With Florida entering what health experts say is a third wave of the coronavirus pandemic, many patients who contracted the virus during Florida’s first two waves continue to battle debilitating symptoms, a growing indication of the long-term affects of COVID-19.
Researchers estimate that at least 10 percent of coronavirus patients still have symptoms long after the virus has left their bodies. Known as “long-haulers,” they include people like Karyn Bishof of Boca Raton, who tested positive in March during the first wave of the pandemic, and Beth Buckley of Delray Beach and Brian Bisch of Coral Springs, who had the virus in the summer during the state’s second wave.
All three are still battling symptoms ranging from headaches, signs of autoimmune disorders, chronic fatigue and neurological issues. As cases now surge again — Florida’s weekly average is up 28% so far this month — and the rate of positive tests climbs, these long-haulers shed light on the impact of the long-term toll the pandemic will have in the community.
Because the virus is relatively novel, research is still thin. But emerging data shows that there may be more long-haulers than previously thought, with perhaps as many as 20% of coronavirus survivors still having symptoms weeks or even months after the virus is gone.
“With COVID-19, this seems to be happening regardless of the disease’s severity, even in people who were never hospitalized," said Dr. Nicole Iovine, an epidemiologist at the University of Florida. ”Those people are also reporting months and months of symptoms, where persistent symptoms are usually only reported with severe illness.”
Karyn Bishof, a 30-year-old firefighter and paramedic, has been dealing with the affects of COVID-10 for eight months.
She woke up with flu-like symptoms in mid-March, she said, just as the pandemic was beginning its first surge through Florida. She dropped her 11-year-old son off with her father and went for a test. A week later, she got a positive result.
The virus left her body, but the symptoms never did: She said she experiences extreme fatigue, shortness of breath, a possible autoimmune disorder and pneumonia still linger.
“It was every week, almost every day it just got to the point where I was getting these new symptoms in combination with symptoms I already had,” Bishof said. She’s since been diagnosed with fibromyalgia and postural orthostatic tachycardia syndrome, which causes an abnormal increase in heart rate when standing up.
Faced with few answers and a lack of research on the long-term affects of the virus, Bishof founded the COVID-19 Long-hauler Advocacy Project and began researching on her own. She surveyed about 1,200 long-haulers and found that 66% had no improvement in symptoms since getting sick — 49% reported heart problems and 53% had respiratory problems.
Other studies had similar findings. One conducted when the pandemic first broke out in Italy found that after contracting the disease, less than 13% of patients from ages 19-84 were fully recovered after 60 days from experiencing their first coronavirus symptoms. And 55% of patients still had at least three or more symptoms, with most reporting fatigue, joint pain, chest pain and shortness of breath.
Doctors in Paris reported seeing at least 30 patients a week who still had symptoms that had not gone away, the vast majority of them female.
There are theories about why people like Bishof don’t fully recover. Researchers believe the body’s nervous system goes into overdrive trying to attack the virus and then doesn’t back down even after the virus is gone or nearly gone. It’s not a reaction that’s unique to COVID-19: For example, during the SARS pandemic 20 years ago, many people with severe cases reported having persistent symptoms, Iovine said.
But for the coronavirus, even mild cases trigger an oversized fight and that comes with potential long-term consequences.
Symptoms can come and go on a daily basis, disrupting quality of life. Some days, even getting out of bed is a struggle. Beth Buckley of Delray Beach said there’s a belief in the community that people recover quickly from coronavirus and long-haulers can be treated like outcasts.
“Friendships have definitely changed. Some for the better and some not so much,” said Buckley. “You do get the sense that your close friends who have not been directly affected by this just want you to stay a little bit at bay. If they have to face it, it’s too much. "
Buckley woke up with a scratchy throat one morning in early June when Florida was at the beginning of a steep climb toward one of the country’s worst surges. She tested positive for COVID-19 and had mild symptoms for about a week, she said.
Then her condition took a serious turn for the worse.
Buckley said she spent a total of 37 days in isolation, with three visits to the emergency room and one hospitalization with symptoms ranging from debilitating head pain to rashes and hallucinations. “It was awful."
Now, in November, she said she’s still fighting symptoms, especially lingering forgetfulness and other unexplained neurological issues.
It’s the same story for Brian Bisch of Coral Springs, who said he believes he caught the virus from somebody he met in June. Bisch, 55, tested positive for COVID-19 on July 4, the week that Florida reported its highest number of new cases of the pandemic, 15,300.
Bisch spent six weeks in bed and battled a fever that reached 104 degrees. Nearly five months after his positive test, he still suffers from chronic fatigue and sinus issues.
“I’m waiting to get better and it’s just not happening,” Bisch said.
Getting treatment is proving just as frustrating for these long-haulers, with medical professionals short on research and resources. Just getting an appointment with a doctor is difficult, Buckley said, but even when she gets one, doctors have been unsure how to treat the issues.
Bishof, who is in a legal fight with her employer after losing her job because of her illness, recalls one doctor brushing off her issues and later telling her there was no explanation for why she hasn’t recovered. She said she feels dismissed by the current healthcare system.
“We survived COVID but we’re not living," Bishof said. “We are not the people we were before. We are struggling with work lives and family lives.”
Long-haulers turned inward for support, connecting on social media and in Facebook groups to share tips on symptom management and information on new research. But as the medical world’s focus is on containing and treating the virus, the tone in long-hauler support groups has grown more pessimistic, Bishof said.
“The language used to be we are heroes and we are going to make it,” she said. “It’s shifted to ‘I can’t take it anymore, I can’t do it anymore."
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