- COVID-19 can cause neurological complications.
- Shelby Ponder, 23, spoke with Healthline about her experience with post-COVID-19 encephalitis, a condition that causes brain swelling.
- Vaccinating against diseases like COVID-19, which can cause encephalitis, is the best way to prevent the condition.
As a first-year law student, Kentucky resident Shelby Ponder, 23, started her dream internship with the U.S. attorney's office on July 6, 2020.
Three days later her life changed drastically.
“Everything was perfectly normal until July 9,” Ponder told Healthline.
She started feeling sick with strep-like symptoms and immediately got tested for COVID-19. The test came back negative, and so Ponder continued on with life as usual.
“My strep-like symptoms only got worse. I was prescribed an antibiotic over telehealth, which obviously didn’t work. I continued going to work until the 13th, at which point my brain and body just snapped,” she said.
Her fever stayed between 101 and 103.9°F for 2 solid weeks despite taking ibuprofen and acetaminophen every 2 hours. She began having hallucinations.
“I don’t really remember this time very much except for the horrible fear, which I couldn’t really acknowledge in that state of mind. I had lost all motor skills. Brushing my teeth was so frustrating, and I eventually had to have my sisters bathe me and brush my hair,” she said.
After about 2 weeks, Ponder developed insomnia. Because she was drained physically and mentally, she laid in bed exhausted yet unable to sleep.
She also started having vision issues and migraine attacks, which prompted her to visit the emergency room. She stayed there for 5 days.
During that stay, Ponder was tested for COVID-19 again five times, but each result came back negative.
After undergoing an MRI that revealed extensive brain swelling, doctors diagnosed encephalitis: inflammation of the brain often due to infection.
They tested her spinal fluid and blood to look for viral and bacterial infections that cause encephalitis with no definitive answer.
She was released from the hospital with a prescription for steroids to help with the migraine episodes.
However, the medication worsened her insomnia, allowing her only 3 hours of sleep in a week.
Ponder returned to the ER, where she was referred to neurologist Dr. Daniel Lee, medical director at the Kentucky Neuroscience Institute in Lexington.
“[Shelby’s] MRI scan is consistent with encephalitis with increase signals in her temporal lobes, basal ganglia, and hypothalamus on both sides of her brain,” Lee told Healthline.
He informed Ponder that her “sleep center” had demyelinated, which occurs when nerve impulses slow or stop, causing neurological problems.
She learned her brain wasn't making melatonin. The receptors the brain uses to accept melatonin were inactive.
Lee encouraged her to get tested for coronavirus antibodies, which came back positive in November 2020.
Connection between COVID-19 and encephalitis
Because COVID-19 can cause neurological symptoms, complications, and outcomes, the National Institutes of Health launched a database to collect information from clinicians.
Ava Easton, PhD, CEO of the Encephalitis Society, said early data suggests that up to 13 in every 100 people who have COVID-19 as well as neurological complications may experience some form of encephalitis or brain inflammation.
“As many as 70 to 80 percent of hospitalized [COVID-19] patients will experience some form of neurological complication” like headache, Easton said.
While there's not much that can be done to stop the causes of encephalitis, Easton said it's possible to prevent encephalitis from happening through vaccination.
For example, Easton points out that measles causes encephalitis and is a vaccine preventable disease. Vaccines can prevent Japanese encephalitis and tick-borne encephalitis too.
“As we know, COVID-19 can cause encephalitis and is a vaccine preventable disease, so we are promoting messaging about accessing accurate information on vaccines and encouraging people to become vaccine confident,” Easton said.
Lee agrees, stating that vaccination is crucial.
“It is still the most effective tool that we have to prevent encephalitis, because prevention is always better than the cure itself,” he said.
Making progress on the long road to better health
An MRI in January 2021 showed that Ponder’s condition is improving slowly.
“It’s hard not to get down, even though it’s improving, because I just want to get a clear MRI and put this behind me. It will be a long time before I get a sense of closure,” she said.
While her symptoms have improved, Ponder is still unable to sleep like she did before getting COVID-19. She also still has daily headaches and brain fog.
“Very common things take a lot of mental energy out of me… it’s almost like thinking hurts my head and I try to pace myself… I am easily agitated, which is something I’ve never been,” Ponder said.
Her experience is common, according to Easton, who said rehabilitation from encephalitis can be a long journey.
“People can continue to benefit from specific interventions even years later. Sometimes people need to be ‘ready’ to take on new information and tricks,” Easton said.
“There is a pervasive myth that there are limits to when people can benefit [from specific interventions], and this is why it is worth seeking advice from specialists [such as]… a skilled speech and language therapist, occupational therapist, or psychologist,” she said.
Treatment and management of encephalitis includes trying to reduce the level of injury to the brain, she added.
“Some survivors will go on to make a good recovery, but many will experience some level of injury to the brain that presents daily challenges, including difficulties in successful returns to work and education,” Easton said.
Ponder has continued to attend law school and is learning to deal with her symptoms the best she can.
“I recovered all abilities, but I’m trying to use my brain the way I was used to while dealing with headaches and lack of mental clarity. I can control that a lot, but have to pace myself,” she said.
When Ponder was first struggling to make sense of her condition, she turned to the Encephalitis Society for information and community.
“I felt like everything I was going through I was alone in… [Then] reading the stories on the [Encephalitis Society] website was validating what I was going through and how I was feeling,” Ponder said.
Ponder said her experience has inspired her to help others who are also experiencing post-COVID-19 encephalitis. She teamed up with the Encephalitis Society to share her story.
“I thought I could be that connection that someone needed, that connection I needed in the depths of all of this,” Ponder said.
Spreading awareness about post-COVID-19 encephalitis
Ponder is also sharing her experience to spread awareness about the seriousness of COVID-19.
“I want to help young people who don’t feel like they are at risk, kind of like I felt, and to know that my reaction is not a rare reaction. I can see many people saying it’s just the exception to the rule. It’s becoming way too common with COVID to have long lasting neurological impacts. We can prevent that by taking it more seriously,” she said.
In the early months of the pandemic, Ponder said she didn’t think it was serious.
“I think we should be more transparent about this and less judgmental about it. A lot of people didn’t take it seriously because we didn’t have any experience with it. I’m from Eastern Kentucky, and it took [COVID-19] a long time to [reach us] here, and now it keeps getting worse here because people aren’t taking it as seriously,” Ponder said.
Because most people who have severe COVID-19 or die from it tend to be older adults or those with underlying health conditions, Ponder admits she didn’t connect the condition to herself.
“I would have never in a million years thought it could have long-term consequences to me and never imagined it could be fatal… Now it’s a triggering subject because the thing that caused this damage to me, I can never escape it… because it’s controlling everyone’s lives right now,” she said.
Ponder also said it's upsetting to hear insensitive comments about COVID-19 and the pandemic.
“I can’t imagine people who have lost loved ones to it, and to hear people trying to make it illegitimate and unreal. That is a hard issue for me especially when it’s people you care about and who care about you, and they are saying these things,” Ponder said.
“[People] are quick to dismiss really impactful consequences that COVID is having on people’s lives, whether the death of loved ones or people who have had it themselves and had consequences like myself,” she said.
Ponder urges people to wear masks and follow public health measures.
“Just believe scientists and doctors, please. If anyone takes anything from this story, let it be that. COVID is very, very real, and it’s a destructive monster that can wreak havoc on your life for months, years, or worse — end it entirely,” she said.