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 researching myself and how things work and how supplements affect your body and such for sometimes 12 hours a day. (Chronically unemployed, chronically ill.)
We got her a DNA test and I went to work researching everything and comparing the possibilities to her symptoms, we tried countless different supplements that could help... And eventually one did, it wasn't a cure but it was a relief she had never felt before. That was Quercetin, which is a mast cell stabilizer. It took about 2 years of research and trial and error to find some relief. We took our findings to the doctor and finally got a referral to an internal medicinist who promptly after hearing the symptoms and what has helped diagnosed her and she was out on a proper mast cell stabilizer. She went from being in bed 20 hours a day to being able to fully enjoy life. (Sadly, without me though!)
elliotbnvl 16 minutes ago [-]
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 not experiencing full relief yet.
This was the combo Claude recommended I start with for a trial, one message after I told it my symptoms. No doctor has ever been able to help.
ipaddr 10 minutes ago [-]
Why did you breakup after everything?
14 minutes ago [-]
netsharc 13 minutes ago [-]
At the risk of sounding like a cryptobro ("What about using a blockchain?"), did you ever try testing LLMs to see if they'd be able to diagnose it correctly? (I'm guessing you did the research before LLMs)
jujube69 1 hours ago [-]
What's was her daily Quercetin dose? Trying to compare notes.
24 minutes ago [-]
cgh 3 hours ago [-]
My wife has a cardiac autoimmune disease that was similarly misdiagnosed (including an appalling “it’s all in your head” from her family MD at the time). We underwent a year of immense stress. Just days before her probable death, she had a pacemaker and defibrillator installed, which saved her life.
I’m not entirely sure why I’m mentioning this, other than I sympathize deeply with your wife. What an absolute ordeal.
code_duck 3 hours ago [-]
I had a much more common autoimmune disease, adult-onset Type 1 Diabetes (LADA), determined to be health anxiety by a very large, major renowned hospital who should have known better. It led to over a year of continued illness before finally I was diagnosed at an ER. I'm sure some people have psychosomatic or anxiety based illnesses, but it's rather grating to be told by a psychologist that you're worrying yourself to death when you are very, very sure that's not the issue.
OkayPhysicist 3 hours ago [-]
How did it take a year to diagnose diabetes? Are there symptoms of Type 1 that aren't downstream of blood sugar? I, some chucklefuck with some first aid experience, can figure out if someone is hypo/hyperglycemic by smell.
code_duck 2 hours ago [-]
LADA comes on slowly compared to regular juvenile onset type 1. With regular T1, you'll be in diabetic ketoacidosis and hospitalized within 3 months. LADA can take a year or two, sometimes even longer. I had Celiac diagnosed a year prior, and many of the symptoms seemed the same - fatigue after meals, heartburn, other digestive issues - and that confused things. Plus I had terrible medical care for the first 6 months while I was losing weight and wondering what was happening.
forlorn_mammoth 3 hours ago [-]
Adult onset. It can come on slowly (as in over the course of a year). And many downstream symptoms include mood changes. Hard to know it is blood sugar related if you don't test blood sugar levels.
Really glad you can smell it on people, smell is a powerful diagnostic tool that few people are trained on.
Scoundreller 2 hours ago [-]
That’s the bit I don’t get: isn’t glucose testing by the health care system fairly common with any sort of “I don’t know what’s going on, let’s order some labs and see what comes back” screening/testing panel?
code_duck 2 hours ago [-]
I was told I had 'prediabetes' and actually got my own glucose testing kit. It didn't seem far off at that time, though, possibly because I was having such a difficult time eating anything. I didn't really know what to look for, though. Glucose being above 100 when I woke up? Over 180 a couple hours after eating? I tested a lot but didn't have any doctor support or interpretation.
At the hospital, I saw a gastroenterologist who specialized in Celiac, because I had just been diagnosed with Celiac a year earlier and many of my symptoms seemed related to digestion. He absolutely should have done diabetes tests. On the last day of the 2 weeks I was there, he said "It could be type 1 diabetes... some people get that too" but didn't order any tests. When I was diagnosed at the ER another year later, my glucose was 650 (very high) and had been averaging 300 (it should be ~85). So yeah, the doctors were negligent, in my assessment.
zdragnar 2 hours ago [-]
OP mentioned being told he was just worrying by a psychiatrist. They're used to seeing all sorts of psychosomatic issues caused by stress and anxiety. The old 'think horses not zebras' puts blinders on, especially when there's also claims that the US health system over-tests for things.
code_duck 2 hours ago [-]
I told my gastro that I was on a very restricted diet. I had lost a ton of weight from not being able to swallow food and though it was related to Celiac or food allergies, and they really didn't listen to what I was saying. The psychologist told me that I was "so worried about gluten that I was starving myself", which was quite offensive, actually. I had been in phsyical pain every day for months and went from 180 lbs to 120 (at 5'10") until I found a liquid diet that worked for me and regained weight. I had no idea carbohydrates were an issue.
anakaine 2 hours ago [-]
It is such a standard panel its not funny. That said, a psychologist is not an MD and cannot order labs, typically.
code_duck 1 hours ago [-]
It's common to get a spot/random glucose test as part of a metabolic panel, but not that common to get an A1C or certainly auto-antibody tests, in my experience.
gedy 2 hours ago [-]
I honestly hate the US medical system for this. Basically you get scolded for not being proactive and ignoring symptoms, but if you are proactive and even slightly worried about something they treat you like a hypochondriac.
sheepolog 3 hours ago [-]
It's been super eye-opening to me as an adult how frequent misdiagnoses are. I understand it's good for a doctor to sound confident, but "confidently wrong" is imo much worse than "cautiously wrong". We really need better imaging/diagnostic tools that cut down on human bias; hoping for a star trek tricorder someday.
Aurornis 3 hours ago [-]
> It's been super eye-opening to me as an adult how frequent misdiagnoses are.
I was talking to a specialist in a field where a rare condition has started to trend on TikTok. It was also eye-opening to learn how much they're struggling under the weight of bad referrals for patients who don't have the condition they claim.
That's not to say they aren't sick. The patients are suffering from something. However between hours of TikTok and ChatGPT they can convince themselves they have a condition and learn how to convince their primary care doctor to put in the referral
This doesn't work as much for conditions that have objective criteria like blood tests, where it's easy to filter out the patients who have both negative blood tests and a PCP who hasn't tried to investigate other explanations.
An example of a popular self-diagnosis is MCAS: Mast Cell Activation Syndrome. MCAS specialists are overwhelmed by self-diagnosed patients trying to get appointments who have never even have a tryptase blood test. If you go on to any subreddit or forum for chronic health conditions you will find a large number of people there have been convinced they have MCAS, and new members are told they might have MCAS too.
This is creating a separate fatigue among providers who need to keep their guard up at all times so they can maintain focus on the patients who really have these conditions instead of letting their schedules get destroyed by patients who don't. It's a hard problem.
fragmede 2 hours ago [-]
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 charge the doctors to use this screening process.
Aurornis 1 hours ago [-]
> and also charge the doctors to use this screening process.
Why would a doctor pay another service to order labs for them?
Sadly there are a lot of clinics popping up to serve the internet self-diagnosers, but not in the way you're talking about. They're built around a single enterprising doctor who either believes the disease is undetectable by normal tests, or who is aware that they're stringing patients along but likes the money. If someone opens a specialty clinic for an internet-popular disorder, they have a perpetual line of patients who will gladly pay for a doctor to tell them what they want to hear.
s5300 13 minutes ago [-]
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amatecha 3 hours ago [-]
Yeah, I've had to fight to get medication that the doc insisted "doesn't work" - had to cite actual studies that showed blatant results showing effectiveness. The way society has this widespread "appeal to authority" built in around doctors drives me crazy, because they are treated as if they are the ultimate authority on health/medical, but are often woefully under-educated about specific subtle details that can end up being critical to the management/prognosis of a health issue.
I have a worsened lifelong issue because of repeated sub-optimal "solutions" to a problem, such that the best long-term solution was found by the THIRD doctor that looked at my problem. "Solutions" from the first two guaranteed my problem will forever be worse than it would have been (solely due to their treatments), if only the third doc's solution had been considered/presented first. Even worse, I was a teenager and young adult when dealing with the first two. My mistake for not doing my own comprehensive research, apparently -- the thing we entrust doctors to do for us...
WarmWash 3 hours ago [-]
The part that doctors see that individuals don't is the flood of people who are chronically freaking out over nothing.
There are going to be casualties of doctor's triage, and those stories will be beyond upsetting, but most would agree its better than an 8 month wait to get an MRI.
TaupeRanger 21 minutes ago [-]
Right. For every example of a doctor missing a diagnosis, there 100 examples of that doctor correctly telling people that they are likely suffering from a temporary condition that will work itself out or not be resolved by any further testing or medicine.
s5300 10 minutes ago [-]
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3 hours ago [-]
switchbak 3 hours ago [-]
I've heard so many stories, and have had so much recent close experience of those stories not ending on a high note. It's nice to hear that Burnt Sushi's and your wife's experience do sometimes end in a very positive way.
burntsushi 3 hours ago [-]
Ooof, really sorry to hear that. I'm glad she ultimately got the treatment she needed.
In my case, the misdiagnosis up front was entirely reasonable. (EDIT: Well, maybe not. See below.) The generalized anxiety disorder diagnosis from my PCP made a lot of sense given what was happening. I hadn't had delusions yet at that point. It was... a mixture of panic attacks, night sweats, jaw pain and a greatly increased level of anxiety compared to my baseline.
My PCP did run a bevy of tests (chest x-ray, and took tons of blood) to try and rule out anything biological.
Given what was known at the time, I think my PCP did the right thing. And when my symptoms really escalated (delusions, suicidal ideation, falling and hitting my head), my PCP suggested going to an ER. And that's what we did.
I think it was the ER that really dropped the ball. Given the sudden onset of everything, the fact that they didn't get me in front of a neurologist is, in retrospect, really quite baffling. That's when I went to a psychiatric hospital, where I spent 3 nights.
I only got out of that hospital due to total luck. My neighbor was old college buddies with a neurosurgeon. (We had no idea about it. It just came up randomly when my neighbor was dropping my son off at home for us.) That was the critical connection because he ended up talking to the neurology department at Brigham and Women's, then talked to the psychiatric hospital and was the one who facilitated my transfer.
My wife tried to do it on her own but they wouldn't allow it because I had been medically cleared. She had to give 3 days notice to pull me out. Or otherwise, by default, I would see a neurologist after 2 weeks. According to the psychiatric facility.
I really don't know if I would have made it that long. The encephalitis wouldn't have killed me in that span of time, but I was in an extremely dark place.
I'm also really lucky that this is an autoimmune disorder that has a pretty objective diagnostic criteria: a positive antibody test in your cerebral spinal fluid. You "just: need to have your spine tapped to get that though. Fun times.
epcoa 2 hours ago [-]
Absolutely not to defend what happened but that GAD diagnosis sets in motion the anchoring, because now you have an “established” (and recent) psychiatric diagnosis and it’s all too common that an ED is going to heavily prioritize this as a progression. EDs are just very bad in general about reconsidering a differential for a (new) chronic condition unless it’s flashing like a neon sign, especially when there is an easy enough dispo to reach for, transfer to psych in this case. But even worse, you already had an extensive outpatient workup to hang their hat on. From the history provided the history of a fall is the only thing mentioned that sounded like a slam dunk brewing neurological deficit, and it is not very specific, half the ED are people that fell. I’m sure you’ve read the MDM portion of the ED note, it may or may not give some idea of why neurological conditions were dismissed.
Very unfortunate.
burntsushi 57 minutes ago [-]
That is an interesting take that I hadn't thought of. Thank you for that perspective.
I actually haven't been able to get the ED notes from that first ER visit yet. They are in a different system than Brigham and Women's, which made it super easy to read notes in their app.
3 hours ago [-]
bonsai_spool 3 hours ago [-]
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)
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, test, explore, and play around with biomedical things (cells, viruses, etc.).
Ideally it would be a purely software world where we replicate everything down to the DNA level so that you can test and play around with potential solutions...
bonsai_spool 3 hours ago [-]
> Yes, the biomedical world needs to go through the same boom that tech went through in the last 20 years.
Why do you think that isn’t happening? So many comments here make broad claims about fields where the poster isn’t familiar. Being a programmer does not make one knowledgeable about other specialized fields
giantg2 3 hours ago [-]
"the biomedical world needs to go through the same boom that tech went through in the last 20 years."
Not going to happen with all the regulation. Plus, I think half of us techies got into it for games and boobs (bypass parental controls). Not a lot of that same adolescent motivation in that field.
fragmede 2 hours ago [-]
Yeah, but the culture surrounding computers now isn't the same as when whenever you grew up. The last few decades of tech didn't have ChatGPT to contend with. These days, going into medicine looks a lot more future proof than getting a CS degree.
fragmede 2 hours ago [-]
Man's best friend is the best friend to experiment on (instead of humans). Working mRNA cancer vaccine.
What's happened in software / computing in the last 20 years that's good? Imo it could be argued that overall the user experience has gotten worse. Dead internet theory, enshittification.
* The web is pretty much dead. Time Berners Lee's ideals certainly are.
* Computing is dominated by completely evil megacorps.
* They are making a concerted effort to make people as tech-illiterate as possible and also make universal computing illegal.
* Theres been years where GPU's were being price gouged, 1st by crypto bros, then NFT bros, now LLM bros.
* Cant even buy RAM now.
* They put e-fuses into hardware now, comes right out of the factory as ready made e-waste that cant be repurposed.
* The biggest platforms, Android and iOS, are walled garden, locked down, corporate nightmare worlds. And there is practically no alternative.
* Social media is making people depressed and also very easy to manipulate en-masse by anyone willing to pay.
* Moore's law stopped and software bloat overtook performance gains.
* VR might have been cool but it was pre-enshittified in its nascent stages. Freakin' facebook bought Oculus before they had released a single headset.
jakobnissen 5 hours ago [-]
This sounds horrifying. It’s one of those stories that makes me think in just how many ways our bodies or minds can break or malfunction in terrifying ways. Any one of us could, right now, carry a lethal tumor that hasn’t been discovered.
Best of luck to you, and get well. I’m glad it didn’t get even worse before it was treated.
everyone 26 minutes ago [-]
When you look at how molecules like RNA work, and krebs cycle, and the billions of cells we are composed of, and so on, it always strikes me as astronomically lucky that we function at all. Like how can this assemblage of Rube Goldberg machines function for more than 1 seconds without catastrophically falling apart?
I think multicellular creatures on earth are just so complex they are basically ineffable.. We can understand certain general principles and statistical trends, but the entire system holistically is incomprehensible for a human level intelligence.
Kind of analogous to ML, we absolutely understand how each neuron works, we built them! But we often dont really understand how the resulting model works.
somenameforme 3 hours ago [-]
CDC mortality tables [1] are kind of eye opening for those who don't realize how brief life is. Average age range on HN is probably in the 25-44 year old bracket. That bracket has an approximate mortality rate of 140/100k per year. HN has what, 5 million or so monthly users? So that means of all of 'us', it's expected that around 7,000 HN readers age 25-44, die each year. That's fairly close to 1 death per hour.
Your CDC figure is an average over all genders. Assuming hacker news readers are disproportionately men, the mortality rate is even higher, since men die younger than women on average.
Sharlin 1 hours ago [-]
On the other hand, my guess is that male HN readers are not a very representative sample in this respect. That is, they (we) are significantly less likely than average to engage in the type of risky behaviors that mostly explain the gender disparity.
tliltocatl 44 minutes ago [-]
A lot of gender disparity is cardiovascular disease being 50% more likely to be diagnosed in men than in women of same age, so not directly related to risky behavior.
3 hours ago [-]
tuvix 2 hours ago [-]
Wow I need to stop browsing HN
BigTTYGothGF 43 minutes ago [-]
> HN has what, 5 million or so monthly users?
This seems remarkably high.
logicchains 3 hours ago [-]
>it's expected that around 7,000 HN readers age 25-44, die each year
That's not true unless HN readers are a representative sample of the overall 25-44 population, which they aren't. Higher-income/SES is associated with a lower mortality rate than the overall population average.
coldtea 58 minutes ago [-]
>That's not true unless HN readers are a representative sample of the overall 25-44 population, which they aren't. Higher-income/SES is associated with a lower mortality rate than the overall population average.
7K/year is for the healthy, affluent, tech-worker-heavy population already. For the general population, US, is ~ 12K/year.
Not that higher-income/SES is necessarily representative in a supposed 5m strong HN readership - it would be all kinds, from all around the world. SV startup / FAANG types are just a small slice.
somenameforme 3 hours ago [-]
These sort of factors all have a relatively small impact. For instance, to take it to the ridiculous extreme, billionaires live about 10 years longer than average. That sounds like a lot, but it's "only" about 10-15%. So instead of the conclusion being ~7000 dying each year, it might "only" be 6000 or whatever. It's largely inconsequential to the point. And as another point mentioned we're going to skew male which brings our life expectancy significantly lower, and probably goes a long way towards balancing out whatever socioeconomic advantage that may exist.
Whatever the exact number may be 7000 is going to be a pretty reasonable ballpark, and it's certainly orders of magnitude higher than most people would expect.
tsoukase 28 minutes ago [-]
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 that cannot be rivalled by AI.
abstractbill 40 minutes ago [-]
It's nice to see peoples' success stories with diagnoses. I've been suffering from something for more than 20 years now. I was healthy until 2005. Then it seemed like I got sick with some kind of virus and just... never got better. I have unpredictable good stretches and bad stretches. During my bad stretches I can't get out of bed. I've mostly given up on the idea of a diagnosis myself, after seeing dozens of doctors over the years, with the most positive interactions being Stanford researchers telling me I'm a really "interesting" case.
ChrisMarshallNY 37 minutes ago [-]
I've seen that happen with Lyme Disease, and with Mono. Autoimmune disorders are notoriously difficult to diagnose.
In the 1980s, AIDS was like that. All these healthy, young people, just started getting these diverse horrorshow problems, then died.
gwerbret 2 hours ago [-]
NMDA receptor encephalitis is usually associated with a particular ovarian tumor, so the first thing I did on seeing this article was to check if the author is male or female (he's male). It is the habit of certain cancers to present with bizarre symptoms (so-called paraneoplastic syndromes) including psychosis as in this case, and often it can be months before someone thinks to look for cancer. I'm glad the author's okay.
burntsushi 54 minutes ago [-]
Yes! No tumor. I've had a PET scan and a testicular ultrasound. I think that puts me in the idiopathic category for this particular case.
sscaryterry 6 hours ago [-]
Best of luck mate. Most of us take our health for granted.
burntsushi 6 hours ago [-]
Thank you. <3
It's been a trip. The worst thing that has happened, but also the best. It has definitely given me a new perspective on life, that's for sure.
My favorite side effect is that I now love all foods. Prior to this, I was a rather picky eater. Now I love everything!
philipportner 4 hours ago [-]
> My favorite side effect is that I now love all foods. Prior to this, I was a rather picky eater. Now I love everything!
I feel like there's a burntsushi joke hiding in there somewhere.
All the best Andrew.
burntsushi 4 hours ago [-]
There is actually haha. I've always hated sushi. And sushi is now on my shortlist to try again. I can't wait.
(My handle comes from graffiti I found on the booth of a hot dog stand in Worcester MA called Coney Island[1]. I thought it was a cute oxymoron and adopted it on a silly whim. I only later learned that some sushi is indeed cooked.)
Man, the origin of your screen name is the same level of lore as Rust being named after fungi, and not corrosion. Love it! Glad you're in better health again. Been using your software for nearly 10 years spanning before and after my career started. Thanks for all the work you do in open source.
Cheers
dbt00 3 hours ago [-]
I've had some experience with situations like what you experienced in my family, and I just want to say how glad I am to hear that you had people in your corner to help you out when you needed it the most.
rustyhancock 1 hours ago [-]
That maybe the steroids I'd imagine!
jszymborski 5 hours ago [-]
I can't begin to imagine the pain and stress caused by those symptoms, but I am so very happy to hear the prognosis is quite good. A linked scientific article makes the case that this is a very new diagnosis, and increased awareness might help a lot of people, so if you are reading this burntsushi, thanks for being open about something deeply personal, I hope I would have had the courage to do so myself.
burntsushi 4 hours ago [-]
Thank you. <3
There were lots of reasons that went into me posting this.
First and foremost is that this is a disease of chaos that is prone to misdiagnosis. I want to shout this from the roof tops to spread awareness. I don't have a ton of reach, but I have some, and I want to use it to amplify things like this.
Second is that I'm somewhat naturally open about these sorts of things.
Third is I feel a responsibility to my projects and users.
Fourthly is that it's just practically useful to have a link to send to someone when I reference this time period in my life. :-)
> very new diagnosis
Yes! Discovered in 2007. Wild.
> so if you are reading this burntsushi, thanks for being open about something deeply personal, I hope I would have had the courage to do so myself.
<3 <3 <3
mcspiff 2 hours ago [-]
> Third is I feel a responsibility to my projects and users.
I feel like this should be a bit of a two way street. Is there anything we can be doing for you?
I see there's an option for GitHub sponsorship, would that still be your preference?
burntsushi 2 hours ago [-]
Honestly I think just a heap of patience while I catch up with a couple months of doing essentially zero work. That would be the best.
greenimpala 1 hours ago [-]
My wife had anti-NMDA negative Encephalitis two years ago after suffering severe seizures out of the blue - her diagnosis in retrospect is NORSE (new onset refractory status epilepticus). She was put into an induced coma for 2 months, it took a long time before they realised it was encephalitis. Whilst she survived, her recovery is still ongoing. She was 32 when it happened and will never work again due to her brain injury and ongoing epilepsy.
burntsushi 31 minutes ago [-]
Oh my, I'm so sorry to hear that. She'll be in my thoughts.
billjive 1 hours ago [-]
Sorry to hear this, thank you for publishing your account.
Also, thank you for participating in the clinical trial. I pivoted my tech career several years ago to focus on that industry (the tech isn't great, I'm trying to help that). Along the way I've learned how important it is to participate in this research, it makes a massive difference so thank you.
burntsushi 56 minutes ago [-]
Wow, nfldb. Old school. Good times. I had so much fun with that project and the community of users.
billjive 4 minutes ago [-]
Yeah, almost pivoted to fantasy sports! Clinical trials are more interesting :)
quux0r 1 hours ago [-]
Andrew is truly such an inspiration. For him to have been still delivering for the open source community during all this really goes to show that you never know what someone else is dealing with.
freediddy 2 hours ago [-]
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 because they won't just dismiss you.
tsol 2 hours ago [-]
Not sure why this was down voted but there's truth to this.
I quit an SNRI antidepressant twelve years ago and for ten years I had horrible migraines, inability to form sentences, constant anxiety, low motivation, and other symptoms. Doctors just diagnosed it as depression and me having problems.
I knew something was wrong and I suspected it had to do with withdrawal from my old antidepressant. I read online and found others saying something similar. Gemini was able to help me confirm with and provide resources from specialists about this because the average psychiatrist knows nothing about this.
Finally I had a name for my issue-- protracted SNRI withdrawal syndrome. Trying to get off the medication too quick put me into some kind of continuous withdrawal. After confirming this I got back on the old medication and slowly reduced the dose this time.. I feel better than I have in 10 years.
Doctors still don't understand it and sometimes when I mention it to one(I have a few in my family)they just say "that's not supposed to happen". Never put your health solely in another person's hands. Utilize every resource available to you, even the most educated doctor in the world cannot know all there is to know about their field
jongjong 55 minutes ago [-]
The human body is an incredibly complex machine. The doctor may be an expert with particular conditions, but at the end of the day, you are the #1 world-leading expert when it comes to your own body. You're the only one who knows what's normal and what's abnormal and to what extent.
arjie 15 minutes ago [-]
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 do these things, it's worthwhile to record everything you want: full body MRIs, CT scans of the head, all your X-rays, your blood records and so on. Other countries are easier to get these in, but even in the US a full body MRI is under $2k, Ulta will test your blood for you, and so on. You can't get most medication here easily because it is prescription-gated[0], but many things are available in India (where I'm from).
Neurological conditions are a pretty big risk, because self-analysis is using degraded machinery at that point, though. Admittedly, a hole in the way I handle things. This is another one of those situations where it is valuable to have a wife.
0: Almost all self-analysis encounters the problem that a third-party to the interaction is the one usually paying, and so most players cater to that
fleshmonad 3 hours ago [-]
Glad he had connections to get out of the psychiatric institution. Thinking of all the unfortunate people without the means being incarcerated there with their misdiagnosis, getting put down with antipsychotics
burntsushi 2 hours ago [-]
I'm very lucky to have had that connection. I didn't even know I had it until it was there. So I'm lucky on another level there too.
I was put on a low dose of an anti-psychotic. I am in fact still on it. We just haven't gotten to tapering off of it yet. (Other medications have taken higher priority.) Tapering off all of my medications, which is the goal, will take quite some time.
In the moment, I very much welcomed the anti-psychotic. I would do anything to fix what was wrong with me. The problem is that the front-line treatment for anti-NMDA receptor encephalitis (IVIG and steroids) takes a minute to kick in. Moreover, you don't have the diagnosis until later. There was a point in time, before the positive CSF antibody test but after the abnormal MRIs, where multiple sclerosis was a possible diagnosis.
In any case, once I got out of the psychiatric hospital and into Brigham and Women's, an MRI is indeed what I had right away. And that's when the brain lesion was found. But! Not all cases of anti-NMDA receptor encephalitis have an abnormal MRI. Susannah Cahalan, for example, had two normal MRIs. Brain inflammation was only detected indirectly at first because of the "clock test"[1]. And they later did a biopsy on her brain to confirm.
In retrospect, yes. I think I could have done a better job of advocating for myself on my first ER visit and demanded to see a neurologist. But I didn't know what I didn't know, unfortunately.
Intriguing... "After months of misdiagnoses Dr Souhel Najjar, employs a test asking Susannah to draw a clock. Instead of the customary clock face, her condition led her to draw all the numbers 1 through 12 on the right side of the clock. This was the breakthrough moment; it was this clock drawing that enabled Dr Najjar to understand that the right side of Susannah’s brain was inflamed, further test revealed this inflammation was a result of anti-NMDA receptor encephalitis, initiating her path to recovery"
ZpJuUuNaQ5 2 hours ago [-]
>It all started with flu-like symptoms: heart racing, night sweats, the chills and trouble sleeping. But no congestion or cough. I also felt really off mentally. A deep sort of anxiety, along with panic attacks, that I had never experienced before in my 38 years of life. It was terrifying, especially because I had no idea what was causing it. There were no life events or obvious triggers that precipitated the psychological symptoms, nor was there any obvious biological explanation for the physical symptoms at the time. This was only the beginning.
Interesting, I had similar symptoms 5 years ago, including trouble swallowing which in itself induced a sort of panic. Also, I have experienced 6 "attacks" (not sure whether a panic attack is the right name) in two days, that felt like all my limbs were numb (with that tingling feeling you get when you keep your limb in an awkward position for too long) and tightly wrapped in duct tape, accompanied by rapid breathing, fast heart rate and dizzy vision. I wasn't diagnosed with anything specific and it went away on its own, but later the same year I started feeling occasional heart flutters as if my heart was going to jump out of my chest. Got tested and was diagnosed with a 2nd degree AV block. To this day, I have no idea what caused this and whether the two events were even related. Life can slap any one of us in the face in countless ways. Creatively vicious.
Glad your prognosis is quite good. Wishing you a fast and full recovery.
burntsushi 51 minutes ago [-]
Thank you for the kind words.
Trouble swallowing, jaw pain, dizziness, double vision (and more) were all things I experienced as well. At one point, my left eye was dropping significantly.
Not to say you had or have what I have. The symptoms are very non-specific.
archonis 28 minutes ago [-]
Really glad you finally got a correct diagnosis, and thank you for the tools/utilities you've contributed.
My early rust skills benefitted significantly from having read your code!
Good luck and good health.
glerk 38 minutes ago [-]
I am glad you were able to find the root cause and get treatment, and sorry you had to go through this. I hope we will soon remove “psychiatry” from the domain of medicine completely and start addressing actual biological issues directly.
Munksgaard 3 hours ago [-]
> [...] Since I had been cleared physically, getting out of the psychiatric hospital quickly to see a neurologist proved difficult. This was the single point, in retrospect, where our health care system let me down. It took a lucky connection with someone who happened to be a doctor to get me out of the psychiatric facility and into the neurology department at Brigham and Women’s Hospital in Boston.
That sounds scary. As someone without any experience with psychiatric institutions or the US health system, I'm curious what people's views are on this.
memco 2 hours ago [-]
Won't weigh in on psychiatric care, but I will say from experience that everyone should look into both an advanced healthcare directive and an advanced psychiatric care directive: these are documents that authorize someone else to have input into your care if you are unable to do so yourself. Psychiatric care is considered separately so even though a medical health directive was in place we were stuck and could not have input into care even though we tried. Set this up before needed because in an emergency it may be too late and care providers are limited in what they can say and what they will do without that.
Consult a lawyer. Participating locations only. etc. etc.
burntsushi 45 minutes ago [-]
We did at least have a health care proxy and a power of attorney in hand.
Funny story (that I didn't include in the blog) is that I actually wound up in a psychiatric facility for a second time after I was in-and-out of Brigham and Women's on 3 separate occasions. I was in a much better state mentally and physically, and this particular facility (McLean Hospital) was way better than the first one I was in. The circumstances were different and I was happy to be there because things were still very rocky at home. And very dark. So my wife and I felt it better that I be in an in-patient facility at this point, which came right before my official anti-NMDA receptor encephalitis diagnosis.
Anyway, the funny story is that I showed up to McLean, after being transferred from Brigham and Women's, with a physical copy of my wife's PoA over me and a health care proxy. The charge nurse said it was the first time he had ever seen anything like that before.
riquito 2 hours ago [-]
I whis you the best, you teached me a lot with your blog posts and code, and your software had an impact in how I use computers. You are probably the only developer alongside Torvalds that my wife knows by name (well, nickname) since whenever you do something cool I feel the urge to share my excitement with her
miguelxpn 3 hours ago [-]
I'm glad you got diagnosed and the treatment is working. Sending you virtual hugs!
simianwords 35 minutes ago [-]
I read his comment on how his wife was supportive and now gives me perspective on what a partner does and what one can expect from them. I’m not able to articulate it but it’s nice to see such a profound support.
sherr 5 hours ago [-]
Thanks for writing this. Perhaps a part of your therapy at the end. Also, a way to understand and recover. I hope all goes well for you!
vatsachak 4 hours ago [-]
I'm using both csv and aho-corasick on my project!
I wish you the best and I'm sure us Rustaceans are happy to help with anything
3 hours ago [-]
3 hours ago [-]
tosh 4 hours ago [-]
ty for this writeup Andrew, all the best to you
30 minutes ago [-]
jcgrillo 32 minutes ago [-]
Glad you're getting excellent care and on the mend. Your work is an inspiration, wishing you all the best.
loeg 2 hours ago [-]
I'm sorry to hear it, and glad you seem to be on the mend with a positive prognosis.
zengid 3 hours ago [-]
Wishing you a full and fast recovery!
natas 2 hours ago [-]
I wish you a fast and full recovery.
anon291 2 hours ago [-]
A bit off-topic, but I feel like humanized monoclonal antibody treatments are so under-appreciated today despite showing efficacy against a broad class of diseases, infectious, auto-immune, and even some cancers. Absolutely amazing class of drugs IMO.
burntsushi 35 minutes ago [-]
Yes! As I understand it, each dose I received (I got 3 of them) came from ~1,000 different donors. It was more expensive than my room and board at the hospital, and my room and board was not cheap.
Thank goodness for health insurance. (Which is very shallow gratitude since the system is broken in many ways. But this ended up not being a financial burden for us, which I am very thankful for.)
ck2 3 hours ago [-]
when I saw "NMDA receptor" I was immediately fascinated
I have long-covid and purposely take low-dose Dextromethorphan (just 15gm)
because it acts as a NMDA Receptor Antagonist
by blocking NMDA Receptors, it helps mitigate overactivation of chronic pain and fatigue pathways
it sounds like Andrew was experiencing the exact opposite effects by aggravating the pathways
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 researching myself and how things work and how supplements affect your body and such for sometimes 12 hours a day. (Chronically unemployed, chronically ill.)
We got her a DNA test and I went to work researching everything and comparing the possibilities to her symptoms, we tried countless different supplements that could help... And eventually one did, it wasn't a cure but it was a relief she had never felt before. That was Quercetin, which is a mast cell stabilizer. It took about 2 years of research and trial and error to find some relief. We took our findings to the doctor and finally got a referral to an internal medicinist who promptly after hearing the symptoms and what has helped diagnosed her and she was out on a proper mast cell stabilizer. She went from being in bed 20 hours a day to being able to fully enjoy life. (Sadly, without me though!)
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 not experiencing full relief yet.
This was the combo Claude recommended I start with for a trial, one message after I told it my symptoms. No doctor has ever been able to help.
I’m not entirely sure why I’m mentioning this, other than I sympathize deeply with your wife. What an absolute ordeal.
Really glad you can smell it on people, smell is a powerful diagnostic tool that few people are trained on.
At the hospital, I saw a gastroenterologist who specialized in Celiac, because I had just been diagnosed with Celiac a year earlier and many of my symptoms seemed related to digestion. He absolutely should have done diabetes tests. On the last day of the 2 weeks I was there, he said "It could be type 1 diabetes... some people get that too" but didn't order any tests. When I was diagnosed at the ER another year later, my glucose was 650 (very high) and had been averaging 300 (it should be ~85). So yeah, the doctors were negligent, in my assessment.
I was talking to a specialist in a field where a rare condition has started to trend on TikTok. It was also eye-opening to learn how much they're struggling under the weight of bad referrals for patients who don't have the condition they claim.
That's not to say they aren't sick. The patients are suffering from something. However between hours of TikTok and ChatGPT they can convince themselves they have a condition and learn how to convince their primary care doctor to put in the referral
This doesn't work as much for conditions that have objective criteria like blood tests, where it's easy to filter out the patients who have both negative blood tests and a PCP who hasn't tried to investigate other explanations.
An example of a popular self-diagnosis is MCAS: Mast Cell Activation Syndrome. MCAS specialists are overwhelmed by self-diagnosed patients trying to get appointments who have never even have a tryptase blood test. If you go on to any subreddit or forum for chronic health conditions you will find a large number of people there have been convinced they have MCAS, and new members are told they might have MCAS too.
This is creating a separate fatigue among providers who need to keep their guard up at all times so they can maintain focus on the patients who really have these conditions instead of letting their schedules get destroyed by patients who don't. It's a hard problem.
Why would a doctor pay another service to order labs for them?
Sadly there are a lot of clinics popping up to serve the internet self-diagnosers, but not in the way you're talking about. They're built around a single enterprising doctor who either believes the disease is undetectable by normal tests, or who is aware that they're stringing patients along but likes the money. If someone opens a specialty clinic for an internet-popular disorder, they have a perpetual line of patients who will gladly pay for a doctor to tell them what they want to hear.
I have a worsened lifelong issue because of repeated sub-optimal "solutions" to a problem, such that the best long-term solution was found by the THIRD doctor that looked at my problem. "Solutions" from the first two guaranteed my problem will forever be worse than it would have been (solely due to their treatments), if only the third doc's solution had been considered/presented first. Even worse, I was a teenager and young adult when dealing with the first two. My mistake for not doing my own comprehensive research, apparently -- the thing we entrust doctors to do for us...
There are going to be casualties of doctor's triage, and those stories will be beyond upsetting, but most would agree its better than an 8 month wait to get an MRI.
In my case, the misdiagnosis up front was entirely reasonable. (EDIT: Well, maybe not. See below.) The generalized anxiety disorder diagnosis from my PCP made a lot of sense given what was happening. I hadn't had delusions yet at that point. It was... a mixture of panic attacks, night sweats, jaw pain and a greatly increased level of anxiety compared to my baseline.
My PCP did run a bevy of tests (chest x-ray, and took tons of blood) to try and rule out anything biological.
Given what was known at the time, I think my PCP did the right thing. And when my symptoms really escalated (delusions, suicidal ideation, falling and hitting my head), my PCP suggested going to an ER. And that's what we did.
I think it was the ER that really dropped the ball. Given the sudden onset of everything, the fact that they didn't get me in front of a neurologist is, in retrospect, really quite baffling. That's when I went to a psychiatric hospital, where I spent 3 nights.
I only got out of that hospital due to total luck. My neighbor was old college buddies with a neurosurgeon. (We had no idea about it. It just came up randomly when my neighbor was dropping my son off at home for us.) That was the critical connection because he ended up talking to the neurology department at Brigham and Women's, then talked to the psychiatric hospital and was the one who facilitated my transfer.
My wife tried to do it on her own but they wouldn't allow it because I had been medically cleared. She had to give 3 days notice to pull me out. Or otherwise, by default, I would see a neurologist after 2 weeks. According to the psychiatric facility.
I really don't know if I would have made it that long. The encephalitis wouldn't have killed me in that span of time, but I was in an extremely dark place.
I'm also really lucky that this is an autoimmune disorder that has a pretty objective diagnostic criteria: a positive antibody test in your cerebral spinal fluid. You "just: need to have your spine tapped to get that though. Fun times.
I actually haven't been able to get the ED notes from that first ER visit yet. They are in a different system than Brigham and Women's, which made it super easy to read notes in their app.
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.gov/articles/PMC2607118/
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, test, explore, and play around with biomedical things (cells, viruses, etc.).
Ideally it would be a purely software world where we replicate everything down to the DNA level so that you can test and play around with potential solutions...
Why do you think that isn’t happening? So many comments here make broad claims about fields where the poster isn’t familiar. Being a programmer does not make one knowledgeable about other specialized fields
Not going to happen with all the regulation. Plus, I think half of us techies got into it for games and boobs (bypass parental controls). Not a lot of that same adolescent motivation in that field.
https://people.com/tech-pro-uses-chatgpt-to-create-cancer-va...
* The web is pretty much dead. Time Berners Lee's ideals certainly are.
* Computing is dominated by completely evil megacorps.
* They are making a concerted effort to make people as tech-illiterate as possible and also make universal computing illegal.
* Theres been years where GPU's were being price gouged, 1st by crypto bros, then NFT bros, now LLM bros.
* Cant even buy RAM now.
* They put e-fuses into hardware now, comes right out of the factory as ready made e-waste that cant be repurposed.
* The biggest platforms, Android and iOS, are walled garden, locked down, corporate nightmare worlds. And there is practically no alternative.
* Social media is making people depressed and also very easy to manipulate en-masse by anyone willing to pay.
* Moore's law stopped and software bloat overtook performance gains.
* VR might have been cool but it was pre-enshittified in its nascent stages. Freakin' facebook bought Oculus before they had released a single headset.
Best of luck to you, and get well. I’m glad it didn’t get even worse before it was treated.
I think multicellular creatures on earth are just so complex they are basically ineffable.. We can understand certain general principles and statistical trends, but the entire system holistically is incomprehensible for a human level intelligence.
Kind of analogous to ML, we absolutely understand how each neuron works, we built them! But we often dont really understand how the resulting model works.
[1] - https://www.cdc.gov/nchs/data/dvs/MortFinal2007_Worktable23r...
This seems remarkably high.
That's not true unless HN readers are a representative sample of the overall 25-44 population, which they aren't. Higher-income/SES is associated with a lower mortality rate than the overall population average.
7K/year is for the healthy, affluent, tech-worker-heavy population already. For the general population, US, is ~ 12K/year.
Not that higher-income/SES is necessarily representative in a supposed 5m strong HN readership - it would be all kinds, from all around the world. SV startup / FAANG types are just a small slice.
Whatever the exact number may be 7000 is going to be a pretty reasonable ballpark, and it's certainly orders of magnitude higher than most people would expect.
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 that cannot be rivalled by AI.
In the 1980s, AIDS was like that. All these healthy, young people, just started getting these diverse horrorshow problems, then died.
It's been a trip. The worst thing that has happened, but also the best. It has definitely given me a new perspective on life, that's for sure.
My favorite side effect is that I now love all foods. Prior to this, I was a rather picky eater. Now I love everything!
I feel like there's a burntsushi joke hiding in there somewhere.
All the best Andrew.
(My handle comes from graffiti I found on the booth of a hot dog stand in Worcester MA called Coney Island[1]. I thought it was a cute oxymoron and adopted it on a silly whim. I only later learned that some sushi is indeed cooked.)
[1]: https://coneyislandlunch.com/
Cheers
There were lots of reasons that went into me posting this.
First and foremost is that this is a disease of chaos that is prone to misdiagnosis. I want to shout this from the roof tops to spread awareness. I don't have a ton of reach, but I have some, and I want to use it to amplify things like this.
Second is that I'm somewhat naturally open about these sorts of things.
Third is I feel a responsibility to my projects and users.
Fourthly is that it's just practically useful to have a link to send to someone when I reference this time period in my life. :-)
> very new diagnosis
Yes! Discovered in 2007. Wild.
> so if you are reading this burntsushi, thanks for being open about something deeply personal, I hope I would have had the courage to do so myself.
<3 <3 <3
I feel like this should be a bit of a two way street. Is there anything we can be doing for you?
I see there's an option for GitHub sponsorship, would that still be your preference?
I first found you years ago from your nfldb project: https://github.com/BurntSushi/nfldb and since then have used xsv and ripgrep.
Also, thank you for participating in the clinical trial. I pivoted my tech career several years ago to focus on that industry (the tech isn't great, I'm trying to help that). Along the way I've learned how important it is to participate in this research, it makes a massive difference so thank you.
This is where AI like ChatGPT shine because they won't just dismiss you.
I quit an SNRI antidepressant twelve years ago and for ten years I had horrible migraines, inability to form sentences, constant anxiety, low motivation, and other symptoms. Doctors just diagnosed it as depression and me having problems.
I knew something was wrong and I suspected it had to do with withdrawal from my old antidepressant. I read online and found others saying something similar. Gemini was able to help me confirm with and provide resources from specialists about this because the average psychiatrist knows nothing about this.
Finally I had a name for my issue-- protracted SNRI withdrawal syndrome. Trying to get off the medication too quick put me into some kind of continuous withdrawal. After confirming this I got back on the old medication and slowly reduced the dose this time.. I feel better than I have in 10 years.
Doctors still don't understand it and sometimes when I mention it to one(I have a few in my family)they just say "that's not supposed to happen". Never put your health solely in another person's hands. Utilize every resource available to you, even the most educated doctor in the world cannot know all there is to know about their field
If you are able to do these things, it's worthwhile to record everything you want: full body MRIs, CT scans of the head, all your X-rays, your blood records and so on. Other countries are easier to get these in, but even in the US a full body MRI is under $2k, Ulta will test your blood for you, and so on. You can't get most medication here easily because it is prescription-gated[0], but many things are available in India (where I'm from).
Neurological conditions are a pretty big risk, because self-analysis is using degraded machinery at that point, though. Admittedly, a hole in the way I handle things. This is another one of those situations where it is valuable to have a wife.
0: Almost all self-analysis encounters the problem that a third-party to the interaction is the one usually paying, and so most players cater to that
I was put on a low dose of an anti-psychotic. I am in fact still on it. We just haven't gotten to tapering off of it yet. (Other medications have taken higher priority.) Tapering off all of my medications, which is the goal, will take quite some time.
In the moment, I very much welcomed the anti-psychotic. I would do anything to fix what was wrong with me. The problem is that the front-line treatment for anti-NMDA receptor encephalitis (IVIG and steroids) takes a minute to kick in. Moreover, you don't have the diagnosis until later. There was a point in time, before the positive CSF antibody test but after the abnormal MRIs, where multiple sclerosis was a possible diagnosis.
In any case, once I got out of the psychiatric hospital and into Brigham and Women's, an MRI is indeed what I had right away. And that's when the brain lesion was found. But! Not all cases of anti-NMDA receptor encephalitis have an abnormal MRI. Susannah Cahalan, for example, had two normal MRIs. Brain inflammation was only detected indirectly at first because of the "clock test"[1]. And they later did a biopsy on her brain to confirm.
In retrospect, yes. I think I could have done a better job of advocating for myself on my first ER visit and demanded to see a neurologist. But I didn't know what I didn't know, unfortunately.
[1]: https://www.encephalitis.info/news/brain-on-fire-susannahs-r...
Interesting, I had similar symptoms 5 years ago, including trouble swallowing which in itself induced a sort of panic. Also, I have experienced 6 "attacks" (not sure whether a panic attack is the right name) in two days, that felt like all my limbs were numb (with that tingling feeling you get when you keep your limb in an awkward position for too long) and tightly wrapped in duct tape, accompanied by rapid breathing, fast heart rate and dizzy vision. I wasn't diagnosed with anything specific and it went away on its own, but later the same year I started feeling occasional heart flutters as if my heart was going to jump out of my chest. Got tested and was diagnosed with a 2nd degree AV block. To this day, I have no idea what caused this and whether the two events were even related. Life can slap any one of us in the face in countless ways. Creatively vicious.
Glad your prognosis is quite good. Wishing you a fast and full recovery.
Trouble swallowing, jaw pain, dizziness, double vision (and more) were all things I experienced as well. At one point, my left eye was dropping significantly.
Not to say you had or have what I have. The symptoms are very non-specific.
My early rust skills benefitted significantly from having read your code!
Good luck and good health.
That sounds scary. As someone without any experience with psychiatric institutions or the US health system, I'm curious what people's views are on this.
Consult a lawyer. Participating locations only. etc. etc.
Funny story (that I didn't include in the blog) is that I actually wound up in a psychiatric facility for a second time after I was in-and-out of Brigham and Women's on 3 separate occasions. I was in a much better state mentally and physically, and this particular facility (McLean Hospital) was way better than the first one I was in. The circumstances were different and I was happy to be there because things were still very rocky at home. And very dark. So my wife and I felt it better that I be in an in-patient facility at this point, which came right before my official anti-NMDA receptor encephalitis diagnosis.
Anyway, the funny story is that I showed up to McLean, after being transferred from Brigham and Women's, with a physical copy of my wife's PoA over me and a health care proxy. The charge nurse said it was the first time he had ever seen anything like that before.
I wish you the best and I'm sure us Rustaceans are happy to help with anything
Thank goodness for health insurance. (Which is very shallow gratitude since the system is broken in many ways. But this ended up not being a financial burden for us, which I am very thankful for.)
I have long-covid and purposely take low-dose Dextromethorphan (just 15gm)
because it acts as a NMDA Receptor Antagonist
by blocking NMDA Receptors, it helps mitigate overactivation of chronic pain and fatigue pathways
it sounds like Andrew was experiencing the exact opposite effects by aggravating the pathways
* https://pmc.ncbi.nlm.nih.gov/articles/PMC7851375/
* https://images2.imgbox.com/0b/d7/AKg9AJg6_o.png