March 2023 marked the third year of the Covid-19 pandemic. It's not a welcome anniversary, with over one million lives reported lost in the US alone and an estimated 16 million Americans currently struggling with long Covid. Despite scientific advances which swiftly brought us vaccines and boosters, there is still no clear understanding of what exactly causes long Covid. This has created a knowledge gap around diagnosis and treatment protocols that is frustrating patients and physicians. The good news is that many do get better over time, but it can be a long haul.
Diagnosis: Ups and Downs
Long Covid, officially called Post-Acute Sequelae of SARS-CoV-2 infection, was first acknowledged in 2020, but its kaleidoscope of more than 200 symptoms often makes it difficult to recognize. Also, symptoms can appear suddenly months or years after an initial infection. Ashley Pugliese, a mother of two from Fishkill became ill with Covid-like symptoms—there were no tests in the US for Covid at the time—in February 2020. After an ER visit, she was sent home with a diagnosis of a stomach bug. But Pugliese didn't get better, and a battery of ailments plagued her month after month. Her symptoms, including brain fog, joint pain and swelling, hair loss, vision problems, and crippling anxiety with a racing heartbeat, were debilitating. "It took me over a half hour to get out of bed in the mornings," she says. Yet, these were dismissed; with one doctor suggesting "maybe you need a spa day," she adds. There was very little information about long Covid in 2020 and this led Pugliese to found Covid Connection, a support group for women with long Covid.
"Patients can be experiencing a number of disturbing, real symptoms—maybe not life-threatening symptoms—but very real and very alerting," explains Alba Azola, MD, codirector of the Johns Hopkins Post-Acute Covid-19 Program. "For example, chest pain, palpitations, and sudden sweating." The patient goes to the ER and after all the tests come back normal, they rule out a heart attack. "Instead of validating the patient's experience and symptoms, many physicians dismiss the patient as if there's nothing wrong with them—which, in my view, is doing harm. So, it's a huge problem. I think the least we can do as physicians is to acknowledge the symptoms and the limitations of our abilities to diagnose and capture pathology."
There are now recognized long Covid symptoms. Some of the most common ones include persistent, extreme fatigue, brain fog, headaches, shortness of breath, chest pain, and palpitations—usually lasting more than a month. This is helping patients to self-diagnose, and to guide primary care doctors in referring them for long Covid care—a requirement at many centers. However, there are no specific tests for long Covid.
Covid can cause serious diseases like myocarditis (inflammation of the heart), kidney disease, and pulmonary emboli (blood clots in the lungs). Gary Rogg, MD, clinical lead of the Westchester Medical Center (WMC) Post-Covid-19 Recovery Program, says it's important to rule these out first. This can help put patients' minds at ease. "When most people realize they don't have something that's of immediate danger to them, that really helps rest their minds and helps with their anxiety and depression," he explains. Myocarditis can be diagnosed with an MRI, but there are other long Covid-related symptoms that can't be seen on imaging tests.
One of these is brain fog, a cluster of neurological symptoms including confusion, forgetfulness, and difficulty thinking or concentrating, that affects up to 50 percent of long haulers. "When someone has brain fog, they feel compromised and they're not able to do what they could before. They lose their sense of worth, which becomes secondary depression," explains Paul Wright, MD, a neurologist and senior vice president and system chair of Nuvance Health's Neurosciences Institute. He says it's difficult to determine whether the brain fog causes depression or if it's a combination of the Covid causing depression and brain fog. "It's not something someone can see. It's not as simple as fixing a broken arm. That's why it's difficult to treat and that's why patients are frustrated and seeking help," Dr. Wright says.
Treatment: One Size Doesn't Fit All
There's no cure for long Covid. It's more about managing each patient's distinct set of symptoms—requiring a personalized treatment plan. "The problem with long Covid is there is no treatment paradigm," says Dr. Rogg. The biggest challenge, he adds, is "not letting people lose hope. It really does get very disheartening—especially when you've had a normal life and now you can't even walk up a half-flight of stairs without sitting down."
Another treatment challenge is what Dr. Azola calls, "riding the corona coaster." Too much exertion one day can cause symptoms to flare up the next. "Patients feel better and then do a lot and then crash for a few days," she explains. "It's really important to get them to accept where they are without losing perspective on their ability to get better." Dr. Azola's team works with physical therapists to train patients on pacing and energy conservation strategies.
Taking a different, more holistic approach to long-Covid treatment, Raphael Kellman, MD, director of the Kellman Wellness Center in Manhattan, uses specific blood tests to measure inflammation and immune activity. "My approach is to go to the root cause and address problems on a physiological level," he says. All treatment plans are personalized but he considers the patient's microbiome (the vast world of bacteria that lives throughout the body) key to healing. "Research shows an unbalanced microbiome plays a big role. They know this in long Covid, even if you don't have any gastrointestinal symptoms," Dr. Kellman explains. Balancing the microbiome with a range of pre-pro-and post-biotics, can help restore the microbiome and "tone down the immune system," he says. He also uses a range of natural compounds, including herbs, nutraceuticals, and supplements, as well as traditional medications when required.
Feeling Better Takes Time
Dr. Rogg says it averages between a year and two years for most people to get better, with about 20 percent having symptoms that linger beyond two years. However, he adds, "when you ask them how they feel compared to six months ago, or a year ago, they all say better."
Pugliese says she's now doing "amazingly well." "I chose one day last March to no longer live being sick. I had to get myself well. That started with getting to my gym, changing my diet, seeking the help of a social worker, and no longer relying on traditional therapies such as prescriptions to help me heal. Not to say I don't still take certain prescriptions, but I rely on them less and less." She no longer takes medication for joint pain—only an occasional Tylenol. She's back to work full time and her symptoms have almost disappeared—aside from some occasional brain fog/forgetfulness, which she attributes to stress.
Looking Ahead
Despite ongoing efforts via the National Institutes of Health's $1.15 billion long Covid research program, new diagnostics and treatments may take several years. "Obviously, we as physicians want to help patients and when there's no quick-pill answer to say take this and you'll be better next week—it's a long haul," says Dr. Wright.
Long Covid will likely be here for a while. As science races to uncover what causes this condition with its barrage of often debilitating symptoms, it may take years to apply that knowledge in the clinic. In the interim, physicians are doing their best with the tools they have to help get people back to good health. And patients are finding what works for them. "For me, getting better has, and continues to have, a lot to do with my state of mind; good friends, my gym, my therapist, and my husband have been my constant check in for that," says Pugliese. "There are bad, yucky days—but the good ones, now three years later, far outweigh the bad."
RESOURCES
NY Long Covid Care Centers: Survivorcorps.com/pccc-ny
Support Groups: Thecovidconnection.com; Longcovidpatient.com
Long Covid Disability Information: Hhs.gov/civil-rights/for-providers/civil-rights-covid19/guidance-long-covid-disability/index.html
Long Covid Books
The Long Covid Survival Guide by Fiona Lowenstein
Long Haul Covid: A Survivor's Guide by Dr. Joseph J. Trunzo and Julie Luongo
