Craig Hollander woke up with chills and an unfamiliar lethargy that dogged him all day. It was March 10. The 38-year-old history professor and father of two daughters, ages six and three, is healthy and fit, but his three-year-old has juvenile idiopathic arthritis and is on immunosuppressant medication.
“She’s on some hardcore drugs,” said Hollander, who lives in in Westfield, NJ. Bringing home any illness could have life-threatening consequences for her.
The next day, the symptoms hit Hollander hard. His fever spiked. Aches and pains crippled him. Dizziness swept over him when he tried to stand.
“I was in bad shape, but definitely not thinking it was COVID-19,” he said. “I followed the dogma; I didn’t know anyone who had it; I haven’t traveled; I’m well under 60, and I wasn’t coughing.”
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His primary care doctor agreed. She gave him a flu test, which came back negative, told him the bug would run its course, and ordered him to rest and stay hydrated.
Then his appetite disappeared completely and the diarrhea set in. Still no cough—and no suspicion of the novel coronavirus.
Hollander was still sharing a bed with his wife and interacting with his children. He still took part in daily life. He walked through the kitchen, opened and closed the fridge, picked up stray toys, flushed toilets, and turned faucets on and off.
He was unwittingly contaminating everything he touched, and he was getting worse. He slept all day and was either feverish or chilled. His wife, Jennifer, called the doctor on March 13 and explained that her husband’s illness was going the wrong way and she wanted a COVID-19 test out of an abundance of caution for their immune-compromised daughter. The doctor sent them to urgent care.
“The urgent care doctor listened to my lungs, which sounded fine, and diagnosed a run-of-the-mill virus,” Hollander said. “I can’t blame him. I wasn’t presenting any known coronavirus symptoms and he was doing the best he could with the information he had. Plus, he must have been frustrated with people coming in all day asking for a test that’s strictly reserved for the most dire cases.”
That night, Hollander was scrolling through Twitter when he saw his old family friend, Brennan Spiegel, explaining a study that showed prolonged fever and diarrhea were symptoms of COVID-19, even in the absence of respiratory problems.
Craig picked up the phone and called Spiegel, who is editor-in-chief of the American Journal of Gastroenterology. Spiegel recently immersed himself in studies from Wuhan and noticed manifold symptoms of COVID-19; he launched a #NotJustCough trend on Twitter to raise awareness of the broad range of symptoms associated with the virus. “He was like, ‘100 percent I think you have this,’” Hollander said. “But he couldn’t reach across the country and get me a test.”
The new study published online by the American Journal of Gastroenterology tracked 204 COVID-19 patients at three different Wuhan hospitals. Nearly half arrived at the hospital with digestive issues like loss of appetite and prolonged diarrhea as their chief complaint, not respiratory ailments.
“These patients went to the hospital and were asked what brought them in,” Spiegel said. “They answered, ‘I’ve had no appetite for a week. I can’t eat. I feel terrible.’ They did not just complain of a cough. They did not just complain about shortness of breath. They did not just complain about the typical symptoms we’ve been told to watch for.”
“What he described was me exactly,” said Hollander who had developed a slight cough by then.
That spurred his wife to contact the mayor of their town. Citing the new evidence of symptoms and explaining about their daughter, she asked for the mayor's help getting a test.
“They weren’t taking no for an answer,” said Shelley Brindle, the mayor of Westfield, NJ. “And I share their over-the-top frustration. I contacted the regional health director and state legislators. Nobody could help them. Everyone’s hands were tied by a shortage of tests.”
Westfield’s Health Director wrote in an email to Jennifer Hollander:
“Essentially, the problem is the lack of testing supplies that are available. There are so few that they are being saved for the most medically complicated cases.”
Doctors refused them a test. Politicians were responsive, but unhelpful. So, the Hollanders turned to their professional network. On the morning of March 16, a messenger from a New York City-based doctor arrived at their house with a nasal swab test. Two nights later, the lab called Craig. His COVID-19 test was positive. The lab wished him luck and told him to visit the ER if he had trouble breathing.
“Craig is in the most densely populated state in the country,” said Spiegel. “We can learn from his story. We can multiply his symptoms out by a huge factor.”
Hollander is now in self-quarantine in his home office, where, two weeks into this, he sleeps all day while his six-year-old runs around the house wiping down doorknobs yelling about the virus. He still has fever, diarrhea, and no appetite. His three-year-old so far appears to have been unaffected by the exposure, but her rheumatologist took her off immunosuppressants while COVID-19 is in the house.
“We have to pick our poison: leave her vulnerable to COVID or to idiopathic arthritis,” said Hollander.
He doesn’t know where he picked up COVID-19 or whom he has infected. He worries for his family, and the families of all the students he taught the day before falling ill.
He also worries about the many, many people with his symptoms who don’t know they have COVID-19, can’t get tested, and as a result, won’t know to self-quarantine.
“I’m a completely useless human. I have no idea how a single-parent would handle this,” he said.
Despite the evidence and growing knowledge about this novel coronavirus, our paucity of tests means access is still limited to people with a recent travel history to known hotspots, contact with an infected person, or to the elderly who have fever, dry cough, and shortness of breath.
On Sunday, an association of ear, nose, and throat specialists, the American Academy of Otolaryngology, proposed that patients who have lost their sense of smell or taste be considered for COVID-19 screening. It noted that patients without any other symptoms have tested positive for the novel virus. “We’re learning more and more about this virus and it’s exposing how egregiously narrow the scope of our current testing protocol is,” Spiegel said.
COVID-19 reached the Senate this weekend when Senator Rand Paul left the swimming pool in the senators’ gym to learn that he had tested positive for the virus despite not having symptoms.
Or maybe he does have symptoms—like a loss of appetite or a diminished sense of smell—and just doesn’t know that those are signs of COVID-19 too.
This article originally appeared on VICE US.