I got tick-borne encephalitis (TBE) in autumn 2023, here some memories and insights of the complex journey with the disease.

The whole thing started in a Teams meeting with a customer. I suddenly felt quite nauseous and had to close the meeting early, started to vomit and horrible headache begun. Luckily, I was at home and my wife came soon to check my situation. Later, I heard that she took me to an emergency unit at the University Center Hospital next day when my fever raised up to 41 ˚C – I don’t have any clear memories of that.

In the hospital, I was quickly transferred to neurology clinic and doctors said that I’m suffering from some kind of brain inflammation. For the first days, the situation was rather serious, total fatigue, breathing was difficult, and general condition was challenging. I was delusional and later heard that the doctors were asking my wife to confirm some of the discussion, like “the patient claims to have a PhD in chemistry and is running his own nanotech company”, which is actually true. I was also claiming that I’m still in the military service, which was the case 30 years ago, and so on.

Lots of studies followed: MRI, CT, lumbar puncture, etc., which confirmed the inflammation, but not revealed the cause. As I was fully vaccinated against TBE, it was not considered to be probable origin for the situation, and I was diagnosed as having an autoimmune encephalitis. Based on that, I was given massive dosage of intravenous cortisone, which did improve my condition dramatically and I gradually came back to this world after 30 days of hospitalization. After some tedious neurological, physical, and functional testing they decided that I could go home and continue recovery from there.

Luckily, I was getting full support from the Nordic health care system: physiotherapy, neuropsychology support, and occupational therapy were generously offered in a nearby neurology rehabilitation centre and I was able to stay at home. Gradually, I started to realize that the recovery will take a long time. Right arm and leg were not working properly, muscle strength was very low and coordination and balance in walking was seriously damaged. The fatigue was, however, the worst thing. Everything that needed serious attention or processing power of the brains was extremely challenging. The data coming from the environment was going into my head unfiltered: voices, colours, touches filled my head, and brains sort of switched off after a certain time. At the early stage, I could do a one 30 minutes task per day, the rest was needed for sleeping and recovering.

To be honest, I was pretty scared about the situation. Returning to highly demanding work seemed absolutely impossible as the fatigue took the control so quickly when exposed to cognitively challenging situations. One does not need a right leg to be a scientist, but poorly functioning brains is another thing. All the professionals tried to explain that the recovery will take time, but it was challenging to accept it.

After three months, they called from the hospital that they found something interesting from the latest samples – “you had a tick born encephalitis”. The right markers appeared to the samples with a delay, probably because of the vaccination that I got against TBE. It was finally nice to get a precise diagnosis, although it didn’t change much. I remember that I had four tick bites in the previous summer, but didn’t worry about those as those are quite common here and I mainly followed the signs of borreliosis.

After four months, I was able to slowly start at work again – it was absolutely great! It is difficult to describe the feeling of happiness for doing something rather normal work-related tasks and seeing that it went well, and the performance is still in a good level. After six months, I returned fully to my earlier position at work. Perhaps luckily, my profession has some features that naturally fitted well with my condition: typically the work environment is calm and quiet, interaction is often one-to-one discussions and it is absolutely ok to get isolated into my own bubble every now and then. Interacting with fellow introverts was easy compared for example to a visit in a supermarket.

Now, after about a year from the onset of TBE, I’m feeling great. Some of the symptoms, like issues with the balance and certain tic movements when tired are still present but I can live with those. My neurologist gave instructions in the last meeting: drink moderately, eat healthy, exercise regularly, sleep enough, cut-off unnecessary jobs, delegate more, etc. –quite self-evident things but important to follow.

Lastly, I must mention my exceptional friend, a colleague who survived from a brain seizure some years earlier, and he has been helping me a lot to understand what this thing is about. Every brain damage is different, but there can be many similarities also. It has been highly beneficial to exchange thoughts with someone who has gone the same path earlier.

 

If you would like support for encephalitis please get in touch.

Story published May 2025