By Missy Schrott | email@example.com
Old Town resident Amy Gurtler has symptoms of COVID-19 – fatigue, dry cough, chest pain, body aches and shortness of breath. She’s continued to experience these symptoms since mid-March, but her tests for the novel coronavirus and its antibodies have both come back negative.
Gurtler could be one of the many people worldwide who get false negative test results for COVID-19. She could also be one of the many who end up fighting the virus for months with no relief in sight.
“The biggest overriding theme is just the confusion in terms of both my diagnosis and recovery,” Gurtler said. “Even at this point, it really seems like I had COVID, but I still don’t even know for sure, and then the aspect of recovery, you don’t really hear a whole lot about these longterm cases.”
Aside from the negative test results, Gurtler seems to check all the boxes for someone with COVID-19.
She began to exhibit symptoms on March 15, exactly 14 days after she flew from Denver to Washington D.C. on March 1. The incubation period for COVID-19, or the period of time between exposure and the onset of symptoms, ranges from two to 14 days, according to the Centers for Disease Control and Prevention.
Gurtler’s initial symptoms were fatigue, a sore throat, a dry cough, minor shortness of breath, chills and a slight fever. The symptoms were minor enough that Gurtler dismissed them as a cold.
“My temperature was only 99, so I thought, ‘Okay, I don’t really have COVID because my temperature’s supposed to be higher. It’s supposed to be 100 and above,’” Gurtler said. “My coworker had a cold, and I don’t ever get allergies, so I just assumed, ‘Okay I probably have a cold.’”
After a week of battling the minor cold-like symptoms, things got worse.
“Starting the week of March 22, that was the worst week of all,” Gurtler said. “It just kind of felt like this vice clamped down on my chest. I was having a lot of trouble breathing. It was just kind of like you’re breathing and you’re just not getting enough air. It was especially bad at nighttime.”
Still, Gurtler didn’t seek to get tested for COVID-19. Like many people in the early days of the virus, Gurtler was worried about the shortage of test kits and didn’t think she’d qualify for testing, as someone under the age of 50 with no preexisting health conditions. She was also concerned about unnecessarily exposing herself to COVID-19 at an emergency room or testing facility if she didn’t already have the illness.
“Everything I was reading at that point in time was like, ‘It’s really hard to get tested and people aren’t even getting admitted unless they’re older or at risk or all these other things,’” Gurtler said. “And there really wasn’t much treatment, so I thought, ‘I’m just going to try to wait this out.’”
She proceeded to “wait it out” for several weeks, her symptoms yo-yo-ing from minor body aches to severe shortness of breath.
“There were some days where I couldn’t even get out of bed, with the fatigue, the chest pain, the breathing issues, and then some days I could kind of take little walks around my back yard,” Gurtler said. “There were probably only one or two days a week where I was entirely bedridden, and I would say the breathing issues were every single day.”
By the fourth week of symptoms, Gurtler decided she needed to talk to a doctor. Without a primary care provider, she set up a telehealth appointment with a doctor from PlushCare, an online telemedicine platform. The doctor informed Gurtler he was “98 percent sure” she had COVID-19 and possibly pneumonia as well. The doctor prescribed Gurtler an antibiotic and an inhaler.
Still feeling sick a week later, Gurtler set up another telehealth appointment with an urgent care center in Alexandria. It was the urgent care doctor who suggested that Gurtler get the nasal swab test for the SARS-CoV-2 virus.
The urgent care doctor warned Gurtler that the result would likely come back negative because nearly five weeks had passed since the onset of her symptoms. Sure enough, Gurtler received her negative result on April 14.
Several studies have reported the commonality of false negative tests for the SARS-CoV-2 virus. One study from Johns Hopkins Medicine found that at three weeks after symptom onset, the median false-negative rate was 66 percent.
“The false-negative rate [for the SARS-CoV-2 virus] can be fairly high,” Dr. Vivek Sinha, founder of Belleview Medical Partners in Alexandria, said. “The range is really big. I saw some numbers that were like 5 to 40 percent for certain tests. … It’s not the first time that we’ve seen limitations of testing like this in medicine, and it just reiterates that you have to take everything with a grain of salt.”
After receiving a negative result for the viral test, Gurtler’s symptoms persisted. She was able to get the antibody test for COVID-19 in early May, which also came back negative.
“I was just so 100 percent sure that it was going to come back positive and so when it didn’t, I was devastated,” Gurtler said. “I was like, ‘What have I been experiencing this whole time?’ To this day, it’s frustrating. I don’t know for sure.”
Sinha said there are a lot of variables when it comes to antibodies for an illness.
“Antibodies usually can develop anywhere from days to weeks after [the onset of an illness], and again, that’s a huge window period,” Sinha said. “Say you have two patients that are COVID positive and you do an antibody test on both of them two weeks out. One of them may be positive, the other may be negative, and it may just be that their body takes longer to produce antibodies.”
There are also situations where people don’t build antibodies at all, Sinha said. As an example, he pointed to Hepatitis B, a virus against which many are vaccinated at young age. Sinha said he’s seen patients who have gotten the full series of vaccinations for Hepatitis B, but still haven’t developed antibodies.
Since receiving her negative antibody test results on May 5, Gurtler has continued to experience COVID-19 symptoms on and off. She’s been working remotely from her home, where she lives with her husband, who has not exhibited any symptoms.
“Now, I think I’m on day 100, day 101, and I would say that I am definitely doing a lot better. I can walk around. I don’t have as many breathing issues, but I do still have them, and I do still have to use my inhaler sometimes,” Gurtler said.
Sinha said the average length of time that his patients with COVID-19 have been sick is two to three weeks, but he said it’s not unusual for symptoms to persist longer.
“Waxing and waning of symptoms we see in a lot of different conditions,” Sinha said. “Especially when you have this novel coronavirus or COVID-19, we don’t know a lot about it. We know more about it than we did a month ago, but we don’t know a lot about it and we’re learning from patients as they’re recovering. And so in cases like that, it’s not uncommon to notice patients having symptoms that are waxing and waning. Could it be due to COVID? It’s possible.”
Gurtler has found comfort in an online community of people like her who have had long-lasting COVID-19-like symptoms. After learning that others have had similar experiences, Gurtler is concerned that many people don’t realize how long COVID-19 can last, she said.
“I’m worried that they’ve painted this false binary in the media of either you are really sick and hospitalized, almost die or you do die, or you have a mild case and you just have like flu-like symptoms for two to three weeks. And yet, there are literally thousands of us, perfectly healthy, young people, experiencing these long-term illnesses.”
After going through what was likely a serious case of COVID-19 and seeing the state begin to reopen, Gurtler is advocating that people continue to exercise caution.
“I do hear people start to say things like, ‘Oh, well, we’re all probably going to get it at some point, so I’ll just get it and get it over with.’ Like it’s chicken pox or something, and I guess my unsolicited advice to those people is: Try not to get it,” she said. “I really feel that people still need to be taking the precautions because you could end up with one of these long-term cases.”