It began with some foul-tasting wine.

As a sales rep for software company Ansys, Brandon Apodaca went out for drinks regularly and traveled by plane every other week. Throughout the pandemic, he continued traveling for work.

"I didn't take this seriously at all," he said. "I was one of those people that said, 'I am healthy, I'm fit, I've never had a problem.' I thought it was all nonsense.

"I was dead wrong."

In June 2023, dining at a restaurant with his boss, his body sagged with fatigue, the lights so bright it hurt to see. He wasn't sure why his red wine tasted so bad. He told his boss he had to leave, that he was feeling sick.

"On the way back, driving at night, I felt like I was having tunnel vision or something," said Apodaca, 34 and a southern California native living in Bridgeville, Pa., at the time. "The next morning I woke up, and my heart rate was flying. It was somewhere up around 180 or 200. I checked my blood pressure, and I was having a hypertensive crisis." He would later learn he had long COVID-19, which he still struggles with today.

That condition, where COVID symptoms last longer than three months after an initial infection, has impacted an estimated 27 million U.S. adults and around 1 million Pennsylvanians, per Census data and long COVID studies. Five years out from when Pennsylvania first went on lockdown, and amid an array of symptoms and outcomes, researchers are still uncovering how to treat patients with long COVID.

Hospital systems in the region responded to the condition by opening clinics to treat patients who reported debilitating brain fog and fatigue, dizziness, nerve pain, migraines and more. Apodaca said he's suffered from about 40 symptoms over the past year and a half.

When the post-COVID clinic at Allegheny Health Network opened, 10% to 20% of patients were developing long COVID six months out from their initial infections, said Briana DiSilvio, the leader of the clinic at the time.

"Early in the 2021-2022 era, the need for the clinic was really there," said DiSilvio, now the associate program director of the Pulmonary Critical Care Fellowship at Allegheny General Hospital and a practicing pulmonary physician. "We had never experienced something like this before. There were a lot of unknowns around what long COVID could look like."

The proportion of people suffering from long COVID in the area, she said, has dipped so low a dedicated clinic is no longer necessary, though DiSilvio still treats patients with respiratory conditions such as chronic obstructive pulmonary disease, emphysema and severe asthma, who are at greater risk of severe symptoms if they get COVID.

"We've seen over the evolution of the last three years that long COVID and the prevalence of long COVID has declined to 5% of infected (COVID) patients," she said. "This doesn't mean respiratory patients are out of the woods for severe symptoms."

She still fields a number of calls weekly for people asking for antiviral medications, and patients can still take months to get back on their feet.

This was true for Karen Schulmeister, a 71-year-old Robinson resident who got COVID around Thanksgiving 2020.

At the time, she thought she was sick with a sinus infection and felt mostly OK. Upon her daughter and doctor's urging — Schulmeister has had asthma since her early 20s — she went to the hospital. That started a 10-day stay in intensive care, where Schulmeister's oxygen levels dropped precipitously and she was almost put on a ventilator. For the next few years, she used oxygen supplementation nearly 24/7, wheeling a tank around with her everywhere she went.

"I had to pace myself. I couldn't go up and down the steps with the laundry," she said. "I didn't go grocery shopping by myself for a long time because I would get out of breath."

Schulmeister struggled with shortness of breath, hair loss, taste and smell loss, weakness and fatigue. Shortly after being discharged, she connected with DiSilvio at AHN's post-COVID clinic, where she was introduced to specialists and enrolled in physical therapy that continued twice weekly for about a year.

"In April 2023 I went to DiSilvio and told her, 'All I want to do is walk my daughter down the aisle in November,'" said Schulmeister. "She said, 'You might need to take your oxygen.'"

But Schulmeister did walk her daughter down the aisle on Nov. 11, 2023, without that tank, and she doesn't use oxygen at all during the day anymore. "I really credit (DiSilvio) for being alive."

No cookie-cutter approach

Knowledge of and practices for treating long COVID have evolved over time as researchers and physicians learn more.

There's no cookie-cutter approach that benefits all patients because long COVID is inherently multifaceted, said Benjamin Abramoff, director of Penn Medicine's Post-COVID Assessment and Recovery Clinic and an assistant professor of clinical physical medicine and rehabilitation at the University of Pennsylvania.

As doctors don't yet have a proven treatment that targets the underlying mechanisms of the disease, they center their attention on symptom alleviation.

"We often focus on lifestyle changes, medications and rehabilitation techniques," said Abramoff. "These treatments can lead to recovery and resolution."

He's seen the gamut of recovery too — with some patients recovering fully, some forever altered by the illness and others somewhere in the middle.

As researchers explore theories about the drivers behind long COVID in order to tailor treatments, one has to do with viral persistence: remnants of the SARS-CoV-2 protein that the body, for some reason, is unable to clear. Researchers have also seen signs of autoimmune dysfunction and mass inflammation from long COVID.

Also common in long COVID patients, said Abramoff, is dysautonomia, or a constellation of symptoms that signifies the body is struggling to maintain its balance: fluctuating heart rate and blood pressure, lack of temperature control, fatigue, brain fog, widespread pain and sensitivity to touch, sound and light. Dysautonomia symptoms were especially frustrating for Apodaca, who spent years as a high performer at his job and rarely got sick. The brain fog in particular was unlike anything he'd experienced.

"I would look at toothpaste in my hand and I'd be struggling to remember the word 'toothpaste,'" he said. "You see faces, and you're trying to remember somebody's name that you've talked to for years, and once you finally get it, you're just frustrated."

Frankie Lane, a 26-year-old living in Milwaukee, Ore., experienced this too. Lane got COVID in March 2020 and has been sick with long COVID for years, dealing with headaches, migraines, sensitivity to light and touch, dizziness and severe fatigue that required staying in bed for hours on end.

"It was like everything was amplified. My body was taking in stimuli so much more intensely than everyone else," said Lane. "It got to a point where I'd be washing my legs in the shower, and my legs would hurt just because of the stimuli."

For a while, wearing a hat, sunglasses and earplugs when going out helped to dampen sensory input. But even typical activities proved difficult: In the grocery store, the vibrations of the shopping cart rolling across the linoleum and the luminosity of the fluorescence was overwhelming.

An active young person who achieved high grades, Lane was studying clinical nutrition at Oregon State University when hit with COVID. It was tough to reframe what it meant to be productive and successful, worsened by severe fatigue, so much so that Lane stopped working and relied on parental support to help cover rent and bills.

"When I start to crash, it feels like I'm slowly being injected with lead," said Lane. "I start drooping; I get a low tone of voice. I just lay in bed until I can get up again. I feel my body slipping."

Apodaca is now mainly housebound as well — a drastic juxtaposition to his earlier, jetsetting lifestyle. He's been able to keep his job due to help from coworkers and the understanding of his boss.

A range of treatments

Both Lane and Apodaca tried a plethora of treatments to ease their symptoms, including supplements, vagus nerve stimulation, clinical trials, antihistamines, transcranial magnetic stimulation, low-dose naltrexone and plenty of rest.

A combination of the supplement N-Acetyl Cysteine and the blood pressure medication Guanfacine improved Apodaca's brain fog significantly, while rest and electrolytes helped Lane.

Sleeping for 15 hours a day stopped helping Lane feel better. Trying a different approach, guided by physician Rebecca Kennedy, did.

At her private practice in Portland, Kennedy treats patients with chronic symptoms, including long COVID patients. She uses what's called the "mind-body approach," which aims to recalibrate the body's nervous system.

An out-of-whack nervous system is one emerging theory of long COVID and illnesses with similar symptoms, such myalgic encephalitis and chronic fatigue syndrome, or ME/CFS, which Lane's symptoms mirrored, and postural orthostatic tachycardia syndrome, or POTS, which Apodaca's symptoms mirrored. What Kennedy calls the new science of pain is that many of these conditions represent nervous system disorders, brains stuck in hyperactive loops meant to keep us safe from danger. This may explain the hypersensitivity to touch and light and the dysautonomia that Apodaca and Lane both experienced.

That doesn't mean long COVID symptoms are all in people's heads, as many long haulers have been told.

"Our brain tells every single part of our body what to do at all times," said Kennedy. "And it cares about one thing. It cares about danger."

Kennedy employs a kind of graded exposure therapy with her patients to help them identify their triggers and ease them into experiencing them — with the ultimate goal of teaching the body that something is safe.

When Lane would feel too fatigued to stand and begin to freak out about the pain, a call to a friend would help shift that narrative. Eventually, Lane worked up to going on walks and now works 35 hours at a new job, hoping to go full-time again soon.

"Once I started focusing on regulating my nervous system, I noticed a huge change," said Lane, who now feels back to 80% to 90%. "I attribute my recovery to what she taught me.

"I feel super lucky. I don't ever need to be back to 100%. If I'm 80% forever, that's perfectly fine with me."

Apodaca said he's more at 50% of what he was before getting sick. He said he's spent around $100,000 to get answers about his condition and still struggles with heart rate symptoms and fatigue. He recently traveled to Alabama to visit the MedHelp long COVID clinic, which does microclot testing.

Through tests, he discovered many signs of gut dysregulation, another theory some researchers have linked to long COVID symptoms. Apodaca also found through bloodwork that he still had COVID antibodies present in his system.

"My quality of life, though, is at zero," he said.

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