Well said. There is a much bigger lesson than "it turns out sugar is bad." It's: "we don't know as much as we think we know so we should stop being so overconfident."
1,281 karma · joined June 29, 2016
Well said. There is a much bigger lesson than "it turns out sugar is bad." It's: "we don't know as much as we think we know so we should stop being so overconfident."
Maybe I've had bad luck, but I've encountered very few prospective employers who were OK with this. The ones I encountered expected to hire someone who would fit in like a jigsaw puzzle piece and they wouldn't settle for anything less. My confidence in my ability to pick up almost any tech quickly did not impress them, and they latched on to my lack of that particular bullet point and kept hammering on things like "oh, you don't know what a [platform-specific term for auto-scaling groups] is?..."
I've had an ENT surgeon explain some of the normal/traditional surgical methods of doing turbinate reduction, and it seems to be fairly complex; some methods preserve or reconstruct the underlying bone structure which may be needed for the turbinates to function correctly, while others just do a straight reduction and don't consider the final composition of what remains of the turbinates. I'm trying to find out how somnoplasty relates to this.
Sometimes the swelling would affect the rest of my airway and I'd feel like I couldn't take even a moderately deep breath. I'd be rushed to the ER but the doctors couldn't find anything other than an elevated heart rate (and some immediately went to their go-to diagnosis of it being stress or a panic attack). After going through that about 10 times, I got a good doctor who told me: "oh dear, you're actually choking." But then, things like hereditary angioedema were ruled out, and the cause remained elusive. I later discovered I could control my symptoms with diet.
I'm now looking into having somnoplasty to reduce the size of my turbinates, but it's unclear whether doing so will simply shift the problem to another narrow point of my swollen nasal passage.
I appear to have lost some kind of cosmic lottery because I also have severe digestive issues and must follow a very strict diet (which also reduces the airway swelling). As you touched upon, it is very hard to accept that you spent most of your life not being able to be yourself. I know I spent most of mine in a subdued fight or flight mode due to the chronic strain on my basic bodily functions. It's been a cruel existence thus far and I can't wait for the day I can rid myself of this torture definitively (my plan for fixing my problems is getting closer to fruition and I've had some success with some of the measures I've tried).
You are right to assume that the problem is fungal, since it started after antibiotic therapy, but I find that fermentation of any kind makes me sick - even supposedly anti-candida things made me worse if they were fermented (claimed to provide tons of antifungal probiotics). I have had much better results admitting that I do not know the actual imbalance, and thinking of this as a known unknown.
The supplements that helped me most were caprylic acid (for reducing gut dysbiosis) and S. Boulardii, even though you cannot take both at the same time (the former weakens the latter).
I also benefited greatly from taking nutritional supplements to top off any deficiencies of vitamins and minerals I might have had, but I do not take these things continuously, because supplements usually have specific forms of ingredients that may compete with others - for example, you'll often find Vitamin E as alpha-tocopherol, which is OK for topping off your levels but in the long run, it depletes other forms of Vitamin E such as tocotrienols and other tocopherols.
See my other comments for more details, I wrote quite a bit.
Here's a temporary email address: something@radiodale.com
Please email that address and I will give you my real email address there. This is to avoid publishing my email for perpetuity.
Just to clarify my view: I think there is a threshold of experience beyond which one becomes "formed" (as in, the word formative). Beyond that point, I think free will, and consequently, personhood is real and we're not just automatons. This is not a new argument; I just wanted to clarify my view.
But I would like to put forth the argument that people get closer to gaining the required awareness that would make them free as time passes and they gain experience. This is similar to limits in math.
That is not to say that everyone moves in that direction at the same speed - that part is indeed out of one's hands. But it is undeniable that experience increases, and with it, awareness and thus freedom.
I don't think I believe this because of ego. I just think it happens to be true.
My approach is to rely very heavily on heuristics in order to screen potential treatments. I wrote some steps describing how to do that elsewhere in this thread.
Also, vinegar is fermented and thus very high in histamines, on top of being corrosive.
edit:
I've also not written anything about methodology, so I hope my writings have not given the impression that one can play fast and loose with supplements. I actually follow a safety-first approach, and I do this only after a doctor reaches a dead-end.
General approach for evaluating supplements:
1- Find out about something that sounds promising, either by accident, or googling ideas and stumbling upon something that claims to improve your condition in some way.
2- Skim reputable sites (that cite research) listing the potential pros and cons of the supplement in question. Stop here if there is an unacceptable level of risk.
3- Skim any research about the supplement vs. your condition.
4- Read Amazon/iherb/other customer reviews for formulations of the supplement. Do not get excited. Most of these reviews are fake. What you are doing here is scoping out the ideal claimed outcome as a screening tool. If the ideal outcome is not worthwhile, stop here.
5- Dig into the research yourself. Confirm the level of risk. Check interactions. Determine whether there is a chance of the supplement working.
6- Purchase and test product. Remain objective. The baseline expectation is that nothing will work. Don't be emotional about that. I love having experience with products regardless of whether they work for me or not. I find it very interesting either way.
I've only ever made 2 top-level comments related to this issue on HN and they have surprised me with the amount of attention they generated.
A lot of people are going through desperate times because of conditions like this. It's hard to appreciate how bad it can be just by trying to imagine the symptoms for an instant. It's much harder to imagine what it feels like to experience that for months; years; decades.
In this case it's based on a heuristic. I can't at all model human will so it seems reasonable to start with it as infinite (since it's so vast and appears virtually limitless, the very reason I can't model it in the first place) and model in the constraints.
edit: also, I am a Christian and that probably factors into my view subconsciously, although I am certain many non-Christian views would arrive to the same conclusion.
- what positive effects did you get taking S. Boulardii ?
Intestinal "well-being," feeling I can almost forget about my intestines, whereas normally my abdomen always hurts very badly, to the point my entire body is straining in reaction to it. This is only in combination with the other measures I took; S. Boulardii alone is insufficient.
Whenever my intestines felt fine, my head felt clear and my nose/sinuses would stop being congested; and vice versa. This phenomenon has been consistent throughout my illness and has led many a doctor to scratch his/her head and/or not take me seriously.
I tried doubling the dose after reading about that on the net (some people take 25m+ CFUs), but it gave me dryness/constipation and resulted in diverticulitis so I gave that up.
- did you try reuteri ? If no why ? If yes what happened ?
Only as part of larger probiotic formulations. I don't tolerate most and I'm not sure why. It may be that some strains produce histamines or include FOS (when I iterated through probiotic products, I was not aware of FOS - please see my other reply below where I discuss FOS). So I don't have any experience with it.
- what forms did you take the supplement in ? What form do you prefer and why ? Any brand recommanded or things to watch out ? Do you know natural reliable food sources ?
I take KAL S. Boulardii (ordered from iherb). I use veg. capsules because of a bias I have: I had bad side effects to a few liquid probiotic formulations I tried early on, so I ended up avoiding them as a general rule (which might be invalid but I have no further need to re-test it).
- can you tell me more about your 3 courses of H. Pylori eradictation ? Why ? How ? What are the results and costs ?
The reason I got the treatment in the first place was chronic inflammation in the stomach and intestines. I also had severe chronic sinus inflammation (enlarged turbinates specifically) that never abated, and a very bad response to histamines (redness, itching). I had asthma-like throat constriction; a doctor once told me "of course your heart rate's up, you're almost choking!" after I went in because I felt out of breath. I had a general drunken feeling, and would even get giddy at times. I have considered the possibility of auto-brewery syndrome, but there's no way to tell now. The doctor was a gastroenterologist so he focused on the digestive issues.
After the eradication therapy, that all got much worse and I developed noticeable food intolerances. I think I was already sensitive to those foods, but not enough that I'd notice at the time. I specifically could no longer tolerate dairy and sugar at all, and I had to greatly limit harsh foods (acidic stuff like vinegar, or very salty foods) or else I'd get gastritis extremely quickly (confirmed on endoscopy). My scalp started to itch and lots of hair fell out in my crown area. I am better with dairy nowadays but still can't have sugar, and vinegar just destroys me (I guess because it is corrosive AND high in histamines). I also can barely eat acidic foods and have to avoid most of them.
- did you notice what in your life may cause you to loose a proper gut content ?
I had always felt great until the age of 11, then it hit me and I started to have "attacks" which I didn't understand at the time, and doctors couldn't figure them out at all. I was given a bunch of things like nasal steroids for the sinus issues, and some symptomatic treatment for the stomach.
I felt so terrible though, literally like I was dying. I imagine waterboarding feels like that, because I just felt like I was unable to breathe adequately and even though it wasn't visible, I felt like I was making a contorted face all the time because of the feeling of straining. I kept asking for help but after doctors couldn't find anything, my parents began punishing me for what they thought was malingering (long story there - but they are forgiven and we are on good terms now).
I have some theories about what caused it but nothing concrete. I moved country (continent too, in fact) just 2 years prior and hygiene was far worse. I went through several bouts of gastroenteritis. I also got a salmonella immunization (capsule) and the doctor instructed my mom to open it up and release the powder in some milk, to make it easier for a child of my age to swallow it. I got extremely sick with some kind flu-like illness + gastroenteritis after that, even though my siblings who took the same immunization did not get sick.
Please see the reply I made below for some more details if you're interested
edit: I forgot to mention something relevant that would relate my experience with the article. A while back I read an article written by an autistic man, in which he mentioned "face tightness" being part of his being autistic (I only made the connection later so I don't know how to find it again). I truly think there is something to that. I felt strained and neurotic whenever my symptoms flared up, and I was quite antisocial in high school, yet mellow on the few days my symptoms cleared up.
edit: further details added. I typed this up a bit quickly (it's late here) so I had omitted some important things.
Regarding diet, I started observing the effects of everything I ate and adjusting accordingly, somewhat like an elimination diet. I was actually really clueless at first and had numerous deficiencies as a tradeoff for some of the symptoms disappearing (which was great but not sustainable). Over the span of years, this has improved and today I have no deficiencies and only relatively mild symptoms remain.
The biggest breakthrough was limiting fermentation, by taking the FODMAP IBS diet to its natural conclusion, and eliminating everything that would ferment (and thus increase intestinal microorganisms, which for me were imbalanced). What prompted me to do this was trying 2 similar probiotic formulations, only one of which had FOS. The one with FOS caused a huge flare up. So I greatly reduced fermentable things ("resistant starches," "soluble fiber," "FOS," "FODMAPs", fructans, sugar alcohols...). Caprylic acid supplementation really reduced fermentation whenever I made a dietary mistake.
I googled that idea and found the blog of Dr. Norm Robillard which advocates for a similar low-fermentation diet. Interestingly, the people who commented on his site seemed to divide into 2 camps: low-fermentation people vs. those who did well on the opposite diet (high starch / fermented foods).
Adding S. Boulardii then reduced my symptoms further (brain fog, chronic intestinal inflammation) and I feel pretty decent now.
I cannot yet figure out how to make it so my intestinal microflora is balanced enough that eating fermented and/or fermentable foods wouldn't destroy me. I'm still working on that in my spare time.
S. Boulardii is fairly widely known as having a pretty broad range of positive effects, so trying it out was a no-brainer. I have tried many, many things over the years and have improved greatly.
On a related note, it is common to assume that confirmation bias or the placebo effect would distort my judgment, but it turns out I am objective to a fault, as any objectively measurable intervention that I thought worked was later tested experimentally and confirmed my results.
There is actually nothing wrong with taking a guerrilla approach to health if doctors can't help you, as long as you don't fall for the "alternative for alternative's sake" fallacy, and are willing to bear the costs of iterating through the most promising interventions and not being disappointed when most of them fail.
(Of course, this is just an opinion.)
I am also intrigued about what this means for criminality and how the line between illness and evil is likely to shift given the role of microorganisms in behavioral dysfunction; and more broadly, we don't like to admit it, but it seems that completely amoral factors can be the cause of moral, amoral, or immoral behavior.
I'm skeptical about the B12 in fermented foods - whether it's bioavailable and a usable form.
I find it reasonable to limit meat consumption to animals that were bred for that purpose, and I am satisfied with few types of meat and have no need for the more capricious varieties (eating things like horse is unnecessary. I'll stick with chicken).
This video is what triggered this thought process for me: https://www.youtube.com/watch?v=rqAmR1lEN0I (EDIT: I'd linked the wrong video)
I will certainly never eat octopus.