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Night of the living brain fog dead or how I hacked myself better via open source

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Re: Night of the living brain fog dead or how I hacked myself better via open source

#291

Post by rdiddly »

blix wrote: post #170
rdiddly wrote: post #157

Earlier quoted context omitted.

Trying things is science, and any experiment can be retried to see if results replicate. People who aren't scientists or don't have time or equipment to be scientific about a thing have to decide where the balance lies, between how much science they're capable/willing to do vs. how many assumptions they're willing to make based on other people's science. There's no belief system called science and you can't be pro- o…

> There's no belief system called science There are two belief systems called science. The less common one is the one you outline immediately after denying its existence: it's about asking questions and trying to establish evidence-based models to make predictions and testing/validating the assumptions in those models. It's probably more accurate to call this belief system empiricism. The more common one is a deferra…

Fine but it's an approach to knowledge, not a belief system.

Re: Night of the living brain fog dead or how I hacked myself better via open source

#292

Post by aidenn0 »

arghnoname wrote: post #172
aidenn0 wrote: post #146

Earlier quoted context omitted.

There are three main types of insurance in the US: HMO, PPO, and EPO. HMO works a lot like my understanding of the UK system (except the government doesn't pay for it); if you want to see a specialist, you need to get permission from the insurance provider, either directly, or (more typically) by having your GP (a.k.a "primary care provider) write you a referral. PPO and EPO do not require referrals. A PPO typically…

This is a good summary. What's interesting to me to observe here is your PT story is the system working as designed. This intention is not hidden. If one could just google the solution to their problem instead of using scarce resources, as the common phrase goes, that's a good thing actually. We do an awful lot of rationing in these sorts of ways. It's maddening to me that I pay the astronomical premiums I pay and ye…

If you substitute "google the problem" for "get a printout from my doctor that isn't from a possibly sketchy internet source" I would be a lot happier.

Re: Night of the living brain fog dead or how I hacked myself better via open source

#293

Post by aidenn0 »

version_five wrote: post #136
jonhohle wrote: post #100

I’m going through this right now and it feels like everything Americans have complained about socialized healthcare is now true in the US as well: long wait times to see providers, providers that churn through patients like their doing oil changes, providers that just push you along to the next step in a playbook without considering individual needs. I’ve been dealing with fatigue for about two years and had to preem…

I don't have any experience with US healthcare, but presumably having insurance and whatever conditions they enforce is basically a form of socialized healthcare, no? If one wanted to, couldn't they find a provider they could pay to deal with whatever issue immediately?

> If one wanted to, couldn't they find a provider they could pay to deal with whatever issue immediately?

If you live in or near a large town, yes, but the price will likely be 4-8x what your insurance company would pay for the same services, and you can't get a quote in advance.

Re: Night of the living brain fog dead or how I hacked myself better via open source

#294

Post by hakunin »

akira2501 wrote: post #235
hakunin wrote: post #17

Earlier quoted context omitted.

> It's not anti-science to take your health into your own hands. It depends on how exactly it was taken into one’s hands right? Can’t really know if it’s pro-science or anti-science until you see what a person is doing. Most people do pretty irrational stuff, based on stories of a doctor in my family.

> Most people do pretty irrational stuff, based on stories of a doctor in my family. The doctor gets self reported snapshots from a patients memory. It amuses me as an engineer that they detect what seems irrational, but never follow up on it in any meaningful way or ever attempt to observe the actual reality of their patients lives. The lack of time for real follow up is understandable, but the unwillingness to acce…

You know how it’s always easy to educate your colleagues when they make a sub-optimal architectural decisions that could bite them in the long run? How readily they accept your insight and proceed to rethink their mental models? No? Not even experienced engineers?

Now imagine an average patient, like a mom with 7 kids that doesn’t speak English, or a 16 year old dad who smells intensely of pot. Vast majority of the patients are very different than our engineering bubbles, and doctors are humans who are trying their best.

For people who are willing to have a deeper conversation, some doctors will engage more meaningfully. But most of the process for doctors is to give you instructions to follow, then when you report back, alter them, or proceed as before.

Most people try the first thing doctor asked, and if it didn’t immediately work, change it themselves, and/or go to a new doctor. Then complain how they’ve been to 12 doctors and nobody helped, but then they stumbled on some YouTube guy who said to take 5000mg of vitamin C every 2 hours, and their back pain went away (hint: it went away on its own).

Re: Night of the living brain fog dead or how I hacked myself better via open source

#295

Post by fnordpiglet »

yosito wrote: post #13

> The morale of the story, you need to sometimes tackle your own health and take matters into your own hands The frustrating thing for me is that doing so is often labeled as being anti-science, when the truth is, this guy was actually doing the science himself. It's not anti-science to take your health into your own hands. It's anti-outdated-underfunded-medical-systems.

Science is but a tool for understanding what works and doesn’t work. It’s neither necessary nor complete for solving any specific problem. I have a few instances where I’ve used science to hack my own problems and it usually works if you are careful and methodical, but my result isn’t scientific and it’s only manifest in a sample of one. I can’t advertise it as a solution for everyone as it’s not science. But it doesn’t mean I’m anti science, rather, this is how theories and hypotheses start - not in a clean room with a pencil and paper extending known science with sterile logic. It’s having an insight that’s a bit crazy but you know enough science to support it, you try it out and holy smokes it works. Then you craft an experiment to prove it didn’t work, some similar well controlled construction. A personal example is I suffered from long covid. I knew that citrulline is a non essential amino acid that is a part of the nitric oxide cycle that is easily digested and metabolized into arginine in the kidneys. It’s got a lot of uses for exercise endurance, erectile dysfunction, but also sickle cell anemia. The popular misconception is the shape of the sickle cells can’t carry oxygen well but that’s false. In fact the symptoms are caused by the shape irritating the cells lining the blood vessels, and arginine is a vasoprotector and vasodilator that’s redirected to help heal the irritation leading to loss of energy systematically. I figured covid attacks and irritates the blood vessels maybe there’s something similar at play. Regardless, by juicing the NO cycle overall blood flow and energy levels increase. I checked with doctors and the body can consume large amounts of citrulline without consequence other than GI discomfort in large amounts. I got a bag of nutricutical grade citrulline from Amazon and within half an hour I felt great for the first time in a year. In a few months of daily dosing feel normal again. Maybe it was luck, maybe a placebo, maybe real. It doesn’t matter - it’s not anti-science, it’s proto-science

Re: Night of the living brain fog dead or how I hacked myself better via open source

#296

Post by dantheman0207 »

elric wrote: post #218

A couple of things: 1. Sleeprider deserves to be raised to knighthood or some kind of medal or something. The man is a hero and a living legend, who has helped untold number of people with their apnea. I'm not kidding. Thank you, Sleeprider, for all that you do. 2. OP really should pursue the NHS route. Maybe it'll take a while, but once the gears are in motion he'll at least get access to a steady supply of ASV mach…

Any references or links on AHI and bad sleep? Seems like that is the gold standard for measuring severity of sleep apnea but I haven’t found it a very good measure for my own experiences.

Re: Night of the living brain fog dead or how I hacked myself better via open source

#297

Post by goldenkey »

CapstanRoller wrote: post #274
ipaddr wrote: post #266

Earlier quoted context omitted.

The biggest mistake anyone can make is to blindly jump into medical treatments first when common home treatments with lower side effects can handle the job. If you do that you'll be in blood pressure meds by 35 instead of reducing your salt.

>instead of reducing your salt Salt is not to blame, it turns out https://archive.is/pWUI0

It's really the water consumption. If your urine isn't clear, you don't drink enough water. Additional salt means higher water requirements if you aren't losing it to sweat.

Re: Night of the living brain fog dead or how I hacked myself better via open source

#298

Post by blix »

rdiddly wrote: post #291
blix wrote: post #170

Earlier quoted context omitted.

> There's no belief system called science There are two belief systems called science. The less common one is the one you outline immediately after denying its existence: it's about asking questions and trying to establish evidence-based models to make predictions and testing/validating the assumptions in those models. It's probably more accurate to call this belief system empiricism. The more common one is a deferra…

Fine but it's an approach to knowledge, not a belief system.

I feel this is distinction without a difference. All belief systems are approaches to knowledge and information at the end of the day.

The institutional science belief system really has a lot in common with religion. In fact the instutions we now trust to train scientists and dispense scientific information largely grew out of instutions with a major focus to train clergy and dispense religious information.

Empiricism is not really in that same subcategory, but it also rests on some set of ultimately unverifiable assumptions. In fact, I'd argue that one of the central assumptions of classical empiricism, that all systems are locally deterministic, is demonstrably false. The early quantum pioneers had a hard time coming to grips with this and there are still several competing interpretations of QM. This huge shift still hasn't fully percolated to many other fields of science, which often still assume local determinism and pretend QM doesn't exist.

Re: Night of the living brain fog dead or how I hacked myself better via open source

#299

Post by telchior »

c4mpute wrote: post #286
telchior wrote: post #269

Earlier quoted context omitted.

Sure, but the supplement industry is 99% woo and most of what is sold has no proven benefit. In general people most people taking supplements don't have any known deficiency (including me, blood tests show my mag levels are fine).

"Known deficiency" is a thorny issue in itself. The various serum levels and necessary intakes vary widely by individual. And recommended daily allowances for many kinds of vitamins and minerals are set conservatively low to avoid overdoses from people chugging the bottle. "levels are fine" can still mean fine, too low or too high for your individual need. As long as you don't overdose, trying out a supplement noneth…

Yep. I didn't mention it but with magnesium testing, blood tests may not catch an issue; you can be deficient in a particular organ (e.g. brain) and fine in others.

But realistically, very little of the $100 billion+ supplement industry is built on anything medically necessary. Yes, I have a waste basket diagnosis with an unclear cause that's helped by a specific supplement, but there are quite literally dozens (perhaps even hundreds) of other supplements that the snake oil merchants swear up and down are essential for the same condition, and they'd happily claim that whatever deficiency exists is undetectable. That's why I "don't believe" in supplements in general.

Re: Night of the living brain fog dead or how I hacked myself better via open source

#300

Post by Abishek_Muthian »

yosito wrote: post #13

> The morale of the story, you need to sometimes tackle your own health and take matters into your own hands The frustrating thing for me is that doing so is often labeled as being anti-science, when the truth is, this guy was actually doing the science himself. It's not anti-science to take your health into your own hands. It's anti-outdated-underfunded-medical-systems.

I was told my bones were like that of an 80 year old when I was 32, I have severe Osteoporosis and since I already have Achondroplasia doctors here(India) don't even try to find what's causing my bone weakness; "Learn to live with what you've been dealt with" is a literal statement made by a doctor in an expensive hospital.

My spine broke, I've undergone various bone related surgeries all my life.

I decided to take matter into my own hands and built "Bone Health Tracker"[1] a FOSS bone density results tracker, I went to the front page of r/InternetIsBeautiful subreddit and through which I came across others like me who have suggested various rare diseases which I could be facing. Since then I've been working with NGOs helping those with rare diseases to help me find a doctor who can diagnose my disease and for the first time in my life I'm hopeful that I will be able to find what my disease is soon.

[1] https://bonehealthtracker.com/

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