Business Insider turned to 17 patients with coronavirus who had symptoms for more than 100 days.
Few of them received a clear answer from doctors about why they are still sick.
Their life has changed a lot over the past few months.
Some face unemployment or may have to apply for disability as they look down on the trunk of a chronic illness.
People who have coronavirus symptoms for more than 100 days have a nickname for themselves: truckers.
They have been dealing with the virus much longer than most of their peers, and much longer than their doctors expected. Because their illnesses persist without explanation, these patients turn to online support groups on Facebook, Reddit, and Slack, where they seek medical advice, share war stories, and share news about their health.
“We are all diagnosing each other,” said Business Insider 56-year-old Peggy Goroli of Long Island, a Facebook Coronavirus Support Group. “You will hear someone else say something, and then you will understand that this is happening to you.”
Related: How to Treat Symptoms of a Light Coronavirus at Home
Since March 5, Goroli has had symptoms of COVID-19. When she initially fell ill, she quickly developed coughing, fatigue, and shortness of breath. Her lips and eyelids turned purple. She had a positive result twice: once in April, then again in May.
Her third diagnostic test returned negative on May 21, but more than 100 days after the onset of her symptoms, most of them did not disappear.
“I’m trying to tell other people that they have to be very careful, this is not a joke, and I’m still sick and people can’t understand,” Goroli said. “The only place where I find out that it’s normal and normal is the group.”
Business Insider turned to 17 patients with coronavirus, such as Goroli, who had symptoms for more than 100 days. Some were in the emergency room. Many of them are young – from the age of 20 to 30 years. They do not understand why their symptoms lasted so long.
Infections in most of these patients dramatically changed their lives. They struggled with chest pain, shortness of breath, nausea, palpitations, loss of taste and smell, and other long-term symptoms for several months. Some face unemployment or are forced to apply for disability because they are looking at a barrel of chronic illness. Others have struggled to take care of their children or family members.
These cases can provide important information for those developing coronavirus treatments, formulating workplace policies, and issuing public health guidelines. But at the moment, these truckers say, they are in the shadow of a pandemic.
“My symptoms are not consistent with the test results”
Getty Images / John Moore
At the beginning of the pandemic, the US Centers for Disease Control and Prevention proposed symptoms of mild coronavirus usually lasted 14 dayswhile the World Health Organization reported that recovery can last up to six weeks for patients with severe or critical situations.
More recently, both agencies have recognized that coronavirus may have long-term symptoms, but none of them suggested a time frame.
“We hear unconfirmed reports of people who are constantly tired, short of breath. It’s hard to say how long this will last, ”said JC Butler, CDC Deputy Director of Infectious Diseases, speaking on June 25.
“Indeed, there are some people with persistent symptoms, such as a prolonged cough,” said Dr. Maria Van Kerchov, technical director of the WHO pandemic response during a press conference last week. “They may feel tired for some time, they may feel shortness of breath while climbing stairs, but we are working to better understand how the recovery looks – and, more specifically, and, more importantly, what type of long-term care” if needed.”
But the stories presented by Business Insider present a darker picture than this.
For Gorol, going to the grocery store means spending the rest of the day on her couch, struggling to breathe. Other patients reported holding their breath from walking with dogs, playing with children, or going to the mailbox. Some barely left their beds in a few months.
“Only in the last couple of weeks I went into the living room,” Cheyenne Beyer, a 27-year-old woman living in Austin, Texas, told Business Insider. “The fact that three months have passed and I still don’t know how he will progress or become better is just scary.”
Beyer has visited the emergency room three times since February, when she began to have symptoms. In March, she was refused a coronavirus test because at that time she did not meet the CDC recommendations. After a positive test result in April, her heart began to beat more than 100 times per minute (a condition known as tachycardia), and the oxygen level in the blood dropped below normal levels.
In May, she was admitted to the hospital overnight, but her blood count and chest CT scan returned. She still has a fast heart rate, inconsistent blood pressure readings and a low temperature.
“If you look at my test results, I look healthy like a horse, but my symptoms do not match the test results,” Beyer said. “Almost every doctor I came across first tried to relate this to anxiety, and then simply ignored everything else that I said.”
Beyer tested negative for antibodies in May. She said she was crying.
“The most disappointing part of all this is no answers,” Beyer said. “My attending physician cannot say with certainty that the first test was not false positive, and she cannot guarantee that the antibody test is not false negative.”
Several patients told Business Insider that their primary care physicians had referred them to specialists, including pulmonologists and infectious disease doctors. But for the most part, these visits have not given many answers.
“Many of these patients are being turned away,” said Dr. Ramsey Asfour, an infection specialist in the San Francisco Bay area, to Business Insider. “The infectious disease doctor says,“ Well, there are no signs of infection, ”and the oncologist says,“ You don’t have a blood disease or cancer, ”and the pulmonologist does not know what you have. you stayed in that limbo. “
Asfour said that part of his work is understanding infections that are not consistent with normal mold. He saw elderly patients with mononucleosis who had severe fatigue for two years or viral infections that caused a lifelong autoimmune disease such as lupus or rheumatoid arthritis. According to him, coronavirus can have a similar effect on patients.
Although the virus initially affects the airways, it can also invade the heart, kidneys, liver, intestines, and brain. This explains why the Big Three symptoms associated with the virus — fever, dry cough, and shortness of breath — do not apply to all patients, and why symptoms such as dizziness, headache, diarrhea, and nausea became an additional warning of signs.
“There are so many people who become infected that there will be a handful that reacts differently,” Asfour said. Even if patients with coronavirus do not have blood clots or irreversible organ damage, he added, their immune system can still fail and damage healthy tissues.
“You must separate the damage from the disease,” Asfour said. “Symptoms probably come from an immune response.”
But it’s not always easy for doctors to make that distinction, he added.
“Now it will be difficult to say which subset is active, the current infection and which subset is really just pure immune dysfunction,” Asfour said.
‘When will it end?’
Studies show that most patients with COVID-19 most contagious during the first week of symptomsor before their symptoms begin. After about 10 days, the risk of contracting another person is reduced. People who test positive after two weeks of symptoms can get rid of the dead virus, but it’s hard to say.
“My infectious disease specialist tells me that I’m 100% not contagious, but I’m not 100% sure,” said Business Insider, a patient in Westchester County, NY who asked for anonymity because she is also a doctor . “I still wear a mask in my house when I talk with my family.”
Two weeks after the development of angina and weakness on March 11, the doctor returned to work in accordance with the recommendations of the CDC. She wanted to help treat patients, as there were many cases of coronavirus in her hospital.
“People were dying left and right,” she said. “We had patients that I knew, who were 18 and 38 who were intubated.”
But on her fifth day ago, she could hardly climb the stairs, gasping for air. She and her husband decided to make up their will.
“I again had a stream of emotions of disappointment and concern about what would happen. When will it end?” she said. “Will I ever be able to work normally?” Will I be there for my children? ”
Nothing she had tried in the past few months — meditation, supplements, light stretch marks — made her feel stronger, she said.
Imminent threat of disability or unemployment
Nick Oxford / Reuters
Lack of sleep or severe stress can exacerbate a person’s symptoms when infected with the virus.
“We need to look a little deeper,” Asfour said. “Was this a person who had chronic stress from work? It may be a successful business, but it is always on the road, five to six hours of sleep at night, which, as we know, is not enough. And they get COVID, and they just have these chronic, chronic symptoms. It can happen after pneumonia. “
When Felesia Shut took the temperature on March 11, fell ill and began to chills, she was already stunned, combining the two positions of property manager and private tax accountant. She got tired so quickly that her husband had to take her to the toilet.
“I tried my best to try to manage the property and then run the business,” said 38-year-old Business Insider. “I slept, maybe three in the morning.”
The jester lives in Atlanta with his husband, his parents, four teenage children, two children of her sister, and her brother, who has special needs. According to her, her daughter’s school was one of the first in Georgia, where teachers had a positive test for coronavirus. She suspects that perhaps this is how she got sick, but she doesn’t know for sure.
Despite the fact that Jester is the only person in her house without any serious health problems, she is the only one who has symptoms of coronavirus. According to her, her children suffer from asthma, so she uses their nebulizer to help her breathe.
During the first two weeks of her illness, Jester was able to receive the salary of his property manager on an ongoing basis through the Coronavirus Aid, Aid and Economic Security Act (CARES). After that, she had to apply for disability. She receives disability checks from the first week of May.
The jester said that she began to feel good enough to work in the middle of June almost a few hours a day. But she worries about how much she can take on.
“This work is very active. I rise and fall. I show apartments, talk with sellers, ”she said. “I’m still physically exhausted.”
Many coronavirus patients with long-term symptoms experience similar problems. Beyer said she refused to work at the local library. Her boyfriend, who lives with her, also does not work.
“This is a single-income family and financially, it’s hard,” she said. “I don’t know how I’m going to make money if I can’t get better.”
Time heals, but not always
One of the most active resources for patients with coronavirus is the Slack group, created by the strange feminist Wellness team Body Politic. The group channel for patients who have been ill for more than 90 days has about 5,000 members.
“This group is just the best thing,” says Lauren Nichols, 32, who works for the US Department of Transportation. previously told Business Insider, “It’s good for setting expectations.”
Nichols said she had severe nausea every morning, as she tested positive for the virus in March. In the same month, she joined Body Politic and is now one of her administrators.
The group continues to welcome new members such as Claire Hegarty, a 23-year-old graduate student from Philadelphia, PA. She discovered Body Politic less than a month ago. Before that, she thought her case was an anomaly.
Claire Hegarty (left) reunited with her boyfriend (right) after a negative coronavirus test in June.
In March, Hegarty developed chest pains and shortness of breath. After five or six weeks of feeling about returning to normal, her symptoms returned to their full potential.
“It was mentally useful to know that I’m not the only one struggling with this,” she said. “People write their posts, and that’s exactly what I feel – I just can’t explain it in words.”
But Dr. Asfour said it was difficult to generalize about cases of coronavirus. He added that many long-distance patients can still fully recover.
“It’s different for different people,” he said. “Usually time heals. But not always. ”
Hilary Bruck, Samara Abramson and Dylan Bart provided reports.
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