An Anchorage doctor’s office has become a destination for patients whose lives have been upended by long COVID

The Anchorage Daily News and the Anchorage Museum are collaborating on an ongoing series of articles, Neighbors: Stories from Anchorage’s pandemic years. We’re collecting stories and making opportunities for residents to share experiences from the past two years. We’d love to hear from you. Email neighbors@adn.com. Funding for this project was provided in part by the Alaska Center for Excellence in Journalism.

On a recent evening inside an office at Alaska Regional Hospital, Dr. Luke Liu watched an ultra thin needle move on an ultrasound screen as he guided it into the neck of his patient, Becky Hallstrom. Gently, he pushed the plunger, releasing a numbing agent called bupivacaine.

His needle’s target: a collection of nerves known as the stellate ganglion. His goal, using a treatment that will soon be part of a pilot study, was to help Hallstrom get closer to the life she had before a COVID-19 infection turned it upside down.

Liu, an anesthesiologist who specializes in complicated pain and nerve problems, has become a doctor of last resort for hundreds of Alaskans — and a growing number of patients from Outside — suffering from disabling conditions that started after they were infected with COVID-19.

The 300 or more people with long COVID who have appeared in Liu’s waiting room have an array of crippling problems. Among them: fatigue, cognitive issues, persistent loss of taste and smell, tinnitus, depression, breathing, mobility and cardiac issues. Most are frustrated and desperate, having been to many other doctors without successful treatment. People have fainted in his office. They have hobbled in with canes. Two patients lost feeling in their throats and lacked gag reflexes. One man didn’t recognize his wife. Another didn’t recognize his co-workers. Others, people born in Anchorage, can’t navigate the city anymore without GPS.

“We are talking about people who before COVID, they were athletic, pretty much at the top of their career, they hiked, they could do everything,” he said. “Now they’re in bed, they can’t do very simple cognitive things.”

In treating them, he says he’s made some discoveries he hopes might help other patients. He’s among thousands of doctors working to define and treat long COVID, which the government estimates impacts between 7.7 million and 23 million Americans, including a million who can no longer work. The state doesn’t track long COVID, but a University of Alaska survey released in August found one in three Alaskans who said they were infected with COVID had long-term health effects.

“The prevalence in it is hard to assess. We don’t have any way to know the number of cases,” said Dr. Anne Zink, Alaska’s chief medical officer.

According to the CDC, long COVID is loosely understood as a post-viral syndrome with as many as 200 symptoms that occur after infection and last for months. Some doctors theorize it is similar to other post-viral syndromes that follow acute infections including Ebola, West Nile, polio, Epstein-Barr and Lyme disease. It’s been linked to an increased risk for suicide.

Some large cities have clinics where doctors with a number of specialties offer treatment for long COVID. Alaska doesn’t have this, Zink said, though many doctors, in particular cardiologists, are encountering aspects of it.

“A lot of providers are treating long COVID, whether they know it or not,” she said.

[Long COVID: Could mono virus or fat cells be playing roles?]

Dr. Liu’s effort to further study the results he has seen in his office is a good thing, she said.

“He’s engaging in an important scientific process to better understand if this is truly helpful,” she said. “It’s really exciting to see a provider try to find a meaningful solution to what appears to be a debilitating illness.”

Over the last year or so, Liu says he’s had success treating some long COVID patients with a low-risk and relatively low-cost injection that targets the functions of the autonomic nervous system called the stellate ganglion block. Working with a local medical researcher, Dr. Deborah L. Duricka, he published a case study, documenting success treating two long COVID patients with the block that was peer reviewed in the Journal of Neuroimmunology last winter.

After he published the study, pain clinics across the country started offering the treatment for long COVID symptoms — sometimes, to his dismay, with dubious credentials and at inflated costs. Patients began contacting him from Outside, scheduling flights to see him. Duricka was recently awarded a grant to fund a pilot study of the procedure for symptoms of myalgic encephalomyelitis/chronic fatigue syndrome, which develop in patients suffering from long COVID. Liu’s clinic will begin recruiting patients for the study in January. Should it show promising results, the next step would be to pursue funding for a clinical trial, Duricka said

‘I just kind of couldn’t get out of it’

Hallstrom, 52, had her first COVID-19 infection in early 2021, before vaccines became available. She had a bad infection, suffering from fevers for a month and trouble breathing that wouldn’t go away.

“I just kind of couldn’t get out of it,” she said.

She was exhausted, but continued working from bed. She is a health insurance navigator with the United Way. She flew to visit her sister in Idaho, but couldn’t breathe well on the plane. She ended up in the emergency room a couple of times during her trip. The vaccine came out and she got it, having read that some people had their long COVID symptoms improve. Hers didn’t.

“I would stand up and I would feel like my heart was racing out of my chest. I was lightheaded. I had a lot more issues with breathing and just always felt even more exhausted than what I had had previously. Honestly, I was like, how am I going to even function?” she said.

Hallstrom saw a number of doctors who weren’t sure how to treat her, she said, an experience many long COVID sufferers share. She finally found a cardiologist who was able to help her racing heart. Like many long COVID patients, she was diagnosed with postural orthostatic tachycardia syndrome, or POTS, which causes an abnormal increase in heart rate after sitting up or standing.

“He said, ‘I believe you.’ And I just started bawling because I felt like, you know, it wasn’t that those other physicians were being cruel or anything like that. They just didn’t know,” she said. “I just wanted to be able to do life and I wasn’t able to.”

Soon, she found her way to Dr. Liu.

A mysterious set of symptoms

Long COVID is challenging for doctors and patients because its symptoms are so wide-ranging, encompassing many body systems, and so far the condition cannot be diagnosed with specific lab work or imaging scans. It has no official definition, but many of its symptoms mirror those related by myalgic encephalomyelitis/chronic fatigue syndrome. For patients who are hospitalized with COVID and spend time in the ICU, recovery can be long no matter the illness, which further complicates the long COVID diagnosis. Many doctors remain skeptical about it.

The stellate ganglion block targets the autonomic nervous system, which controls automatic or “housekeeping” functions in the body, including heart rate, blood pressure, fight or flight response, respiration and digestion. One theory about long COVID is that the virus or the immune response to the virus disrupts that system, causing what’s called dysautonomia. POTS is one type of dysautonomia. The idea is that the block “reboots” the autonomic nervous system, helping to normalize its functions.

Liu is part of a national network of doctors trained to do the blocks. Depending on a patient’s symptoms, the procedure may be covered by insurance. Ahead of the pandemic, Liu had been using them to treat a number of pain and neurological conditions. He’d been working with a mentor, an Illinois-based researcher, Dr. Eugene Lipov, who has found success using the block to treat the flight or flight response related to PTSD.

Lipov has followed Liu’s work with long COVID patients and has used the treatment for a handful of long COVID patients himself, with about 50% success. He believes Liu is on to something. Other doctors are also now looking at the procedure. Another case study was published this month. The block is also now being studied specifically for its ability to restore taste and smell.

“I would believe in giving people credit where they deserve,” Lipov said. “He’s the first person on the globe doing stellate ganglion block for long COVID.”

Lipov said his research has shown that the block is safe and treats symptoms of an overactive sympathetic nervous system. Exactly how it works needs more study, he said. But that doesn’t mean that it shouldn’t be tried for patients who are suffering now. He compared it to the early use of penicillin to treat infection.

“They had no idea how it worked,” he said. “It just worked.”

Liu receives patient referrals from doctors in Anchorage unsure how to address their patients’ symptoms, he said. There are others who see his work as an unproven cure. But, he says the injection needs more study. Its successes are a lead for researchers studying long COVID, because it lessens problems in a number of systems.

“That’s what is so amazing,” he said. “It tells you about the mechanism that affects long COVID.”

The first patient

Liu, 43, has lived in Anchorage since 2011. He is married and has three children. He attended medical school at the University of California, Los Angeles, and did his residency and fellowship at UC San Francisco. He was born in China and comes from a long line of doctors. He spent part of his childhood living with his aunt and uncle, both physicians, in a hospital, which was a customary place for doctors to live at the time. He moved to California when he was 11.

The first long COVID patient Liu treated with the block was the daughter of a friend in the summer of 2021. The woman, who used to live in Anchorage, mentioned her college-aged daughter, Kiya Gere, was having a hard time after a COVID infection.

“She said, ‘My daughter, she was in college, a soccer player, everything was going great, but she ended up with COVID,’” he said. “A few months later, she couldn’t even get out of bed.”

Gere, who was playing soccer for West Texas A&M, had been infected in December of 2020 along with other members of the team. She was asymptomatic except for loss of taste and smell. When she went back to training after Christmas break, something was off, she said.

“I kept getting tired super fast. I ignored it. I thought I was out of shape,” Gere said. “It kept getting worse until I couldn’t play anymore.”

She had episodes of racing heartbeat, dizziness, problems regulating her body temperature. By March of 2021, she was benched. With that loss and fatigue, her mental health deteriorated. Listening to her symptoms, Dr. Liu suspected dysautonomia.

“I said, ‘I think I can treat that, because I have treated patients like that before,’ ” he said. “I brought her into my office the next day, did this injection and she responded.”

Gere said her sleep improved, and so did her fatigue and her mental health. She has been unable, though, to go back to playing soccer at the level she was pre-COVID. The effects of the injection wear off over time. She hopes to visit Liu in Alaska soon for another injection.

“I would be a lot worse off without it,” she said. “But in the long term, I don’t really expect my particular illness to go away entirely.”

After Gere, Liu began to treat other patients with similar problems, documenting each case.

“After I treated Kiya, it was home run after home run for the next four or five cases,” he said. “I said, ‘Wow, this is kind of interesting.’ ”

[Long COVID can be deadly, CDC study finds]

‘Something that helps’

Hallstrom visited Dr. Liu in the fall of 2021. Though her condition stabilized, she was still dealing with fatigue and needing supplemental oxygen. The first time she tried the block, she was very nervous, but she found it less painful than getting an IV.

Liu asked her to taste a gummy bear ahead of receiving the injection. After the shot on her right side, she felt that half of her body go warm, she said. Next she tasted the gummy bear again on the injection side of her mouth.

“You know the feeling of that explosion of sugar?” she said. “I was like, oh my word. I had no idea I had a dulled sense of taste.”

After a second injection, many of her symptoms improved and she was able to use less supplemental oxygen. She’s back to working part time. She has needed to return to Liu because the shot’s effects wear off, but she’s fine with that.

“I don’t care. I have something that helps,” she said.

Roughly one in five people who are infected with COVID will develop long COVID, according to an analysis published by the Journal of the American Medical Association in October. Many frontline doctors working in primary care or emergency medicine have little experience diagnosing it.

“Referring physicians have no knowledge of this,” said Dr. Sanjeet Narang, incoming chief of pain medicine at Beth Israel Lahey Health, a system of academic and teaching hospitals in Massachusetts and an assistant professor at Harvard Medical School. “Some physicians don’t even believe in long COVID.”

Narang himself contracted COVID early in the pandemic and ended up in the hospital. He has never completely regained his sense of smell. He said there isn’t enough study of the loss of smell, one of the problems that may be addressed by the stellate ganglion block.

“When I look around, nobody is paying attention to it. If I tell my own doctor, he literally doesn’t reply to what I said,” he said.

He, too, thinks Liu’s work shows promise.

“What Dr. Liu is doing is important,” he said. “It should be tabulated and presented.”

Patients yearning for ‘normal’

The most avid advocates for the stellate ganglion block are Liu’s patients. Sylvia Whipple, 43, was infected over Christmas 2020. She was working at McLaughlin Youth Center. It took her more than two weeks to return to work, but when she did, she was still exhausted. She also didn’t regain her taste and smell and lost more than 30 pounds, she said, because food wasn’t appealing. Among her jobs was to teach CPR, but she soon found her recall wasn’t the same.

“I’ve been teaching CPR since I was 16 years old, and I’m in my 40s and I was literally having to read out of the book,” she said. “I just totally blanked, couldn’t focus, couldn’t remember.”

She already had a relationship with Liu because she’d seen him for back pain. During a routine appointment, she mentioned her loss of taste and smell. He called her later to recommend the treatment. After her first shot, her sense of taste returned. And, after the second shot, she said, her sense of smell improved.

“I remember being excited to smell someone’s perfume,” she said.

The brain fog let up, as well as the fatigue. A few weeks after the second shot, she had a far easier time leading a training session.

‘I was able to teach CPR and not have to look at a book,” she said. “I was able to function at work at the level that I should be functioning at, not at the level that I had been functioning at since COVID.”

The effects seem to be lasting. She hasn’t had to return for another shot.

Another patient, Brian Whitson, 50, was first infected in April 2020. He owns Hero for Life, a CPR first aid training business, and has four children. He also has rheumatoid arthritis and takes immunosuppressant drugs. A few days into having the illness, he went to the hospital for breathing problems. His oxygen levels were low. He was hospitalized and was eventually sent home with oxygen. The symptoms never cleared up. He remained on oxygen for a year and half. He still suffers from fatigue and brain fog bordering on dementia-like symptoms.

“I walked into my kitchen and there was a strange woman standing there. I was like, ‘Who are you?’ ” he said. “And she looks at me and goes, ‘I’m your wife of 19 years.’ ”

Whitson has a master’s degree in counseling, pastors at church and completed part of the coursework for a Ph.D. in molecular biology. But, he keeps losing words when speaking.

“I call myself an overeducated person,” he said “But there’s a lot of times I can’t articulate what I want to say and it’s very frustrating.”

He also mentioned his symptoms to Liu during a routine appointment. Weeks later, he was on the East Coast, seeing a specialist, when his phone rang. Liu told him he had some success treating another patient with the stellate ganglion block and asked if he’d like to try it.

“I was like, sign me up,” he said. “You know, I was going to try just about anything to get my mind back.”

Afterward, after months of suffering, he found some relief, he said.

“Within a few days, I was thinking more clearly, I was more focused and wasn’t as tired,” he said. “It wasn’t like it was 100% back to my normal self, but it was pretty darn close.”

He now gets treatment every six to eight weeks.