I Got Encephalitis As a Result of COVID — and It Nearly Killed Me

After months of being seriously sick and testing negative for COVID-19, 23-year-old Shelby Ponder shares how doctors finally learned that the virus caused her life-threatening brain condition.

Becoming a lawyer has been a dream of mine for as long as I can remember. I spent years working toward that goal, which included going to law school and getting accepted to an internship at the United States Attorney's Office. I started my position there on July 6, 2020, and despite being smack dab in the middle of a pandemic, I was excited as a little kid at a candy shop when I walked through those doors.

Just three days later, I got sick.

Shelby Ponder Covid encephalitis
Courtesy of Shelby Ponder

The Fever That Changed It All

I remember getting home after my first full day at the U.S. Attorney's Office and felt a sore throat coming on. My first thought given the state of the world was that I had COVID. I immediately masked up, jumped back into my car, and went to go get a rapid test. It was negative.

As someone who gets strep throat three to four times a year, I chalked up my negative results and symptoms to yet another bout of strep. I did a Telehealth visit, where the doctor agreed that my symptoms were consistent with strep, and I was prescribed antibiotics. Relieved, I returned to work the next day, but I started feeling worse. As each day passed, it became clear that the antibiotics weren't working. I started to feel a tightness in my chest and developed a cough. (

Over the next three weeks, my fever hovered between 101 and 103.9 degrees. My mom became my round-the-clock caregiver, monitoring my symptoms and dosing me with acetaminophen or an NSAID every two hours. I spent the next two weeks at home, and after fourteen straight days with a fever, we finally went to the ER. There, they took a chest x-ray and pumped me with medication and fluids, which finally brought my fever down a bit. They asked if I had any other symptoms, and I couldn't think of one other than my sore throat and that inital coughing fit I had in the courthouse. Regardless, they tested me for COVID again, and just as before, the results were negative. No one could figure out what was wrong with me. (

I hardly remember this time because I was nearly comatose, sleeping about 20 hours a day. When I was awake, I ate a few bites of food and quickly fell back asleep. There were times I even hallucinated. Three weeks into being sick, I was so weak that I lost 20 pounds. I lost all motor skills — so much so that I could hardly brush my teeth and my sisters had to help me shower and change my clothes. I was terrified. I thought, 'this would be the most miserable way to die.'

Somehow, thankfully, at the end of the third week, my fever broke. I vividly remember waking up on a Wednesday and feeling a hundred times better. I ate some food, took a bath, and really felt like I had turned a corner. But that night, when I got into bed, sleep evaded me.

Suffering from Sleeplessness

My body had been put through hell for three weeks, so when I only slept a few hours the first night, I didn't think much of it. But I couldn't fall asleep the next night either. I took a Benadryl, but that surprisingly didn't help at all. Despite the lack of sleep, I returned to work a few days after my fever broke. However, just two days later my vision became distorted, and everything looked as though it was shaking. I also developed a severe migraine, my muscles felt weak, and a low-grade fever returned. So again, I called off work, went home, laid in bed with my eyes closed, but still couldn't sleep. (

At this point, it was the end of July and I needed to be admitted to the hospital again. Doctors several more COVID tests all of which were negative, so we concluded that it wasn't the culprit. Since vision problems and sleeplessness are neurological symptoms, doctors scheduled me for an MRI, several CTs, and a spinal tap.

The tests revealed that I was suffering from meningoencephalitis — a combination of meningitis and encephalitis. While encephalitis causes inflammation of the brain, meningitis causes inflammation of the fluid and membranes surrounding the brain and spinal cord, explains Ava Easton, Ph.D., and CEO of The Encephalitis Society. The combination, meningoencephalitis, can cause rapid development of fevers, headaches, seizures, and other neurological and physical symptoms, according to Johns Hopkins Medicine. I learned that it's typically caused by a viral infection, but I didn't have a viral infection. I was consistently testing negative for SARS-CoV-2, the virus that causing COVID-19 infections... as well as every other virus my doctors had in their database.

Regardless, the inflammatory disease had caused extensive swelling in my limbic system, a brain structure located in the temporal lobe. This part of the brain is involved in behavioral and emotional responses as well as the processing of short-term memories, my doctors explained. Still, that didn't explain my insomnia. At a loss, doctors prescribed me steroids to help with the inflammation and migraines and discharged me. (

A week later, things weren't any better. In fact, I was sleeping even less. Over a period of seven days, I slept maybe a total of three to four hours. Not only that, but the medication didn't seem to relieve any of my other symptoms, so I ended up back in the ER.

No amount of medication they gave me helped, so I was finally referred to a neurologist who specialized in sleep. He went on to look at my scans and conduct several more tests. In a matter of days, he revealed that my brain's sleep center had demyelinated. This essentially meant that the myelin sheath, a protective covering that surrounds nerve fibers in your brain, optic nerves, and spinal cord, was damaged.

Demyelination causes nerve impulses to slow down, or even stop, causing neurological problems. In my case, it was affecting my sleep as it inhibited me from producing my own melatonin, my doctors explained. All these symptoms were consistent with several autoimmune conditions, but despite routine tests, I never showed markers for any.

Learning That COVID Was to Blame

Even though doctors couldn't figure out why this happened to me, they told me that my brain could recover with the right treatment. That said, there was no textbook treatment for what I'd been through. So after a lot of consultation, my neurologists put me on a strict medicine regime. The downside? It could take up to a year before I felt like my old self again.

This news shattered me. Not only was I not able to take advantage of my dream internship, but I was about to start my second year of law school at the end of August and didn't feel prepared for it whatsoever. Because of COVID, classes were online, but I struggled to keep up. I felt cognitively impaired and wasn't as sharp as I used to be. It was as though I was in a constant fog — mixing up words, struggling to read, and being unable to process things, especially what I was learning in school.

It took several more months for my sleep to finally get back on track.

The most frustrating part of it all was that doctors still couldn't pinpoint the root of the problem. Despite dozens more tests, they couldn't find an underlying cause. My deepest fear was that it was going to be an autoimmune condition such as Multiple Sclerosis (MS), but results constantly showed negative markers. Then, on November 17, I received a call from my neurologist saying that I had COVID antibodies. (

At first, I wasn't sure what that meant or why that was relevant to what happened to me. But then, my doctor explained that I wasn't alone in my experience. He shared that he had witnessed several young adults in their 20s and 30s test negative for COVID despite developing high-grade fevers and encephalitis — only to test positive for COVID antibodies months later. He told me that all of our symptoms were consistent with one another, except for the fact that some patients suffered insomnia like I did, whereas others had the inverse effect and struggled to stay awake. In all likelihood, COVID was the reason behind the meningoencephalitis and everything that followed for me.

I never thought I would cry tears of joy after knowing I had COVID, but finally knowing what made me sick gave me closure.

Looking Ahead

It's the overt symptoms of COVID-19, including shortness of breath, fever, dry cough, loss of taste and smell, that get a lot of airtime, but I don't think there's been enough talk about enough is the potential neurocognitive effects that result from the virus. There are so many things that doctors are still trying to understand about the disease, but early data is suggesting that between six and 13 out of every 100 people who contract COVID-19 also develop some form of encephalitis, says Easton.

Even absent coronavirus, encephalitis death rates are high — in fact, 10 percent of patients die from the condition. Those who do survive are often left with memory problems, diminished cognitive skills, changes in personality, emotional and behavioral difficulties, epilepsy, severe fatigue, and other physical problems that make returning to school, work, family, and social life very challenging, if not sometimes impossible, she adds.

I was definitely one of the lucky ones, but every day is different for me. Some days I feel 90 percent "normal" and others I feel like my brain is being hijacked. I still wake up several times a night because it's like my brain just can't shut off. I have terrible mood swings and have lashed out at the ones I love most. Most of all, I am just angry — angry that this happened to me during the most important season of my life, angry that I feel like a different person, and angry that I'm still dealing with the repercussions.

That said, I know that I have to find things to be grateful for if I'm ever going to move forward in my recovery.

So, for starters, I'm grateful to be alive. I'm grateful that I don't have a type of encephalitis that is reoccurring. And I'm grateful for God, incredible neurologists, modern medicine, and my support system — all of which have made these past seven months survivable for me. (

If there's anything I've learned from this whole experience, it's that COVID isn't something to be taken lightly. I'm someone who always wore a mask in public, and I still contracted the virus. I will never know when, where, or how I got the coronavirus, but what I do know is that it nearly killed me, and almost destroyed my life, relationships, and hopes for the future.

If my story teaches you anything, let it be to listen to scientists and doctors, keep wearing your mask, and if you're eligible for the vaccine, strongly consider getting it. I know that together, we can beat this pandemic, but for me and for many others, it's can't forget that it's far from over.

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