Note from Dr. Moss Linder, Grace Cottage Family Health: This month, I’ve offered this space to a patient who would like share her experience with Long COVID. Research into Long COVID, also called Long-Haul COVID, is just beginning and there are no definitive answers about how to diagnose or treat it.
My name is Diana Bander. Dr. Linder is my primary care provider, and I was his first COVID-19 patient.
If you do a Google search for the term “Long COVID,” you may get as many as 7 billion results, all recent sources, from minutes to a few months old. Obviously, this is an important topic.
Here we are, more than one year into the pandemic, and just becoming aware of the serious side effects of this disease.
Early in March 2020, I thought my allergies were kicking in, but then another provider I see suggested I get a COVID test. I was alarmed to learn it was positive. My initial reaction was disbelief.
During the acute stage, I was tired, but I couldn’t sleep soundly. I lost my sense of taste and smell, and I was terribly dizzy. I broke out in a rash. I had brain fog so bad, I didn’t know day from night. This lasted for a couple of months. It was terrifying, especially as the number of deaths began to rise. I didn’t know what would happen to me.
By June 2020, I felt better, and I started getting out to walk. But things took a different turn at the end of that summer into early fall. I still had dizziness and brain fog, and the fatigue was worse. I can only describe it as a black hole of fatigue that tended to hit me sometime in the afternoon. This has continued to some degree ever since.
I have a PhD from Harvard and a masters in psychology from Vanderbilt. I taught at Goddard College. I have practiced Buddhist meditation regularly for 30-40 years. Research is part of my DNA, and meditation has trained me to concentrate. But COVID has thrown my whole system off. These days, I can’t seem to stay focused.
Naturally, with my research background, when I first heard of Long COVID, I began reading everything I could find.
The April 2021 issue of Atlantic Monthly has a helpful article titled “Unlocking the Mysteries of Long COVID.” Among other things, it tells about a group of doctors at Mt Sinai Hospital in New York who began noticing that large numbers of post-COVID patients were not getting better. They were still struggling with some combination of chest pains, heart palpitations, shortness of breath, fatigue, and brain fog, long beyond the two or three weeks that a respiratory illness generally lasts. Some were so debilitated they could not return to work.
It’s not surprising that those who’ve been seriously ill with COVID, especially those who’ve been hospitalized with a breathing tube inserted, would have complications long after acute symptoms have subsided. But many of those experiencing “Long COVID” had only been mildly or moderately ill. Medical tests often reveal nothing amiss, but these patients are definitely not fine.
The scope of the problem alarmed the Mt. Sinai medical team. Dr. Zijian Chen, a Mt. Sinai endocrinologist said he “freaked out a little bit” when he saw the number of patients who were not recovering, adding, “We didn’t expect this from a virus. We expect that, with viral infections as a whole, with few exceptions, you get better.”
Based on their data, the Mt Sinai group concluded that as many as 10-30 percent of post-COVID patients were experiencing some variation of post-acute COVID-19 syndrome, what came to be known as “Long COVID.” Considering the U.S. has had more than 30 million cases of COVID-19, ten percent is a huge number of people!
Two COVID-19 survivors wrote an opinion piece for the March 17, 2021, issue of the New York Times. They said that Long COVID “may turn out to be one of the largest mass disabling events in modern history.” Both writers have experienced different variations of Long COVID. Fiona Lowenstein has had gastrointestinal problems, rashes and hives, and migraines. Hannah Davis experienced fevers, headaches, memory lapses, and a brain fog that made her unable to work.
The National Institutes of Health recently announced an initiative to study Long COVID. Lowenstein and Davis are gratified that medical researchers are taking this seriously. They advocate that more attention must be given to this issue. Because some of their family and friends have brushed off their concerns, they have joined the Body Politic COVID-19 Support Group, which has formed a “Patient Led Research Team” to follow and share ongoing research.
Research data are a long way off. What can those with symptoms of Long COVID do right now? The team at Mt Sinai are trying breathing therapies that seem to help. Dr. Jacob Teitelbaum, a lead researcher of fibromyalgia and chronic fatigue syndrome, says that Long COVID has similarities to chronic fatigue. He has published his findings in the Journal of Chronic Fatigue Syndrome, and he suggests that sleep, hormone and immune support, good nutrition, exercise (especially walks in the sunshine), and staying hydrated can help. In other words, the same good habits that are beneficial to health in general seem to help with Long COVID too.
As a fellow COVID survivor, I want my message to others experiencing some version of Long COVID to be: We’re still in the early stages of learning about this, as we once were with Lyme disease and chronic fatigue syndrome. You are not imagining this. Your experience is legitimate. Know that you’re not alone.