Eli Musser was planning his dream wedding to his fiance Megan Butler, but then he got COVID-19 last March.
“We were three months away from our wedding when we got sick," Musser said.
Musser is what some refer to as a COVID long hauler.
Over the past 10 and a half months, the 42-year-old has had to put his entire life on hold due to severe and prolonged symptoms from the coronavirus. He postponed their wedding, and the musician and senior copywriter has been unable to work since April of last year.
“I just had terrible new symptoms. Seizures, night sweats, panic attacks, insomnia," Musser said. "In late May, I woke up and I wasn’t able to use my legs. I couldn’t walk at all for the whole morning."
Those are just some of the symptoms that Musser described as he still has extreme fatigue and trouble walking at times. According to Dr. Norman Gaylis, Musser isn't the only one suffering.
“With COVID, maybe more than 10% of patients who have an acute case, whether it’s severe or not, may still months later be having symptoms that are very debilitating, and these patients who have had symptoms more than 12 weeks after they got COVID are now being called COVID long haulers," said Dr. Gaylis, a rheumatologist with Arthritis & Rheumatic Disease Specialties out of Aventura.
He also explained some of the science behind this phenomenon where some COVID patients take longer to recover.
“Every long hauler comes in with a different of symptoms, and the best approach is to understand each complaint and tailor the treatment specifically to their symptoms," Dr. Gaylis explained. "What COVID does when it invades the body is that it triggers the immune system to produce a cytokine storm, where all these so-called antibodies that normally are there to protect the body actually go into overdrive and cause problems wherever they land."
Musser said he has been in and out of emergency rooms and hospitals and nothing has been able to help him so far. After doing some research online, Musser came across Dr. Gaylis, who is part of an approved site in the U.S. to do an FDA trial for the drug Leronlimab, made by Cytodyn.
"This is the first and only monoclonal antibody that has been approved for a study to evaluate the benefit Leronlimab may have for long haulers syndrome," Dr. Gaylis said.
Musser and his fiance even drove 16 hours from New York to be part of this small trial, which begins in early March.
“There are only two trial sites for Leronlimab and I did not want to miss my opportunity," Musser said.
Musser has had plenty of ups and downs, so he's desperate and hopeful that he'll see some results.
“I just have my fingers crossed that this is really sort of thing that is going to get me back to my life and back to our lives and back to the things that we planned," Musser said. "I’m 42 and I never in a million years would ever have dreamed that this is what would happen to me, and there are other long haulers who say the exact same thing."