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CLEVELAND, Ohio — It started with the inability to read a text message.
Hannah Davis thought she wasn’t processing the words because she was tired. Then came fever, memory loss, severe headaches and intense fatigue. Davis had COVID-19.
More than 100 days since she first became ill, her symptoms persist. She isn’t able to work or exercise. She has intense fatigue and insomnia, back pain, severe headaches and “lung burn,” or painful inhalation. Brain fog is the worst. “I don’t remember yesterdays generally,” said Davis, 32, a North Royalton native who lives in New York City.
Davis is part of a coterie of COVID-19 patients who call themselves “long haulers,” or patients with persistent symptoms that last more than two weeks.
Symptoms include extreme fatigue, shortness of breath, fever, cough and loss of appetite. Some people experience gastrointestinal symptoms such as diarrhea and vomiting. Neurological issues such as brain fog, short-term memory loss, insomnia, hallucinations, vertigo, hearing and vision loss and tremors, also are typical.
Most long haulers were never sick enough to be hospitalized or placed on a ventilator, so their cases technically count as mild. Yet some keep feeling symptoms for months. Scientists can’t explain why some COVID-19 patients recover in the standard two weeks, and others don’t.
“Anyone can be a long hauler,” said Dr. Christopher Babiuch, medical director of the Cleveland Clinic’s COVID-19 home monitoring program. “We don’t know why this is happening.”
The Clinic’s home monitoring program offers support to COVID-19 patients and connects long haulers with specialists.
On top of dealing with a constellation of symptoms affecting every part of the body, those dealing a prolonged recovery often face disbelief from doctors, friends and family who wonder why they’re not up and about yet.
A woman on Twitter summed up her experiences in a plea for patience.
“Today marks day 65 of being symptomatic from COVID-19,” she wrote. “Over two months of uncertainty and fear that I will not recover. Over two months of thinking nearly every day that this time, this shortness of breath or this irregularity in my heartbeat could put me in the hospital or worse. Every few days, I get a new symptom I didn’t have before. . . . My doctors can’t give me advice because they’re just as lost as I am.”
The idea that getting a mild case of COVID-19 is no big deal, so robust people should just get the illness and get it over with, is akin to playing Russian roulette with your health, doctors said.
Related: No, don’t willfully expose yourself to coronavirus just because you want to get it out of the way
About 20% of COVID-19 patients require hospitalization, and 15 to 20% of those hospitalized are sent to the intensive care unit, according to estimates in the New York Times.
Those who survive a lengthy stay in intensive care or on a ventilator can be left with serious long-term health problems, including impaired lung function, neurological problems and cognitive deficits. The disease has been linked to disabling strokes.
At first, the illness was thought to be mainly respiratory. Now, we know it is a systemic illness that infects cells in the blood vessels, causing inflammation and blood clotting, said Dr. Keith Armitage, infectious disease specialist at University Hospitals.
Blood vessels reach every part of the body, explaining why prolonged symptoms affect various organs and why long haulers experience so many different symptoms, Armitage said.
It’s also possible that the coronavirus, which causes COVID-19, triggers a type of chronic fatigue syndrome marked by brain fog and extreme fatigue.
Chronic fatigue syndrome could be worse or different in COVID-19, because blood vessel inflammation is unique to the illness, Armitage said.
Dr. Thomas McGinn, deputy physician in chief at Northwell Health in New York City and chairman of the Feinstein Institute for Medical Research, is part of a team collecting data on 800 COVID-19 patients. Data includes neurological, cardiac, gastric, liver and pulmonary tests, as well as depression, anxiety and quality of life.
McGinn hopes to find out if recovered patients will have blood clotting problems that might make surgery risky, and if the illness causes permanent changes in the lungs.
“The virus affects people differently and affects organs differently in each person,” McGinn said. “We need to understand which people are at risk for developing long-term consequences. We don’t know who those people are yet.”
Long haulers are turning to each other for guidance and support on social media. Facebook has The Long Haul and Survivor Corps, among others. The Body Politic COVID-19 Support Group has more than 6,000 members from across the globe, some of whom are on day 150 or 160 of their recovery.
In an attempt to uncover answers for themselves, Body Politic members recently conducted a patient-led survey of prolonged COVID-19 symptoms.
Of the 600 members surveyed, about three in five are between the ages of 30 and 49. More than half have not been hospitalized, while another 38 percent have visited the emergency department but were not admitted.
A quarter of respondents in the Body Politic survey have tested negative on a nasal swab test, but that doesn’t mean they don’t have COVID-19. At the third day of symptoms, 20% of tests are false negatives, and that number goes up over time, and by day 21 of symptoms, 66% of tests are false negatives, according to a recent peer-reviewed study.
The Body Politic survey also found that sizable percentages of those surveyed had asthma, a vitamin D deficiency, acid reflux or an autoimmune disorder, said Davis, who co-authored the survey.
The group is planning a second survey that will explore symptoms over 16 weeks and mental health. “We know the questions to ask because we are living the experience,” Davis said.
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A mild case of COVID-19 is not a mild case of the flu: Long-haulers’ symptoms linger for months, and lasting - cleveland.com
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