I am Issa Rice. https://issarice.com/
riceissa(Issa Rice)
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I’d be curious to hear about how you decided which on dewormers I should take. Maybe the answer is just “a bunch of reading on random internet posts and papers”.
I wasted the first couple years of my illness thinking my condition was psychosomatic or DP/DR, doing things like therapy, anxiety techniques, introspection/journaling, gradual exposure, and so forth. I still sometimes try some psychosomatic treatments anyway (most recently, I was trying out John Sarno/Howard Schubiner-style mind body syndrome stuff, after reading Steve Byrnes’s post and having it recommended to me). None of it really helped. I now think a lot of what people think of as psychosomatic conditions are instead somatopsychic conditions (i.e. a physical condition that results in mental symptoms). In my case, it helps that some of my symptoms clearly cannot be produced by anxiety/a psychosomatic condition (e.g. peeling and burning lips and rapid heart rate that returns to normal by lying down).
Thank you, this is good to know. I reached out to one of my doctors to see what they think of this idea. My own feeling is that 40% on a worm is too high. My eosinophils count is normal (and I know sometimes that can be normal even with a parasite), the viral illness seems like a sufficient explanation of kick-starting my chronic symptoms, I tested negative on the stool test, and I already know I have gut problems (and those gut problems seem to be explained by SIBO/leaky gut). Basically, everything I see seems to be explained well by stuff that I already know is going on, and I don’t see any clear evidence of parasites. I would still put maybe 3% on it though.
My current distribution of root cause now looks something like: 35% on autoimmune/pre-autoimmune (e.g. Sjogren’s syndrome), 25% on MCAS, 10% on dysautonomia/POTS, 5% on latent virus/viral reactivation, 5% on SIBO/impaired MMC, 3% on some kind of parasite, 17% other causes.
Only explanation for this (and the salt sensitivity etc) IMO is a hole/thinning in gut lining.
Why not dysautonomia? I am newly sensitive to a lot of things, including heat, light, and sound that don’t directly involve the gut.
I agree they are hard to fix, but a lot of nerdy interests tend to also be hard (and that seems to be part of the attraction). So this doesn’t seem like a differentiating factor.
Perhaps an intestinal parasite like a tapeworm?
I did get the GI Effects stool test done (in December 2022, well after I’d already been ill), which showed no presence of parasites. Any reason to think a stool test like this wouldn’t detect the parasites?
How do you know your infection from years ago was viral?
My symptoms during the acute infection were a sore throat, fever, large quantities of mucus and clogged nose (requiring constantly blowing my nose), and a cough (both dry and wet cough; mostly in the evenings). It felt like a cold or flu, just stronger and longer lasting (10 days for most symptoms to clear, then 5 more days after that until I felt basically normal, and then a few weeks later weird stuff started happening to me like extreme sensitivity to caffeine, and it has just kept going on for 5 years now).
GI tract pathogen
I do know I have SIBO and gut dysbiosis (from breath/stool test), but the usual treatments for these seem to have made me worse off, so my current guess is that it’s not the root problem.
I’ve always been underweight. The heaviest I got was about 115 pounds during freshman year of college. A bunch of the men in my family were quite skinny (though not as much as me) when they were younger, so I suspect it’s at least partly genetic.
I guess one of the first things to do to create/market/… an interest from labs/researchers/nerds/… would be to find other people suffering from the same illness and create/coin a name for that illness and create some association/website/gatherings/… to communicate about it like it is done for most other illnesses?
Funny that you mention this, because I was just musing about this the other day over on my personal website. Unfortunately I wasn’t able to come up with a very good name...
It must be really dreadful as it seems to be the case for you, to have a mysterious chronic illness without even a specific name attached to it (from what I understand), only a set of symptoms which (similarly to ME/CFS) can have many different possible root causes/factors.
I really appreciate you saying this!
I’ve looked at some of Sarah Myhill’s work before, and yeah, I think it’s a good example of someone seriously thinking about how to solve an illness. I wish I knew how to get more people like her to study different kinds of illnesses too.
I’ve heard of this, and may want to try it eventually. I’m starting out with things like LDN first though.
I’ve heard a lot of good things about fasting, but unfortunately I am pretty underweight (104 pounds, 5 feet 6.5 inches) and unable to gain any weight (despite trying quite hard). And when I am awake if I don’t eat for 1-2 hours I start to feel extremely weak. So those two things have kept me from thinking seriously about trying fasting. Do you have any resources or thoughts on fasting for underweight/wasting people?
I have not. I’ve been supplementing vitamin D my whole adult life, and the initial blood test showed a level of 86.6ng/mL which one of my doctors said was higher than optimal, so I lowered the frequency of supplementation and my follow-up blood test showed a level of 54.5ng/mL. Any reason I should try megadosing it even if I have adequate levels in my blood?
I’ve heard of zinc carnosine but haven’t tried it yet. I tried supplementing with zinc gluconate at one point but it seemed to be aggravating my hunger attack symptom so I stopped.
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.
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.
[Question] How to get nerds fascinated about mysterious chronic illness research?
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.
I was not. I’ve stayed indoors most of my adult life, so I think I’m at lower risk for worms. Hard to say where I could have gotten worms from (assuming it is worms).