‘There’s still something’: Long COVID patients, doctors searching for answers about condition

Coronavirus

PROVIDENCE, R.I. (WPRI) — State health data shows more than 155,000 Rhode Islanders have tested positive for COVID-19 since the start of the pandemic.

Some may experience post-COVID conditions, which according to the U.S. Centers for Disease Control and Prevention (CDC) are “a wide range of new, returning, or ongoing health problems people can experience four or more weeks after first being infected.”

Even people who did not previously have symptoms in the days or weeks after they were infected can still have post-COVID conditions.

Post-COVID conditions are also being referred to as long COVID, long-haul COVID, post-acute COVID-19, long-term effects of COVID, or chronic COVID, according to the CDC.

Dr. Jennie Johnson, associate medical director of the Immunology and Infectious Disease Center at The Miriam Hospital, described those suffering from the condition as “long-haulers,” adding that who it affects is widespread and “seems to be indiscriminate.”

“We see kind of an equal number of men and women, young and old,” Johnson explained. “It doesn’t really matter if people had kind of more severe disease and required hospitalization or they had really mild disease or very few symptoms. Initially, anybody can go on to develop these more persistent symptoms.”

Johnson says younger people may be more predisposed to getting postural tachycardic syndrome or POTS, which has been seen in a significant number of long COVID patients.

The CDC notes there are 22 commonly reported persisting symptoms to date. A recent study by scientists at University College London linked more than 200 conditions related to long COVID.

Johnson said at her clinic, there is a “very heterogeneous mix of symptoms that people come in with,” but the most common are fatigue, neurological problems like “brain fog” and exercise intolerance.

“Even in people that were used to exercising hours a day, we’ve seen college athletes … star soccer athletes, that can’t even run a mile,” she added.

Meet Amanda Martin, a COVID long hauler

Amanda Martin, 30, of Central Falls, said they consider themselves a COVID-19 long-hauler because their symptoms are ongoing and impact them on a daily basis.

“I’m not functional,” Martin said. “I’m exhausted. Chronic fatigue is my number-one symptom.”

Martin said prior to coming down with COVID-19, they had a very active life, competing in the Credit Union Cherry Blossom 10-mile run in Washington, D.C., back in 2018.

“I can walk the same mile down the street in my block, and I’m still the same amount of tired every time,” Martin added. “I’ll walk that mile and I get back, and I’m huffing and puffing like I ran the entire thing.”

Martin believes they contracted COVID-19 twice, the first time being in early April 2020, before testing was widely available. They said they slept for days and when they were able to get out of bed, they were no longer eligible for a test since the fever had gone away.

“It was the worst sickness that I had ever experienced,” Martin said.

Martin said they experienced a variety of symptoms, including loss of smell and taste.

“At first, I just thought it was kind of in my head, maybe they’re just off,” Martin said.

Martin said they also dealt with symptoms such as body and bone aches, brain fog, extreme fatigue, dizziness, shortness of breath, headaches, and digestive issues.

They had to keep a health diary due to the variety of symptoms in hopes of finding answers for doctors and their own peace of mind.

Martin said the so-called brain fog has impacted them to the point where they sometimes can’t remember simple words, and it also leads them to mix up phrases.

“I’ll put things in the wrong jumbled order. That’s where I’ve noticed it the most when I’m communicating with other people,” Martin said. “It’s been unique for me in that it’s more of a rolling illness. It kind of goes in waves, where you’ll get hit really, really bad, you’ll feel terrible, and then it lets up for a little bit.”

Searching for answers, a long COVID clinic opens in RI

Dr. Johnson, who serves as the director for a long COVID clinic at The Miriam, said about 240 patients have sought help since the clinic was established last November, which she added is few compared to the burden of COVID-19 in the state.

“Their initial infection could be very mild or very severe and require hospitalization. So, most people never completely get better,” Johnson said. “There is a smaller subset of people who recover and then develop symptoms a few weeks later. But fortunately, that is less common than people who kind of have more persistent symptoms.”

Diagnosing long COVID can be challenging, according to Johnson, since no one case is the same.

Martin said in May 2020, a month after testing positive for the virus, they still felt too ill to go into the office, leading them to lose their job, and in turn, their health insurance.

When Martin felt better last August, they moved from Virginia to Rhode Island to be closer to family. They were initially referred to immunology doctors at The Miriam Hospital, but at the time of the appointment, it was months past infection.

Johnson said most of the patients seen in her long COVID clinic are people who have had mild disease.

“A lot of patients who had to be hospitalized are folks that already got in to see lung doctors and heart doctors and kidney doctors, and so may not have been seen at our clinic,” she said. “But we have seen a lot of patients, and it’s been quite a struggle for them and for us to really know what to do with them.”

In December, Martin caught COVID-19 a second time, this one confirmed by a pharmacy test. Martin said they didn’t have any known underlying health conditions that would make them high-risk for COVID-19, and still don’t know how they became infected twice.

The many unknowns of COVID-19 and long COVID

Johnson said COVID-19 can also “unmask” certain health conditions people may have been predisposed to, but are only now developing as a potential result of having had the disease.

When Martin got health insurance again in Rhode Island, they started to see a variety of doctors to address potential long-term damage, as well as find out whether they had any hidden illnesses.

“I’ve had all sorts of blood tests, urine tests. I’ve had EKG’s, chest X-rays, echocardiograms, a 48-hour heart monitor test. I had a stress test recently,” Martin recalled.

Martin said, fortunately, the plethora of testing has been able to confirm a list of medical conditions they don’t have.

“We are crossing everything out it couldn’t be and really trying to hone in what exactly is long COVID, because that is what my doctor has called it,” Martin said.

“Just because the tests aren’t showing something, I’m telling you, there’s still something,” they added.

Could the vaccine help long COVID sufferers?

In late January of this year, Martin was able to get the first dose of Moderna and said their daily symptoms started to improve, including some minor relief with smell and taste.

Researchers have been looking into whether or not receiving the vaccine can ease symptoms for someone dealing with post-COVID conditions.

A team of Yale School of Medicine researchers recently launched one such study following a poll from Survivor Corps, a grassroots COVID patient group that Martin is a part of.

The poll found about 40% of people reported mild to full resolution of their symptoms after they were vaccinated.

“Anecdotally, which is the lowest form of evidence here, we have seen kind of a mixed bag with that,” Johnson said. “We’ve seen people who have certainly gotten better and some people who it hasn’t done anything. I would encourage everyone, regardless of whether or not they’ve had COVID, to get vaccinated.”

About a month after Martin was vaccinated and thought the COVID-19 symptoms may continue to fade, that’s when things took a turn.

“I was standing and my body just gave out under me,” Martin said. “It felt like an earthquake inside my body.”

Doctors told Martin they had what’s called a “syncope.” In other words, Martin fainted.

Martin thought it was strange, especially since they don’t have a history of heart problems, seizures, or neurological issues. When they went to the emergency room, they said the lack of answers was also strange.

“Everything looked normal, which is what you hope doctors say,” Martin said. “But the frustrating part about this long COVID has been if you’re not fighting something, and I’m still experiencing symptoms, it’s just like, ‘You should be better by now.’ That’s what it feels like.”

The CDC notes the medical and research communities are still learning about post-acute symptoms and clinical findings.

Long COVID journey continues for Martin

Recently, Martin said a test confirmed their antinuclear antibodies (ANA) were reactive, meaning autoantibodies are present, but by itself, does not indicate the presence of an autoimmune disease or the need for therapy, according to the American College of Rheumatology.

Martin also said another test found a high sedimentation rate in their blood, which indicates some kind of infection present.

“At all times, I’m really trying to keep in mind, is this long COVID?” Martin asked. “Just because my immediate family doesn’t have any genetic issues, doesn’t mean they won’t pop up.”

Imperial College London researchers recently found a pattern of what they’re calling autoantibodies in the blood in a small number of people with long COVID. Scientists believe this could lead to a blood test to diagnose the disease.

“Blood tests are great, but it really just takes sitting down and listening to your patient to be able to identify long COVID,” Johnson explained. “But, it also gives us a clue to kind of the underlying etiology or driver of what’s causing these persistent symptoms, and then also thereby giving us clues to how best to treat them.”

According to Johnson, the clinic has partnered with various other departments in an effort target what specific symptoms are affecting people and to ensure they are not being caused by another underlying medical issue that can be treated.

“I think the majority of people do actually have long COVID, but it’s always in the back of our minds: ‘Are we dealing with something else?'” Johnson said.

She said how little is known about the duration of the condition is a frustration she sees in those visiting the clinic.

“I don’t have enough information to help to counsel them in any sort of reliable way, to tell them, ‘OK, you know, you’re going to feel better in three months. You’re going to feel better in six months or a year.’ We just don’t have that information yet,” she said.

She did note, however, the majority of people in the clinic have seen progress.

“Whether it’s completely back to their baseline and how long that takes, we don’t know yet,” Johnson said. “For the vast majority of people, they have made incremental progress, so I think that there’s a lot of hope for the majority of people experiencing long COVID that eventually they will get back to feeling themselves.”

Martin said while they continue to recover, they’re staying active with yoga and daily walks. They’re also planning on getting back to work soon if they can find a remote opportunity with flexible hours.

“My body is dealing with something, and I’m anxious and already stressed. Anything I can do to bring that stress down is what I’m aiming for,” they added.

Martin said they hope sharing their story helps other long-haulers know they’re not alone, but also encouraged people to get the COVID-19 vaccine.

“Take this seriously, even if there is, what is it, 98% chance survival?” Martin said. “This is what survival looks like.”

Copyright 2021 Nexstar Media Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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