduced by vaccines, prior infections, and a changing virus that is less likely to attack the lungs.
Dr. Jenny Han, a pulmonary and critical care doctor who is also a long COVID doctor, believes surveys like the Census Bureau’s are likely not picking up many people suffering from long COVID who may not realize it.
“There are so many people out there that had COVID and don’t feel right but they can’t put their finger on it. Like, ‘Am I forgetting things more often because of old age, or am I really stressed, or I am really tired because I’m just not exercising or eating right?’ Like there’s all of these lingering symptoms — COVID affects head to toe, every organ system. And providers out there have not connected the dots yet. Our initiative is to be a sounding board and to validate patients and connect the dots,” Han said.
A new large study found long COVID may lead to measurable cognitive decline, especially with memory and planning tasks. In the study published in the New England Journal of Medicine last week, those with unresolved COVID-19 symptoms lasting 12 weeks or more showed a cognitive decline equivalent to a six-point loss of IQ.
Currently, there is no test to diagnose long COVID. For now, doctors must rely on their patients’ descriptions of symptoms and rule out other explanations or causes.
Several theories exist for what causes long COVID. Doctors have considered the role of inflammation and whether there’s autoimmunity triggered by the virus, or whether some people’s bodies are not fully eliminating the virus.
Anyone can get long COVID, but people with underlying conditions such as diabetes or asthma, and those who didn’t get vaccinated against COVID-19 are also more likely to suffer from long COVID. Women are more likely to have it than men, which may be due to a different immune response to the virus.
‘NOT WHAT I EXPECTED’
Dr. Karen Kinsell, a rural doctor in Georgia, has cared for patients since the earliest days of the pandemic and managed to avoid catching the coronavirus until this past holiday season of travel and holiday gatherings.
Kinsell, who is 68 and has asthma, got very sick. Six weeks later, she is still on oxygen, some days around the clock. Previously known for seeing more than 30 patients a day from morning until the evening hours, fatigue now forces Kinsell to do mostly virtual visits from home. She aims for 10 a day, taking rest breaks on her recliner in between. Even that is difficult.
She wasn’t surprised COVID-19 hit her hard, “But this is not what I had expected.”
She recently saw a long COVID specialist at the University of Alabama at Birmingham and he was encouraging, but told her recovery will take time — possibly three to six months.
He wants her to walk more, even when she’s feeling low energy, and rely less on supplemental oxygen.
On a recent afternoon, she said she is very slowly improving.
Her illness has made her think more about the long-term effects of COVID-19 and whether COVID-19 may be to blame for some of the health woes, such as fatigue, in a few of her patients, she said. She’s also worried. “It’s been humbling,” said Kinsell who lives in Fort Gaines and is the only doctor serving Clay County. “As a physician, you can’t quite not think about what’s going to take you out in the long run. We avoid thinking about that because we think nothing is going to take us out. … And you start wondering if a ramification of (COVID-19) is this going to be an issue? And what are you going to do about it? Not much.”
HOPING FOR BREAKTHROUGHS
At long COVID clinics, a team of specialists — cardiologists, pulmonologists, neurologists, psychiatrists, and others — work together to treat patients’ varied symptoms.
Truong said improvement for many people seems to stem from a combination of medications, time and self-care, including good hydration and getting enough sleep. But doctors emphasize it’s not a one-size-fits-all approach.
For example, an exercise program can help some patients’ symptoms, but for others it can do more harm than good. Some people with long COVID can experience “post-exertional malaise,” which is a worsening of symptoms such as fatigue, difficulty regulating body temperature, and cognitive dysfunction, after even light exercise.
Lacking established therapies for long COVID symptoms, doctors often rely on approaches that have been used for other ailments with similar symptoms.
Antihistamines can improve energy and focus. Albuterol, an inhaled medicine frequently used to treat asthma, can improve breathing. Other studies in the works look at using low-dose naltrexone, typically used for opioid addiction, for brain fog and fatigue. But prescribing existing medicines for a use that’s not what it was first approved for can mean insurance won’t cover the cost. Doctors said they try to find medications covered by insurance, but people will often need to pay out of pocket for them.
Fresh hope for long haulers may come from the NIH’s clinical trials underway now. They are testing the antiviral Paxlovid, but unlike the short treatment for new COVID-19 infections, the study will look at taking it for a longer term to improve lingering symptoms. Additional trials set to begin soon including one to test drugs to help with sleep problems which include some long haulers struggling with the two extremes: struggling to stay asleep, or struggling to stay awake.
The breakthroughs can’t come soon enough for Dantzler, who on a recent afternoon, held his wife’s hand and expressed appreciation for her unwavering support and understanding since COVID-19 took hold of nearly every aspect of his life.
He also draws strength from his faith. While he has maintained his role as a deacon at his church, he must delegate some tasks.
Reading the Bible remains an integral part of his spiritual life, but his wife now reads passages out loud for him.