Kristin Novotny once led an active life, with regular CrossFit workouts and football in the front yard with her children, as well as a job directing the kitchen of a middle school. Now the 33-year-old mother of two of De Pere’s children, Wisconsin, has to rest after any activity, even taking a shower. The conversations leave her breathless.
Long after their initial coronavirus infections, patients with a disease known as “long covidi” continue to struggle with a variety of symptoms such as fatigue, shortness of breath, gastrointestinal problems, muscle and joint pain, and neurological problems. Novotny has been fighting these and more, even though he tested negative for covid-19 seven months ago.
Experts still don’t know what causes long covidi or why some people have persistent symptoms, while others recover in weeks or even days. Nor do they know how long the disease lasts. formally referred to by scientists as post-acute sequelae of SARS-CoV-2 infection, or feed – during.
But people who did not test positive for covid (due to lack of access to evidence or a false negative result) have difficulty getting treatment and disability benefits. Their cases are not always included in long-term covide studies despite their persistent symptoms. And sometimes, as an aggravating factor, many find that family, friends, or even doctors are hesitant to take covides.
Novotny, who became ill for the first time in August, initially returned to work early in the school year, but symptoms increased and, a day later, he was unable to breathe at work. He left home and it has not been good enough to return.
“It’s sad and frustrating not being able to work or play with my kids,” Novotny said in an email, adding that it’s devastating to see her family’s concern for her. “My nine-year-old son is afraid that if I am left alone, he will have a medical emergency and no one will be there to help.”
Data on the frequency of covid tests of false-negative diagnosis are extremely limited. A study at the Johns Hopkins School of Medicine and the Bloomberg School of Public Health, which focused on the time between exposure and testing, found a median false negative rate of 20% three days after the start of the symptoms. A small study in China, conducted in the early days of the pandemic, a high rate of negative evidence was found even among patients ill enough to be hospitalized. And given the lack of long-term research, patients with persistent covidic symptoms have organized to study.
The haphazard protocols for testing people in the United States, the delays and difficulties in accessing the tests, and the poor quality of many of the tests left many people without tests who were infected with the virus that causes covid-19.
“It’s great that someone can get a positive test, but a lot of people who have covides will never have one, for a variety of reasons,” he said. Natalie Lambert, associate professor of research at Indiana University School of Medicine and research director of the covid support group Survivor Corps.
Lambert’s work with computational analysis has shown that long carriers face such a wide variety of symptoms that no symptom is a good covid detection tool. “If PCR tests aren’t always accurate or available at the right time and it’s not always easy to diagnose based on someone’s initial symptoms, we really need to have a more flexible and expansive way to diagnose covids based on presentations. clinics, ”he said. .
Dr. Bobbi Pritt, president of the clinical microbiology division of the Mayo Clinic in Minnesota, said four factors affect the accuracy of a diagnostic test: when the patient’s sample is collected, what part of the body it comes from, the technique of the person who the collection and type of test.
“But if one of those four things isn’t right,” Pritt said, “you could still have a falsely negative result.”
Time is one of the most nebulous elements to accurately detect SARS-CoV-2. The body does not become symptomatic immediately after exposure. The virus takes time to multiply and this incubation period tends to last four to five days before symptoms begin for most people. “But we know it can take up to 14 days,” Pritt said.
Testing during this incubation period, however long, means that there may not yet be enough detectable viruses.
“At the beginning of the infection, you may not see it because the person does not have enough virus to find it,” he said. Dr. Yuka manabe, an expert in infectious diseases and a professor in the Johns Hopkins University School of Medicine.
Novotny woke up with symptoms on August 14 and had a covid test later that day. Three days later, on the same day that the test result turned negative, he went to the hospital for shortness of breath and chest pressure.
“The hospital chose not to test me because of the lack of evidence and told me to brag about being positive,” Novotny wrote, adding that hospital staff told him that probably test too soon and receive a false negative.
As the virus leaves the body, it becomes undetectable, but patients may have symptoms because their immune responses began. At this point, “you see more of an inflammatory phase of the disease,” Manabe said.
An autoimmune response, in which the body’s defense system attacks its own healthy tissue, may be behind persistent covid symptoms in many patients, even if there are small amounts of virus. hidden in the organs is another explanation.
Andréa Ceresa is approaching a year long covidi and has an extensive list of symptoms, crowned by gastrointestinal and neurological problems. When he fell ill last April, 47, from Branchburg, New Jersey, he had trouble getting a coveted test. Once he did, his result was negative.
Ceresa has seen so many doctors since then that she can’t keep them straight. She is considered fortunate to have finally found some “fantastic” doctors, but has also seen many who didn’t believe her or try to turn her on, a frequent complaint from long-haul carriers.
A couple of doctors told him they didn’t think his condition had anything to do with covid. One told him he had it all in his head. And after two months of waiting to see a neurologist, she didn’t order any tests and simply told her to take vitamin B, leaving her “crying and devastated”.
“I think the negative test did it absolutely,” Ceresa said.
Fortunately, among a growing number of physicians who specifically treat patients with long covides, positive test results are not vital. A la patient-led research, the symptoms reported by patients were not significantly different between those who had positive covide tests and those who had negative tests.
Mónica Verduzco-Gutierrez, PhD in rehabilitation and physical medicine who runs the University of Health Post-COVID recovery program in San Antonio, he said approximately 12% of patients he has seen have never taken a positive covid test.
“The initial test, for me, is not as important as the symptoms,” Gutierrez said. “You have to spend a lot of time with these patients, provide education, encourage yourself and try to work out all the problems they have.”
He said he tells people “what is being done is done” and, regardless of the state of the test, “now we have to deal with the result.”
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Along with policy analysis and survey, KHN is one of the top three operational programs of KFF (Kaiser Family Foundation). KFF is a gifted non-profit organization that provides information on health issues in the nation.