Steven shares his experience of herpes simplex virus (HSV) encephalitis

In March of 2023 at the age of 35, I became sick. At first, I thought it was nothing, just a flu or stomach bug; nothing to worry about. After about 3 straight days of the worst headache of my life, aches and a temperature, I was starting to worry. My headaches only intensified, and I had become delusional—to the point where I started yelling at my wife and blaming her for poisoning me. I also texted my friend and told him I had been diagnosed with stage 4 cancer (I hadn’t even been to the doctor yet); I had lost my mind.

My wife did the only thing that made sense, with two 5-month-old boys at the house. She called my mum to come and pick me up and take me to her house. After a night at my mum and stepdad’s house I was ready to get home to my family. On the way back, I had the most distinct, odd smell come over me and still to this day I can’t describe it. I turned to my mum and told her to take me to the hospital immediately.

We went to a local hospital and got looked at quickly. I told them my symptoms and what I had been dealing with and they were baffled. I had a CT scan and blood work done, hoping to get some answers. My wife had made her way to the hospital to be with me when they came back with the results of the CT scan; I will never forget hearing the scariest words I had heard in my life:

“Mr. B, we have the results of your CT scan, there’s a spot on your brain”

Right there my world came to a complete halt. I felt frozen in time, they couldn’t determine exactly what it was on the scan, so they scheduled an MRI test. When they got the results, they believed it was possibly some sort of infection, but they weren’t exactly sure how to treat it.

That night I was transported to an infectious disease ward in a hospital in Detroit. There, I underwent an immense amount of testing. I will never forget the night I looked down and had vials of blood lined down from my throat to my waistline.

After countless blood tests, MRI’s and lumbar punctures, we finally had an answer: I was diagnosed with HSV encephalitis. I had 3 lesions and scarring on my front temporal lobe and severe swelling on my brain. This explained everything, but I still had the worst headache of my life.

This next part is something very personal that I only recently shared with my wife: I stayed at the hospital for 2 weeks on an intravenous (IV) treatment and, on March 17th 2023, I was discharged. I had to remain on the treatment for 1 week so my mum, a retired nurse, moved in for a week and administered IV treatments every 8 hours for 3 hours at a time. They came and removed the line from my arm after a week and we were done!

Encephalitis relapse

On April 1st, we were preparing for friends to come over and visit. I remember getting up from the couch and opening the door as they said they were about 15 minutes away. The last thing I remember is getting this is feeling very light headed and sitting on the bench next to the door. I fell face first into the floor and seized for 6 minutes before the ambulance arrived. I didn’t come through until we were halfway to the hospital from my house.

This was a setback for us. My infectious disease doctor did not know I had experienced a seizure until 2 weeks later when I reached out about taking allergy medication.

Seizures are a common side effect of HSV encephalitis, so she ordered an additional MRI and for me to meet with a neurosurgeon. We went, and by the time we made it home from the MRI, the doctor called and said the infection is still there and the swelling isn’t getting better.

I had to restart treatments for another 3 weeks. We met with the neurosurgeon only to find out that there was a possibility that I could have glioblastoma, which is a rare brain tumour that mimics HSV encephalitis. We had to wait 3 weeks for another MRI to see if the treatments were working. After learning that this infection typically leaves people either dead or with severe, long-term conditions if not treated quickly, I fell into a severe depression.

My infection site started to heal and the swelling in my brain was reducing. I was finally healing from the infection, and I didn’t have glioblastoma. After 1 year and 5 months of treatments, MRI’s and blood work, I finally received the results I had wanted. My MRI showed that the lesion that remained was reduced and almost resolved. I instantly came out of a year-and-a-half long depression and started to move on from a period of not knowing what would happen to me.

What I’ve learnt

The biggest toll HSV encephalitis has taken on me was my personality and mental state. I used to be the funny guy, the guy who would have a joke for everything and be energetic; that went away for a very long time, but I finally feel like myself again. I feel like a better version of myself because of what I went through. HSV encephalitis is scary and can be fatal, but you have to stay strong and trust in the doctors treating you. I am so thankful for my doctors for keeping me on this earth to see my boys grow up and live a long life with my wife.

Have faith, be strong, be courageous and never give up. We are all survivors together, and we are all in this as one!

(story published in August 2024)