I recently had someone contact me in regards to their relative who was in a hospital, diagnosed recently with autoimmune encephalitis. It was an ongoing situation, and therefore extremely painful for them. Probably unless you are in the neurology field, or immunology, you have never heard of autoimmune encephalitis, unless it happens to you or someone you know. Most people think of brain injury being caused by a physical accident, such as a sports injury, by stroke, or by dementia. Very few people could imagine that a young person, twenty or thirty years old, could also receive a brain injury, from the immune attack of their own body.
The person who contacted me described their relative as being young, and previously completely healthy. Going from that state, to being in a hospital, held down due to severe aggression and violence, is of course shocking. I was asked whether myself I ever recovered, whether I was able to work. The person was concerned that their relative does not love them anymore. They did say after our conversation that talking to me gave them some hope, given that I also had similar symptoms of aggression and violence, swearing, believing that my close people were making plans on how to get rid of me. Not being sure if they were actually real, whether they existed, or only in my thoughts. It’s hard to describe that experience. And then going back to a much more normal state – being able to spend time with people as usual, not constantly finding secret meanings in their words, not seeing predictive signs everywhere. I also sent that person a story of recovery that I found on YouTube, and I hope it will add more hope for them as well. The young woman in the story clearly had a very severe case of encephalitis, as she was not able to recognize her parents and some point, she ended up in a coma, and currently does not remember those several months of illness. Also she provides important information on treatment in the video – for her it was specifically a combination of two chemotherapy drugs, Cytoxan and Rituximab. I think it’s important to know, as IV steroids or IVIG may not work for all cases of encephalitis. It’s good to know about other available treatment options, which as you can see, in some cases lead to great recovery.
Anti NMDA Receptor Encephalitis – Amanda’s Rare Autoimmune Disease Story
Hashimoto’s Encephalitis (HE) is a diagnosis that is made through exclusions of other causes. There is no one specific test to diagnose HE, but usually the tests that are performed are thyroid antibodies (Anti-Tg and Anti-TPO) blood test, MRI, EEG, and spinal tap. HE is a quite rare disease, therefore it is definitely not something that would be tested for right away. Many healthy people have elevated thyroid antibodies, these antibodies can also be an indicator of Hashimoto’s thyroiditis, which is not the same as Hashimoto’s Encephalitis. After I continued to not respond well to anti-depressants and anti-psychotics, I consulted with an endocrinologist to discuss whether I had any thyroid issues. My thyroid hormone levels were normal but elevated Anti-Tg and Anti-TPO antibody levels were discovered. At that point the endocrinologist diagnosed me with Hashimoto’s thyroiditis and stated that the thyroid antibodies were not something to worry about at the current moment as they were just an indicator that I might develop thyroid disease twenty years from now on. There is still no exact proof that it is these thyroid antibodies that caused my symptoms, but my condition did improve after intra-venous treatment with Solu-Medrol (anti-inflammatory glucocorticoid), and my antibody levels decreased as well. I will not claim causation, but there is correlation here, and my neurologist agrees that I have improved since the steroids treatment.
I am not sure whether the numbers are meaningful, it had been stated that specific values are not correlated with the severity of HE symptoms, but initially in June 2016 my Anti-Tg levels were over 1,000 and my Anti-TPO levels were above 40. This was during the period of time when I lost my job and was on Latuda and Sertraline. I was finding it physically difficult to wake-up, to move, and to talk. My speech was becoming slower and everything was also followed by intense emotional pain. It was sort of a state of grief without cause. As I mentioned in my previous posts, I did go on AIP (autoimmune protocol diet) diet after discovering that I potentially had autoimmune disease, and my symptoms did improve. I was able to go back to full-time work in November 2016 and after awhile tests showed that my Anti-Tg levels decreased to around 500, Anti-TPO levels stayed about the same. Again, this is anecdotal evidence, and I cannot claim that it is specifically the AIP diet that helped me. A gastrointerologist did advise me to try a low-FODMAP diet and AIP overlaps with low-FODMAP. Also I did have a ‘maybe’ result for celiac testing and I went gluten-free. I also stopped taking anti-psychotics and a new diagnosis of Hashimoto’s thyroiditis (at that time), instead of schizophrenia (diagnosis that I received previously), provided me with psychological benefits. Therefore it is not possible to untangle all the changes that I made during the summer and we don’t know which factor improved my condition. Some conditions improve and relapse in cycles as well, therefore changes in symptoms could be not due to the actions of the individual.