What Long COVID Looks Like And How Oregon Doctors Are Treating It

Amy Watson said her COVID-19 diagnosis came with a “plot twist.” 

Early in the pandemic, Watson came down with flu-like symptoms that wouldn’t go away. After two weeks, her doctor prescribed her antibiotics that didn’t help and her bloodwork was unremarkable. 

COVID-19 tests were in short supply. But afterward her symptoms persisted for 28 days. Meanwhile, her partner and daughter both recovered from the same illness. Watson drove to the Kaiser Permanente clinic on Interstate Avenue in Portland to get tested. Two days later, her test came back positive, leaving her perplexed as to why her illness had not gone away.. 

“What in the world?” Watson, 48, recalled asking a doctor. “How is this COVID this late?” 

“I don’t know, but you survived,” was the response. “Just keep surviving.”

The response didn’t leave Watson with much to go on. She was still ill, and she needed help. Nearly two years later, Watson is still sick and is among the millions who suffer from “long COVID” or “long-haul COVID.” 

Long COVID is marked by a range of persistent symptoms including shortness of breath, fatigue, brain fog, changes in smell or taste, heart palpitations and other effects. 

More than a year and a half after the start of the pandemic, doctors and researchers are giving more attention to long COVID, which affects more than half of the 236 million people who’ve contracted the virus, according to a recent study from Penn State University. 

Earlier in the pandemic, “COVID long haulers” complained of being dismissed by doctors. Since then, the World Health Organization established a clinical definition of long COVID. Earlier this year, the National Institutes of Health said it would spend over $1 billion over four years investigating long COVID, or “Post-Acute Sequelae of SARS-CoV-2 infection.”

Even with a formal diagnosis, doctors and patients are still piecing together the puzzle of long COVID. Arriving at a long COVID diagnosis can require a battery of tests and carefully listening to patients to map out the virus’ damage. Long COVID clinics have sprung up in Oregon that include specialists spanning multiple disciplines and treatments. With some trying and failing, patients and doctors are finding ways to treat long COVID.  

With some persistence, Watson finally found specialists, medications and therapies that brought her up to 50% of where she was before getting COVID, she said. But she faces an unsure recovery. 

“It’s like being trapped in a wet sleeping bag that you can’t get out of,” she said. 

In Oregon, an estimated 75,000 people have long COVID. To help treat them, Oregon Health & Science University set up its long COVID program in March. 

Dr. Aluko Hope, medical director of the OHSU Long COVID Program, said the program has scheduled 213 patients in its first six months. 

He said one of the complications of spotting long COVID is that doctors still don’t understand its pathophysiology, or how the virus attacks the body. Modern medicine, he said, struggles with illnesses like long COVID because they don’t have a clear-cut measurement or test to diagnose it. 

Then there’s the matter of figuring out if an ailment isn’t caused by an existing condition, such as diabetes or heart issues, he said. 

However, he said doctors know that the condition is caused by how the body’s immune system responds to the virus. That means doctors must listen carefully to patients to find out how the virus has affected them and how to treat them, he said. 

“Assessing whether there are other signals in the immune system pathway that might sort of lend itself to more specific treatments is one approach that we might do in the diagnostic evaluation tests,” he said. “I would say a whole chunk of it, a good 95% of it, is really careful listening to the history and looking for the treatment target that we know how to improve.”

Hope has been seeing COVID patients for more than a year and a half. He said fatigue, shortness of breath and brain fog are the three most common symptoms of long COVID. But there could also be signs the virus affected the patients’ respiratory or autonomic nervous system, which regulates heart rate and blood pressure, he said. 

“I think the learning point around long COVID has been how to identify the multiple systems that might be impaired, but then also understand how different patients might present with those different impairments,” he said.

Currently, there is no pill, shot or course of treatment to cure long COVID. Hope said his job isn’t to experiment and innovate a new treatment. Instead, he said, “my job is really to do what’s already been done,” finding treatments that work for COVID-induced symptoms. 

At OHSU’s program, physical therapists help patients with chronic pain. Patients with headaches or coughs caused by COVID are given medicines. Speech therapists help patients who’ve had their ability to speak impaired by COVID. 

The clinic has six “hub clinicians” who see patients for their initial visit and refer them to specialists for specific symptoms. Hope meets with his colleagues in other disciplines every two weeks to swap stories and discuss some of the more challenging cases they come across.

Neurologists and gerontologists are brought in to work with patients worried that COVID will make their existing ADHD worse or lead to dementia, he said.

While an all-encompassing treatment for long COVID treatment may or may not be developed, Hope said he seeks to help patients find ways to manage their conditions on their own, particularly with COVID brain fog and fatigue.

Drugs used to treat Alzheimer’s have been used for COVID brain fog. But Hope said their effectiveness is debatable. Instead, he gets patients to understand their physical and mental energy cycles and to prioritize certain activities before they crash. 

Patients with fatigue need to understand “how to meet the body as it is,” avoiding physical and cognitive activities that fuel crash-and-burn cycles, said Hope. Physical therapists work with patients to develop a physical activity plan to gradually build up their anaerobic capacity while staying below the threshold that would make them crash. He said the approach is similar to treatments for patients with concussions or chemotherapy.

“For me, that’s exciting to help patients recognize that, yeah, they’re going to get better; we know how to get you better or to teach you some of these skills,” he said. “It’s just not like a quick fix-up tomorrow.” 

Watson said long COVID affects digestion, sleep and causes vascular damage — all ailments that aren’t easy to measure on lab tests, MRIs or CTs. 

“Doctors just kind of have to take our word for it based on our anecdotal reporting of our symptoms,” she said. 

Getting diagnosed with COVID was a relief for Watson because she at least knew what was making her sick. The problem was she stayed sick. After her fever and fatigue persisted, she saw her primary care physician who didn’t have any answers. 

“There was no one who was interested in figuring this out,” she said. “Everyone was in survival mode, dealing with acute COVID.”

About five or six weeks after getting COVID, Watson said she started getting intense migraines. She suspects that’s when her neurological damage took place because it’s when “all the wackiness kicked in.”

Her heart rate shot up and felt like she was going to pass out after going for a walk in Tryon Creek State Park. Her heart rate would similarly spike while unloading the dishwasher or sweeping the floor. 

At times, Watson has felt like she was grasping at straws. She underwent a spinal tap and MRI, but found no evidence COVID remained in her body. 

Watson said treating her long COVID has involved lots of experimenting to find out what treatments work, changing medications and changing doses. She keeps a spreadsheet to track all the medications she’s tried. 

For example, she was diagnosed with small hyper neuropathy, an excruciating condition that caused a constant burning sensation all over her body. One medication made her sedated but another made her “horribly, horribly, horribly nauseous all day every day.”

By the summer of 2020, she started getting some answers. Her neurologist in Seattle diagnosed her with dysautonomia, a dysfunction of the nervous system that controls bodily functions including the heart, breathing and digestion. 

Her neurologist prescribed her medication to treat her myalgic encephalomyelitis, an inflammation of the brain and spinal cord that she describes as constantly having the debilitating fatigue of mono. She uses an app to play white noise or a trickling brook to drown out her tinnitus. She takes blood pressure medications, prescription stimulants to stay awake as well as a solution of cromolyn, sodium and water to be able to eat. 

In total, she takes 15 daily prescriptions and about half a dozen supplements. They’ve helped. She’s back working 25-hours a week as a preschool teacher. After work, Watson said she’ll walk the dog and then put on pajamas to sit down to administer Long Haul COVID Fighters, an online group she founded to advocate for long haulers. 

But she misses outdoor activities. She can’t ride a bicycle because she worries she’ll get dizzy. Snowshoeing for miles in the winter is “absolutely not in the cards anytime soon.” The thought of packing up gear to go camping sounds exhausting. She hopes her balance eventually improves enough to paddle board again. 

But other cases of long COVID are less complicated. 

Iann Ruschamp, 28, said he came down with COVID in July of last year that started with his nose filled with a burning electrical smell. His sense of smell and taste faded away before he came down with flu-like fever and chills. Weeks later he still felt miserable with no energy and his sense of taste was never the same. Red meats are repulsive to him and can only taste the acidity in a glass of lemonade. 

Previously, Ruschamp said he had no problem working 13 to 16 hours a day in food service but when he returned to work he was winded after crossing the dining room. His doctor wasn’t much help. 

“We don’t know much about this,” was the response according to Ruschamp. “So good luck. If you get real sick, let us know. But we don’t have a lot of answers for you. And nobody’s going to have a lot of answers for you.”

But Ruschamp was convinced someone was looking into long COVID. After looking around, he entered OHSU’s long COVID program. 

He described the program as an amazing “doctor-patient relationship.” His doctor listened to everything he said and checked up on it. Ruschamp said he’s had all of his organs checked and has had enough blood tests to last multiple lifetimes. The tests didn’t reveal any major issues. But one found he had deficient levels of Vitamin D. 

He now takes multivitamins along with 1,000 IUs of Vitamin D a week, which he said have boosted his energy. Ruschamp, who now works as a handyman, said it took time for his body to heal and he’s at about 80%. But he still gets tired easily, which cuts into social activities like watching a football game with friends.

Hope said developing expertise around long COVID will be challenging. Even though long COVID is fairly common, there are clinicians around the state who’ve never seen a patient with it, he said. 

“We’ll have to develop our infrastructure on education and how to give clinicians who are struggling with their patients guidance,” he said. “Right now, the numbers don’t add up for us to see everybody in the state. But hopefully, over time, if we have that infrastructure, educationally, they can feel more empowered to kind of take care of the easier cases.”

Hope said researchers are looking for signs of who might be prone to have long COVID, much like how someone with a flat foot is more likely to have ankle problems. 

Watson also hopes doctors will understand the disease well enough to prevent cases of long COVID. After over a year and a half of trying to contain the havoc the virus has wreaked in her body, she’s not counting on some “magic” cure for long COVID.

(Correction: a previous version of this article mispelled the first name of Iann Rushchamp. The Lund Report regrets the error.)

You can reach Jake Thomas at jakethomasr[email protected].

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