Overcoming a rare brain disease: 5 years of CASPR2 autoimmune encephalitis

Epistemic status: N=1. Drug responses are self-observed, mostly uncontrolled, with confounding factors noted whenever possible. Lab and imaging numbers are from my records. I'm a programmer, not a doctor. crossposted from Substack. TL;DR At 19, I began to experience chronic illness that first looked like ADHD. As it got worse, doctors called it bipolar, depression, and tension headaches. It took ~20 months to get to an effective diagnosis: I had CASPR2 encephalitis, which showed up on a single positive blood test. Brain scans, spinal fluid and brainwave tests were all normal. I responded favorably to traditional first-line and second-line immune treatments, getting a lot better each time, but the acute lift gradually faded, leaving me a bit better than before. My post-treatment symptoms (fatigue, memory, gut trouble, poor sleep) are well documented in the literature, but I found no trials of any treatment for them. What helped: a brain-peptide drug (cerebrolysin), a low dose of an Alzheimer's drug (donepezil), a clean gluten/lactose-free diet, and short high-intensity interval (HIIT) workouts . Most other things did nothing or made it worse. In the following paragraphs I share my recovery story, advice for dealing with doctors, notes on various health systems, and what I’m still working on. It’s a long post & some of it is unpolished. You can help improve it by asking questions & dropping comments. 1. What happened When Age What happened Late 2020 19 Can't focus, less energy…