riceissa

I am Issa Rice. https://issarice.com/

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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.

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