Northwestern studies long COVID patients who never tested positive

CHICAGO (WLS) -- Imani Ibrahim said she first noticed something strange in March 2020, right at the start of the COVID-19 pandemic.

"I had this overwhelming, consistent smell of smoke," she recalled.

A few weeks later, she lost her sense of smell and taste. So, she tried to find out if she had COVID.

"I was tested repeatedly, and I always tested negative," she said.

But her symptoms worsened.

"I started developing fatigue, migraines as well. Brain fog where I would forget my words," she said.

But Ibrahim still tested negative for COVID. It wasn't until September 2020, when a doctor tested her COVID antibodies, that she found out she had been exposed to the virus. To this day, her sense of taste and smell come and go.

"I'm still who I am, I'm still working full time, I'm still loved by my family and friends, I still give back to my community," said Ibrahim.

She and nearly 30 other patients with long COVID symptoms, who tested negative for the virus, took part in a new study at Northwestern Medicine's COVID-19 clinic.

"We estimate that during the first year of the pandemic, about 10 million people in the U.S. were in this predicament, that they were exposed to SARS-CoV-2, developed COVID-19 and thereafter developed long COVID symptoms, but never had a positive test because they could not be tested in time," said Dr. Igor Koralnik, chief of neuro-infectious diseases at Northwestern Medicine.

Koralnik said post-COVID clinics shouldn't require a positive COVID-19 test in order to provide care to long-haulers.

"Those people, unfortunately, have been rejected, stigmatized, sometimes gaslighted, even by the medical establishment, because they did not have a positive COVID-19 test," he said.

Koralnik said more research is needed to determine what causes long COVID and how to effectively treat its many symptoms. To date, Northwestern's clinic has treated more than 2,100 long COVID patients.