Long Covid, also known as “post COVID-19 syndrome,” denotes a variety of severe health issues that can occur weeks, months, and even years after recovering from the coronavirus. Few other than those studying or suffering from it realize just long it can last, how debilitating it can be or how common it has become. According to the Mayo Clinic, it occurs in 10%–20% of people who have had COVID-19, can later occur in those who were infected and recovered without experiencing severe symptoms, and commonly occurs in younger people, particularly women.
Until she had it, 35-year-old Triad historian Jessica Cale did not expect to use her research skills to study Long Covid.
“I knew it was a possibility, but none of my doctors seriously considered it as a diagnosis. I didn’t know much about it going in, but none of my doctors did, either.”
Cale told YES! Weekly that she’s seen 20 different doctors and had 65 appointments.
“Each one has a different theory—anxiety, fibromyalgia, my gallbladder, kidney stones, you name it. Even the ones who suggested Long Covid as a possibility didn’t note it in my chart, so I have to start from scratch every time.”
Cale said that she’s been prescribed almost 20 different medications, was told she needed a hysterectomy, and developed a severe allergy to plastic. She says she’s dealt with her fair share of misdiagnosis and dismissive physicians.
“This year had been incredibly frustrating, and I still don’t have an actionable care plan beyond moderate exercise, taking vitamins, and drinking more water. I’ve been offered anxiety meds more times than I can count because God knows, if a woman is sick with something we don’t understand, she must be hysterical.”
She said it took a year before anyone could offer her more than mystification and misdiagnosis.
“I was finally diagnosed with Long Covid by my amazing vascular doctor at Wake Forest in November. My cardiologist entertained it as a real possibility the month prior, but he was the first one. My vascular doctor keeps up with the studies coming out. He read my whole chart and identified it in ten minutes—POTS resulting from Long Covid.”
POTS, the acronym for postural orthostatic tachycardia syndrome, is defined by the National Institute of Neurological Orders and Stroke as a condition in which an excessively reduced volume of blood returns to the heart that occurs when an individual stands up after lying prone, resulting in lightheadedness or even fainting, accompanied by a rapidly accelerated heartbeat.
“I find it interesting that Long Covid and POTS statistically affect more women, and plenty of doctors don’t believe they exist. It’s also taken this long for clinical trials to even begin. Lots of people still believe it’s just in our heads—it’s medical gaslighting on an exceptional scale.”
Cale said she was aware of the existence of Long Covid, but because so many of her doctors had shrugged it off, it took a while for her to consider it a serious possibility.
“I had been reading about it because it made the most logical sense. I wasn’t surprised, but I was incredibly relieved to finally have an answer. Now I finally have a small team of great specialists, but I had to find them myself, and it took a year to do it. I wish there was a treatment plan, however. There’s still no one way to treat Long Covid, but I’m hopeful that the clinical trials taking place around the country will find something to help us.”
Cale is currently going to a Long Covid care clinic in Charlotte. She said that, when a neurologist at Wake Forest Baptist tried to refer her to Cone Health, that phone number was disconnected. A list of “Post COVID Care Centers” in North Carolina at www.survivorcorps.com includes one in LeBauer Medical Center at 520 North Elam Avenue, with a phone number no longer in service and a hyperlink not to a Cone-affiliated webpage, but to a FOX 8 article titled “Cone Health launching post-COVID care clinic for patients battling long-term side effects.”
Cone Health external communications manager Doug Allred confirmed that the dedicated clinic, closed last August. But, said Allred, the services it provided are continued by Tonya Nichols, at Cone Health Primary Care at Elmsley Square off Elm-Eugene Street.
“Basically, I was the clinic and I still am,” said Nichols in a phone interview. “We’re still seeing the patients; I’m a Nurse Practitioner and Doctor Olu Jegede is my supervising physician. He was over the LeBauer clinic and I was seeing the patients there.”
Nichols said she was seeing over 500 patients in late 2021 and for the first half of 2022. “It has slowed down, probably because more people being vaccinated is helping reduce the long-haul symptoms. Basically, almost all of the ones I was seeing two years ago have what I call graduated, and don’t need me anymore. We still get new ones, just not at the same rate, and I’ve had maybe 70 since then. And then there’s the people with whom it’s hard to tell if it’s really just Long Covid, or if there are other things going on, and I kind of have to tease that out. But I do my best to help regardless.”
She then described how she examines, treats, and refers them.
“What we do is a multidisciplinary team approach. I see and evaluate patients and refer them to specialists where necessary. Long Covid affects basically every system in the body, but not everybody has every symptom. If some, it’s mainly the heart, while with others, it may be neurological, or deconditioned weakness, or whatever. So, I pinpoint whatever issues they have going on, and refer them to the dedicated specialist, be it in cardiology, electrophysiology, neurology, or just physical therapy.”
Along with exhaustion, one of the most common Long Covid symptoms is brain fog, meaning persistent and significant cognitive problems, including impairments in concentration, attention, motivation, and memory.
Nichols said her Long Covid patients dealing with cognitive and memory dysfunction are typically hugely relieved to learn that there are therapies and treatments.
“I usually get them in with the speech therapy and the techniques on memory and cognition that are kind of like physical therapy for your brain. I connect them with a neurologist if they need an EEG or an MRI. I had one patient who had a brain aneurism after Covid and they had to do brain surgery.”
She offered advice for YES! Weekly’s readers.
“I was just reading about how with 75% of the new cases, people who’ve received the vaccines are at a three-fold lower risk of dying than those who didn’t. So, vaccination is still important, and it looks like not enough people have gotten that last booster. For those that have, we’re definitely seeing benefits. And masks are still really important. Me and my whole family wore our masks when Christmas shopping and everybody should do that in a big crowd. And strict hand washing and social distancing are both still really important. Of course, that’s true no matter what. Flu is really prevalent right now.”
Nichols said anyone concerned about lingering COVID symptoms can get an appointment with her by contacting the Elmsley Primary Care center at (336) 890-2165.
“I’m still getting a lot of patients from all over. No matter what it is, whatever symptom they think it might be, they can just reach out and set up an appointment to talk with me and we can go through what’s been going on with them, how long it’s been since they had Covid, and see if it really is a Long Covid symptom, and we can get them the help they need.”
She explained her criteria for diagnosing of Long Covid.
“Technically, they say if you’ve been having symptoms for about three months. I’d say anywhere from about eight weeks if you’re still having those symptoms. I don’t mind seeing people in an even shorter timeframe, so we can go ahead and jump on it and get them help sooner rather than later.”
Cale said she’s glad to learn of the work that Nichols is doing in Greensboro.
“I think that’s a fantastic approach, and I wish I had someone like Tonya to help coordinate my care. I’ve had to figure all of this out myself and call the specialists directly without referrals—I have a neurologist, cardiologist, vascular specialist, and two physical therapists who have been excellent. Are there other issues we haven’t found? Possibly, but I’m doing my best with the information I have.”
Ian McDowell is the author of two published novels, numerous anthologized short stories, and a whole lot of nonfiction and journalism, some of which he’s proud of and none of which he’s ashamed of.