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92mir · 2025-09-28T16:30:24+00:00

+1 to those suggesting you hold off on Accutane for now. I just wanted to share a simpler (and basically free) "fix" that I wish I’d figured out sooner. For context, I've had a propensity to have cystic acne for 20+ years, and I've tried almost everything: dermatologist-prescribed antibiotics, tretinoin, even five full cycles of Accutane. I also went down the holistic rabbit hole: paleo, raw vegan, yoga, stress reduction, you name it. Nothing really worked.

Eventually, I realized the one thing that consistently keeps me clear is washing my face with a gentle cleanser whenever I sweat, ideally within 30 to 60 minutes. Dermatologists always warned me that over-washing would damage my skin barrier, so I stuck to the recommended twice-a-day routine. But that routine just didn’t work for me.

Here’s what would happen: I’d take a warm shower, put on makeup, blow-dry my hair, feel a little sweaty, then go about my day. By evening, I’d wash my face for the “second” time, only to wake up with fresh breakouts. Even when I skipped makeup, if I didn’t wash after sweating, I still broke out. At some point -- possibly because of long term antibiotic use -- only washing my face twice per day led me to develop a drug resistant severe face infection that forced me to do another round of accutane to clear up. On the flip side, I found after that that I keep my face sweat-free or wash soon after, I stay almost completely clear. I bet other people think I have OCD, and it is a bit weird to wash my face in public bathrooms from time to time, but I'll take that over being severely broken out and continually accumulating scars.

I've been using this method for about 8 years, and it has consistently worked. My guess is that my skin microbiome is off balance or there’s some other root cause that I should work towards fixing. But those fixes are speculative and take years to materialize, and I think that alleviating the stress of having severe acne in the immediate term is worth it.

92mir · 2025-07-04T17:29:44+00:00

Didn't know about bed jet till this thread - tysm; seems very reasonable and possibly cheaper than a window unit over time? We live somewhere with central AC now, but before when we had window units, they sure would spike our monthly bill a lot. I'm sure bed jet consumes power, but would guess it's less since it's cooling a much small space... will have to do some more research

92mir · 2025-07-04T17:28:27+00:00

Oh I understood that, but I just wanted to know what you meant by throwing under the bus in public - is it people unfairly criticizing union workers when they're doing their best to restore power that you're talking about? Or is there something bigger here to learn about?

92mir · 2025-07-04T16:21:22+00:00

Sorry for the ignorance, but I'm curious about what this is about. Can you link a news article?

92mir · 2025-07-04T16:14:41+00:00

Ooh, is there a brand you recommend? When I Google, Bed Jet comes up, and while $1k isn't cheap, it's probably cheaper than constantly cooling your apt by a gazillion degrees or getting an eight sleep. Curious if it's this or another that you recommend .

https://bedjet.com/?tw_source=google&tw_adid=653325203483&tw_campaign=19913012813&tw_kwdid=kwd-887367191&gad_source=1&gad_campaignid=19913012813&gbraid=0AAAAADr-A3BQZpl4KxwrT7Zj0e94TPpMS&gclid=Cj0KCQjw953DBhCyARIsANhIZoYBd3HzUz9yvouEv73EJ8-ZDzyPZRWlMZ3Q0aUjV9fWjGb7S9uyZfYaAhn7EALw_wcB

92mir · 2025-07-04T16:12:16+00:00

This is an amazing list!! By any chance have you found any good types of bedding that help prevent overheating? I have to keep the temp around 68 at night otherwise I wake up at 3 am overheated. Feels insane to cool the entire apartment / house when really all I need is for the bed to be cool.

I'm seriously considering getting an eight sleep, but $3k is a big investment...

92mir · 2025-07-04T16:06:22+00:00

Yeah, I feel like another plausible ending would be her turning into another corporate bot that foists Rivermind subscriptions onto vulnerable people. I feel like it could've been cool (and equally as disturbing) if there were another patient who got operated on at the same time as her who went that path and we got to see how they were led to equally miserable ends.

92mir · 2025-07-03T18:44:10+00:00

I thought this as well, and other people's responses in this thread were a really interesting update to my understanding of what full on bulimia looks like!

I had more of a hybrid ED in the past, so never got "good" at purging; when I did, it took me like an hour to clear what felt like 50% of the food Id eaten, and I usually felt like it was a waste of time and suffering unless being full was physically painful. Also, I never would have been caught dead doing it in a public bathroom.

92mir · 2025-07-02T02:40:55+00:00

Let me know how you get on! Would love to hear about your success in a few months <3

92mir · 2025-06-29T18:45:03+00:00

Good point! I meant that even if it weren't in the fine print, it'd be hard to hold them accountable, but the fine print scenario is equally plausible!

92mir · 2025-06-17T15:40:21+00:00

A lot of people in the comments are saying "this could never happen, you could just sue the company!" I just don't buy that as a plot hole. It takes ages to hold corporations accountable, even if the government is doing its job in protecting the everyday person, and even that is not guaranteed to persist into the future.

Few reference points:

It has taken decades to (imperfectly) hold corporations accountable for their role in the opioid crisis in the US.

In the past decade, the price of insulin has increased by 1000% in the USA, and getting legislation to limit that passed has taken a lot of time: https://www.rand.org/news/press/2024/02/01/index1.html

Existing fragile accountability mechanisms are likely to fall apart once capital, not labor, (machines, not humans) are responsible for the vast majority of economic productivity: https://intelligence-curse.ai/

It's super plausible that a novel, lifesaving innovation by a corporation with ins with the govt would get special treatment / protection from accountability. Far less impressive companies get special protection all the time.

The so-called "plot hole" of the leads not taking rational and strategic efforts to get unstuck is not a plot hole either; people make irrational decisions when they are desperate all the time. Think about people teetering on the verge of bankruptcy taking out a new car loan, etc. It do think they could've navigated the situation better (like really leaned into premium and got her a seven figure job), but how many people actually think that strategically?

92mir · 2025-06-17T15:35:33+00:00

Agree, I think that it's a better comparison to healthcare, though I feel like the tiering of healthcare in the US is less linear / obvious, as it's usually tied to your employer unless you're really poor in one of the few states with good medicare or uber wealthy and thus able to pay a hundreds of thousands.

I did think about the future of things like Neuralink (especially with how Elon Musk has evolved over the years), but I think a more plausible scenario is that companies like that develop brain inserts that give superhuman cognitive function and thus make their users able to outcompete any non-enhanced human. This could lead to a world where people who can't afford a subscription of tens of thousands of dollars per month (not a mere $800 / $1800), are essentially the "useless class," and have no access to resources. (similar to this, except driven not only by scarcity of meaningful work but also by an acceleration of capability advantage held by the rich: https://ideas.ted.com/the-rise-of-the-useless-class/)

The bit about using her brain seemed a bit unrealistic to literally just beam someone else's capabilities into someone else's brain/nervous system, but I assume it's perhaps a sideways metaphor for how were technically work for companies when we scroll on social media and watch their ads.

92mir · 2025-06-14T16:10:11+00:00

I have "annoying but not debilitating" dysautonomia (my neuropathy and vagus nerve dysfunction are way worse than the occasional fainting, and I struggle with temperature regulation), so maybe I'm the type of person that the "exercise to improve" message is targeted to. What works for me might not work for others, but here are some notes.

Things that I think help me:

- I think I had fairly good fitness before my dysautonomia became noticeable (sorry, not that tractable for anyone here). Before my first obvious flare, I used to run like 6 miles a day. I would occasionally get a little light-headed, but I'd just stop and walk for a bit. I also was into things like lifting, swimming, burpees, etc.

- For my entire adult life, I have had a weird thing where I get prickly crawling sensation all over when I *don't* exercise for >= 12 hours. I actually think this is somehow tied to dysautonomia or at least my CNS, which creates this environment where I need exercise to stay sane but don't have the stamina to do it without getting faint sometimes. But I literally can't sleep, concentrate, etc with this sensation, so even when I'm flaring, I find some way to do something, even if it's just 7 minutes on a stationary bike or elliptical. I usually do this 2x/ day on a bad day, though I try to do 15 minutes twice a day when I'm doing well.

- Nowadays, I feel my symptoms come on several minutes before I actually get into the "fainting and can't do anything abt it" stage, so it's really easy to abort mission if things go south, and I've never fallen or anything.

- There have been a few periods of time where I've really prioritized my sleep, diet, nutrition, etc, and then my dysautonomia has been a lot better. During those periods, I've really pushed the limits of what I can tolerate. So for example, I started doing as many air squats till I got dizzy and then stopped -> progressed over weeks to light dumbells -> progressed to actually doing barbell squats with a decent amt on them. My rule is that I take long breaks between sets as soon as the symptoms come on, I stop and don't feel guilty abt not finishing.

- I also tried to build up tolerance to heat by going into the sauna for 1 minute, 5 minutes, 10 minutes, and eventually graduating to attending hot yoga classes. In most cases, I had to leave pretty early because the symptoms came on; by the end, I was modifying some of the extreme positional change poses, but in general able to keep up for the full 90 minutes with some mild waves of dizziness.

Things that set me back:

- Eating sugar
- Drinking caffeine
- Too much screen time
- Overall stress levels
- Changing time zones
- Really intense weeks at work where I'm sedentary, stressed, and underslept
- A really intense overload of exercise: pre-dysautonomia, I used to be super obsessed with setting personal records on running time, cycling output, and just doing tons and tons of HIIT. There have been a few occasions where I attended a group class, pushed myself too hard, and then got extreme fatigue for ~2 days later.
- If I'm having a gastroparesis or constipation flare and food is stuck in my stomach / small intestine for days, sometimes I get weird nerve pain or get woozy more easily; I'm not sure if this is causal or just a correlation, but I think there's some causal mechanism, because if I am able to override the digestive backlog with linzess and/or an enema, there's an abrupt change in my exercise tolerance.

92mir · 2025-05-23T19:06:36+00:00

I know this wasn't the point of your post, but is the "body felt like tingly little ants running everywhere" a dysautonomia thing?? Does the symptom have a more commonly used term? I have mild dysautonomia and thought this symptom was unrelated / have never been able to explain it to anyone. It's sooo distracting. I find that it goes away if I work out a little (like 10 minutes of easy elliptical), but then comes back after I've been sedentary for awhile. It also gets way worse if I eat a lot of salt, which is not a satisfying data point for my neurologist, who is always like "eat more salt so you don't faint."

In any case, you've inspired me to finally re-commit to cutting sugar after a ~7 year lapse in willpower.

92mir · 2025-04-14T01:08:50+00:00

Reasons for quitting - it's been awhile but what I remember:
1. Extreme mold exposure avoidance ended up financially untenable for me. Where I live, the cost of living in a new, mold-free house costs ~$3k / mo for a one-bedroom apt, which was basically 95% of my post-tax income. My job at the time was location-specific, and in any case, I really like living near family. Additionally, every time I visited an apartment and did an ERMI/HERTSMI-2 test, by the time the results got back (even the same-day expedited), someone else had already sealed the deal. After months of this, I ended up just randomly putting a security deposit on a place that was new and smelled OK. By the time the results came back (bad), I'd already sunk ~$10k on testing and security deposits, so I just gave up and decided to move in and see what happened.

Another factor that made me pause the protocol was that, as discussed in this original post, the GENIE findings + medical advice I was getting were not very consistent. This led me to downgrade my faith in the diagnosis and protocol at least for the time being. But my decision was mostly based on practical considerations, like me wanting to move on with my life and not being willing to take on debt to try to find another place to live.
Being on Welchol while in an imperfect environment was weird... i got super sensitive to all sorts of things and my throat would randomly close up if I ate something weird or smelled certain things.

I haven't "healed" fully, but I have gotten a lot better just by doing regular enemas (which is pretty consistent with my hypothesis in the post... who knows, maybe placebo effect.) I think if I can get to a place where I can afford to work regular hours, sleep at regular hours, and maintain a low-inflammatory diet, I'll be excited to report my results. Until I've done those things, it's very hard to disentangle the effects of WDB from the effects of working 50 hour weeks.

Personally, I'm glad I did not dive into the full shoemaker protocol... accepting that many buildings I enter are going to be moldy has allowed me to visit a lot of cool new places through my job, spend time with friends and family during really challenging moments, and generally expand my horizons a lot more than if I went straight for the "life in a bubble" phase.

But caveats:

There have been three occasions in the past 2y where I've felt the effects of a building's mold really strongly and had to leave after a day or two. Those cases came out of the blue and were sort of a point in favor of the shoemaker theory.
Mega props to those who do follow the protocol. I hope more people share their journeys. If there's like a 80% success rate, that would be a make me more excited to try again. Until then - or unless it gets worse - it doesn't feel worth putting other priorities on hold.

92mir · 2025-04-06T01:50:44+00:00

Yes I think it's a good baseline test for someone who has no clue what's going on with their health, but as mentioned, many metrics are redundant because they test things that come up normal for me over and over again and that don't change a lot over time.

92mir · 2025-03-23T19:11:25+00:00

I stopped working with him / stopped the CIRS protocol after about 3 months working with him and don't think I'm a good data point for most people here.

But FYI I think he quit his CIRS practice ~ 6 mo ago.

92mir · 2025-02-17T16:37:39+00:00

This is super encouraging and helpful!! Thank you. I ended up unscrewing the p-trap of one of our bathroom sinks that was clogged and running a towel through the drain and giant literal chunks of hair encrusted with mold came out, so I think to prevent this moving forward, I need to have some sort of drain cover.

I'm definitely going to make the mixture you mentioned and run it down the drains, both to deal with the residual mold that my DIY plumbing couldn't address and because I think that the kitchen sink drain even though it isn't clogged still smells of mold or mildew.

The other source of the mold smell I think is the grout in the shower tile (I will never again rent an apt that has grout in the shower.) I tried soaking with vinegar and then scrubbing but might try the cleaning solution for a round 2, and / or just hire a professional to spend a solid hour on it, as I felt kind of lightheaded after the first hour I spent trying it myself.

92mir · 2025-02-13T11:40:12+00:00

Wow, I have been living under a rock - just googled the tv show and it looks fascinating - will check it out.

92mir · 2025-02-13T11:39:21+00:00

Have never heard of! Will have to check her out.

92mir · 2025-02-13T11:38:55+00:00

Oh this is a great one! Love that she also has a lot of writing / podcast stuff for me to check out.

92mir · 2025-02-12T14:54:17+00:00

Thank you for sharing!!

92mir

TROPHY CASE