Tim shares his experience of herpes simplex virus encephalitis

Diagnosis of encephalitis

One day in May 2014, I woke up with a high fever (103°+) and a severe headache that wouldn’t go away. This was odd, I was 48 and in the best shape of my life working as a personal trainer, a P90X Xtreme finisher, a soccer coach, and new to the obstacle racing sport. I was extremely active as a parent and husband and never stopped moving. But this headache wouldn’t go away, and after being diagnosed with a severe sinus infection, I was sent home with some antibiotics.

I thought all was fine, and I went on my way. A few days later, I woke up with a severe headache and high fever again, so obviously the antibiotics weren’t helping. I was also very confused and didn’t know where things were. Worried that something else was wrong, my wife at the time took me to the ER. This time, she pleaded for them to look into it further, and even to have a spinal tap, but we were told that this would be too painful and too costly for a guy with a sinus infection; they sent me home with more antibiotics and told me to sleep it off.

A few days later, things got even worse and the headache and fever had gotten insane. I was so confused about what was going on that I didn’t even know my wife or daughter’s name, or where everyday things were. That really put my wife in a panic, and she demanded we go back to the ER and get more help. Thankfully, this time they agreed to do a lumbar puncture and that’s when they discovered it was more than a sinus infection; they told my wife it was herpes simplex virus encephalitis that had spread to my brain.

Herpes simplex virus encephalitis

It had progressed quite a bit and had done some damage, so I was immediately admitted and put on anti-viral medicines instead of antibiotics. It was tough for my wife to see her previously healthy husband now slipping into a coma-like state for three days. The doctors told my wife that due to the lateness of my diagnosis, I might not wake up, and if I did, I might not be in a very good state. I woke up with no memory of who I was, or who the person by the side of my bed was.

I had suffered some severe brain damage that had stolen my memory, but the extent of which was still to be determined. However, I was alive and still able to walk and talk. My prior good health saved me those days. I was in the ICU for nearly three weeks as the doctors monitored my progress, and then I was finally sent home to recover as best as I could. I had some home care for a while, but it was limited.

Treatment of encephalitis

For the next three months, I was at home on my couch on various medications (steroids, anti-seizure medications) to help repair my brain; however, they had unfortunate side effects which impacted my ability to look after myself. This translates to an insatiable appetite that made me want to eat everything, and had me up at all hours of the night, really not knowing where I was, who I was with, or who I was for that matter. This continued for quite some time, with little to no help; I gained 50 lbs and lost interest in my health and everything else. I was in a world of my own and lost more than just my memory.

One morning in 2014, three months after my encephalitis illness, I woke up with a sharp shooting pain up my leg which led straight to my heart. I ended up in ER again, where they admitted me immediately for emergency surgery. It was a massive pulmonary embolism, and the doctors couldn’t believe I walked in there. Again, I had been a strong and healthy man. The doctors performed the surgery and saved my life.

Recovery from encephalitis

Thankfully, I had survived another near-fatal event, just three months after encephalitis, the treatment for which nearly killed me again. After another week or so in the ICU, I was sent home to recover again. This time, I was off the antivirals and anti-seizure medications, and only on blood thinners to prevent more clots. That seemed to slow down my appetite, clear my mind up a bit, and get me back on track. I was home for the fall, focused on my recovery, and trying to get my life back.

Long story short, I got back to the man I was by the next spring, started working out again, and before you knew it, I was back out on a Spartan racecourse less than a year after my herpes simplex virus encephalitis diagnosis. I was running a race, proving ‘I CAN’, and trying to be the dad and husband I used to be. I’m not sure that I will ever return to the man I was before my diagnosis, he was gone, but the new man who had survived it grew even stronger, and more determined and hasn’t stopped since.

In 2017, I had to deal with other health issues again, linked to the medication I took after my encephalitis diagnosis. I had to get my right hip and left shoulder replaced. That was hard to accept, but I didn’t let that stop me either, and I kept doing it ANYWAY, even on crutches or in a sling.

Where I am now

So, long story short, I never stopped moving and continued to stay active. That goes for both my body and brain. I re-earned my personal trainer’s license in 2017 and my Spartan training certification in 2018. By maintaining focus on my physical and mental health every single day, I’ve gone on to run Spartan races, challenges, and events since then, including 50k Ultras. However, as I approach the 10-year anniversary of my encephalitis diagnosis on Memorial Day weekend in 2024, I’ll be tackling my biggest challenge ever, and running three marathons in three days; those same three days during which I was in a coma in 2014.

I will be proving that encephalitis couldn’t stop a strong and healthy man back then and can’t stop one now either. That event is called the Texas Triple in Dallas on May 25th, 26th, and 27th Memorial Day. I will use it to help raise funds for encephalitis and awareness of physical and mental health. I can’t wait to cross all three finish lines and to keep GOING and doing it ANYWAY.

What I’ve learnt

Herpes simplex virus encephalitis stole WAY more than just my memories back then (family, finances etc.), many things I’ll never get back, but I hope the message of my story is that I didn’t lose my life because I always focused on my health. That’s not only what saved me both times, but it has helped me recover from so much, and that is still something that I had control of, even when things seemed out of control.

Now, I’ve moved to Florida to be with my ageing parents and to help with their health. I work and play Pickleball for a living, am in full control of my life, and am in great health.

So, not all parts of my story have a happy ending, but I’m still here making new memories, and living a healthy and active life.

(Published May 2024)