When Meredith contracted COVID-19 in late March 2021, her symptoms were not out of the ordinary. “I got pretty sick but had more gastrointestinal symptoms and a slight cough with no real respiratory distress,” she says. Five days later, she couldn’t hold food down and became incoherent. At the emergency room, doctors determined that Meredith’s potassium levels were low and that she had pneumonia. On April 1, she started experiencing numbness in her hands and feet, which her doctors blamed on the steroids she’d been prescribed.
By April 17, the numbness had traveled up to Meredith’s face, and although she could still swallow, she struggled to eat on her own. She lost control of her bladder and struggled to walk. Meredith went to Penn Medicine, where doctors tested, poked, prodded, and finally diagnosed her with Guillain-Barré syndrome, a rare condition in which the body’s immune system attacks the nerves, she explains. It can cause weakness, numbness, or paralysis, and typically follows a respiratory or gastrointestinal infection.
Similarly, Sasha Aber had to call a friend when she didn’t have the energy to pick up her groceries from a local supermarket in July 2022. “I couldn’t even get to my car,” she says. In addition to overwhelming fatigue, Aber became plagued by sensitivity to light, vocal cord paralysis, heat intolerance, migraines, and legs that “felt like they were filled with cement.”
There had been two recent health events: a shingles infection, followed by COVID-19. “Shingles came and went. Then I got COVID, and I never got better,” Aber recalls. Prior to that infection, the mother of two and owner of Home Grown Cafe in Newark would run around from morning till night. But after the coronavirus, her world slowed dramatically. “There is no rushing anymore,” Aber admits. “It’s a whole different lifestyle.”
The Long Haul
According to the U.S. Centers for Disease Control and Prevention (CDC), post-acute sequelae of COVID-19, also known as long COVID (LC), describes the symptoms that persist weeks to months after the initial infection. The LC umbrella casts a long shadow with more than 200 associated symptoms, including ageusia (loss of taste), anosmia (loss of smell), impaired memory, sleep disturbance, recurring headache, post-exertional malaise, cognitive impairment, body aches, and chronic fatigue. This vast array has made it challenging for health care practitioners to standardize treatment protocols, resulting in significant variations in care.
A 2024 report from the National Academies of Sciences, Engineering, and Medicine estimates that LC affects about 3.4% of adults and 1.3% of children in the U.S. Despite progress in defining and quantifying the condition, some questions remain unanswered. One ongoing area of study focuses on the role vaccination plays in potentially preventing LC.
Some doctors, including Anna Layosa-Magat, M.D., and Maricar Belicena, M.D., with Delaware’s United Medical Associates, report seeing more unvaccinated patients presenting with LC symptoms. A study published in July 2024 in “The New England Journal of Medicine” supports the theory that vaccination can offer preventive protection from LC. The study, conducted by researchers from Washington University School of Medicine in St. Louis, followed 440,000 Veterans Affairs patients with COVID-19 whose records were compared with those of 4 million uninfected people.
According to a recent news release from the university, “The risk of developing long COVID has decreased significantly over the course of the COVID-19 pandemic. … Researchers attributed about 70% of the risk reduction to vaccination against COVID-19 and 30% to changes over time, including the SARS-CoV-2 virus’s evolving characteristics and improved detection and management of COVID-19.”
In the release, the study’s senior author, Ziyad Al-Aly, M.D., notes, “The research on declining rates of long COVID marks the rare occasion when I have good news to report regarding this virus. The findings also show the positive effects of getting vaccinated.”
“Why people get long COVID, we don’t know for sure. …There are a variety of [biological] mechanisms. …It may be that the virus persists in the body. It may be that the virus has disturbed your immune system. It may be that there’s microscopic blood clotting.”
The Aftermath
Although Meredith finally left the hospital on two feet, she required a walker, and then a cane for an entire year. She also lost all her hair, leaving her completely bald, and she suffered from kidney damage, high blood pressure, and anxiety.
For the past two years, Aber has made recovery her part-time job by visiting numerous doctors and therapists up to four times a week. (Early on, just getting to one appointment would require a full day of rest afterward.)
In January, she began using orange therapeutic glasses designed for brain injuries and post-concussion syndrome to protect against light sensitivity. She wears another pair of sunglasses over those for added protection. “I also got contacts for sports players that are gray/green and can block out light, and I wear hats [whenever] I go somewhere,” Aber says.
The frustrating reality, though, is people who are suffering have few to no options for traditional medical care. “There are trials out there, but no specific treatments,” explains Wesley W. Emmons III, M.D., F.A.C.P., an infectious disease physician practicing in Newark and Wilmington. “Everything that we’re doing treatment-wise is very symptom oriented—for example, giving ibuprofen for aches. So, that’s one of the problems—you have people who don’t feel good, and there’s no magic bullet.”
As a business owner, Aber feels grateful to have job flexibility that allows her to prioritize her health. While she’s explored many avenues to help speed her recovery, progress has been incremental. Recently while in her office, exposure to fluorescent lights left her bedridden for two days. For Aber, small victories include emptying the dishwasher or walking from the living room to the kitchen without needing a 10-minute break. At the beginning of LC, driving her kids to school was all she could manage, she recalls. “I would do that, and then I would nap. I would fall asleep four or five times a day because my body was just done.”
Meredith became her own wellness advocate, seeking out every medical specialist from functional medicine doctors to physical therapists to pulmonologists and more. She spent “thousands and thousands of dollars” on additional equine and occupational therapies. She praises Neuro Fitness in Wilmington for helping her regain her walking strength, and hippotherapy—which uses the natural gait and movement of a horse—through Brandywine Occupational Therapy for ultimately getting her back to walking without a cane.
An August 2024 review published in “The Lancet” estimates that around 71% of people with LC have symptoms lasting more than a year. The condition can linger, with no clear timeline for recovery. Additionally, most LC patients experienced only mild COVID-19 infections, which has baffled researchers and clinicians.
The review also indicated that women are more likely to develop LC, as are those from economically disadvantaged backgrounds. Belicena, an internist in Bear, adds that patients with comorbidities like diabetes, high blood pressure, and obesity are also at increased risk.
While LC is one of the most researched health conditions of the past four years, discussed in more than 24,000 scientific publications, the exact cause still eludes experts. “Why people get long COVID, we don’t know for sure,” Emmons concedes. “There are a variety of [biological] mechanisms. …It may be that the virus persists in the body. It may be that the virus has disturbed your immune system. It may be that there’s microscopic blood clotting.”
There are also kinks in the medical system. “One of the most frustrating things is that I have a huge care team, and none of them agree on anything,” Meredith says. “I am totally left to take what this one says and take what that one says, and ultimately make my own decisions. Of course, I’m not a doctor, so it’s really been just a guessing game. This is all new territory for everyone, so I try to be patient and not get angry.”
“Chronic illnesses that are invisible are really difficult on your mental health because when someone looks at me, my hair has grown back, I am not using a cane anymore, and I may even be out doing an activity with my kids. …But when they say, ‘Wow, you’re all better!’…it’s really uncomfortable. I don’t want to be a downer, but I am still in pain. I still struggle daily.”
In Aber’s case, one of her most challenging conditions stemming from LC has been dysautonomia, a dysfunction of the autonomic nervous system that controls involuntary bodily functions like heart rate, temperature regulation, digestion, and blood pressure. Common symptoms include lightheadedness, dizziness, rapid heartbeat, and abnormal sweating. “Basically, I am like a car overheating,” Aber says. “My heart is fine, and my lungs are fine—I’ve had all the tests. But when my brain tries to use them, it’s kind of rerouting or short-circuiting.”
Emmons describes LC as a “total body virus,” noting that it can affect multiple organ systems. “People look normal, but they don’t feel good, and it’s something that’s not measurable with routine blood tests,” he explains. Many physicians refer their patients to university centers where more detailed studies on the condition are being conducted.
Meredith also points outs the not-so-obvious mental strain that having LC entails. “Chronic illnesses that are invisible are really difficult on your mental health because when someone looks at me, my hair has grown back, I am not using a cane anymore, and I may even be out doing an activity with my kids,” she says. “But when they say, ‘Wow, you’re all better!’ …it’s really uncomfortable. I don’t want to be a downer, but I am still in pain. I still struggle daily. I still have four to five doctor appointments each month.”
The Alternatives
While traditional medicine focuses on symptom management, some doctors are exploring alternative treatments. Henry Childers IV, M.D., F.A.A.O., of Delaware Integrative Medicine in Georgetown, has seen success with such treatments as major autohemotherapy (blood ozone therapy), ultraviolet blood irradiation, and IV therapy, combined with a healthy gut protocol.
“The problem with COVID is that it stimulates the immune system to surge cytokines, which are important inflammatory molecules,” Childers explains. “When there is an over expression or increased release, they can damage tissue. Inflammation is good. Too much inflammation is bad.”
The cardiothoracic surgeon approaches it on two levels: defense and offense. Blood ozone therapy, for instance, targets harmful organisms like molds, yeasts, bacteria, and viruses, while a healthy gut protocol strengthens the immune system.
One of Childers’ patients, Rocio Carneiro, a diabetic and asthmatic from Milton, experienced significant relief from blood ozone and silver IV therapies. After contracting COVID-19 for the fourth time in June 2024, she became profoundly ill. She described feeling like there were ants biting inside her chest and back. (Hospital tests revealed the virus was prevalent in both lungs.) Two weeks later, she felt worse after traditional treatments, so she turned to Delaware Integrative Medicine for relief. “I started feeling better in 48 hours,” Carneiro says.
Every patient is different, biologically, and genetically, Childers notes. “When we stimulate the immune system, it seems to stabilize. …If you can do that, whether it’s cytokine storm or autoimmune disease, you’re going to have a beneficial effect, not just against COVID but against everything else too.”
The Future
Despite extensive research and countless efforts to treat and understand LC, many uncertainties persist, as its impact is still unfolding in real time. “As one professor once told me, the plural of anecdote is anecdotes, not data,” Emmons cautions. At the same time, science is always evolving. “The public has to understand that this is an ever-growing thing.
I think people get a little frustrated that we keep changing the rules, but it’s just when we learn new things, our recommendations change.”
Is there any good news for long-haulers? Emmons is cautiously optimistic. “We’ll probably always have a COVID virus,” Emmons says. “So far, we’ve been lucky that it’s more contagious but not as deadly. Ultimately, we’re just playing the roulette wheel with this RNA virus and its mutations.”
For Aber and Meredith, the journey continues, with no clear endpoint in sight. But they remain determined to manage their conditions and find moments of normalcy, however small.
*Some names have been changed to protect privacy.
Related: A Look Into ADHD Diagnoses and Treatments in Delaware
