By Olivia Belanger
THE KEENE SENTINEL
John Lyons was perfectly healthy.
In the winter of 2021, the 70- year-old went to the doctor’s for a routine check-up, and all tests came back normal.
Then he got COVID-19.
The viral disease took him through the normal motions: body aches, migraines, fatigue, trouble sleeping. But after weeks with no progress, he knew something was off.
“I was really worried because I was a mess. I just couldn’t sleep. I didn’t have much of an appetite. I just felt awful …,” recalled Lyons, of White River Junction, Vt. “I thought, ‘Man, this is not good.’ “
Lyons is one of millions experiencing lingering post-infection symptoms, known as long-haul COVID.
Research so far shows that about 10 to 20 percent of people who have had COVID-19 develop symptoms that seem to hang on, according to the World Health Organization.
Why this occurs is still murky, since much about COVID-19 is still unknown. But as experts work to find answers, doctors and researchers nationwide have banded together to help these patients the best they can.
“When we started, we really had no idea how many patients we’d be seeing …,” said Dr. Jeffrey Parsonnet, one of the coordinators at Dartmouth-Hitchcock Medical Center’s post-acute COVID syndrome clinic in Lebanon. “It turns out, in our wildest imagination we wouldn’t have imagined how many patients have been referred to us.”
A post-COVID primerPost-COVID conditions are a wide range of new, returning or ongoing health problems people can experience for one month or more after first being infected with the virus.
COVID-19 isn’t the only infectious disease to cause long-term complications. A nagging cough after the flu, for example, is common.
Even people who did not have symptoms when still infectious can develop long-haul COVID, and each person’s symptoms vary. Some of the most common ones are continued loss of taste or smell, fatigue and “brain fog” — a condition that causes slow thinking, confusion and difficulty remembering things.
Evidence so far suggests that people are less likely to have these symptoms if they are vaccinated, since the vaccine will often prevent them from developing other severe complications of the disease, like being hospitalized or dying from it. But, there are exceptions.
To help provide relief to people with these symptoms, dozens of post-COVID clinics have opened nationwide, including at Dartmouth-Hitchcock.
As of last month, Parsonnet said the clinic had seen about 400 people since it opened in April 2021.
Christina Martin, a registered nurse and one of the clinic’s coordinators, said the first consult is focused on discussing patients’ symptoms and the next best steps for them.
Often, this involves a referral to a specialist who can work with them, like a neurologist for people experiencing brain fog.
Martin added that there’s no “magic treatment” for these patients, but through treatment plans — whether it be exercises, medications or even just with time — she’s seen her patients make progress.
“I am seeing patients improve slowly,” she said, “and I do caution them that it’s a marathon, not a race.”
The COVID recovery center at Brigham and Women’s Hospital in Boston, which opened in the spring of 2021, has a similar process in place for its patients.
The hospital is also greater Boston’s lead site for the RECOVER initiative, launched by the National Institutes of Health (NIH) last month. The NIH is funding a nationwide study of patients with post-COVID symptoms to better understand and define them.
In addition to finding a treatment plan or referring patients elsewhere, Dr. Gerald Weinhouse — one of the center’s senior staff members — said a lot of what he does is give patients validation.
“It’s not unusual for them to say, ‘I came from Maine and they can’t find anything wrong with me, and I’m not sure they even believe me.’ And we believe them because we see it day after day here,” he said. “That’s one of the services we can provide.”
Parsonnet echoed this, saying many of his patients just need a sympathetic ear.
“This can be very stressful for patients …,” he said. “All the lab tests are always normal, MRI scans are normal, all of this stuff comes back normal, and that can be especially challenging for a patient.”
Living with symptomsLyons was referred to Dartmouth’s clinic after seeing a sleep specialist, who was able to get him back on a relatively normal sleep schedule with the help of medications.
He said he started to feel better overall with more sleep, but that some of his other symptoms — consistent migraines and tinnitus, a persistent ringing in the ears — lingered.
So about a month later, Lyons had his first telehealth call with the clinic, and they worked with him on a treatment plan.
Lyons said his tinnitus, which has no cure, has continued, but the clinic gave him ways to cope with it.
He uses a sound machine for background noise, since the ringing is heightened in quiet spaces. Stress can also make it worse, so he’s tried to alleviate as much of that as possible.
He’s had periodic check-ins since his first visit with the clinic to make sure he’s still on the right track, but so far, so good.
Lyons said these lifestyle changes — in addition to prescription doses of magnesium and vitamin B2 to get rid of his headaches — have helped him get back, at least somewhat, to normal.
“From where I was about this time last year, it’s much, much better,” he said.
For others, such as Chelsea Hormor of Chesterfield, seemingly minor symptoms are affecting the day-to-day.
The 29-year-old got COVID-19 in December 2020. While still infectious, she had “devastating” symptoms, including loss of taste and smell, fatigue and body aches.
“I went back to work, and I used to take the stairs, and I walked up the stairs and was like ‘Oh my God, I can’t breathe,’ “ Hormor recalled. “I can breathe now … but the taste and smell has been really brutal.”
She can taste and smell certain things, but they are often distorted.
“Some of my favorite things, like citrus fruit, taste like mold now,” she said.
There is no proven treatment to get these senses back, but Hormor said she has looked into smell training, which involves sniffing several potent scents twice a day, sometimes for months, to stimulate and restore the olfactory system (or to at least help it function better). It’s almost like physical therapy for your nose.
Hormor said she has tried to do it on her own with an at-home scent training kit, but the results were only temporary. She plans to speak with her primary-care provider about trying it again in a professional setting.
“Hopefully we can figure it out …,” Hormor said. “It’s hard to remember what those things smelled like when you haven’t smelled them in so long.”
Megan Manley, 36, also hasn’t regained her ability to taste or smell since she was diagnosed with COVID-19 in December 2020.
The Hancock resident said over time, her senses have come back “probably 80 percent,” but that it’s different than before.
“Something like ginger, I used to love it so much, and now it tastes like gasoline,” she said. “Your healthy eating habits go down the drain because the only things that taste good are really salty.”
Manley has thought about going to an ear, nose and throat doctor — another option for people with these side effects — but hasn’t yet. Other than that, she said she just “kind of suck[s] it up.”
Mike Marshall of Spofford is also dealing with lingering symptoms.
He has an autoimmune disorder, so when he was diagnosed with COVID-19 in January, he knew it “was going to be bad.”
“It wasn’t until like a month ago my wife asked me, ‘Are you going to have COVID forever?’ “ he recalled. “I said ‘Probably.’ “
Marshall, 41, said he lost his taste and smell for more than a month, but now it’s back, albeit faint. However, he still deals with lethargy, a persistent cough and stuffed nose.
“I must blow my nose a minimum of 150 times a day,” he said.
Marshall said he’s talked with his primary doctor several times about his symptoms, but that he might reach out to a post-COVID clinic.
“I didn’t know that help existed,” he said.
Waiting it outFor many patients, experts say getting rid of their symptoms just takes time. Treatment can help expedite that, both for your physical and mental health.
Finding ways to manage the stress often associated with having long-haul COVID is one way to help yourself at home, according to the Centers for Disease Control and Prevention.
This includes taking breaks from COVID-related news, getting plenty of sleep, exercising if possible, talking with others about your experience or reading about others with your condition.
But, until more is known about post-COVID and its causes, it’s mostly a waiting game to get better.
“My best advice is just to hang in there …,” Weinhouse said. “And just know that we are learning [more] about it every day.”
This article is being shared by a partner in The Granite State News Collaborative. For more information visit collaborativenh.org.
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