Autoimmune disease happens when the immune system attacks and destroys healthy body tissue. There’s nearly one hundred different autoimmune diseases, all with different causes and symptoms but they’re more common than you’d think.
The term Autoimmune Encephalitis is used to refer to a group of disorders that cause some part of the immune system to attack healthy cells of the brain. When the brain gets attacked, its response is inflammation and a whole host of neurological and/or psychological symptoms.
The brain is phenomenal, I can’t stress that enough (I’m a huge nerd, if you haven’t gathered that already). There is a structure surrounding the brain – called the blood-brain-barrier (BBB) – formed by cells being tightly compacted together in the space between blood vessels and the brain. This membrane separates extracellular fluids and circulating blood. The blood can be exposed to all sorts of pathogens during circulation, which can be devastating if they cross into the brain. This is why the BBB is incredibly selective in what it allows to pass through, so it can protect the brain and central nervous system from harm. Stay with me here…
My BBB was perforated (creating a hole) sometime in my early childhood yet, went undetected until I was sixteen. I was mildly symptomatic from about the age of seven with neuropsychological symptoms, which increased in severity as time went on — anxiety, OCD, sleep disturbance, sensory issues — and some physical symptoms — headaches, GI pain, clumsiness, hearing loss. We treated symptoms for a while, which meant I tried every anti-anxiety, anti-depressant, anti-psychotic, anti-epileptic on the market. My teachers and parents had me assessed for developmental delays, with no answers. We tried all sorts of strategies and lifestyle changes with no success.
Once we had our answer, through MRI, neurological exams, psychological exams — we began to identify triggers. Removing the triggers as they were identified was really what it came down to. Through lab testing we found that I had an old, yet active Lyme infection that had wreaked havoc on my body through the many years it had to reproduce and grow. We also identified other tick-bourne illnesses, likely from the same bite that caused the Lyme. Through many years of Lyme treatment, I was able to hit a point of “remission” from the Lyme and coinfections.
Due to the nature of how my immune system works, I have to be very careful when I get sick. When triggered my immune system will properly release antibodies, as a healthy person would. My antibodies don’t know how to attack the trigger (like a virus or bacteria) and instead go directly up, through the BBB hole and into my brain. Let me tell you — antibodies don’t belong in the brain. I have to work quickly to get whatever the trigger is under control so it doesn’t get out of hand or cause more damage to the brain.
I have made progress and nowadays I am currently asymptomatic, in regards to the Autoimmune Encephalitis. I do have some long-lasting effects from the damage that was done over the years. The biggest ongoing effect would be my hearing loss, it has gotten much better but I struggle with processing auditory information, so I may be able hear you fine but at times I have no idea what you’re saying. I struggle in general with sensory processing and integration, I think that’s just how my brain was wired from birth but certainly amplified by inflammation. There’s no slowing me down though!