A drug that has shown promise in HIV patients could be successful in combating symptoms for coronavirus "long haulers.” The trial is set to start this spring and doctors say if it works, it could bring relief to many.
“I have thrown everything and the kitchen sink at this problem and I’ve not been able to move the needle very much,” says Eli Musser.
It's as if he's had COVID-19 for a year.
“About two months in the apex of these symptoms, I woke up and couldn’t use my legs. I absolutely couldn’t walk,” Musser said. “I couldn’t force my legs to move and looking back, these are all telltale signs of severe COVID, neuro COVID particularly.”
He got COVID-19 in March 2020. Since then, he's been through the worst of the worst and then some. He’s visited the hospital at least a dozen times. On a good day, he can do his breathing exercises. He once had nearly 40 symptoms. On a bad day, many of them hang over him.
“The ones I’m left with, I have fatigue, muscle weakness, those go together for me,” Musser said. “I get tired and worn out very quickly. I have dizziness and balance issues and vertigo. Those sort of go together. I have shortness of breath and breathing issues.”
There were so many things he was supposed to do. He was about to release a record. He was only a few weeks away from getting married. He and his fiancee both got sick. While she bounced back, he's still trying to manage COVID-19 every day.
“They’re very difficult for me to look at,” Musser said. “It's hard. I not only miss my life, I just don’t know when they’re coming back or when I’m coming back. To see those images, I forget I was a normal person and that I want to be back there someday.”
This is what it feels like to be a COVID-19 long hauler.
“It's all as a result of the initial COVID infection causing the immune response to create all these unusual, bizarre events,” says Dr. Norman Gaylis, a rheumatologist who now helps coronavirus long haulers.
He's about to start a clinical trial for those who can't get COVID-19 to go away.
“There’s a drug called ‘leronlimab,’ it’s a monoclonal antibody, The company that manufactures the drug is a company called Cytodine and this drug has been in the research phase for HIV for the last six or seven years and the results in HIV are very, very promising,” said Gaylis.
It's a small group and a typical blinded study. To get in, you need proof of COVID-19, which isn't always easy.
“It's unfortunate, in the early parts of the pandemic, there weren’t enough tests around to test people so there are definitely people around who had COVID that we don’t have evidence of which is just bad luck,” Gaylis said.
Musser is one of those who didn't have the PCR test, but he was positive for antibodies which makes him a candidate. He'll try anything. During his long battle, he's found support groups and breathing groups, and now he's hopeful for the promise of a new drug.
“We are all facing, whatever our symptoms are, however severe or mild, we’re all facing the same thing which is absolute crushing uncertainty,” Musser said. “We want to get back to our lives.”
“There is hope coming so my honest belief is I wouldn’t be doing this if I didn’t really truly believe we’re getting some light at the end of the tunnel,” Gaylis said.
Only time will tell, but it's one step in the right direction for the long battle of this pandemic.
