COVID Long-Haulers Struggle With Debilitating Symptoms, Few Treatment Options | Health Care | Seven Days | Vermont's Independent Voice

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COVID Long-Haulers Struggle With Debilitating Symptoms, Few Treatment Options

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Published November 30, 2022 at 10:00 a.m.


SEAN METCALF
  • Sean Metcalf

When Adele Stafford, a long-distance runner, caught COVID-19 in June, the virus attacked her lungs with a ferocity greater than any marathon ever has. The antiviral medication Paxlovid eased her symptoms, but only temporarily.

Five months later, Stafford's life has been upended. The Waitsfield resident endures "zaps and zings" of pain. Simple chores such as vacuuming or cooking can ignite a fire in her chest. A recent two-mile walk — once a warm-up, now a milestone — left her glued to the couch for days.

"Talking is one of the hardest things for me," the 49-year-old said, her voice uncharacteristically raspy. "It wears out my lungs, my chest, my throat." 

Stafford is among thousands of Vermonters suffering from long COVID, a mysterious and often debilitating disorder that continues to perplex researchers nearly three years into the pandemic. The affliction, which can involve dozens of different symptoms, can strike even those who experienced mild illnesses and can come and go well after people stop testing positive for the virus.

"I have good days and bad days," said Kim Tyler, who has been plagued by crushing fatigue and memory lapses since coming down with COVID-19 in August 2021. "But there's not many good days anymore." 

The U.S. Centers for Disease Control and Prevention estimates that 15 percent of American adults have had long COVID, defined by symptoms that last at least three months beyond the initial infection. The wave of illness has not only strained the nation's health care system but also its economy; a large chunk of those people are unable to work, and some have been thrust into financial ruin.

Many long-haulers say doctors have been slow to recognize their plight and are reluctant to try out new treatment methods. And while a billion-dollar research effort is under way, advancements could take years, leaving patients unsure when, or whether, their lives will return to normal.

Tyler, a 52-year-old who lives in Essex Junction, leaves herself written reminders to take out the trash. She forgets how to use her inhaler and said she sometimes can't remember what she discussed at her medical appointments.

"My memory is shot," she said. 

Household surveys conducted by the CDC suggest that one out of every 10 adults in Vermont has had long COVID. While symptoms vary widely, many patients report a mix of fatigue, shortness of breath, joint or muscle pain, erratic heart rates, and brain fog: difficulty thinking, remembering or concentrating. Some people recover after a few months, while others find their symptoms lingering — or even changing — more than a year after their initial infection. Researchers can't explain the disparities.

And those afflicted say tests don't always identify the problems they're experiencing, a major source of frustration.

Stafford, for instance, went to the Central Vermont Medical Center emergency department repeatedly this summer for shortness of breath, only to be told that blood workups and imaging revealed nothing wrong. A psychiatrist stopped by her room during her eighth ER visit. Stafford took it as an implicit suggestion that the issue was all in her head.

"Fundamental fluency around long COVID, how it presents and what to look out for, is totally missing on the front lines," Stafford said. She called on the federal government to adopt a "long COVID 101" training for doctors, similar to how every physician now learns about the dangers of dispensing opioids.

Another cruelty of long COVID: It can affect several organ systems, requiring patients to seek care from multiple specialists. Many patients describe the frustration of waiting months to see a neurologist or cardiologist, only to be told there's not much the provider can do to help.

Hospitals across the U.S. have responded by setting up COVID-19 clinics aimed at bringing together doctors from various disciplines to better understand and treat the illness. 

More than two years of research has yielded clues to the underlying causes of long COVID. Some experts now believe that the symptoms are the result of a patient's immune response going into overdrive upon infection, leading to inflammation and damage throughout the body. Others theorize that the immune system never fully shuts down after the initial infection. But exact causes remain elusive, complicating treatment efforts. 

"Unfortunately, in medicine, to know how to treat things, you really have to understand why they're happening," said Dr. Katherine Menson, a pulmonary and critical care physician who helped launch the University of Vermont Medical Center's COVID-19 Recovery Program.

The lack of a standard treatment protocol has led to tension among some doctors over whether to remain committed to treatments backed by studies or whether to try those that show anecdotal promise.

At the UVM clinic, doctors believe many patients are experiencing dysautonomia — an inappropriate signaling of the autonomic nervous system, which regulates the body's fight-or-flight response. Treatments for the ailment have historically been lifestyle-related: Patients are often told to wear compression socks, hydrate more and increase their salt intake. They're also connected with physical and occupational therapists who can help them work on energy conservation measures. 

"That's really been the mainstay of our treatment over the last two years," Menson said. "Working with patients to really listen to the signals from their body." 

But other doctors are more willing to adopt a kitchen-sink approach. Some are prescribing naltrexone, a drug typically used to treat addiction that has reportedly eased some long COVID symptoms. Others have tried drugs used for cholesterol and blood clots.

Connor Scagnelli's doctors went a step further. A South Burlington native, Scagnelli was working with COVID-19-positive patients as a first-year medical resident at the University of California, Irvine when he came down with a respiratory illness in September 2021. Though he never tested positive for the virus, he has exhibited long-COVID symptoms — chronic fatigue, splitting headaches, shortness of breath — that have worsened over the past year, leaving him unable to work.

Desperate for relief, Scagnelli, with the approval of his care team, tried a procedure known as plasmapheresis, which involves removing and replacing blood plasma in an effort to remove extra antibodies, abnormal proteins or other harmful substances from the blood.

Needles were placed in both of his arms. Blood flowed out from one arm and through the machine, which removed his plasma and replaced it with a substitution fluid, then returned it into his other arm.

The therapy helped stabilize him, Scagnelli said, but he still doesn't feel anything close to normal. Other long-haulers who have tried apheresis — including some who left the country for the treatment — have reported no changes. 

Scagnelli said he understands why doctors are wary of repurposing medications and therapies to treat long COVID.

"I think most of the people living through [long COVID] would say that they would rather try anything than continue to live like this," he said.

Some patients have started seeking out holistic treatments, and several dozen have ended up at Brendan Kelly's acupuncture practice in Burlington.

Kelly, who's trained in Chinese medicine, said he's had great success treating long COVID through a regimen of acupuncture, herbal mixtures and lifestyle changes, all aimed at reducing inflammation. "Everyone has gotten better, except one person who didn't stick with the Chinese medicine treatment long enough," he said. 

Among those who swear by the approach is Evelyn Stoecklein, a 34-year-old South Burlington resident who caught COVID-19 in December 2020 and spent the next year battling chronic fatigue, heart palpitations and shortness of breath.

After visits to a cardiologist, pulmonologist and neurologist brought no relief, Stoecklein booked an appointment with Kelly on the recommendation of a colleague and began a weekly acupuncture appointment. Gradually, her breathing improved, she said, and her heart issues subsided. She now goes once a month and said she feels "pretty much back to normal."

Kelly has no capacity to take on more patients, he said, but has been looking for ways to expand access to Chinese medicine treatments.

An ally in that effort: Dr. Karen Huyck, a Dartmouth-Hitchcock Medical Center occupational medicine physician who also serves as medical director of the Vermont RETAIN program. Run through the Vermont Department of Labor, the RETAIN program connects people who are out of work due to illness or injury with medical services that can help them recover enough to rejoin the workforce.

Long COVID has become a major focus of the program, Huyck said, and some of its patients have had positive results with Kelly. Vermont might benefit from training other practitioners on Kelly's method, Huyck said.

"We need to be looking at all possible things that help people recover," she said.

Clinicians should eventually have more evidence on which to base their treatment protocols. The National Institutes of Health is spending $1.15 billion to study the syndrome and is conducting numerous clinical trials aimed at identifying underlying causes and vetting potential treatments.

As they wait for the results, patients are coping with their new realities in various ways.

Many have found community in long COVID support groups, where patients celebrate triumphs, commiserate on setbacks and probe the latest research. But even that can feel overwhelming at times.

Tyler, the Essex Junction resident, often leaves virtual meetings of the UVM Medical Center's recovery group feeling frustrated that others seem to be improving while she isn't. She tries to remind herself not to get upset, that it's out of her control, but logic struggles to prevail when she can barely get out of bed. The $843 monthly disability payments she receives don't make up for her lost income, she said, and now she fears that she will eventually lose her apartment unless something changes.

"It just takes you away from your friends, your family — the whole life you used to have," she said of long COVID. "And you don't know whether you'll ever get that back."

The original print version of this article was headlined "Chronic Condition | COVID long-haulers struggle with debilitating symptoms, few treatment options"