Just as much of the country was closed due to the coronavirus pandemic in March, Michaeln Carlton’s 17-year-old son tested positive for COVID-19 and immediately handed it over to his parents.
Carlton showed the worst symptoms, but never went to the hospital and most recovered in a few weeks.
“Then, six weeks later, I got terribly ill. Like illness, I lost about 10% of my weight and could hardly get out of bed,” he finally landed at Johns Hopkins. Said a normally healthy 46-year-old Delaware woman. Hospital clinic for patients after COVID-19.
She was terribly tired, throbbing in her head, and thought she fainted because her heart beats too fast when she stood up. Symptoms suggested an incurable impaired blood circulation. In the case of postural tachycardia syndrome, it is called POTS.
Physicians are increasingly seeing patient disabilities long after COVID-19 infection, but far from the only protracted condition. Some patients are unable to shake shortness of breath or loss of odor. Others develop new symptoms such as heart palpitations and “brain fog” long after the initial infection.
Together, the National Institutes of Health collectively refer to the disease as post-acute COVID-19 syndrome, or simply long COVID. Victims are known as long-distance carriers.
No one knows how many long-haul carriers are among the approximately 18 million Americans who have been infected with COVID during the pandemic so far. Estimates range from 3% to 40%.
Discussions and investigations have begun, and there are some historical clues to the mysteries of medicine. However, doctors still do not know who is most likely to be a long-haul carrier or how long they will live with symptoms from mild discomfort to complete debilitation.
So far, doctors are treating long COVID symptoms little by little, warning that the virus does not always result in death or recovery.
“It takes time to understand what we’re dealing with,” said Andrea, a respiratory and critical care expert at the University of Maryland Medical Center, which runs the post-COVID-19 clinic.・ Dr. Levine said.
She said the main issue was the variety of symptoms in long-distance patients, which ranged in age, race, and health level. They have had various levels of illness since the first COVID-19 infection. As the number of long-term COVID patients grows, more hospitals are creating outpatient clinics with multiple specialists or expanding centers initially focused only on patients leaving the intensive care unit.
The medical community is also beginning to share information about the long COVID phenomenon in virtual seminars and journal articles, and patients are using social media to form support groups.
The US Centers for Disease Control and Prevention website lists the most common and long COVID symptoms. Dyspnea; Headache; Cough; Pain in joints, chest, muscles; Intermittent fever; Palpitations; Myocardial inflammation; Depression; Difficulty thinking and concentrating.
Melissa Hunt, a technician helping treat heart disease patients at the University of Maryland Hospital, is one of the long-haul carriers. She became infected in April and returned to work in June, but became unemployed again a few weeks later as her symptoms worsened.
Like Carlton, Hunt has never been hospitalized with COVID-19. A 33-year-old Odenton woman tested positive in early April, calling her symptoms “moderate,” and shortness of breath occurred after walking a few blocks.
She never recovered completely, but when her improvement peaked, she was impatient and returned to work. Hunt’s work included a 10-hour shift on her legs and on the phone at night, each time physical demands destroyed her throughout the next day. Before becoming infected with COVID, she attended a spin class or went for a three- or four-mile walk.
A few weeks after returning to work, she was wearing a new N95 mask, and a colleague said her breathing was terrible. Hunt went home and now slowly improves a lot of time on the couch, but still feels like having a “feverless flu”. In many cases, she couldn’t remember the common language and said she had to explain her meaning to her husband, a brain fog explained by other long-haul carriers.
“My doctor told me to keep walking alone, just don’t push yourself too hard,” Hunt said. “I want to get back to work. I feel guilty if I keep my colleagues short.”
She said it helped her to know that there were other long-haul carriers.
“Mentally, it’s better to know that I’m not the only one,” she said. “I was a little crazy at first. Now I want an explanation.”
NIH dedicated a two-day workshop to long-haul carriers in early December, led by experts including Dr. Michael Saag, an infectious disease expert at the University of Alabama at Birmingham.
The first step is to define the term long-haul carrier and figure out how many are affected, said Sarg, vice dean of global health and director of the university’s AIDS research center. He estimated that 3% to 5% of American COVID-19 patients show debilitating symptoms more than a month after infection. It does not count people like him who have prolonged hearing loss, loss of taste, and malaise that does not prevent him from working.
Next, researchers need to dig into the cause.
“The syndrome is so new and so diverse that we really don’t know what is causing the symptoms,” Saag said. “So we are forced to guess how to handle it.”
Some doctors may even suspect that the patient’s symptoms are associated with COVID-19, Sarg said. It happened for years in patients with Lyme disease who reported new symptoms well after the initial infection. The same is true for people infected with HIV who were later infected with AIDS.
In contrast, he said the long COVID is beginning to gain recognition during an ongoing pandemic, as so many people have it.
He said the cause may resemble a general theory of Lyme disease: a new autoimmune disease caused by bacteria that cause Lyme a few weeks after the course of antibiotics clears acute symptoms. It means that it will be done.
“But who knows,” Saag said. “COVID is less than a year.”
One of the doctors who suspected that the symptoms of COVID-19 might be prolonged is Dr. Daecheong, director of Hopkins POTS Clinic and Carlton’s doctor. He said that few people developed POTS after other coronavirus infections, such as the 2003 SARS and common colds.
He is currently treating 12 long-distance carriers who believe he has POTS, but the condition is usually not diagnosed until the symptoms last for 6 months.
POTS, which affects an estimated 1 million Americans, was not well understood even before the coronavirus pandemic. Cases often affect people with underlying health or genetic variation. Treatments vary, but often include hydration and exercise, and wearing compression socks to help return blood from the legs to the heart.
COVID-19 offers an opportunity for research, “a positive thing from a horrifying pandemic,” Chung said.
“The question is whether there is something specific to COVID-19 that makes people more susceptible to POTS,” he said. “We are actually learning.”
Long-haul carriers are keen on further research, including Carlton, who is missing out on classroom work and family life as a soccer mom and family chef.
“I haven’t cooked dinner for my family for months,” she said.
Rick Dresler was a 52-year-old Air Force Reserve Command, aviator, medic, and also a federal criminal investigator. He wants to apply his skills to himself and other “outlier” mysteries with long COVIDs.
Dressler tried to recover from a COVID-19 infection at home, but after difficulty breathing, he went to the emergency room in St. Mary’s County near his home in Leonard Town in March. He went home, but returned after vomiting blood. He ended up using a ventilator twice, and the second time he prepared himself and his wife via text message for the prospect that he could never come off.
He eventually recovered enough to be discharged, but remained far from his military-level mental and physical health. He is chronically short of breath, tired, and always has mild headaches and joint pain. His sense of smell and taste has not returned, he often forgets things and finds himself lacking in patience. He needs hours of naps.
Even the joy of brewing good coffee has disappeared. He can’t stand the taste of metal.
Tests have shown that he does not have COVID-19, but makes extra red blood cells, like those who live in the highlands and need to carry more oxygen to their bodies.
“No one can explain it,” he said. “I seem to live in Denver, but I don’t live in Denver. We are at sea level.”
There is also no explanation as to why Dressler became so ill and had symptoms when his wife and one of the 12-year-old twin boys did not get sick and recovered. His other son never showed symptoms.
“It’s absolutely frustrating,” he said. “When I wake up, the first thing I think about is when I can get back to bed. That’s totally ridiculous.”
He currently spends part of his day reading and researching information that may be useful to researchers. What exactly are his symptoms, how have they changed, and what can help? What other tests could reveal the origin of long COVID? What kind of research can he apply for? He is discussing them with Dr. Levine at the Post COVID Clinic at the University of Maryland where he is being treated.
“I want to help find funding for my research,” Dresler said. “But it comes after awareness.”
Dr. Ashraf Forsey, a Johns Hopkins pulmonary disease and emergency physician who cares for patients in the clinic after COVID in the hospital, says doctors are already investigating similarities in some long COVID patients. Stated. They include lung problems due to acute respiratory distress syndrome and a severe inflammatory response to viral infections that are known to cause long-term lung damage and scarring.
Another area being investigated included psychiatric conditions, and Fawzy said it had long been seen in patients after long stretches in the ICU. Some people suffer from depression, anxiety, and even PTSD after a serious illness.
Doctors may discover that a patient has an underlying health condition or genetic predisposition that he or she does not know about. This helps explain why some people get sick and who remain sick.
However, doctors are still seeing unexpected symptoms such as hair loss. Currently, dermatologists belong to the Hopkins team along with other professionals. Together they currently handle about 300 long-haul carriers.
As the pandemic continues, Forsy said more post-COVID clinics in hospitals with specialists will be needed, but many medical staff still need to focus on acute cases.
“People have focused on mortality,” Forsy said. “But it’s important to remember that many people survive the infection, whether or not they need to be hospitalized, but end up with debilitating and life-changing sequelae.”
Horrible uncertainty of long-range COVID-19
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