Tasha Clark tested positive for Covid-19 on April 8, 2020. The Connecticut woman, now 41, was relieved that her symptoms at the time – diarrhea, sore throat and body aches – didn’t seem particularly severe. She never had a fever and was not hospitalized. So she figured that if the virus didn’t kill her, in a few weeks she would go back to her job and take care of her two children.
She made a significant miscalculation. More than a year later, she’s a classic example of a long-haul Covid.
Clark suffers from an array of disabling symptoms including torch-like nerve pain and loss of sensation in the arms and legs, inflammation of the spine that makes it difficult to sit upright, brain fog, dizziness and increased heart rate when standing. She takes steroids and nine other prescription drugs, including fortnightly immune therapy infusions at a Yale University clinic to treat neurological complications.
When his front desk job at a physical rehabilitation center couldn’t accommodate his disability, Clark had to take a lower paying medical billing position. His life outside of work is a never-ending odyssey of medical appointments, scans and lab tests. “I never thought in a million years that a year later my life would be reduced to what it was,” says Clark, who lives with her husband and two school-aged daughters in Milford. “Not knowing if I will ever recover is scary. “
The scope of the mysterious lingering symptoms triggered by Covid-19 emerges more clearly, based on cases like Clark’s. But more than a year after the start of the pandemic, what is causing the symptoms and how best to treat them is anything but clear. What makes research particularly difficult is that there is such a wide range of health issues involved -om brain fog to cardiovascular issues to rare cases of psychosis – and there is no metric. agreed to determine who qualifies as a long-term patient.
“There is no consensus on how to define, diagnose or measure this syndrome,” Steven Deeks, professor at the University of California, San Francisco, told the House Energy and Health panel on April 28. Commerce Committee. “Everyone uses different definitions. and the state of the art is a mess. “
While estimates vary widely, the data suggests that Covid could leave a legacy of consequences after the pandemic ends. A UK government survey found that nearly 14% of people with Covid reported symptoms for at least 12 weeks. In another study from the University of Washington, a third of people diagnosed with mild cases of Covid still had symptoms about six months later.
In addition, outpatients of Covid-19 treated by the US Department of Veterans Affairs had a 59% increased risk of dying within six months of contracting the disease compared to those who did not contract it and were suffering from diseases like blood clots, diabetes, stroke and nervous system problems, according to results published in April in the journal Nature.
“We don’t understand what’s going on with their biology,” says Serena Spudich, a neurologist at Yale University treating post-Covid patients. “It’s really, really unknown at this point. Although patients’ symptoms are clear, brain MRIs and other tests are often not very revealing, making it difficult to determine the cause of symptoms, she said.
To better control the problem, the National Institutes of Health is spending $ 1.15 billion on long-term Covid research and will focus on assembling a giant cohort of tens of thousands of post-Covid patients, who will share data from mobile apps and portable devices. It has already received 273 research proposals and will announce funding in a few weeks, NIH director Francis Collins told Congress.
The answers can’t come too soon for Eddie Palacios, a 50-year-old commercial real estate broker in Naperville, Illinois. A month after receiving a mild case of Covid last September, he began to forget words. One day, he couldn’t remember where he was after he climbed on the roof to clean the gutters; her son was to help her down.
“There’s definitely memory loss and headaches that won’t go away,” says Palacios, who is in cognitive rehabilitation at Northwestern Medicine and takes modafinil, a prescription stimulant, used to treat narcolepsy, to boost her condition. vigilance.
Still, he has to take lots of notes during conversations with clients, which he never did. He says he is fortunate to be able to do his homework. “If I were a 9 to 5 year old man, I would be unemployed,” he says.
What makes people long haul? There are at least three possibilities. One of the main theories is that the battle against the virus triggers an autoimmune reaction that lasts long after the virus. Maybe that’s what happened to Clark. The theory is that “the immune system is boosted” during the initial illness, but once the virus is gone it doesn’t come back down, says Avindra Nath, a researcher at the National Institute of Neurological Disorders and Stroke.
Another possibility is that the fight against Covid-19 leaves behind a detritus of viral particles that sets up a generalized cycle of inflammation long after the pathogen itself has left. This may help explain why some people continue to test positive long after their infections seem to be gone.
A third theory is that the virus can find hiding places in human tissue, allowing it to emerge weeks or months later when immunity wanes. Other viruses such as HIV and herpes simplex are known to hide inside the body for years. If there is such a viral reservoir “it’s probably very difficult to reach, it could be very deep in some tissue,” said Akiko Iwasaki, an immunologist at Yale University.
The concept of a hidden reservoir, while unproven, is consistent with the fact that some long-haul initially have milder symptoms and may also explain anecdotal reports that vaccines provide relief in long-haul patients.
As researchers search for answers, large medical centers such as Northwestern Medicine in Illinois and the Icahn School of Medicine at Mount Sinai in New York have opened clinics to manage the myriad of patient symptoms, helping those who are lucky enough to get it. Yale’s Neurocovidosis Clinic was set up last October and has treated around 100 patients, including Clark.
Clark’s husband, Richard Zayas, a 47-year-old carpenter, came down with Covid in early April 2020. A few days later she developed a horrible taste in her mouth, unlikely though she had ever experienced it before.
The first neurological symptoms appeared a week after the onset of her illness, when she burned her arm when taking something out of the oven because she hadn’t noticed the hot pan was touching her. A few weeks later, as her sore throat and cough subsided, she began to lose feeling in her legs. Coming home from a car ride, her legs gave way and she had to climb the steps of her house by her arms. Although she suspected it was a complication of Covid, doctors at the local emergency room said a lot of things could be causing the symptoms and sent her home without extensive testing, say- it.
A skin biopsy later revealed signs of nerve damage and the doctors put her on gabapentin for the pain. But her symptoms worsened, and in July she was diagnosed with peripheral polyneuropathy. During the summer, she fell several times while going up and down the stairs of her house or while walking in the yard. This winter, the burning pain in her feet was so severe that she went out several times and stood barefoot in the snow or on bare concrete to numb the pain.
“My skin feels like someone is holding a blowtorch on it,” she says.
Since falling ill, Clark says she has had more than 50 doctor visits and numerous procedures, including two lumbar punctures, pelvic MRI scans, cognitive tests and several sleep studies. In addition to neuropathy, she was diagnosed with ankylosing spondylitis, autoimmune spine arthritis, and postural orthostatic tachycardia syndrome, which produced rapid heartbeat and a feeling of lightheadedness upon standing.
Doctors “think my immune system exploded when I caught the virus and has never died out since,” she said. “He’s been attacking my body ever since. “
When other treatments didn’t completely improve his symptoms, Yale doctors earlier this year put Clark on an intravenous immunoglobulin infusion, an expensive antibody infusion. Lindsay McAlpine, a neurology resident at the Yale Neurocovidosis Clinic, says they only give immunoglobulin to post-Covid patients whose symptoms have a clear autoimmune link.
After being absent from her job at the front desk for eight months, Clark returned to remote in December, but said she had to resign when her bosses insisted she return to the office. She has found a medical billing job that can be done from her chair. But she’s paying $ 1.47 an hour less, which means she has to work overtime to keep pace. She is so exhausted after work that there is not much she can do at home.
The scariest part for Clark is not knowing how long the symptoms will last. When she contracted Covid over 13 months ago, “I thought maybe two or three weeks at the most and I would go back to my old self,” she says. “I have been sick every day since. “
(This story was not edited by NDTV staff and is auto-generated from a syndicated feed.)