I am Issa Rice. https://issarice.com/
riceissa(Issa Rice)
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Here’s one example. Jeff Wood had been suffering from ME/CFS for a while, and found that his head started sinking one day, and a lot of his symptoms would get worse depending on the position of his head/neck. This led to his diagnosis of CCI/AAI and he was able to get the right surgeries and is now in remission. Of course, most of us are not as lucky as he is in having something that so dramatically and immediately changes symptoms. But I think it’s one way to solve such medical mysteries, and is basically what you say about tracking backwards from symptoms to causes.
Here’s another example, although this one hasn’t led to any actual cures yet. Robert Phair used his knowledge of biochemistry pathways to come up with a hypothesis of how the citric acid cycle gets shunted, which has the immediate effect of lowering ATP production but also some other crazy downstream effects like neurotransmitters being stolen to fuel an alternative cyclic reactions (which possibly is what one type of brainfog is caused by). So this approach is more top-down: start with a bunch of “textbook” knowledge and theory, try to come up with a hypothesis of how that could lead to problems, and how those problems might explain symptoms.
I’m sure there are many other approaches.
Sure, all of those things. I think they are all related parts of what I’ve been wondering about, and are not as distinct as maybe you think. If I were to try to compress my main confusion, it’s something like: I see nerdy people spontaneously doing certain activities for fun, like doing math, programming, making and solving puzzle games, writing long blog posts about COVID origins, or whatever; why is it that almost no one spontaneously decides to try to solve mysterious chronic illnesses? Does thinking about mysterious chronic illnesses have some kind of barrier that repels people, and if so, are there ways to remove that barrier?
I wonder if “brains” of the sort that are useful for math and programming are neccessarily all that helpful here.
I think I used to implicitly believe this too. I gravitate much more to math/programming than biology, and had a really hard time getting myself interested in biology/health stuff. But having been forced to learn more biology/health stuff, I seem to be able to ask questions that I don’t see other people asking, and thinking thoughts that not many others are thinking, so now I think the kinds of thinking used in math/programming generalize and would be quite helpful in solving mysterious chronic illnesses.
Separately, I used to mostly agree with the Elizabeth post you linked, but the biggest “win” I’ve had so far with my own chronic illness has had the opposite lesson, where careful thinking and learning allowed me to improve my breathing problem. Of course, I still try a bunch of random things based on intuition. But I have a sense that having a good mechanistic model of the underlying physiology will lead to the biggest cures.
I’ve been trying. You can see my write-ups about breathing, swallowing, weird thirst/electrolyte(?) thing, and paradoxical temporary improvements following certain events. I also have a draft of a post detailing all of my history, labs, symptoms, and everything I’ve ever tried, but it’s a huge amount work and I don’t have much hope of people even reading it (hence this question, to see what I can do to make it more interesting), so I’ve only been able to make progress on it very slowly.
Update: The flashcards have finally been released: https://riceissa.github.io/immune-book/
Other commenters have already hinted at this, but I suspect that terms like “saturated fat”, “seed oils”, and “omega-6 PUFA” are not specific enough, and I further suspect that this makes basically all studies mostly useless (because they work with these flawed coarse terms). “Saturated fat” can be tallow from factory-farmed cows or cultured butter from grass-fed grass-finished cows (and even that isn’t specific enough; was the grass sprayed with XYZ pesticide? etc.). “Omega-6 PUFA” can be highly heated seed oils chemically treated to deodorize them (masking their rancidity), or some of the oils in e.g. whole nuts. Even something specific-sounding like “extra virgin olive oil” can unfortunately mean pretty much anything because there’s a bunch of fraud going on, so the actual bottle in front of you probably isn’t the real thing.
My bottom line is pretty similar to yours though. Clearly something went wrong in the last few hundred years, and probably diet is a good chunk of it. So treat any kind of modern processing or ingredient with suspicion and as much as possible try to eat as humans ate before the last few hundred years.
Hi, I wanted to give an update. Capnometry biofeedback worked better than I expected. My baseline ET CO2 went from around 27mmHg to around 40mmHg in the first 1.5 weeks of using the device, and stayed there for the whole month I had access to the device. (I’ve now returned the device.) The key thing I discovered was that even though I was already nasal breathing 99.9% of the time, my nasal breaths were still quite audible and so I was overbreathing because of that. The biofeedback+coaching allowed me to switch my breathing to a silent nasal one in stages. I still experience air hunger, but it is a lot more subtle than before. I still have trouble talking, some of the time (I think talking makes me overbreathe, so if I start out with no air hunger then I can talk for quite a while, but if I start talking when I already have some air hunger, then I quickly reach my limits). I still on occasion mysteriously have a lot more air hunger than normal and feel like I “forgot how to breathe”, and I wonder if that means I have some sort of autonomic problem… I’ve been writing up a lot of my thoughts here. I might retry capnometers in a few months or a year or something, but for now my plan is to go back to (original Russian-lineage) Buteyko method and really logging the time (rather than half-assing it, which is what I was doing previously with Buteyko). Feel free to ask any questions.
Interesting, I don’t know anything about the quality of different SLIT manufacturers, but $2600 sounds a lot more affordable than $7000. I’ll try to remember to ask my allergist about this if I ever see them again.
My understanding (based on watching some YouTube lectures and talking to my allergists) is that SCIT (aka allergy shots) and SLIT are equally effective but (at least in the US) SLIT is not covered by insurance so SCIT ends up being a lot cheaper for most people. The main problem with SCIT is that it requires going to the allergy clinic every week for a while, then every month for a while over a period of about 3 years (but it is possible to speed things up quite a bit by doing cluster shots or double shots). I tried doing SCIT last year but my chronic illness made it too difficult to go to the clinic each week so I eventually had to stop (I imagine this won’t be a problem for most other people). My allergy clinic gave me an estimate that SLIT would cost roughly $7000 total over 3 years, whereas SCIT for me was free with my insurance.
How were you getting SLIT for $25/week, how much did SLIT cost in total for you, and were the doses tailored to your particular allergies based on tests?
I had a couple more questions about the CONTEC device:
What’s the lag time from when you breathe to when the waveform is displayed on the screen, and when the number updates?
How does it prevent water (from exhaled air) from getting into the device? The CapnoTrainer uses water traps inserted between the cannula and the device itself, and these water traps need to be replaced every once in a while. But I haven’t seen anything similar for the CONTEC device.
I haven’t verified the correctness of what this person is saying, but this Reddit comment seems relevant:
Most yoga breathing techniques have been completely misinterpreted from the ancient texts, and incorrectly teach people to breath larger amounts of air, when true deep breathing (deep as in from the diaphragm) is very still and almost imperceptible at rest. Buteyko teaches how to reset the part of the brain that controls autonomic breathing back to this very gentle still breath. Lau Tzu said ‘the perfect man breathes as if he is not breathing’ . The things that throw out the breathing pattern/volume (and in turn the whole body’s biochemistry) are stress and diet, and environmental toxins mostly, but once this happens its hard to reset the breath back to normal without a correct breath practice. And most yogic breathing as taught in the west is the sadly exact opposite of what is needed.
One data point: https://youtu.be/XliOGg8Tl98?t=230
Thank you, this is helpful!
I found someone in my local area who has a CapnoTrainer and was willing to rent it out to me and coach me, so it was a lot cheaper than the official route. But yeah, in general rentals are quite expensive unfortunately. If I couldn’t find anyone who would rent one out to me for a reasonable price, I would probably have just gone with the CONTEC device as you did.
When I originally wrote this LW post, I had never used a capnometer of any kind (it just seemed quite promising and I was confused why basically no one was talking about it). After writing the post, I found someone who would rent a CapnoTrainer to me, and have been using the device now for about a week. The CapnoTrainer is still the only capnometer I have used. It’s still too early for me to say whether the device “worked” or not, but so far it’s been a quite promising experience (I’m planning to write more in maybe a month when the rental period ends).
The contec does show the waveform, it’s just on a tiny screen so not the most detailed.
Huh, okay, that is good to know. I was looking at images like this one where the wave form is clearly the SpO2, rather than CO2:
But scrolling through more of the images, I do see this, which looks like a CO2 curve:
I am guessing there must be some way to switch which graph you see?
Talking is really bad too for me. If I talk for a sentence or less, let myself breathe a few breaths while not moving, then resume talking and keep pausing for a while after talking only a bit that helps a lot.
This sounds so much like me… (Luckily I don’t seem to have the problem with movement, but eating (specifically swallowing) makes me nervous too.) I don’t know if you’ve looked into Peter Litchfield’s work (he has a bunch of videos on YouTube too), but he talks a lot about altering your subconscious/unconscious breathing habits instead of consciously using techniques as crutches to save you from an episode. I recently got access to a CapnoTrainer so that will be my plan for hopefully fixing my breathing (I already did this once when going from ~80% nose-breathing to ~99.9% nose-breathing—it took about a month of anxiously paying too much attention to my breath, but after a month or so it became totally natural).
I self-studied a bunch of math in 2017-2019 in order to do AI alignment research (specifically, agent foundations type stuff), and have a lot of thoughts about how to do it. Feel free to message me if you want to discuss.
Thank you, this is really fascinating! After writing this post, I talked to someone who does biofeedback using a capnometer, and they also mentioned that same CONTEC device as a cheap but still accurate capnometer. Their main gripe with it was that it responds more slowly compared to the CapnoTrainer and doesn’t show the wave form, so it is not as good for doing biofeedback with (e.g. apparently the CapnoTrainer can show things like aborted breaths or weird exhalation patterns, whereas the CONTEC device can’t show that), but it is still good enough for detecting CO2 levels.
I would love to read more about your experiences with your breathing issue and what you’ve tried. Your description of your problem seems similar to my own—for example, I notice that talking out loud seems to dysregulate my breathing pretty quickly.
Does this mean that a cheap “pseudo-capnometer” can be created which measures VOCs collected via a nasal cannula? Or would measuring VOCs instead of CO2 change the results at that level (but why?)?
Thank you!
Does “COTS” stand for “commercial off-the-shelf” or is this some more technical acronym related to CO2 measurements?
Ultimately the reason it’s not popular is probably because it doesn’t seem that useful. Breathing is automatic and regulated by blood CO2 concentration; I find it hard to believe that the majority of the population, with otherwise normal respiratory function, would be so off the mark. Is there strong evidence to suggest this is the case?
I agree that this wouldn’t be useful for the majority of the population. (Some breathing gurus claim that poor breathing is responsible for pretty much every health problem ever including anxiety, depression, sleep problems, heart problems, brain fog, gastrointestinal problems, headaches, chronic pain, etc. I don’t buy these strong claims.) As I tried to make clear in the original question, my own interest in this is personal: I’ve been having chronic shortness of breath for over a decade and the doctors just shrug and say “maybe it’s anxiety” and give me inhalers which don’t work. But I suspect others like me are not all that rare. This video (that explains air hunger in terms of carbon dioxide levels and overbreathing) has 53k views and 2.2k likes; Reddit is full of people complaining about air hunger; something like 8% of all EMS responses in the US are from a combination of “respiratory distress” and “shortness of breath” (most of which I assume are not life-threatening; see this Quora question for some evidence, and my one and only time so far on an ambulance to the ER was due to feeling like I couldn’t breathe which in retrospect was probably due to overbreathing). So again, I don’t think the majority of the population would need to do anything about their breathing, but that seems like quite a high bar that basically no health problem could clear. I’m instead suggesting that it’s quite a common problem (but I don’t know exactly how common), and asking why this device which seems like it would be helpful for this common problem is virtually unknown.
I was not familiar with that term, but I am aware of sleep apnea and how that can lead to too-high levels of carbon dioxide. Like I said in a different comment, my current understanding is that both too-high and too-low are problems. In my case (and in other cases where people have anxiety-like shortness of breath) I think what’s going on is too-low carbon dioxide. But having a capnometer seems useful for correcting both too-low and too-high carbon dioxide.
Can you elaborate? It seems to me that a lot of nerdy interests also “don’t generalize” in the sense that different problems are quite different from one another (a puzzle game would be boring if all the puzzles had similar solutions, and part of the game designer’s job is to make puzzles feel impossible in different ways; a mathematical theorem that was unnecessarily particular would be eaten up by a more general theorem, so major theorems in math necessarily require unique insights, so you can’t prove most theorems by using the same old tricks; etc.). So this does not seem to be a distinguishing property to me.