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I was recently diagnosed with anti-NMDA receptor encephalitis

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Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#261

Earlier quoted context omitted.

This is the first I'm hearing about anti-NMDA receptor encephalitis; what a strange and scary condition. If you don't mind the prying, I'm curious about some things. I noticed you said in another comment that you were treated with antipsychotics in the psych ward. Would you say they had any effect in lessening the symptoms? My intuition says no, since I'm not aware of any conventional antipsychotics that interact wit…

Prying is great. Ask away. > I noticed you said in another comment that you were treated with antipsychotics in the psych ward. Would you say they had any effect in lessening the symptoms? Your intuition is right. The antipsychotic was actually prescribed by a psychiatrist during my second hospital stay at Brigham and Women's and not at a psych ward. (I would later enter another psych ward where the psychiatrist ther…

Thanks for the detailed answers.

I can understand being hesitant about sharing the details of why you wanted the antipsychotics. It sounds like this is your first(hopefully last!) brush with psychotic/dissociative states of mind. Though I can't pretend to know what it was like for you, I can tell you I've been in similar situations. I've had several cases of acute psychosis caused by drugs(sometimes stimulants, sometimes synthetic cannabinoids) and/or sleep deprivation in the past. I also experimented heavily with all manner of psychedelic and hallucinogenic drugs in my early 20s, and I'm a severe hashish addict(currently 2.5 years in remission thanks to a moderation oriented treatment program I designed myself). It can be profoundly and existentially scary. You encounter parts of your psyche that you may never have met before, and reality breaks apart at the seams. You truly learn the extent to which your perceptions, thoughts, and even intentions are at the whims of implementation details in your brain. If you want, I could share some concrete anecdotes from my own experiences. But the main thing I want to say is give it time. These things must be processed, and it takes time, but it will get easier. And in time you will emerge with a better understanding of what it is to be human, and of yourself.

As to your comment on LSD, I support that. Sanity is taken for granted, until you temporarily lose it. If at some point you change your mind on exploring psychedelics, my advice would be to ditch LSD and go with psilocybin mushrooms instead, for a number of reasons.

Psychedelics very rarely cause actual psychosis, but LSD should have a higher risk than most, because unlike psilocin(the active compound in mushrooms, which psilocybin is converted into), LSD has non-trivial activity at dopamine receptors, and importantly the D2 receptors. LSD is in some sense the opposite to an antipsychotic in that it acts on the same receptors as antipsychotics, but with an opposite effect. Drugs that act as agonists on D2 receptors(usually Parkinsons meds) are well documented to cause psychosis in some people, as are stimulants like amphetamine which increase synaptic dopamine levels.

Psilocybin mushrooms are also pretty safe in that as long as you've identified the mushrooms correctly, you know what's in them. LSD on the other hand, more often than not is not actually the "original" LSD these days, but some LSD analogue. Usually it'll be something very similar in structure and effect to LSD, but it'll still be poorly studied compared to LSD. There are also drugs which are substantially different from LSD being sold on blotter paper as LSD, and some of these can be quite toxic(25i-nbome), extremely long lasting(DOB, DOM), or both(bromo-dragonfly).

Psilocybin is also free of course, since it's bound to be growing someplace near you in vast amounts, though the specific species depends on where you live.

And finally, it's much easier to take psilocybin in small doses. I always recommend people do this when trying psychedelics for the first time. Try a sub-threshold dose first, just enough to feel a little "weird". See how it feels, decide whether to do more next time, or stop, etc. It's possible to this with LSD, but it's much trickier, because LSD usually comes on this tiny little blotter paper. You can cut it up into smaller pieces, but there's no guarantee the drug is evenly distributed across the paper, and it's also impossible to be completely sure how much drug is on the blotter in the first place, unless you made them yourself. Mushrooms on the other hand are usually measured in grams; much easier.

But yeah, I'm not recommending you do psychedelics. Especially not any time soon, while you're still healing. It's always good to have a stable baseline before you go stirring the pot, so to speak.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#262

Thank you for writing this. As a fellow traveler on the autoimmune encephalitis (AE) journey, it’s rare to see this condition mentioned outside a specialist neurology setting. Three years ago, I was diagnosed with LGI1 autoimmune encephalitis (and yes, for those following along, AE comes in several varieties). While I never experienced the degree of psychiatric symptoms you unfortunately had to endure, I have a sense…

These are the best comments. Hearing from someone else with AE is really wonderful. I've heard from only a few. And I'm really happy to hear about your mostly smooth recovery. I hope it continues!

> it’s rare to see this condition mentioned outside a specialist neurology setting

I only realized this from the Wikipedia article on anti-NMDA receptor encephalitis, but it's apparently what the main character (Will) suffered from in the Hannibal TV show. I watched that show and loved it. I had no idea about the specific disease he suffered from. If you had asked me before this, I probably would have said that he had something like bipolar, like Carrie in the TV show Homeland.

> imagine your immune system spontaneously deciding to run an ablation test on the live neural network inside your skull

This is brilliant. I'm totally going to steal this.

> Today, life is mostly back to normal.

This is heartwarming. I feel almost "normal" now. There are some lingering issues, but there's improvement. I hope it continues.

> My first symptoms were brief “twitches” that appeared simultaneously in my left arm and face. I later learned they were seizures.

This made me remember that I had some twitching too. I had two EEGs, but AFAIK, no evidence of seizures was found. Thank you for this, because it reminded me to write this down as a question to ask my doctors at my next follow-up.

> Wishing you the very best, and I hope the CIELO trial delivers positive results for all of us.

I'm feeling even more excited about being in the trial after the response from everyone! Especially those with AE.

-----

If you don't mind me asking, how long was it between when you first noticed symptoms and when you got treatment? And what treatment did you get? (The same as me? IVIG and IV steroids?)

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#263

Thank you for writing this. As a fellow traveler on the autoimmune encephalitis (AE) journey, it’s rare to see this condition mentioned outside a specialist neurology setting. Three years ago, I was diagnosed with LGI1 autoimmune encephalitis (and yes, for those following along, AE comes in several varieties). While I never experienced the degree of psychiatric symptoms you unfortunately had to endure, I have a sense…

These are the best comments. Hearing from someone else with AE is really wonderful. I've heard from only a few. And I'm really happy to hear about your mostly smooth recovery. I hope it continues! > it’s rare to see this condition mentioned outside a specialist neurology setting I only realized this from the Wikipedia article on anti-NMDA receptor encephalitis, but it's apparently what the main character (Will) suffe…

I was extremely lucky and the gap between first physically detectable symptoms (faciobrachial dystonia (face), arm twitches) and initial treatment was only a week. My initial treatment was a hero dose of IV steroids (as you know to shut down the immune system) and plasmapheresis (filtering antibodies from my blood). I had a relapse ~5 months later, resulting in another (shorter) hospitalization where more steroids and IVIG came into the mix. I received Rituximab and IVIG infusions every six months for first two years. I was also on anti-seizure meds for most of this until cleared by an EEG. My infusion schedule is now being dictated by B-cell labs - they've been so low that I haven't needed any (yet). I've also been doing the periodic rounds with CT and other scans to make sure that if cancer is the cause of my AE, we can find it early and deal with it. Feel free to hit me up at my username at gmail if you'd like to talk further.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#264

Fascinating. As a young PCP, I wasn't familiar with the condition. For professional info on the disease: https://www.openevidence.com/ask/03586d88-9477-46f9-9089-9a7...

Thank you for that link! That was an interesting read.

My own PCP gave me a GAD diagnosis initially. I don't even know what he should have done to be honest, or to the extent that it colored evaluation from other doctors.

The time from when I first saw my PCP to when I saw a neurologist was about a month. Maybe if I saw a neurologist earlier it would have been "too early"? I have no idea.

My main quibble still remains with the ER who sent me to a psych unit without a neurologist seeing me. But I'm not a doctor and I don't know how to evaluate the reasonableness of it. It was very likely multi-factor. (And I was eager to get into an in-patient facility due to being so unstable at home.)

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#265

Earlier quoted context omitted.

Prying is great. Ask away. > I noticed you said in another comment that you were treated with antipsychotics in the psych ward. Would you say they had any effect in lessening the symptoms? Your intuition is right. The antipsychotic was actually prescribed by a psychiatrist during my second hospital stay at Brigham and Women's and not at a psych ward. (I would later enter another psych ward where the psychiatrist ther…

Thanks for the detailed answers. I can understand being hesitant about sharing the details of why you wanted the antipsychotics. It sounds like this is your first(hopefully last!) brush with psychotic/dissociative states of mind. Though I can't pretend to know what it was like for you, I can tell you I've been in similar situations. I've had several cases of acute psychosis caused by drugs(sometimes stimulants, somet…

Thanks for the thoughtful response. There isn't a world in which I touch psychedelics voluntarily. Like is it possible if I existed in a vacuum? Maybe. But I couldn't take that risk, no matter how small, and do that to my family.

Thankfully it was only ever a passing curiosity for me. A bucket list kind of thing. I am now very happy to replace with many other amazing experiences I hope to have. :-)

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#266
post #181

Very rare disease, expected to be misdiagnosed as psychiatric. I admit I would (neurologist here) But you were luckily treated by an excellent neurologic center. The lesson learned is that there are rare diseases (<1/10.000-100.000) but as they are so many, they form an important minority next to common ones (1/100-1000). Just don't forget them when data don't fit well. Such estimations is a hard dexterity of doctors…

I don't mean direct this specifically at you, but aren't there databases that can look up diseases by symptoms? Are doctors not trained to consult those, maybe after ruling out common causes? Why is forgetting relevant in this context? I'm asking because I've had frequent encounters with doctors whose process seems to be, literally, "remember if there's anything like the described symptoms that I learned in medical s…

Esp in mental health there is a large overlap of symptoms between diagnoses. So doctor's experience is needed to get the right diagnosis. No database and, hell, no AI assistance yet.

It all boils down on how deep a doctor goes diagnostically: for common diseases (1/100) an interview is enough, for rarer (1/1000) an MRI/blood test are needed and for very rare you need extensive and expensive genetic and immune exams. Because of cost, the 'art of diagnosis' is to be able to filter the cases that should be referred downward. Classic type I/II error due to binary misclassification happens all the time.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#267

Earlier quoted context omitted.

one of the really good things about these kinds of write ups and accounts of experiences and false leads is that I hope it feeds the LLMs with more context. For both me and my partner we've had problems with misdiagnosis that took a while to correct. My partner also suffered with auditory psychosis, and that was a super difficult (and bizarre) time. A little while ago I just started recording everything so I can use…

I recently discovered openevidence.com, and it's apparently what many doctors have started using for diagnosing patients (with or without their consent). It could be worth looking into for trying to find an explanation of symptoms that might not have a clear diagnosis. It may also just be the new WebMD once it gains more popularity (or even already), but may be another tool in your arsenal all the same.

Openevidence.com is not available in the EU, so I would actually be weary of recommending it. You either be exposing personal info, or getting a result you cannot guarantee it hasnt been tainted/canned to sell you something.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#268

Earlier quoted context omitted.

Not to be a capitalist about it, but given the US health care system, and the fact that there's a diagnostic test for it, that sounds like a business opportunity. Setup an intake website where the customer, err, patient, fills out their information, submits their insurance, and answers a questionnaire, and then the teledoc web portal system gives them lab work to do. Charge the patients for the privilege, and also ch…

> Not to be a capitalist about it, but given the US health care system Whats that supposed to mean? Most countries have private healthcare too. Sometimes it is as popular as public i.e. Australia 45% is private vs 55% in US.

It seems ghoulish to me to try to profit off someone's suffering, but I'm not in the industry and we all need to eat.

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#269
post #154

Earlier quoted context omitted.

The difference is mostly heart disease not "risky behavior". If anything the average software engineer is more likely to die of heart disease due to our sedentary lifestyles. Sitting on chairs is the real "risky behavior" in terms of health, although few people think of it that way.

I wasn’t aware of the degree of disparity in early-onset ischemic heart disease, thanks. But it doesn’t seem to me it’s "mostly heart disease rather than risky behavior", more like those are both major causes of excess mortality among young men.

As a related topic, sex ratios [1] are extremely interesting to look at, as well as consider the overall effects (and evolutionary history) of. Most people think the chances of a child being male or female is 50/50. It's not! A newborn is somewhere around 5-7% more likely to be male than female. In times past this would level out extremely rapidly to the point that by our thirties, the sex ratios was more women than men.

But in modern times it's persisting much longer such that in our twenties there are still about 6% more males than females. Consequently, and in terms of actual coupling, this now means that even if every single female was actively seeking a partner, about 6% of men would end up alone. Homosexuality and other features may change the ratios somewhat, but it's probably again a fairly reasonable ballpark.

[1] - https://ourworldindata.org/grapher/sex-ratio-by-age

Re: I was recently diagnosed with anti-NMDA receptor encephalitis

#270

Earlier quoted context omitted.

I just learned I have this as well (not as severe). Quercitin helped me. I am taking I think 1600mg (with bromelain) per day. How much was she taking, and what is the mast cell stabilizer that helped, if you don't mind my asking? I've been dealing with my symptoms for 17 years this year and Quercitin + Zyrtec + Pepcid is the first thing that's made a dent in it. I started a few weeks ago and it's been amazing but I'm…

I found H2 anti-histamines like Pepcid actually made my symptoms worse. I was in a similar situation where Claude finally helped me make a breakthrough. It seems that my issue is entirely related to histamine levels. * H1 (like Zyrtec) help block the body’s response to high histamines * H2 (like Pepcid) actually worsen my symptoms overtime because my body was readjusting baseline * Quercitin and DAO enzyme help massi…

Isn't histamine also related to Narcolepsy and some somnolence related diseases ?
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