Doctors try to explain long COVID. Why don't we know more about it?
There's still not a lot of data available as to why some people get long COVID and others don't.
More than 1 million Americans have died from COVID-19 since President Donald Trump declared it a national emergency three years ago. That includes 87,000 Floridians. Among the survivors, are those with long-haul COVID, or long COVID, a phenomenon still not fully understood.
But what is long COVID?
The Centers for Disease Control and Prevention defines it as a wide range of ongoing health problems with conditions lasting weeks, months or years after being infected with the virus that causes COVID-19.
Dr. Dwayne Gordon, lead physician of AdventHealth's Post-COVID Clinic in Orlando, attempted to define long COVID concisely during a Facebook Live segment.
"Long-haul COVID is a constellation of symptoms that is not explained by an alternative diagnosis," Gordon said. "So after a thorough workup you haven't found an alternative diagnosis, as well as lasting at least three months from the initial diagnosis."
However, there's still not a lot of data available as to why some people get long COVID and others don't.
"A lot of us are still wrapping our minds completely around this concept of long-haul COVID, though it is a very real entity," Gordon said.
The syndrome includes a wide array of symptoms ranging from breathlessness and chest pain to an inability to smell or taste and difficulties concentrating or short-term memory issues in a phenomenon described as "brain fog."
How big of a deal is it?
According to the Kaiser Family Foundation, of the 103 million COVID-19 cases in America, nearly 30 million Americans, or about 29%, either had or have long COVID symptoms.
Gordon says that of the 300,000 COVID patients, AdventHealth has had in three years, around 18,000, or about 6.2%, of them, have been long haulers.
"The demand has been fairly tremendous," Gordon said. "There is that need, as I was mentioning, and you know, it has been incredible to see how many people have been looking around for answers and for support."
When did long COVID come around?
The name “long COVID” was created by the people experiencing the syndrome in the spring of 2020 to describe patients' journeys of not recovering, according to the National Library of Medicine.
Long COVID wasn’t fully acknowledged by health experts until late 2021, according to Arch Mainous, vice chair of community health at the University of Florida. In October of that year the CDC officially acknowledged long COVID with a diagnosis code, allowing it to be tracked, Mainous said.
"I think that long COVID was an outcome that people didn't expect," Mainous said. "It took a while to get to that point, we were very focused on stopping COVID. And then over time, the amount of evidence just continued to build to the point where then we said, Well, I think this is a real thing. And that's when they released the diagnosis code."
Trouble identifying it
Dr. Kenneth Alexander, chief of pediatric infectious diseases at Nemours Children’s Hospital in Orlando, said properly documenting long COVID can be difficult due to its similar appearance to chronic fatigue syndrome, which is also hard to define.
"If you could really explain what chronic fatigue syndrome is, I'd get you into the National Academy of Sciences. So we really don't know. But we know it's real," Alexander said.
Chronic fatigue syndrome is a complex medical condition characterized by severe fatigue that lasts for at least six months and is not relieved by rest, and characterized a range of other symptoms such as pain, headaches, and memory problems, according to the CDC.
Like long COVID, chronic fatigue can be tricky to diagnose as it doesn't always have a physical manifestation that can be readily seen.
Some of the symptoms it shares with long COVID include trouble sleeping, difficulty concentrating and dizziness.
"Chronic fatigue is in many ways diagnosed not by its cause, because we don't know what that is, but by its manifestations, and the manifestations are fatigue myalgias (muscle pain) that disrupt life," Alexander said.
Chronic fatigue can be brought on by social or physical trauma. Technically speaking, a patient could have both chronic fatigue and long COVID, Alexander said.
"The challenge we have is that we're, we're still not super good at dealing with these things," he said. "What I would say is, the sooner we see somebody, the sooner we see those symptoms of life disruption appearing, the better we are at helping these people get life back on the rails."
Part of what makes long COVID perplexing is that it's so new, Alexander said. He saw the same thing happen when HIV emerged.
"I think what people are seeing is, is medical history being made as we look at a new disease unfolding before us, and we, we learn about it," Alexander said.
Long COVID in Central Florida
Dr. Herman Gaztambide, director of respiratory therapy at Orlando Health, says long COVID isn't going anywhere. In fact, he expects to see more cases.
"COPD is our bread and butter, asthma being a close second, and now my third most common diagnosis, post-COVID syndrome," he said. "This is something we're going to be seeing more and more because we're just in the early stages of patients still say, Well, maybe I'm just a slow healer. Let me give myself another couple of months. But I can tell you for a fact, that is becoming something that I'm seeing more and more."
Gaztambide said he’s seen a shift in ages among his patients from those dealing with pulmonary illnesses in their 50s, to people starting in their 20s as a result of long COVID.
Many of them were without any underlying medical conditions, he said.
What's it like to have long COVID?
One year after first testing positive for COVID-19, Mount Dora resident Tanya Balyeat still has weakened lungs and the short-term memory and brain fog.
Balyeat tested positive in January 2022 while the omnicron variant was running wild through Central Florida. She was hit hard by her initial symptoms: fever and an abscess growing in her throat.
"It was the most painful thing I'd ever felt. Literally every swallow felt like shards of glass in my throat," Balyeat said. "I got morphine every four hours while they were pumping me full of steroids and antibiotics to try to get rid of this thing. But the pain was so intense. I never experienced anything like that."
She spent four days in a COVID unit at AdventHealth Orlando. She took another two weeks off from her job as a self-employed hairdresser.
About a month later, the abscess was gone but she remained short of breath and realized she wasn't getting better. On top of that, she was forgetting words and trains of thought in the middle of speaking.
"I describe it to people that my brain kind of buffers. I'll be in a sentence and it just stops. It's like the little thing going around in circles buffer, buffer, buffer, looking for the next word," she said. "As far as the shortness of breath, I couldn't even make my bed without having to sit down to take a shower. Any kind of small activities around the house just had to be put on hold."
A CT Scan revealed a lot of damage to her lungs.
"I never had asthma problems never had breathing problems," she said. "But I never had anything severe, like, what happened after COVID and how it physically damaged my lungs."
After being told by several physicians they didn't know what was wrong with her, Balyeat was referred in May to AdventHealth’s Post-COVID Clinic, which opened quietly for patients last year after health system saw a growing need in the area.
Who does long COVID affect?
Long COVID affects all people of all ages, according to the National Library of Medicine.
But what about vaccines? According to the CDC, vaccines do help in mitigating the chances of developing long COVID but it is not a guarantee. However, the CDC also said individuals stood a much higher chance of developing lingering symptoms if they hadn't been vaccinated.
Balyeat, however, said she received her two doses six months before she tested positive.
It's not fully understood why some people retain lingering symptoms and others don't. One group who is more likely to become long-haulers is those with underlying health conditions prior to COVID-19, the CDC said. Balyeat doesn't fit into this group either.
Another common thread among long-haulers is they initially had ‘mild’ COVID-19 and were not hospitalized, according to studies in the National Library of Medicine.
Balyeat, again, is an exception to the pattern.
Alexander, at Nemours, said long COVID manifests in three varieties.
The first is physical hits to stamina and breathing.
"Just like a really bad flu that lands you in the intensive care unit, it can cause lung disease, and it can cause heart disease. COVID can affect the nervous system, and it can affect the muscles, there are a lot of things that it can do," he said.
The second variety is neurological, and not fully understood. Alexander says one possible explanation could be COVID’s ability to create blood clots in organs like the brain.
"These can be even in microscopic blood vessels," he said. "The second group is hard to study because there were just really learning and there were some studies that came out of South Africa that looked at these microvascular clots. Still the problem there is we don't know first what to do with it and second, how to treat it."
The final variety impacts mental health. Many COVID patients undergo depression after enduring sickness for months at a time, Alexander said.
"The thing that I think gets a lot of people into trouble is that they are looking for a cardiac, endocrine, neurological explanation at the exclusion of also getting appropriate psychological treatment. One does not need to exclude the other," he said. "So what I don't want people to do is view this as something that's dichotomous, [that] it's either a medical issue or a psychiatric issue. The two of them are entwined."
The physical and mental toll
Two weeks ago, Balyeat was diagnosed with bronchitis and took herself to urgent care. Her lungs, beaten by long COVID, left her in a vulnerable position.
"They believe was brought on by the heavy pollen, and with someone in my condition, I'm not able to fight off things as well as other people," Balyeat said. "I just knew I was couch-bound Friday."
Balyeat’s symptoms have taken a toll on her mood. She tries to stay positive, but her lengthy recovery makes it tough.
"I think you know, is this how I have to live the rest of my life? But again, I'm one of the lucky ones. I am able to get up and I am able to go to work and I am able to function," she said.
How do you treat it?
Kathy Fennimore tested positive for COVID-19 in May 2021. She was fully vaccinated and her symptoms included nothing more than a mild fever.
"I thought it a cold actually. It was pretty mild for the first few days," she said.
The fevers stuck around for five weeks. Her breathing increasingly became weaker and three months later she was diagnosed with long COVID.
Fennimore believes her underlying medical condition of scleroderma, an autoimmune disease of the skin, made her susceptible to long COVID. Fennimore, a resident of Delaney Park, lives in a beautiful three-story home, but climbing the 19 steps to reach the second floor became a herculean task. Even walking eight steps from her bed to her bathroom would leave her breathless.
"I couldn't make it from here to the bathroom without my oxygen level dropping in the 80s. Which you know, it's supposed to be like, well, for a normal person, it should be 95 or higher," said Fennimore, a senior nursing manager at AdventHealth.
Fennimore already had an oxygen tank to use at night due to her underlying condition, but her tank became a constant companion as her lungs grew weaker.
Her pulmonologist diagnosed her with long COVID and sent her to AdventHealth's Post-COVID Clinic, which opened last year after AdventHealth Orlando began noticing an increased demand for long haulers, said the clinic's lead physician Dr. Dwayne Gordon.
"So one of the things that I would say is, you know, we have the opportunity as a medical community to care for this increasing demand. And so that is what we're working on in our clinic is how do we increase capacity to take care of this robust demand?" Gordon said.
"What we do is we start off with an intake, we say, when were you first diagnosed with COVID? And then we go from there, we find out what their symptoms were. We find out when they were hospitalized. Did it require oxygenation? Did they have to go to rehab?"
Fennimore's fevers subsided after five weeks, but she retained lingering fatigue, shortness of breath and brain fog when she started treatment at the clinic, which is equipped with a multidisciplinary staff of physical and occupational therapists, neurologists, cardiologists and pulmonologists.
While doctors aren't sure how to prevent long COVID from developing, there has been success in treating individual symptoms as they manifest. These methods are not considered the standard for treatment, yet, according to the National Library of Medicine (NIH), which states "although several guidelines on long COVID management have been released, there remains a large practical gap and specific treatments are not reviewed."
The NIH also states that comprehensive assessment through medical history and examination is essential for treatment. Once Fennimore's history was tracked, the clinic team started her on physical therapy and occupational therapy to improve her stamina and help her lungs.
"I dragged myself in, I wheeled in my oxygen, and I plopped into a bike and I rode the bike for a minute," she said. Doctors would keep an eye on her oxygen level, and when it would grow to an acceptable point, they would add an extra minute to her biking. "And we worked our way up in small increments to where I would do the stairs. I would walk around the center, just for some distance. We did bands. We did all kinds of fine motor exercises," Fennimore said.
To treat her brain fog, Fennimore met with neurologists for a different workout, which involved reading stories and asking questions or reading word lists and asking her to repeat them five minutes later.
It was stressful.
"On the inside, I was like, 'Oh, gosh, oh, gosh, oh, gosh,' " Fennimore said. "But you could see the progression where I can remember more of the story after each visit."
It was slow, frustrating work, and at times, discouraging.
"A low point was what do we do about this? I mean, nobody knows about COVID They're just learning," she said.
But to Fennimore's delight, the treatment worked. After two months she was able to walk without her oxygen during the day, in time for a family trip, and within six months Fennimore was able to reclaim her life.
"Amazingly, I am a little bit better than I was pre-COVID," she said.
The long game
In January, Gordon discharged Fennimore, making her the first person to graduate from the clinic, according to AdventHealth. She was met with raucous applause from the staff as she walked out of the building.
Fenimore’s improvement is seen as a sign of progress for the scientific community looking for answers about long COVID. Still, Dr. Herman Gaztambide, director of respiratory therapy at Orlando Health, said there is still much to learn.
Gaztambide, a full-time attendee in the department of pulmonary and critical care, said patients seeking help with long COVID symptoms are the third most common complaint he receives at Orlando Health. He refers them to a similar program of pulmonary rehabilitation, which he calls a "gym for your lungs."
Usually, with pulmonary patients, he prescribes inhaler therapies for patients suffering from COPD, but that doesn't seem to work on long haulers, Gaztambide said.
"What I see with my two eyes is my patient with the post-COVID syndrome do not respond to the normal inhaler therapy and the (gym for your lungs) has been effective but again, a very different from my usual approach," he said. 'It's not something medication can fix, but what rehabilitation can fix."
The program lasts about three months. After, he has patients return for follow-up assessments to see if there's anything he and his team are missing and to see if there is more to learn.
"At the end of the day, we still don't know why patients with post-COVID still have it. Is this something autoimmune? Is the virus still shedding? So for us, it's still a work in progress but with that comes the hope of therapy and potential fixing," Gaztambide said.
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