When Daphne resident Karen Leppo’s memory deteriorated, she’d get lost in her neighborhood. Leppo, 61 at the time, wasn’t experiencing dementia but symptoms of COVID.

“I’d be sitting out front of my mother’s house, looking for her house,” Leppo said. “I couldn’t recognize it. And I still have that problem. I can’t recognize things.”

According to a September report by the CDC, Leppo is one of about 8.8 million adults still experiencing long COVID.

The CDC defines long COVID as self-reporting the presence of symptoms for at least three months after testing positive for COVID-19. Leppo has been struggling for the last two years. The CDC report stated that 18 million adults have experienced this condition. It’s not clear how many from Alabama are among them.

And in a new development in the study of long covid, The New York Times on Monday reported on research at the University of Pennsylvania – released in the journal Cell – that may give provide insight into the condition. The research shows that a drop in serotonin is caused by remains of the COVID virus in a patient’s belly, the newspaper reported. Because of the reduced serotonin, it “impedes the activity of the vagus nerve and thereby impairs hippocampal responses and memory. These findings provide a possible explanation for neurocognitive symptoms associated with viral persistence in Long COVID, which may extend to other post-viral syndromes,” according to the study.

Before COVID, Leppo said she had some autoimmune issues and seasonal asthma. However, she used to be energetic and often worked multiple jobs, mainly in the hospitality industry. Leppo tested positive for COVID-19 in January of 2021, but her symptoms persisted even after testing negative 10 days later. She had horrible headaches all day, every day for nine months.

“It was so bad that I felt like someone was drilling into the base of my skull with a drill or a hot poker or laser beam,” Leppo said. She still has brain fog, daily headaches and mainly suffers from blurred vision and light sensitivity. She continues to have severe pulmonary, cardiovascular, and gastrointestinal issues long after testing positive.

One of the more unusual symptoms Leppo experienced was being allergic to foods and medications she could typically ingest. She discovered later she had developed an allergic reaction to the COVID-19 vaccine, and doctors told her not to get additional boosters.

Leppo had difficulty getting help from doctors. She said her primary care doctor treated her like she was “nuts.” She got some assistance from an allergist and joined the COVID-19 Long Hauler Advocacy Project.

“All you need to do is find the right doctor who will listen,” Leppo said. She can no longer work and credits her family for helping her through this struggle. She encourages people to find a COVID-19 study, and she’s learned a great deal from the Long Hauler group and hopes her story will encourage others to get help.

“Maybe I’m not going to get the answers or the resolution I’m looking for, but maybe what I’m going through can help somebody in the future,” Leppo said.

Mary Smith of Mobile has also gained a lot of insight from the Long Hauler group. She contracted COVID in March 2020, when there was little to no information about how the virus could spread or treatment options.

Weeks after testing negative, she was still experiencing extreme fatigue and heat intolerance. She felt like she had “pins and needles” on her skin. She shared what she described as a “neurological event,” but there were no signs of stroke. With her background in clinical social work, she was searching for answers everywhere, even the Italian Society of Neurology.

Her symptoms began to subside after about 18 months, and she’s grateful to have a supportive partner. Smith entered private practice to have control over her schedule and incorporate “radical rest” to ensure she doesn’t push herself. She said it’s essential for caregivers and policymakers to understand that people experiencing long COVID need support, and trying to force sufferers beyond their limits only exacerbates the problem.

“If you’re having symptoms that are unexplained in any way, listen to your body,” Smith said. “To be in this situation and to be unsupported by your loved ones is devastating.”

Dr. Wes Stubblefield, Alabama Department of Public Health’s medical officer, said long COVID is not a reportable condition, and there’s no data to show how much the issue affects Alabamians.

“We do know from nationwide studies that people develop symptoms at least four weeks after developing COVID,” Stubblefield said. “We know that people who have more severe COVID-19 infection are more likely to have long COVID.” He added that anyone can get long COVID, even if you didn’t have any severe COVID-19 symptoms. Staying up to date on vaccinations can reduce the risk of experiencing long COVID. He said managing chronic conditions like diabetes can also help.

“I encourage people to speak with their doctor, tell them about the symptoms that they’re having and then to ask if they could potentially be referred for therapy,” he said. Therapies can include occupational, physical, or behavioral therapy.