Covid’s long-haul carriers confuse doctors with persistent symptoms

Tasha Clark tested positive for Covid-19 on April 8, 2020. A 41-year-old woman in Connecticut was relieved that her symptoms such as diarrhea, sore throat, and body pain were not particularly serious at the time. She didn’t have a fever and wasn’t hospitalized. So she thought that if the virus did not kill her, within a few weeks she would return to work and take care of her two children.

She made a pretty miscalculation. More than a year later, she is an example of Covid’s long-haul textbook.

Clark suffers from various disability symptoms such as neuralgia like blow torch, loss of sensation in the arms and legs, inflammation of the spine that makes it difficult to sit straight, brain fog, dizziness, and increased heart rate when standing. I’m suffering. She is taking steroids and nine other prescription drugs at the Yale University clinic to treat neurological complications, including twice-monthly immunotherapy injections.

Clark had to take a low-paying medical billing position when her front desk job at a physical rehabilitation center couldn’t cope with her disability. Her life outside of work is a never-ending odyssey of medical appointments, scans, and lab tests. “I didn’t expect my life to be as diminished as it used to be in less than a million years,” says Clark, who lives in Milford with her husband and two school-age girls. “I’m scared not knowing if I’ll recover.”

Based on Clark-like cases, the range of mysterious and protracted symptoms caused by Covid-19 is more apparent. However, more than a year has passed since the pandemic occurred, and the cause of the symptoms and how to treat them are not clear. What makes the study particularly difficult involves a very wide range of health issues, from brain fog to cardiovascular problems to rare cases of psychosis, and it was agreed who would be eligible for long-distance patients. There is no metric.

“There is no consensus on how to define, diagnose, or measure this syndrome,” Steven Dikes, a professor at the University of California, San Francisco, told the House Energy and Commerce Commission’s Health Committee on April 28. It was. And the state-of-the-art technology is messed up. “

Estimates vary widely, but the data suggest that Covid may leave a legacy of results after the pandemic is over. According to a UK government survey, nearly 14% of Covid patients report symptoms that last for at least 12 weeks. In another study at the University of Washington, one-third of people diagnosed with mild Covid cases were still symptomatic after about six months.

In addition, unhospitalized Covid-19 patients treated by the U.S. Department of Veterans Affairs have a 59% increased risk of dying six months after illness and blood compared to non-illness patients. I was suffering from such a condition. Blood clots, diabetes, stroke, and nervous system problems, according to a study published in Nature in April.

“We don’t understand what’s happening in their biology,” says Serena Spudich, a neurologist at Yale University, treating patients after Covid. “At this point, it’s really, really unknown.” The patient’s symptoms are obvious, but often not revealed by MRI scans or other tests of the brain, making it difficult to determine the cause of the symptoms.

To better understand this issue, the National Institutes of Health is spending $ 1.15 billion on long-term Cohort research, with a huge number of tens of thousands of post-Cohort patients sharing data from mobile apps. Focus on collecting good cohorts. Wearable device. NIH director Francis Collins told Congress that he had already received 273 research proposals and would announce funding within a few weeks.

For Eddie Palacios, a 50-year-old commercial real estate broker in Naperville, Illinois, the answer isn’t immediately available. A month after the mild Covid case occurred last September, he began to forget his words. One day, after climbing the roof to clean the gutter, he couldn’t remember where he was. His son had to help him.

“Sure, I have memory loss and my headaches don’t go away,” says Palacios, a cognitive rehabilitator at Northwestern Medicine who takes the prescription stimulant modafinil, which is used to treat narcolepsy, to boost alertness.

Still, he needs to take extensive notes during the conversation with the client. This is something he has never been to. He says he is lucky to be able to work from home. “If I were a 9 to 5 guy, I would be unemployed,” he says.

Autoimmune reaction

What makes people long-haul carriers? There are at least three possibilities. One of the main theories is that the fight against the virus causes a long-lasting autoimmune response after the actual virus. This may have happened to Clark. The theory is that the immune system “rises” during the first illness, but once the virus is gone, it doesn’t go back, says Avindra Nath, a researcher at the National Institute for Neurological Disorders and Stroke. say.

Another possibility is that the fight against Covid-19 leaves debris of viral particles that set up a generalized cycle of inflammation long after the pathogen itself has left. This may help explain why some people continue to test positives even after the infection appears to have disappeared.

The third theory is that the virus can find hidden places in human tissues and appear weeks or months after the immune system weakens. Other viruses, such as HIV and herpes simplex, are known to be hidden in the body for years. Akiko Iwasaki, an immunologist at Yale University, said that if there was a repository of such viruses, “probably very difficult to reach and can be very deep in some tissues.” It was.

Although the concept of hidden reservoirs has not been proven, some long-haul carriers initially show mild symptoms and can also explain case reports that vaccines provide relief for long-haul patients. I will.

While researchers are looking for answers, major medical centers such as Northwestern Illinois Medicine and Mount Sinai School of Medicine in New York will open and obtain clinics to manage the myriad symptoms of patients. Supporting enough lucky people. The Neurocovid Clinic at Yale University was founded this October and has treated approximately 100 patients, including Clark.

Clark’s husband, 47-year-old carpenter Richard Zayas, came with Covid in early April 2020. A few days later she tasted terrible in her mouth.

The first neurological symptoms occurred a week after her illness. She didn’t notice the hot pot touching her, so she took something out of the oven and burned her arm. A few weeks later, just as her sore throat and cough subsided, she began to lose sensation in her legs. Upon returning home from the drive, her legs gave up and she had to use her arms to pull up the stairs to her home. She suspected it was a complication of Covid, but doctors in the local emergency room said many things could be causing the symptoms and sent her home without extensive testing. She says.

Burning pain

A skin biopsy later found signs of nerve damage, and doctors put her in gabapentin for pain. However, her symptoms worsened and by July she was diagnosed with peripheral polyneuropathy. During the summer, she fell down many times, going up and down the stairs of her house and walking in the garden. The burning pain in her legs was so severe this winter that she went out several times and stood barefoot in the snow or on bare concrete to paralyze the pain.

“My skin feels like someone has a torch lamp,” she says.

Since becoming ill, Clark has seen more than 50 doctors and has performed numerous procedures, including two lumbar punctures, pelvic MRI scans, cognitive tests, and multiple sleep studies. In addition to neuropathy, she has been diagnosed with ankylosing spondylitis, autoimmune-related arthritis of the spine, and postural orthostatic tachycardia syndrome, causing rapid heartbeat and lightheadedness when standing.

“I think my immune system was overdriven when I was infected with the virus and has never been blocked since then,” she said. “Since then, I’ve basically attacked my body.”

Earlier this year, doctors at Yale University gave Clark an expensive antibody infusion, an intravenous infusion of immunoglobulin, when other treatments did not completely improve his symptoms. Lindsay McCarpine, a neurology resident at Yale University’s Neurocovid Clinic, says that immunoglobulin is given only to post-covid patients whose symptoms have a clear autoimmune association.

Clark returned to a remote location in December after eight months away from front desk work, but said he had to quit because his boss insisted on returning to the office. She found a medical billing job that she could do from an armchair. But that’s $ 1.47 cheaper per hour, so she has to work overtime to catch up. She is so tired after work that she can’t do much at home.

The most frightening part for Clark is not knowing how long the symptoms will last. When she signed with Covid more than 13 months ago, she says, “I thought I’d probably be the best in a couple of weeks, so I’ll be back to myself.” “Since then, I have been ill every day.”