We are excited to announce that starting today, on World Encephalitis Day, we will be following Andrew as he prepares for the Ironman 70.3 race in Victoria, B.C. on May 31. Andrew is an AE survivor and wants to raise awareness. He already writes about his life with AE on his own blog and he will be doing a blog series for AEA and all of you, taking us along on his journey from his AE diagnosis all the way to race day in May. We are excited about being part of his challenge as he runs, bikes and swims to raise AE awareness and inspire others. Thank you, Andrew!
Hello, my name is Andrew, and I’m running the Ironman 70.3 Victoria this year. I also have a version of Autoimmune Encephalitis called Central Nervous System Vasculitis. This means that my immune system is attacking the blood vessels in my brain.
It all began in the fall of 2017 when I started to experience flu-like symptoms. The symptoms progressed for around 2 weeks when I decided to go to the doctor. At the appointment, the doctor told me that it was most likely a virus and to return in a few weeks if the symptoms persisted. A few weeks later, upon returning from a business trip in Hawaii where the symptoms progressed to almost stroke-like symptoms (i.e., mental confusion, instability) noticed by my wife who was also on the trip, I made another appointment. At this point, the doctor recognized something was very wrong and administered a cognitive test. While I felt confident answering the questions, the outcome was very different and resulted in an urgent order of a MRI. The radiologist tech conducting my MRI came out to the waiting area and told me that I should check-in to the hospital immediately. The ER doctor reviewed the imaging advising that my brain was showing lesions and I was then checked into the hospital where I underwent further testing. Many consultations followed with various specialists remaining perplexed by what could be causing the lesions. Ultimately, the neurologist recommended transfer to a larger, level 1 trauma teaching hospital where I could be provided better care and hopefully an answer as to what was going on. I was transferred and remained at this hospital for a few more days where further testing was done and many more doctors consulted on my case. Ultimately, I was dismissed since I showed in stable condition and was told further testing would continue in outpatient.
Less than 2 weeks after being dismissed my wife and I were having dinner where I had either a seizure or a mini-stroke (doctors were never able to say definitively) at the table. I was transported back to the hospital in a semi-comatose state where doctors decided to give me a high dose of prednisone (something they were unsure of previously). The next day I came out of the comatose state and doctors decided the best course of action was to continue the prednisone as whatever was attacking my brain could be controlled through this treatment. While I was in the hospital, I had a biopsy of an enlarged lymph node, surgical removal of that enlarged lymph node that returned inconclusive, countless MRIs and lumbar punctures, and finally a PET scan. Eventually, the neurologists labeled my disease as Autoimmune Encephalitis as it can encompass a wide range of diseases. After a week, I was discharged with a prednisone prescription and many upcoming trips to occupational, speech, and physical therapy.
Physical and speech therapy proved beneficial in terms of regaining improved motor and cognitive function. After a couple of months, I recognized noticeable differences and before I knew it, I was back working out and running again. While my physical ability returned close to where I was before the disease started, I still had some work with my cognitive function and I was still having issues with memory loss that continue to this day, though, much improved to where I was two years ago.
Over the course of the last couple of years, I have worked with doctors to taper off prednisone. Each time the symptoms return once getting to a lower dosage. In July 2018, I had another MRI that showed the lesions on my brain had moved hemispheres. They were now on the right side of my brain. The decision was then made to start an immunosuppression drug (Cellcept) which would work to suppress my immune system to control the disease. From July 2018 to January 2019, I was in the process of tapering down my steroids. I made it to 3 mg of prednisone before symptoms returned with a vengeance. I was at an outdoor mall with my wife when she noticed my speech was becoming incoherent and I was confused as to where we were. I remember looking at the mall map and not being able to explain the location of a store to my wife. It’s such a weird experience to know in your mind what you want to say, and then not be able to make the words/thoughts come out of your mouth. I eventually told her I needed to sit down as I was tired. At that point, she suggested we go back to the car and the next thing I remember is waking up in our bed. I was told to immediately increase dosage of the prednisone to 40 mg which eventually leveled me out.
In July 2019, it was decided to transfer my care to my present neurologist who had consulted on my case previously. This particular neurologist has an area of expertise in MS and other diseases that mimic this disease, including mine. After reviewing my case in detail and diving deep into the imaging, he has concluded with near certainty and I have Central Nervous System Vasculitis. The updated course of action is to continue taking steroids at 20 mg until I can move to Stage 2 of my treatment plan. Cellcept, the pill I was on for the first stage of treatment, works by suppressing the T cells in your body. The initial thought was that if we suppress the T cells, my brain would not be attacked. However, by taking out my T cells there was no effect on my disease or the Cellcept was not strong enough to fully take my T cells out. For Stage two, I’m going on a drug called Rituxan. This drug wipes out your B cells for 6 months, and since they grow back, I’d have to get treatments every 6 months. The thought is that if you take out the cells that are tagging my brain cells as bad, then my brain will stop being attacked by the T cells and will start to heal itself.
The problem with switching drugs is, that since the Cellcept took out my T cells and the Rituxan will take out my B cells, I would not have a functioning immune system to fight off diseases. We must make sure my T cell count rises before going on the Rituxan. That way if I get a disease, I will have T cells to help my immune system battle the disease. The plan is to start Rituxan soon, which will overlap with my Half Ironman Training. I suspect my training schedule will start to get harder; however, I will not know until I get there.
It has been a long 2 ½ years dealing with this disease. I have learned so much about the disease and who I am as a person. I was raised in a Christian household, and so that means there have been a lot of prayers for me and super supportive family and friends. I will also tell you that I have the best wife for me. When you say “in sickness & health” in your wedding vows, you never know what that means. My wife has been my rock through this whole process. There are not a lot of people I would stay at a hospital for weeks with, and she didn’t complain once about it. I do believe that when God picks out someone for you, he does a good job. We’ve had to change a few of our plans because of my disease, but we adapt and keep moving.
As I previously stated, I’m running the 70.3 Victoria to raise awareness for AE, and to do my small part in educating people about this disease. Please come along with me on this journey.
As always, thank you for reading.
PS: I’m not a doctor, and don’t pretend to be. All I am is someone that has experienced a terrible disease for the past few years, and with the help of various AE organizations have studied up on it. I’m always learning about it too. If you want more in-depth thoughts, and follow along with my journey please check out my blog at www.mylifewithae.com.