Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

I was recently diagnosed with anti-NMDA receptor encephalitis

burntsushi.net

Post reply on HN
Print view View original

221–230 of 271 posts

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

#221

Post by arjie »

dnnddidiej wrote: post #206
arjie wrote: post #100

IMHO if you have a sufficiently empirical bent of mind, you are both more equipped and more invested in a good diagnosis and analysis of your own conditions. I have a personal EMR system that I run for the family and I get as much data as I need to tackle health issues. If you do, it is important to maintain epistemic hygiene: you need to correctly consider base rates, false diagnoses, and so on. If you are able to d…

What is an EMR system. Im experimenting with a repo of medical data about me and claude.

Just the industry term for what you’re building. Electronic Medical Records / Electronic Health Records. There’s some subtlety with what they’re doing that makes this more an EHR system (cross practice patient record rather than single practice patient record) but I’ve named it what I’ve done.

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

#223

Post by p00dles »

jr3592 wrote: post #19
bonsai_spool wrote: post #16

One thing that may be intriguing is that this is a relatively new diagnosis (first described in 2007). There's so much medicine to discover and we need to keep supporting a biomedical research enterprise that can find reversible treatments to disorders that would otherwise be difficult to treat (his symptoms, for example, would be thought of as a schizophrenia manifestation in another era) https://pmc.ncbi.nlm.nih.go…

Yes, the biomedical world needs to go through the same boom that tech went through in the last 20 years. The problem is accessibility. Tech grew largely because of how accessible the technology is. Biomedical research is still very difficult to get into, and as a result seriously curtails the potential progress we as a society could make. I don't know what the solution is but there's got to be an easier way to tinker…

A big reason is clinical trials. They take time, they are expensive, and there isn’t another good way to determine an intervention’s safety and effectiveness.

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

#224

Post by SkyPuncher »

AgentMasterRace wrote: post #62

My ex has mast cell activation syndrome. We would have to call for an ambulance 3-4 times a month because some days eating a grape could cause her to go into anaphylactic shock. She was allergic to whatever her body felt like at any given time. She was misdiagnosed/undiagnosed for 18 years. I was baffled by this, and I myself have spent numerous hours down the rabbit hole of nootropics, and had a DNA test and was res…

I was on a similar path, but way less severe. I’ve become intolerant to eggs and chicken (and a bunch of other stuff) for some completely unknown reason. Over the course of the past 5 years, my overall health got progressively worse and worse.

I tried all sorts of different things, but couldn’t nail down a pattern for years. Even worse, some days I could tolerate something and others it would blow me up. It wasn’t until I started telling Claude literally everything I consumed and how I felt that it dialed into histamine response triggering mast cell activation.

I started to realize that a lot of “low histamine” foods either build up histamines as they age (so leftovers kill me) and some “low histamine” foods actually cause the body to naturally liberate histamine (essentially mimicking high histamine foods).

It’s extremely hard to get a diagnosis because the triggers are seemingly random and don’t always correlate with common buckets.

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

#225

Post by SkyPuncher »

elliotbnvl wrote: post #99
AgentMasterRace wrote: post #62

My ex has mast cell activation syndrome. We would have to call for an ambulance 3-4 times a month because some days eating a grape could cause her to go into anaphylactic shock. She was allergic to whatever her body felt like at any given time. She was misdiagnosed/undiagnosed for 18 years. I was baffled by this, and I myself have spent numerous hours down the rabbit hole of nootropics, and had a DNA test and was res…

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 massively.

Also being extremely mindful of histamine levels in food helps keep my baselines low. This can be tricky because histamines collect as food ages (so two batches of something can lead to different responses) and some “low histamine” foods can still trigger your body to dump histamines (so they actually act like high histamine foods).

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

#226

Post by sevenseacat »

freediddy wrote: post #46

The first thing I would do with any sort of weird issue remotely associated with my brain is to get an MRI. I would pay for it out of pocket if my doctor denied it or said it was psychiatric. Trust no doctor 100%, especially when they dismiss your symptoms as hormonal or psychiatric or anything else that doesn't go through a thorough examination with all available technology. This is where AI like ChatGPT shine becau…

I went to see an eye specialist recently for vision problems, and that was the first thing she did - sent me for an MRI of my brain. First time in a wub-wub-wub machine, that was an experience!

(It took two months for my MRI appointment, but hey at least it was free, thanks Australia?)

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

#227

Post by SkyPuncher »

Gooblebrai wrote: post #124
AgentMasterRace wrote: post #62

My ex has mast cell activation syndrome. We would have to call for an ambulance 3-4 times a month because some days eating a grape could cause her to go into anaphylactic shock. She was allergic to whatever her body felt like at any given time. She was misdiagnosed/undiagnosed for 18 years. I was baffled by this, and I myself have spent numerous hours down the rabbit hole of nootropics, and had a DNA test and was res…

Can you tell more technical details on how did you approach the research?

If I can get Claude to thing about the actual science and bio-chemistry, it can reasonably be through things extremely well.

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

#228

Post by [deleted] »

AgentMasterRace wrote: post #62

My ex has mast cell activation syndrome. We would have to call for an ambulance 3-4 times a month because some days eating a grape could cause her to go into anaphylactic shock. She was allergic to whatever her body felt like at any given time. She was misdiagnosed/undiagnosed for 18 years. I was baffled by this, and I myself have spent numerous hours down the rabbit hole of nootropics, and had a DNA test and was res…

[deleted]

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

#229

Post by sneak »

BrannonKing wrote: post #210

The thing with all these autoimmune diseases: they have the same foundational problem. Their is something in the blood that doesn’t belong there and it resembles some part/cell of our body. Our body builds white blood cells to destroy this thing and inadvertently destroys part of the body. The important questions: what is it and how is it getting into the blood? The most likely way it gets into the blood is through t…

It’s fortunate that you can’t properly spell basic medical terms so that nobody will mistake this for professional advice from a knowledgeable source.

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

#230

Post by [deleted] »

jr3592 wrote: post #19
bonsai_spool wrote: post #16

One thing that may be intriguing is that this is a relatively new diagnosis (first described in 2007). There's so much medicine to discover and we need to keep supporting a biomedical research enterprise that can find reversible treatments to disorders that would otherwise be difficult to treat (his symptoms, for example, would be thought of as a schizophrenia manifestation in another era) https://pmc.ncbi.nlm.nih.go…

Yes, the biomedical world needs to go through the same boom that tech went through in the last 20 years. The problem is accessibility. Tech grew largely because of how accessible the technology is. Biomedical research is still very difficult to get into, and as a result seriously curtails the potential progress we as a society could make. I don't know what the solution is but there's got to be an easier way to tinker…

[deleted]
Post reply on HN