Kristin Novotny once led an active life, with regular CrossFit workouts, football in the front yard with her children and a job managing the kitchen at a middle school.
Now, the 33-year-old mother of two from De Pere, Wisconsin, has to rest after the simplest activities, even showering. Just having a conversation leaves her short of breath.
Novotny has been contending with these symptoms of a malady known as long COVID — including fatigue, shortness of breath, gastrointestinal problems, muscle and joint pain and neurological issues — despite having tested negative seven months ago for COVID-19.
Experts don’t know what causes long COVID or why some people have persistent symptoms while others recover in weeks or even days. They also don’t know just how long the condition — referred to formally by scientists as post-acute sequelae of SARS-CoV-2 infection, or PASC — lasts.
But people like Novotny who never tested positive for coronavirus — whether due to a lack of access to testing or a false-negative result — face difficulty getting treatment and disability benefits. Their cases aren’t always included in studies of long COVID despite their lingering symptoms. And, sometimes just as aggravating, many find that family, friends and even doctors have doubts they ever had COVID at all.
Novotny first became ill in August. She returned to work at the beginning of the school year, but her symptoms worsened. Months later, she couldn’t catch her breath at work. She went home and hasn’t been well enough to return.
“It is sad and frustrating being unable to work or play with my kids,” Novotny said. “My 9-year-old is afraid that, if I’m left alone, I will have a medical emergency, and no one will be here to help.”
Data about the frequency of false-negative COVID tests is limited. A study done at the Johns Hopkins School of Medicine and 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 symptoms start. A small study in China, conducted early in the pandemic, found a high rate of negative tests even among people sick enough to be hospitalized. Given the dearth of long-hauler research, people dealing with lingering COVID symptoms have organized to study themselves.
Haphazard protocols for testing people in the United States, the delays and difficulties accessing tests and the poor quality of many of the tests left many people without proof they were infected with the virus that causes COVID-19.
“It’s great if someone can get a positive test, but many people who have COVID simply will never have one for a variety of different reasons,” said Natalie Lambert, an associate research professor at the Indiana University School of Medicine who is the director of research for the online COVID support group Survivor Corps.
Using computational analytics, Lambert has found that long-haulers face such a wide variety of symptoms that no single symptom is a good screening tool for whether they have COVID.
“If PCR tests are not 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, expansive way of diagnosing for COVID based on clinical presentations,” Lambert said.
Dr. Bobbi Pritt, chair of the division of clinical microbiology at the Mayo Clinic in Rochester, Minnesota, said four factors affect the accuracy of a diagnostic test:
- When a person’s sample is collected.
- Which part of the body it comes from.
- The technique of the person collecting the sample.
- Aand the test type.
“But if one of those four things isn’t correct,” Pritt said, “you could still have a false-negative result.”
Timing is one of the most nebulous elements in accurately detecting SARS-CoV-2. The body doesn’t become symptomatic immediately after exposure. It takes time for the virus to multiply. This incubation period tends to last four or five days before symptoms start for most people.
“But we’ve known that it can be as many as 14 days,” Pritt said.
Testing during that incubation period means there might not be enough detectable virus yet.
“Early on after infection, you may not see it because the person doesn’t have enough virus around for you to find,” said Dr. Yuka Manabe, an infectious disease expert who is a professor at the Johns Hopkins University School of Medicine.
Novotny woke up with symptoms on Aug. 14 and got a COVID test that day. Three days later — the same day her test result came back negative — she went to the hospital because of severe shortness of breath and chest pressure.
“The hospital chose not to test me due to test shortages and told me to presume positive,” Novotny said, adding that hospital staffers told her she likely tested too early and had a false negative.
As the virus leaves the body, it becomes undetectable. But patients might still have symptoms because their immune responses kicked in.
At that point, “You’re seeing more of an inflammatory phase of illness,” Manabe said.
An autoimmune response — in which the body’s defense system attacks its own healthy tissue — might be what’s behind persistent COVID symptoms, though small amounts of virus hiding in organs is another possible explanation.
Andréa Ceresa is nearing a year of long COVID and has gastrointestinal and neurological issues. When the 47-year-old from Branchburg, New Jersey, got sick last April, she had trouble getting a COVID test. Once she did, her result was negative.
Ceresa has seen so many doctors since then that she can’t keep them straight. She feels lucky to finally have found “fantastic” doctors, but she’s also seen some who didn’t believe her. One said it was all in her head. And after she waited two months to see a neurologist, she said he didn’t order any tests and told her to take vitamin B, leaving her “crying and devastated.”
“I think the negative test absolutely did that,” Ceresa said.
Among a growing number of doctors specifically treating patients with long COVID, positive test results aren’t vital. In the patient-led research, symptoms patients reported weren’t significantly different between those who tested positive and those who had negative tests.
Dr. Monica Verduzco-Gutierrez, a rehabilitation and physical medicine doctor who leads UT Health San Antonio’s Post-COVID Recovery program in San Antonio, said about 12% of the patients she’s seen never had a positive COVID test.
“The initial test, to me, is not as important as the symptoms,” Gutierrez said.
She tells people “what’s done is done,” and, regardless of test status, “Now, we need to treat the outcome.”
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues.