riceissa

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

Comments

Sorted by

START TRACKING YOUR SYMPTOMS
Have a signal chat to yourself or similar. Make sure its very low friction and you've impressed on yourself the importance of tracking symptoms

What do you do with this data? Do you have any examples of insights you've gained by tracking symptoms this way? I've personally found that tracking symptoms (which I did for about 3 years, increasingly obsessively towards the end, to the point of writing this post) led to obsessing over my symptoms and that this was probably making things worse. I wasn't even gaining much insight through tracking, it was just more like "maybe someone or AI will find patterns in this at some point and be able to explain everything to me so I can get better".

(b12, iodine, niacin)

What does it feel like when you've reached capacity on these? For niacin, do you just mean flushing?

Do not buy supps on Amazon (fraud, reselling, adulteration)

Do you have more info about this? I've had good experiences buying supplements on Amazon (sticking to reputable brands and making sure Amazon is the seller). I've been doing this for years and as far as I know I've only ever gotten maybe on fake product.

I have, but my writings are pretty disorganized at the moment and probably hard for people to interpret without some sort of dialogue with me, which is probably why I invited Nicholas/Heather to message me (I no longer remember my exact thought process from a year ago when I wrote the grandparent comment). But regardless, here are some links that you can check out of learning-related content I have written (feel free to message me or reply to this comment if you want to talk more about this stuff):

Were you gardening or anything when you first got sick?

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).

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.

Load More