Kristin Novotny once led an active life with regular CrossFit workouts and soccer in the front yard with her children – plus a job as a kitchen manager in a middle school. Now, the 33-year-old mother of two from De Pere, Wisconsin, needs to rest after any activity, even after taking a shower. Conversations leave her breathless.
Long after their initial coronavirus infections, patients with a disease known as “Long Covid” continue to struggle with various symptoms such as fatigue, shortness of breath, gastrointestinal problems, muscle and joint pain and neurological problems. Novotny has grappled with these and more, despite testing negative for covid-19 seven months ago.
Experts still don’t know what long causes Covid or why some people have persistent symptoms while others recover in weeks or even days. Nor do they know how long the condition – formally referred to by scientists as post-acute sequelae of SARS-CoV-2 infection, or PASC – will last.
But the people who have not tested positive for Covid – either due to lack of access to tests or a false negative result – are struggling to get treatment and disability benefits. Your cases are not always included in studies with long Covid, despite persistent symptoms. And, sometimes to make matters worse, many find that family, friends, or even doctors have doubts that they even got Covid.
Novotny, who got sick for the first time in August, initially returned to work at the beginning of the school year, but her symptoms increased and a day later she could not catch her breath at work. She went home and wasn’t good enough to return.
“It’s sad and frustrating not being able to work or play with my children,” Novotny said via email, adding that it is devastating to see how concerned her family is for them. “My 9 year old is afraid that if I am alone I will have a medical emergency and no one will be here to help.”
The data on the frequency of false-negative diagnostic Covid tests are extremely limited. A study at the Johns Hopkins School of Medicine and Bloomberg School of Public Health that focused on the time between exposure and test found a mean false-negative rate of 20% three days after symptoms began. A small study in China, done at the beginning of the pandemic, found a high rate of negative tests, even in patients sick enough to be hospitalized. Given the lack of long-range research, patients dealing with persistent covid symptoms have organized to self-examine.
The random logs of people testing in the United States, the delays and difficulty in accessing tests, and the poor quality of many tests left many people without proof that they were infected with the virus that causes Covid-19.
“It’s great when someone can get a positive test, but many people who simply have Covid will never have one for various reasons,” said Natalie Lambert, associate research professor at Indiana University School of Medicine and director of research for the Online Covid Support Group Survivor Corps.
Lambert’s work with computer analysis has shown that long distance drivers are exposed to such a wide variety of symptoms that no single symptom is a good screening tool for Covid. “When PCR tests are not always accurate or available at the right time, and diagnosis from a person’s first symptoms is not always easy, we need to have a more flexible and comprehensive diagnostic method for Covid based on clinical presentations,” she said.
Dr. Bobbi Pritt, chairman of the division of clinical microbiology at Mayo Clinic in Minnesota, said four factors affect the accuracy of a diagnostic test: When the patient’s sample is taken, what part of the body it is from, the technique of collecting the person Sample and test type.
“But if any of these four things are wrong,” said Pritt, “you could still get a false negative result.”
Timing is one of the most nebulous elements in accurately detecting SARS-CoV-2. The body does not become symptomatic immediately after exposure. It takes time for the virus to multiply, and this incubation period is usually four or five days before symptoms appear in most people. “But we knew it could take up to 14 days,” said Pritt.
Tests during this incubation period, however long, mean that there may not be enough virus to be detected.
“You may not see it early after infection because the person doesn’t have enough virus to find it,” said Dr. Yuka Manabe, an infectious disease expert and professor at the Johns Hopkins University School of Medicine.
Novotny woke up with symptoms on August 14 and got a Covid test later that day. Three days later – the same day that her test result was negative – she went to the hospital with severe shortness of breath and chest pressure.
“The hospital didn’t test me because of test failures and told me to be positive,” Novotny wrote, adding that hospital staff told her she probably tested too early and received a false negative.
When the virus leaves the body it becomes undetectable, but patients may still have symptoms because their immune responses have been triggered. At this point, “you are more likely to see an inflammatory phase of the disease,” said Manabe.
An autoimmune reaction, in which the body’s defense system attacks its own healthy tissue, can cause persistent covid symptoms in many patients, although low levels of viruses hiding in organs are another explanation.
Andréa Ceresa is nearing Covid for a year and has an extensive list of symptoms crowned by gastrointestinal and neurological problems. When the 47-year-old from Branchburg, New Jersey fell sick last April, she struggled to get a Covid test. As soon as she did this, her result was negative.
Ceresa has seen so many doctors since then that she just can’t hold them. She feels lucky to have finally found some “fantastic” doctors, but she’s also seen many who didn’t believe her or tried to shed light on her – a common complaint from long-distance drivers.
A couple of doctors told her they didn’t think her condition had anything to do with Covid. One told her it was all in her head. And after waiting two months to see a neurologist, he didn’t order tests and simply told her to take vitamin B, which left her “crying and devastated”.
“I think the negative test absolutely did that,” said Ceresa.
Fortunately, with a growing number of doctors specifically treating patients with long covid, positive test results are not critical. In patient-led research, the symptoms patients reported did not differ significantly between those who had positive Covid tests and those who had negative tests.
Dr. Monica Verduzco-Gutierrez, a rehabilitation and physical medicine doctor who leads University Health’s post-COVID recovery program in San Antonio, said about 12% of the patients she has seen have never had a positive Covid test .
“The first test isn’t as important to me as the symptoms,” Gutierrez said. “You have to spend a lot of time with these patients, educate them, give them encouragement, and try to work on all of the problems they have.”
She said she told people, “What is done is done” and regardless of the test status, “Now we have to deal with the result.”
This story was produced by KHN publishing the California Healthline, an editorially independent service of the California Health Care Foundation.
KHN (Kaiser Health News) is a national newsroom that produces extensive journalism on health issues. Alongside Policy Analysis and Polling, KHN is one of the three most important operational programs of the KFF (Kaiser Family Foundation). KFF is a foundation that provides health information to the nation.