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

2020–2021: It looked like ADHD

2020. It started in late 2020, when I was 19. I couldn't focus on things I usually could, I had less energy, and noise started to bother me in a way it hadn't before. It looked like ADHD, so by Christmas I was on Ritalin (methylphenidate). The ADHD meds helped a lot, but they wore off fast and I crashed afterwards. When I went back to my psychiatrist about the Ritalin crashes, they decided I was bipolar.

2021. Around the middle of the year my stomach gave out. Food I'd eaten all my life, even plain white rice, stopped agreeing with me. It would feel like it would just sit there. I would have intermittent diarrhea. I was easily anxious, and I wasn't sleeping properly: some nights I lay awake for hours, hot and sweaty, and even when I slept I woke up unrefreshed.

Day to day, my life shrank. Brushing my teeth started to feel like a chore. A lunch out with friends meant I couldn't work that afternoon. I used to need an hour of rest after lunch; then I needed three, which became four, five. By autumn I couldn't keep up anymore, so I quit my job and returned home.

I started wearing noise-cancelling headphones everywhere I went because the noise would overwhelm me and cause meltdowns. The top of my head felt like it was burning from the inside, a low, dull burn that didn't go away. Exercise, which used to be how I reset, now left me worse. I forgot basic things several times a day: I'd leave my keys at home; walk into a room & forget why. I lost several water bottles, umbrellas, clothes, etc.

Even my vision felt off: weirdly 'low resolution', with weak peripheral awareness and nothing quite sharp, though my eyes themselves seemed fine.

Late in the year it reached my mood, and that lasted well into 2022. Nothing felt good anymore: not sports, swimming or hiking, not work or reading, not even dopaminergic vices like gaming. I cried, and my mood swung hard; things made me sad or angry far more than they should have. This is very different from my baseline. I'm usually very grounded, I see the good in things, and able to self-regulate with time and distance.

Sure, I'd been depressed before, but this was different. It didn't lift when I did everything right, it lasted far longer, and depression didn't explain why I was in constant pain, why my gut stopped working, or why I lost the ability to tune out noise.

All of my care in those first two years was in a small middle-income country. Its health system scores above 65/100 on the Lancet's Healthcare Access and Quality index, roughly where Thailand and Mexico sit (the US and UK are around 90), and it has fewer than one neurologist per 100,000 people.

After quitting I researched the literature & tried supplement after supplement (full list in the appendix), but none of it helped appreciably long-term. My weight dropped to 128 lb at 5'11".

2022: Diagnosis

2022. In March I had surgery to fix a deviated septum so I could breathe & sleep better. Just a month later, my cat scratched my thigh & it got infected. I ended up in the hospital with a high fever and was put on antibiotics (although they did rule out cat scratch disease).

Nothing else was getting better, so in May, I agreed to try an antidepressant (duloxetine) to see if it would help my depression. It mostly didn't. A couple months later, I tried to end my life because of the pain.

Finally, at this point, I decided to let my family in & to keep on living, even if living was horrible. After all, what's another 20-60 years of perpetual suffering? At least I will have tried. We saw a reputed neurologist, who told me it was just tension headaches. But that didn't explain the rest of my symptoms! So we went to India.

I was admitted to KIMS, a private tertiary hospital about 20 months after onset. They ran almost everything, and almost everything was normal. Then, a blood test came back positive for CASPR2 antibodies.

What autoimmune encephalitis is

In autoimmune encephalitis (AE), the immune system makes antibodies against proteins on your own neurons. Depending on the target, you get psychosis, seizures, memory loss, sleep problems or autonomic dysfunction, often in combinations that look psychiatric. Treatment is immunotherapy: steroids, IVIG or plasma exchange first, then rituximab or cyclophosphamide.

A good intro is Brain on Fire: My Month of Madness by Susannah Cahalan. She was a 24-year-old New York Post reporter who suddenly developed paranoia, seizures and catatonia. Doctors blamed alcohol withdrawal and psychiatric illness. A neurologist, Souhel Najjar, asked her to draw a clock; she crammed all the numbers onto one side, pointing to right-hemisphere inflammation. She turned out to have anti-NMDA receptor encephalitis, which had only been described two years earlier. She recovered with immunotherapy and wrote the book from her records and family accounts.

AE's psychiatric presentation (agitation, bizarre behaviour, abnormal movements, sudden personality change) has often looked like demonic possession. In a 2019 case report, a 33-year-old's family and nursing staff suspected possession and her father asked for a priest before she was diagnosed.

CASPR2 encephalitis is a rarer subtype. CASPR2 is a protein that clusters potassium channels on nerve fibres, in the brain and in peripheral nerves. That's why it can cause memory and sleep problems, autonomic symptoms and nerve pain or hyperexcitability together. It mostly hits middle-aged and older people: a German registry study of 388 AE patients cites an onset range of 46 to 77 for CASPR2, and in a Chinese cohort of 35 the median was 43. In that Chinese cohort, onset before 30 predicted worse long-term outcomes and more relapses.

My doctor said my case was quite mild: after all, I didn't have neuromuscular issues or seizures; I had memory loss but I still remembered who I was and most pieces of my life. Anyway, I got treated immediately.

Five days of IV steroids (methylprednisolone) and donor antibodies (IVIG) made me feel a lot better, though some of that may have been steroid hypomania. I went home on oral prednisolone plus a pile of psychiatric drugs: an antipsychotic/antidepressant combination (flupentixol + melitracen), paroxetine + clonazepam, and lorazepam. I wasn't psychotic, and they mostly made me lethargic. One of the antipsychotics had the weirdest side effect where I would remain conscious during sleep, so I got off that one and the benzos (I didn't want to get dependent) as soon as I could.

Prednisolone gave me a moon face, muscle loss, wild hunger, blood sugar swings and hair loss, so I tapered a couple months faster than recommended. Mycophenolate mofetil followed for about six months. At home I still couldn't do much beyond some exercise, cooking, and a few hikes, and I slowly slid back down. I spent most of my time doomscrolling and watching YouTube.

2023–2024: Rituximab, and back to work

2023. I wanted to get better, so I went back to India and asked for rituximab. My first doctor said no, so I took the papers to India's national neuroscience institute, whose neurology department had published the country's first CASPR2 case series two years earlier. I showed them the literature where rituximab led to improved outcomes & asked for their blessing. They agreed, but also told me to stop reading so much.

By then my antibody tests were negative in both blood and spinal fluid, and my memory test and neurological exam were normal. A PET-MR scan of brain activity was not. The radiologist's summary: "The pattern of hypo and hypermetabolism represents an AIE like pattern." So they treated me despite the negative panel because of persistent symptoms and the PET.

I got five days of IV steroids, then rituximab, with a second dose a few weeks later. The plan also called for monthly steroid pulses for three months (which I skipped) and rituximab every six months. Rituximab gave me a deeper recovery than the steroids had. Over time I settled below that peak, though still above where I had been before treatment. One small tell: tianeptine, which had lifted my mood before rituximab, did nothing when I retried it afterwards, as if whatever it had been treating was gone.

At best I was cooking, doing chores and getting to the gym now and then. Plasma exchange came up and I skipped it, reasoning that I'd already had IVIG. Still, by the end of the year I felt well enough to do a low-intensity job that kept me on my feet, & then to start traveling and volunteering.

2024. A course of cerebrolysin clearly helped my brain; I wasn't doing anything else at the time. Cerebrolysin is a mix of peptides extracted from pig brain, used for stroke and brain injury in Russia, Eastern Europe and parts of Asia, and not approved in the US. The evidence for it is weak. For the skeptical case, read WTH is Cerebrolysin, actually? (Aug 2024). It argues that the neurotrophic peptides the manufacturer claims probably aren't there in meaningful amounts, and that they couldn't cross the blood-brain barrier if they were.

I don't have a mechanism to offer against that. I only know I had a clean window, nothing else changed, and I got better. It did come in the year after my first rituximab, so some of it may have been delayed recovery from that.

I started in March with 10 mL intramuscular injections every other day for about two weeks, then every few weeks (5–10 mL) through October. In total, 150 mL over 16 injections. The first day brought brain fog and irritability; by the fourth dose I had a strange sense of feeling sharp, quite unlike a stimulant.

Later in 2024, a friend implored me to go to UCSF, so I saw a specialist there. They didn't have much to offer other than an expensive suite of retesting (especially for other antibodies & diagnoses) and stimulants for support, but it did restore some faith in the healthcare system for me.

I had a second rituximab course in November. By the end of the year I was programming full time again, though I could only keep up two of work, exercise, friends and chores at once; I never had energy for a balanced life.

All three rounds of immunotherapy:

2025–2026: Where things stand

2025. I was working and going to the gym, but every couple of months I'd push too hard and get sick. May to July were bad for no reason I could find, and I tried low-dose fluoxetine which made things worse.

Mid-year I was treated for H. pylori; the antibiotics gave me ten days of diarrhea, but afterwards the post-meal brain fog improved. I tried NADH, which fixed my sleep schedule for a few weeks in August & gave me more energy, but it plateaued afterwards so I stopped.

2026. Daily vitamin D, no gluten or dairy, and regular running made a real difference early in the year. In the spring I returned to the US & ordered a full workup. The antibody test was still negative and my brain MRI was normal, but I turned out to have sleep apnea (moderate by the headline number, mild by most other measures) and slightly high thyroid hormones.

During this time I scoured the literature for different solutions, and came upon donepezil, prescribed mostly to Alzheimer patients. I started a low dose, and my memory, cognitive energy, and slow gut all improved to varying extents. I was also on low-dose Adderall XR for part of this stretch, so the combination muddies the attribution. My regular memory lapses mostly stopped; I'm now the heaviest (155 lb at 5'11") I've been since getting sick.

2. Everything else I tried

As I said, residual symptoms are well measured:

• After LGI1 encephalitis, fatigue was the most common long-term deficit (52%), and only 4 of 27 employed patients returned to their previous role. (JAMA Neurology, 2021)
• In a 75-patient CASPR2 cohort, fatigue and neuropathic pain were the most immunotherapy-refractory symptoms, persisted up to 6 years, and predicted disability better than antibody levels did. (Annals of Neurology, 2025)

But the trials are all about immunotherapy: relapse prevention, seizure control, first-line choice. I couldn't find a single controlled trial of a symptomatic drug for post-AE fatigue or cognition. The closest is a registered remote cognitive rehabilitation study in NMDAR encephalitis.

So nobody went out of their way to offer me a plan for the post-treatment symptoms. Upon insistence doctors would reach for antipsychotics, antidepressants and stimulants, and occasionally over-the-counter supplements like vitamin D or melatonin. Almost everything below I found myself, by reading and then trying things one or two at a time and writing down what happened.

What helped

• Cerebrolysin (2024). The clearest improvement in my thinking. Details and caveats are in the 2024 part of section 1.
• Donepezil, 2.5–5 mg (2026). My constant small memory failures mostly stopped, and at first it also lifted my mood, though that disappeared later. The cost is more rigid thinking and less creativity, and the occasional diarrhea. Nobody suggested it and it isn't in the CASPR2 literature; I found it by reading. Donepezil is a cholinesterase inhibitor, but unlike most of its class it also strongly activates the sigma-1 receptor. Other cholinergic drugs typically make me worse, so my working guess is that sigma-1 is doing the work. 10 mg was too much for me; I had 5 mg/day during the loading phase and now take 2.5 mg/day for maintenance.
• Short interval workouts. Whereas before I would work out for ~90 min, now my workouts are less than 45 min. I alternate between high and low intensity instead of long steady outputs.
  • For instance, my cardio used to be running 3-5km. Now I warm up with walks, then I sprint for 1 min, walk for 2 min, repeating 2-4 times (or cycle or row with the same alternations).
  • For weights, I do a warm-up light set, then I do 2 sets of 6-8 reps (instead of my usual 12); and I prioritize compound exercises.
  • This change has let me improve week over week instead of just building up exhaustion.
• Diet and vitamin D (early 2026). Cutting gluten and dairy, eating less carbs, taking vitamin D daily instead of in one big weekly dose, and running semi-regularly together made a noticeable difference to my energy. I also began incorporating liquid meals to put on weight, which is working.
• NADH (Aug–Sep 2025). Fixed my sleep schedule and gave me more energy for two to three weeks, then lost about a third of its effect and started making me anxious. I stopped.
• Probiotics. VSL#3 helped my digestion and energy, but I took it during an immunotherapy course, so I can't separate the two. Most OTC probiotics did nothing.

What didn't work, and the patterns

Most of what I tried did nothing or made things worse. Looking across all of it, a few patterns stand out:

• Stimulants help, then charge interest. Methylphenidate and Adderall sharpened my focus, and Adderall XR with donepezil was the only time my gut moved properly. However, it's very hard to dial in recovery. Eventually I lost metacognition, got stuck on tasks OCD-style, irritable comedowns; time felt sped up, felt robotic, low appetite, insomnia. It's also a pain to follow up & renew your prescription so I mostly stopped.
  • I also have a weird thing where many stimulants and supplements kick in a second time after 6–7 p.m.: the morning dose works, I dip in the afternoon, then it comes back (sometimes more strongly than it did in the morning) and wrecks my sleep. I'm unsure what causes this.
• Cholinergic drugs mostly make me worse. Piracetam, nicotine and citicoline left me depressed or with an internal monologue I couldn't switch off. Donepezil is the exception, which is part of why I suspect its sigma-1 action.
• Serotonergic drugs did nothing or made me worse. 2-3 antidepressants and methylene blue.
• "Energy" supplements often backfired. CoQ10, creatine and eventually NADH gave me anxiety or an odd overdriven feeling rather than energy, and high-dose thiamine made me depressed.

3. Practical lessons

• The field is young so doctors often miss AE. "Limbic encephalitis" dates to 1968, but antibody-defined AE starts in 2001 (VGKC). NMDAR was described in 2007 and CASPR2 in 2010. Many doctors have never seen a case.
• Specialists aren't T-shaped. Neurologists never cared about my digestion; psychiatrists wouldn't bother with my physical symptoms. It's on you
• Psychosomatic reasoning only runs one way. "Your emotions are making you physically ill" is an easy default. "Your body is making your mind ill" rarely gets considered. Psychiatrists kept landing on "he's mentally ill."
• The trusted tests were normal. MRI, CSF and EEG were clean. A normal MRI and normal spinal fluid do not rule out AE. CASPR2 in particular is often positive in blood and negative in spinal fluid. FDG-PET can show abnormality when MRI doesn't, though its overall usefulness is debated.

What worked with doctors for me

1. Bring a written history and every result. Make the differential easy for them.
2. Learn how differential diagnosis works so you can help them think.
3. In general, be respectful of your doctors, even if it is hard when they flounder.
4. Protect your credibility. Once they dismiss you, it's often for good.
   • Give magnitude, not adjectives: "I need 3.5 hours of rest every afternoon," not "I'm really tired." Make clear comparisons to your past or the averages around you.
   • Be deliberate about mentioning supplements. Know how it will land.
   • Avoid coming off as the webmd guy - don’t cite surface level stuff (yt videos, blogposts, chatgpt).
5. Avoid looking too healthy or too sick: be clean but dressed down. If you look healthy, you'll be treated as healthy.
6. Push for more testing rather than more treatments. Whenever possible, ask doctors to test for relevant markers first.
7. Bring papers, and switch doctors if you have to. My first doctor refused rituximab. A second hospital approved it after I brought the literature, and told me to stop reading.
8. After acute treatment you're mostly on your own. Almost no one will help you optimize for the thing that matters: how big your energy envelope is.

Healthcare systems

I've been through four kinds of system. Each was good at something different.

Lessons:

• If your local system has almost no neurology, going to a high-volume neuro centre, even abroad, may be the highest-leverage move you have.
• Direct-to-consumer lab ordering (US) lets you run the broad panel yourself, then take results to a doctor.
• Keep a copy of every report. You may need to ask your doctors. I never got the original 2022 antibody report, so I don't know the titre or the assay.
• Consult length decides how much of a multi-system history gets heard. Where you get five minutes after a day of waiting, bring a one-page summary that leads with the most important facts.

Energy and exercise

• Everything draws from one pool. Work, exercise, social life, chores: I get about two. Adding a third means another one drops.
• Duration costs more than intensity. ~15 min of intervals raised my envelope. Long runs drained it. This goes against standard PEM advice, so it may not transfer to you.
• Reset your baseline. I used to play badminton intensely. Across all activities I had to cut my strength and output expectations a lot to avoid crashes.
• Overshooting has a delayed cost. For me that meant fever or a GI bug every couple of months when I pushed too hard. Here, measuring HRV (e.g. through Oura) made a difference.
• Remove small drains. Noise-isolating headphones in loud places made a real difference.
• Sometimes resting is tiring. You can only rest for so long before it starts to actively be harmful. Go for a walk, meditate, socialize, do some sauna, do some shopping. Let your brain and body engage and recover in different ways.
• Be in touch with your natural rhythms. For me, my best hours are in the late mornings and early evenings. In the afternoon, I rest or do low-intensity stuff.

4. Where I am now (2026)

I'm working full time as a programmer & working out 2-4 times a week. I'm functional but not back to baseline. I'm the heaviest (& relatively lean ~16% body fat) I've been since getting sick, but I still don't wake up right, lunch still costs me hours, and I don't feel 100% sharp.

Residual symptoms

• Fatigue. Still the limiting factor. PHQ-9 is 10, but nearly all of it comes from the fatigue and concentration items (3 each); mood items are low and item 9 is 0.
• Memory and cognition. Much better on donepezil. My only formal cognitive testing was just before I started it (see the 2026 workup in the appendix), so I don't have numbers for the improvement yet.
• Postprandial fog. 1–3 h after meals, worst at lunch.
• GI. Intermittent reflux and slow motility.
• Sleep. Wake 8:30–10 a.m. without a sharp wake-up, often mid-dream. Sleep onset varies from 10 p.m. to 2 a.m. PSQI 7.
• Visual processing. Still comes and goes with how I'm doing overall

Follow-ups I still should probably do

I've been delaying these because a) cost b) they would probably help with diagnosis but treatment is a different matter entirely.

• Colonoscopy/endoscopy with biopsy to rule out celiac disease & a host of GI issues. I think there’s a fair chance of this
• Do another round of surgery to correct my nasal obstructions
• Look into gut-related peptides (KPV, BPC-157 subcutaneous injections, one more I can't remember rn)
• fecal transplants possibly if I can find a suitable donor
• mapping my gut microbiome (this likely would not lead to any actionable advice tbh)
• See a competent endocrinologist about the thyroid pattern (high fT4/fT3 with a normal TSH since 2021; see appendix)

If you (would like to) know anything else, please drop a comment!

Appendix

Weight (5'11")

2026 US workup

Thyroid history

High thyroid hormones show up at three labs in two countries, starting before any steroids or immunotherapy.

In 2021–22 this looked like mild hyperthyroidism: low TSH, high fT3, no thyroid antibodies (TRAb, and TPO/Tg later). By 2026 TSH was normal while the hormones stayed high, which is no longer a hyperthyroid picture. A normal TSH beside high fT4 and fT3 is the inappropriate-TSH pattern, where thyroid hormone resistance and assay interference sit on the differential. That is the question for the endocrinologist.

Mild hyperthyroidism overlaps with some of my early symptoms: diarrhoea, weight loss, insomnia, night sweats, anxiety. My resting heart rate has always been low (56–59), which argues against it.

Sleep apnea

Sleep apnea at BMI 19.5 isn't the typical profile, and "moderate" overstates it. The AHI of 17.8 puts it in the moderate range, but almost all the events were partial (hypopneas) rather than full stops, my oxygen never dropped below 94%, and they happened mostly on my back (AHI 28.9 supine vs 10.4 otherwise). The oxygen desaturation index was only 3.2 an hour, so most of the hypopneas were scored on brain arousals rather than oxygen drops. Under the stricter 4%-desaturation rule some labs and insurers use, it would likely come out under 5, which counts as normal. The arousals still matter, though: 18 an hour is enough to fragment sleep.

I had a septoplasty in 2022 and the MRI still shows sinus disease. The sleep physician recommended an AutoCPAP trial, myofunctional therapy and some other stuff. Right now I use Breathe-Right nasal strips. The cheaper way is to use ordinary tape, stretching the skin beside the nostril until it opens, then taping it in place. I think I’ll probably need a second sinus surgery to correct this long term.

Everything I've taken, 2020–2026

A list compiled just for reference. As I've said earlier - most supplements did not help long term, and if they did, they came with side effects.

Immunotherapy. IV methylprednisolone, IVIG, prednisone, mycophenolate, rituximab.

Stimulants and wake-promoters. Methylphenidate, Adderall IR and XR, lisdexamfetamine (Vyvanse), modafinil, bromantane, theacrine, nicotine, caffeine.

Psychiatric and neurological. Duloxetine, paroxetine, flupentixol + melitracen, clonazepam, fluoxetine, tianeptine, lorazepam, clorazepate, gabapentin, carbamazepine, amantadine, memantine, donepezil, low-dose naltrexone, methylene blue.

Cholinergics and nootropics. Piracetam, citicoline, choline

Peptides. Cerebrolysin, BPC-157, low-dose tesamorelin, oral pinealon, NAD+ injections, Semax / Selank nasal sprays.

Vitamins, minerals and metabolic. Vitamin D3, vitamin K2, vitamin C, B12, B6, P5P†, L-methylfolate, multivitamin, thiamine HCl, TTFD, riboflavin, nicotinamide riboside, NMN, NADH, CoQ10, creatine, magnesium (glycinate, citrate, chloride, glycerophosphate), zinc, calcium, lithium orotate, electrolytes.

Amino acids and other supplements. NAC, acetyl-L-carnitine, agmatine, L-theanine, taurine, glycine / gelatin, collagen, L-glutamine, BCAAs, L-carnosine, inositol, pregnenolone, omega-3, betaine HCl, lactase, activated charcoal, psyllium, tributyrin.

Probiotics and gut. Lactibiane Tolerance, Ultrabiotique, Florastor (S. boulardii), VSL#3, Pendulum Metabolic, Visbiome, kefir.

Herbal. Nigella sativa, polygala, bacopa, rhodiola, ginkgo, tongkat ali, shilajit, ashwagandha, maca, Panax ginseng, saffron, gotu kola, turmeric, triphala