Julia Walsh-Messinger* was feeling good.
“It’s scary to say it,” she said by phone, a few coughs peppering the conversation.
Walsh-Messinger, 38, a clinical psychologist, first developed COVID-19 symptoms around March 17. Initially, her symptoms were typical: congestion, cough, tightness of the chest, fevers, chills, muscle aches, the inability to smell or taste. Now she has been sick for almost eight months, quarantined in her apartment in Dayton, Ohio.
She is among the small percentage of patients whose symptoms persist past a few weeks. Doctors, medical scholars and researchers have nicknamed these patients long haulers. Though there is scant data on them, a study by British scientists claims that 10 percent of COVID-19 patients will develop long-term illness.
“Patients get better but they complain of a wide variety of things,” said Dr Avindra Nath, clinical director of the National Institute of Neurological Disorders and Stroke at the National Institutes of Health.
Nath lists among their possible symptoms ‘brain fog’ or cognitive dysfunction, fatigue, elevated heart rate, tingling in the hands and feet, constipation, persistent low-grade fever, persistent back or chest pain, and sleep disruption. However, scientists have identified no underlying cause, no similarities or patterns, and no holistic or effective treatment for long haulers.
Last month, the Pulmonary Wellness Foundation opened first free-standing clinic* in New York dedicated to treating them, on Second Avenue in midtown Manhattan.
It follows an approach spearheaded by Noah Greenspan, a physical therapist with a pulmonary and cardiovascular specialty, that attempts to rewire the body’s autonomic functions through exercise and breathing techniques. Autonomic functions regulate oxygen levels and heart rate, maintaining the body’s stability.
“The approach has to be individualized, and we need to find a balance between helping and overdoing,” Greenspan said. “It’s a slow process. Day to day, patients can present differently.”
After an initial telehealth consultation, patients come in for a performance test. If they can change positions – from seated to standing to lying down — without difficulty, the program will include techniques that help regulate their breathing, along with brief treadmill exercises. Patients using the treadmill simultaneously have an EKG record their heart’s electrical activity, while a team member monitors their blood pressure and oxygen . If the performance test is not optimal, the program will only include breathing exercises.
So far five patients have come into the center since it opened, and Greenspan is optimistic about their prognoses.
“We’re beginning to see positive changes,” he said. “It took a while before patients responded positively to activities.” Insurance covers the treatment, but when needed, the foundation will pick up the cost.
Nath agrees that such rewiring can take place, especially in younger people, but he notes that “the autonomic system is complicated; it’s nerves, the brain, there are different parts. How do you find out where the defect is?” But as long as it isn’t hurting patients, he added, he sees no harm in the approach. “At least you’re trying.”
Walsh-Messinger sought help from multiple sources as she tried to recover. During her second trip to a hospital emergency room, tests showed that she had high blood pressure and her EKG was borderline. Later, however, additional testing showed that her heart and pulmonary functions were good and her lung X-Ray was clear; nothing explained her symptoms. Doctors told her the problem was anxiety, and sent her home with treatment for low oxygen levels.
“I saw more and more doctors. I got every organ checked out and it all looked good,” she said. “Prior to getting sick, I was healthy but now my blood pressure would skyrocket and then plummet. I had a bad cough. My heart rate would be high as if I’m working out when I wasn’t. The fever persisted.” Only in the past month, she said, has her fever remained below 100 degrees.
“It’s frustrating,” she said. “I get it’s new but I wanted someone to tell me what to do.” Online, she found the Pulmonary Wellness Foundation center and Greenspan.
In August, she started the foundation’s online boot camp, which introduced her to breathing exercises, meditation, exercise and other long haulers. She credits the program with her improvement and plans to come to the center in person, for more intensive treatment, later this month.
“The hardest part was not knowing if I was going to get better,” Walsh-Messinger said. Understanding the problem, “you can tackle it or prepare yourself. With nothing to plan for, it’s waiting and seeing. Working with Noah gave me hope.”
(Photo of Marion Mackles, physical therapist, and Wai Chin, exercise physiologist, at the Pulmonary Wellness Foundation by Dala Osseiran)
*CORRECTION: NYC Reopens initially misspelled Walsh-Messinger’s name, and inaccurately said the clinic was the first in the city.