Long COVID-19, also known as post-acute sequelae of SARS CoV-2 infection, has impacted a wide range of individuals, and symptoms are as diverse as those infected.
“It’s a really interesting topic and one that we don’t know a lot about yet,” state Department of Health Director Libby Char said recently during a livestream.“It runs the gamut from people just having lingering symptoms for a long time, to those who have really debilitating Long COVID, including things like memory fog and not being able to return to their pre-COVID life.”
A recent study from the Brooks Institute found roughly 4 million Americans reported Long COVID symptoms that prevented them from working, including some Hawaii Island residents.
Coan Yates of Mountain View turned 35 this month. He contracted COVID in May, and ever since, his symptoms have persisted.
“I worked as a manager in retail where I was walking 10 miles a day, easy, and that’s what I did for 40 hours out of the week. I was in good shape,” he said. “But now, if I walk 100 yards, I have to sit down. Even having conversations will leave me winded.”
His symptoms range from exhaustion to numbing sensations in his hands and feet that can spread to his chest and face.
“My hands shake extremely bad,” he added. “I’ve stopped doing dishes because I’m scared I’m going to break them.”
Christina Sorte of Pahoa works on the Big Island as a registered nurse. She was infected with COVID-19 in February was and reinfected in May, which is when her Long COVID symptoms started.
“When I got it the second time, I had a really high fever for a couple days, with body aches, headaches, and a cough that wouldn’t go away until I couldn’t breathe,” she said. “I felt like my face was going to explode from the pressure that was in it. I was exhausted. I’m still exhausted.”
Sorte works in pediatrics and said while most children haven’t reported Long COVID symptoms, she hears of cases involving their parents.
“It’s really important that people realize how differently this virus affects individuals,” she said. “This is a virus that doesn’t follow rules, and people treating it cavalierly, saying it’s not a big deal, has led to a lot of damage. With most viruses, there’s a pattern to the behavior, but this one, it’s constantly evolving.”
Sorte said merely being exposed to the virusincreased her range of symptoms.
“I was reexposed in July, and after I was exposed, I didn’t get COVID again, but I started getting new symptoms,” she said. “If I’m out in the sun, I break out in a rash. If I get hot, I break out in blisters. Those were never a problem before.”
Tim Thyberg, 32, of Hilo also has experienced lingering symptoms since his initial infection in November.
“The weird thing for me was I didn’t lose my smell when I had COVID. The loss of smell happened two months after,” he said. “Nine months later, I still don’t have my smell totally back.”
Thyberg also has experienced insomnia as a symptom.
“I just had such a lack of energy, it was hard to do my work,” he said.
Sorte reported having a preexisting autoimmune condition, which she believes could have exacerbated her symptoms. But both Thyberg and Yates reported being healthy prior to their Long COVID symptoms. While Thyberg was unvaccinated at the time of infection, Sorte received her primary series and Yates received both his primary series and booster.
“I believe that if I didn’t get the three vaccines, I would not be here,” Yates said. “If I would have caught it at the beginning of COVID, I would have been one of the death tolls from not breathing.”
Long COVID symptoms have been broken down into three categories by researchers: neurological symptoms which include the commonly reported brain fog, loss of taste and smell and overall fatigue; respiratory symptoms which include shortness of breath, chest pain and other possible lung damage; and systemic or inflammatory symptoms which include musculoskeletal pain, anemia and other gastrointestinal disorders.
“It’s not like they can study just one part of it, or one thing that it does, and come up with cures,” said Yates. “It affects kidneys, lungs, heart and your brain and everything in between.”
With wide-ranging symptoms, treatment remainsis specific to each individual.
“There’s not a lot that we can offer yet because we don’t know what the cause is,” said Sorte, adding some have tried IV vitamin B drips, anti-inflammatories, pain relievers and other medications. “They went from saying it was a respiratory condition to possibly now a neuro condition, so it’s all guessing, experimenting with available medications until figuring out something that works for the individual.”
Some patients have turned to online message boards, alternative therapies, and a variety of treatment plans to mitigate symptoms.
“Friends have pointed me to using supplements, specifically turmeric, a big anti-inflammatory, and omega 3 fatty acids, which also helps anti-inflammatory and cognitive functions,” said Thyberg, who noted he also has tried intermittent fasting.
Yates also has experimented with vitamin B, C and D supplements along with two inhalers.
But among all three patients, none of the remedies have had much of an impact.
Yates has undergone CT scans and pulmonary tests that came back normal, and Sorte underwent an MRI last week for her ongoing migraines, which have been persistent since July.
“We’re going to be looking at if there’s anything to do with my heart, or if it’s just extreme muscle fatigue around my lungs,” said Yates of his evaluations.
The stigma attached to the disease has had an impact as well.
“I’ve gotten dirty looks and honked at in parking lots, because I’m not walking fast enough, because I can’t,” said Yates, who cited the support of his fiance and his two children, aged 12 and 4. “I cant play and interact with my kids like I used to. It’s just like your entire life gets thrown up into the air.”
Sorte also reported struggles returning to her normal life.
“I’m an RN, and I’m a mom, and those things take a lot of energy, and I don’t have a lot of energy,” she said. “I’ve missed more work in the past couple of months than I have in my entire decade as a nurse. I’ve worked with broken ribs, torn muscles, migraines. I’ve had surgery and came back three days later. I’ve worked through everything, and this has put me into a position where I’ve had to say patient safety is going to be a problem if I go to work today, because I’m too dizzy and my vision is off.”
Information is still limited regarding the total number of Long COVID cases in Hawaii.
“I know there’s some clinics running at different health care centers to look at Long COVID,” Char said. “But I think we really won’t have a lot of answers until we see more time elapse, and we can really look back at a year, two years, three years.”
For those infected, the uncertainty makes it difficult to persevere.
“There’s no goal line for me. I can’t see where the end of this is going to be,” Yates said. “That makes it hard, wondering if you’re ever going to get back to who you were, or if this is just my new reality.”
Email Grant Phillips at gphillips@hawaiitribune-herald.com.