Many long-haul COVID-19 patients report improvement after vaccination, surprising experts - Bangor Daily News

CHICAGO — Wendy French of northwest suburban Lake in the Hills used to run 10 miles a day several times a week before she caught COVID-19 in September, which left her fatigued and suffering from a variety of symptoms for months after the virus was supposedly gone.

The previously healthy 45-year-old stopped running and even began dreading typical household chores such as doing laundry, because it required standing up for so long that she grew tired.

But after French got her first dose of the Pfizer vaccine in mid-April, she described feeling healthy for the first time in more than seven months.The second dose in May brought greater improvement to her health.

“I felt really good the next day after the first one,” she said. “I had more energy than I’ve had in weeks.”

It’s a phenomenon that has surprised — and elated — medical experts: A growing number of COVID-19 “long-haulers,” those with lingering long-term symptoms linked to the virus, are reporting sudden improvement after getting a COVID-19 vaccine.

Initial research has found that anywhere from 30 to 40 percent of these patients describe some symptom relief post-vaccination, the latest medical mystery posed by the new virus.

It’s still unclear why some coronavirus survivors don’t seem to get better weeks or even months after infection. Now scientists and physicians are trying to understand why many of these patients seem to feel better after getting vaccinated, improvements that range from a mild decline in symptoms to a life-changing return to their pre-COVID-19 health.

Theories include the possibility that the vaccine might be stopping a harmful immune response in long-haulers or that the shot could be resetting their immune systems. Some clinicians and scientists have theorized that long-haulers suffer from residual amounts of virus remaining in their bodies, and vaccination might help their immune systems fight off what’s left over.

Equally puzzling is why the shots seem to help some long-haul patients recuperate while others report no symptom improvement after getting immunized.

“We don’t have a lot else to offer people with long-COVID,” said Dr. Daniel Griffin, an infectious disease physician at Columbia University in New York. “So the thing we encourage across the board is get those vaccine doses, see if it makes a difference.”

French was initially hesitant to get vaccinated, fearing her condition might deteriorate further after the shot. She recalled waiting at a Walgreens pharmacy before her first appointment, still ruminating about the decision.

“What if I feel worse again?” she thought at the time.

But she had read accounts online from other COVID-19 long-haulers whose symptoms dissipated after getting the shot, which gave her the courage to get vaccinated as well.

She felt better after the first dose, then her energy seemed to fade but returned once again after the second dose, with improvement ever since.

In addition to fatigue, she had also suffered from vertigo-like symptoms, which disappeared after getting the shots. The mother of two has begun running again and she hopes her recovered health is permanent.

She recalled her husband’s recent reaction: “Thank God, you came back.”

A few other post-COVID-19 ailments persist, such as the sensation of a lump in her throat when swallowing or a strange taste of certain foods, namely bananas, which suddenly have an odd chemical flavor.

Yet French said these conditions are minor compared to the fatigue, adding that “everything is mostly better.”

“It worked for me,” she said. “I can get back to my old life again.”

Social media sites offer a glimpse at the shock — and joy — of so many long-haul COVID-19 patients who finally found relief after getting vaccinated.

“There IS hope!” one man recently posted on the Facebook page of Survivor Corps, an international group of more than 167,000 members who share their experiences with the virus. “I was totally asymptomatic when I had COVID, but the aftereffects had pretty much ruined me, ruined my life, I was a shadow of myself. I didn’t think I was going to make it or ever get any semblance of my life back. But I DID, now I’m hoping, praying, wishing that we all do/can!”

“I had my second vaccine a month ago and I can feel the clouds lifting,” a woman responded. “I don’t want to jinx it by saying I’m cured, but I feel I’m heading in the right direction.”

A survey on the Survivor Corps Facebook site found that roughly 40 percent of participants experienced some health improvement post-vaccination. The poll, which was tallied in May, includes nuanced questions about which vaccine the respondent took and the degree of improvement, as well as which symptoms seemed to have lessened or disappeared. Other respondents indicated no change post-vaccination, and some did report feeling worse.

Scientist Natalie Lambert has been studying the experience of long-haul COVID-19 patients since the start of the pandemic, and has been compiling data and narratives from the Survivor Corps site.

She points to the results of the recent poll as a hopeful sign that vaccination might give other long-term patients relief, as well as offer clues to explain underlying causes of long-haul COVID-19.

“It’s not only a miracle that people are starting to feel better,” said Lambert, associate research professor at Indiana University School of Medicine. “It helps us to understand, how is this disease, how is it causing the damage that results in someone becoming a long-hauler?”

Medical experts are still grappling to understand why certain COVID-19 patients don’t seem to be recovering naturally. While some of these long-haulers had underlying medical conditions or their organs suffered damage from the virus, others were relatively young and healthy before infection, and some even had mild or asymptomatic cases of COVID-19.

Clinicians and scientists have also been confounded by the litany of reported long-term symptoms, many outside of descriptions crafted by the Centers for Disease Control and Prevention and other health authorities: fatigue, brain fog, dizziness, anxiety, acid reflux, hair loss, persistent loss of taste or smell and skin problems such as a condition dubbed “COVID toes,” a purplish discoloration and swelling of the toes, among other health concerns.

While the medical community is just beginning to study the effect of vaccines on the health of long-haulers, many experts point to some possible explanations.

Lambert and others studying these long-term health implications have a few theories: Perhaps long-haulers are suffering from viral persistence, and the vaccine is finally clearing the rest of the virus from their bodies; or maybe the shots are rectifying some immune response dysfunction in certain patients.

“But the fact that it doesn’t work for everybody to me suggests there could be multiple mechanisms at play here and the virus could impact people differently,” she said. “It really depends on the type of damage that was done.”

While the shots have benefited or restored the health of many, there are also remaining long-haulers who found no relief from vaccines. The fact that no one understands exactly why some patients improve and others don’t only adds to their sense of uncertainty and frustration.

“The vaccine [Moderna] actually brought back some of my long-haul symptoms, especially after the second dose,” one woman posted on the Survivor Corps site in mid-May.”But I’m still grateful to have gotten it!”

“I don’t know what it is that makes it good for some but not for all,” another member posted, noting that long-haulers reported different experiences with all three COVID-19 vaccines available in the United States.

When the COVID-19 vaccine came out, there was tremendous trepidation among long-haul patients, many expressing anxiety that the shot might spur a relapse, recalled Griffin, the infectious disease doctor.

Many of his long-haul patients were health care workers who were among the first to be offered the vaccine. He scheduled follow-up appointments soon after their first and second doses. Griffin said he expected to find that the vaccines were safe and well-tolerated among this group of patients.

But the reports back were astounding, he said. While some long-haulers experienced far worse vaccine side effects compared with other patients, once those subsided, many were feeling better than they had since contracting the virus.

For months, patients had complained of running out of breath while climbing a flight of stairs, chronic insomnia, brain fog, debilitating headaches, an inability to go to work and other life-altering conditions.

“And now they were calling me excited to say ‘hey, I feel better,’ ” he said.

While some long-haul patients report a benefit from various medications and behavior changes for certain symptoms, there’s no known therapy to treat all the long-term effects of COVID-19.

“It was so positive after such a dark experience,” he said. “Finally there was something I could start offering or encouraging people to do to help them get their lives back.”

Griffin estimates that about 30-40 percent of long-haul COVID-19 patients found some symptom relief post-vaccination. For the most part, he’s found that these health improvements have been durable, lasting in some cases for months post-vaccination.

While everyone doesn’t recover, Griffin urged all long-haulers to get the shot and see if it helps.

“I uniformly recommend it,” he said.

Susan Jansen Brandt, 61, of Greenfield in southeastern Wisconsin, had debated whether to get vaccinated after experiencing fatigue, as well as a persistent loss of taste and smell, since contracting COVID-19 in July.

She ultimately decided to get immunized because she helps care for her father, who is 91 and has health issues, and she wanted to better protect him from the virus.

Following her first Moderna dose in March, her health began to improve.

“After I got my second dose, every day I felt better,” she said on a recent weekday. “And this morning I got out of bed and I’m like, I just feel like getting out of bed. Just like a regular person.”

Brandt said the unrelenting fatigue has faded. She’s resumed working out, and she estimates that her sense of taste and smell are about 50 percent restored.

“I am so glad I got the immunizations,” she said.

Angie Leventis Lourgos, Chicago Tribune