Anyone familiar with the RCCX theory? If you have POTS, MCAS and EDS this is for you!

Anyone familiar with the RCCX theory? If you have POTS, MCAS and EDS this is for you!

Created by an MD who also noticed an overlap in many of the conditions listed, but also in other things like personality type, mostly being female, family history, PTSD, POTS and EDS. Tons of good info to use as a jumping board for further research or hopefully to help you connect any personal theories you've been toying with on the intersection between immune disorders and neurodivergence!

https://www.rccxandillness.com/

u/TRExploration — 4 days ago

So excited to find you guys! First question- who has BOTH PMDD and tics/tourettes?

pasting what I just posted elsewhere- Asking because I do (mild and transient). Aside from stress, my tics only really happen during certain months high in ragweed allergens, after smoking cigarettes, or after hanging out in very moldy enclosed spaces. This tells me there is some kind of immune or allergenic component, which implies mast cell activity. Coincidentally I also have MCAS.

There's a connection between PMDD and MCAS. Not always, but still notably co-occurring. Same for ADHD which I personally believe has a neuroimmune component (if anyone has any info on this topic please share!!). I just learned that Isoallopregnanolone (Isoallo / Sepranolone) has been used as a possible treatment for PMDD, the mechanism being that it blocks the effects of allopregnenolone which forms from progesterone. This is theorized for why the symptoms occur during the progesterone spike in luteal. Isoallopregenolone is also being studied for tourettes/tics and is extremely promising. I'm wondering if whatever imbalance is going on is immune dysfunction related given the PMDD x MCAS cross over, the PMDD x OCD cross over, the PMDD x ADHD one, and given the correlation between stress/trauma and autoimmunity and that PMDD also has this stress/trauma connection, and for ADHD there's a whole book on why it's actually just CPTSD. I don't fully agree with that last one, I'm just trying to illustrate that there is an established connection to immune system dysfunction specifically and trauma, and that these related conditions have notable connections to trauma and the immune system. The specific of course not being quite clear yet.

To support that hypothesis I'm seeking PMDD people who also consider themselves to have some degree of tics/tourettes. If you do not have both of these but have something to add I'm all ears!

note: I chose the tag because all of the established points are based on peer reviewed research, the points discussed might help people seeking research to better understand the condition, and I'm hoping to attract people who are willing and able to speak on the neurosteroid theory of PMDD. If I need to link the studies supporting this to keep the flair I will- they're commonly circulated here but just lmk.

reddit.com
u/TRExploration — 4 days ago

Does anyone here suffer from Tourettes/tics?

Asking because I do (mild and transient). Aside from stress, my tics only really happen during certain months high in ragweed allergens, after smoking cigarettes, or after hanging out in very moldy enclosed spaces. This tells me there is some kind of immune or allergenic component, which implies mast cell activity. Coincidentally I also have MCAS, as I think a lot of people in this sub do too iirc.

There's a connection between PMDD and MCAS. Not always, but still notably co-occurring. I just learned that Isoallopregnanolone (Isoallo / Sepranolone) has been used as a possible treatment for PMDD, the mechanism being that it blocks the effects of allopregnenolone which forms from progesterone which is why the symptoms occur during the progesterone spike in luteal. Isoallopregenolone is also being studied for tourettes/tics and is extremely promising. I'm wondering if whatever imbalance is going on is immune dysfunction related given the PMDD x MCAS cross over, and given the correlation between stress/trauma and autoimmunity and that PMDD also has this stress/trauma connection.

To support that hypothesis I'm seeking PMDD people who also consider themselves to have some degree of tics/tourettes.

reddit.com
u/TRExploration — 4 days ago

Peptide or growth factor products without hyaluronic acid and niacinamide?

I have looked at 50+ products and every single one had one or the other. Most of the time it's not even advertised, but at least one is in there. Doesn't have to be a peptide or growth factor, but I just want it to be one that has some new interesting mechanism that's not just a luxury vit C/exfoliating/retinoid product. Can someone recommend a "high tech" formula that they know with reasonable confidence it does not contain one of these ingredients?

There's so many cool things hitting the market with awesome science and innovation. I just wanna join in on the fun without spending $300 for a bottle of skincare that ends of causing sensitivity break outs :(

reddit.com
u/TRExploration — 1 month ago
▲ 2 r/Lyme

Crowd Sourcing Research- If you have Babesia and had blood work in the last year, was your MCV value in the "CBC" (complete blood count) elevated?

MCV is one of the values on your blood count panel, and when it's elevated it indicates your red blood cells are fragile or being destroyed as above average rates. It can be caused by moderate-high alcohol consumption (drinking more than 3 days a week) and by low iron or B12 which causes anemia. My question is for those who are 1) symptomatic 2) have babesia specifically and 3) are not anemic and regular drinkers - is your MCV elevated?

I have babesia and have an elevated MCV, I am almost certain my mom does too and hers is elevated as well. I've gotten to access a few other people's blood work who have "mystery illness" symptoms and they have elevated MCV despite not being anemic too and I've wondered if their mystery illness could be tick-infection related. I'm curious if your experiences support the hypothesis that Babesia can cause MCV given that it lives inside red blood cells.

If you know you specifically have babesiosis and have been tested then please lmk if it's elevated or regular!

Mine was normal-high a few years ago, but now it's consistently elevated.

reddit.com
u/TRExploration — 2 months ago
▲ 17 r/raypeat

Good faith discussion: is ray peat's theory based on faulty assumptions about certain bio-mechanisms? Anyone here familiar with Jack Kruse?

Disclaimer: I'm a big fan of Ray Peat. I am completely agnostic on which dietary paradigm gets it right, though I suspect Peat gets it right more than most. This is an attempt to find someone who might be able to shed light on some of the conflicts I've come across, not to insult this sub.

I'm wondering if someone here is familiar enough with Jack Kruse's work to give their input. I'm a bit fuzzy on Kruse's specific mechanisms but the gist is that the Krebbs cycle fundamentally relies on a faulty premise and that's why Peat's philosophy has some serious holes- though Kruse agrees with a lot of it.

The reason why I'm open to Kruse's push-back is that I've learned an alarming amount of what is taught in biology/medicine is actually not fact but theory. For example, Gilbert Ling was a famous biophysicist researcher and makes a strong case that the concept of the cell membrane potassium/sodium theory is an incorrect model. If this is true, then the concept that PUFAS being toxic because it creates an ATP tax related to a leaky membrane forcing the membrane pumps to work extra hard is false. Now I think PUFAS are problematic and intuitively they did not constitute a significant portion of our evolutionary diet and for that reason alone deserve skepticism about their place in our diets. So I am not saying the cell membrane pump theory makes PUFAS ok, I'm just saying their damage isn't due to transport proteins having to work extra hard like Peaty proponents claim. I do think Gilbert Ling is worth checking out, he's got a website that reminds me of Ray peat's style. This one explains his theory which will probably only be interesting to those with a strong cell bio background https://gilbertling.org/pdf/A-400-Word-Summary-of-the-Association-Induction-Hypothesis.pdf This one I think is super interesting for anyone generally interested in health and is an easier, fun read: https://www.gilbertling.org/why_science-cannot_cure_cancer.html

Back to Kruse- An example of where he diverges from Peat is that he is big on fatty fish and argues there's something naturally contained alongside the fish PUFAS that nixes the oxidation issue and stabilizes them (or something like that). He's adamant that supplementing fish oil is toxic for similar reasons to ray peat, but argues we still need it in its natural form for a bunch of reasons that are out of my abilities to coherently summarize. This tracks given that fishing has been a major source of food for most early civilizations, and it's this reason that I'm just having a hard time accepting that fatty fish really is as problematic as Peat claims.

I'm just looking for someone knowledgable about cell biology who is open to discussing how there could plausibly be merit on the idea that the Krebbs cycle is in fact an incomplete understanding of how our food generates ATP. I understand people are report life changing benefits from Peaty living, but the same can be said for the cult following of Jack Kruse. I'm hoping to make sense of some of the intuitively inconsistent aspects of Peat's work and to compare these two views.

reddit.com
u/TRExploration — 2 months ago

High cortisol - ideas?

Very high cortisol. Ongoing for almost a year now. Cushings unlikely. Years of extremely low carb dieting. Past 2 years have been consistently moderate to high carb. Breakfast first thing in the morning. No intense exercise or unusual life stressors, probably the least stressed I've been in many years. Every possible thyroid lab you can think of has been ran and is in optimal range.

I generally get 7-8 hours of sleep but about once a week it's 5-6 hours. I'm skeptical that would push me so far out of the normal cortisol range given many people regularly get 6-7 hours. Anyone deal with something similar and figured out the cause? Tested roughly every 3 months for a year now and it's only getting worse. Other hormones appear fine with mildly elevated estradiol.

Prolactin was within range. Haven't tested progesterone. Waiting on an oral glucose tolerance test. Dr. thinks insulin resistance is the cause and wants me to go back to low carb and modified fasting but that contradicts everything here. Brain storm some possible causes with me? Anyone in a similar situation?

reddit.com
u/TRExploration — 2 months ago

Any Eastern European People Have Links to Cool Health/Biohacking Websites in their Native Tongue?

Google suppressed a lot of the OG health and biohacking blogs from the pre-pandemic era. I used to get great info from them, stuff that is coming out as scientifically valid now 10 years later but at the time was either unheard of or ragged on by mainstream science. I'm not sure if you guys noticed but in 2020 pretty much all good "alternative health" websites were removed from searches unless you knew to include the actual name and therefore would've had to know it existed already. Across the board popular "alt" health websites reported a 99% decreased in organic traffic overnight and I can feel that in my search results, it's all vaguely relevant AI slop and ads now.

I've come across tidbits of really cool info from Russian studies or even this great Hungarian researcher's ideas that I stumbled upon through random comments on Reddit that directly linked them. Now I'm coming here to deliberately ask you guys if you have any hidden gem blogs or websites that talk about genuinely insightful/novel/useful health info, preferably in another language to really shake things up? I want the Indie darlings, the websites that tell me unexpected science back info and don't try to sell me their shit- none of that mindbodygreen or Dr. Axe bs.

reddit.com
u/TRExploration — 3 months ago
▲ 118 r/degoogle

Is there any search engine that will give me websites solely based on matching my search content without a biased agenda? Like a 2014 Google?

TLDR: Is there a search engine that acts like Google did 10 years ago, where you just put the words in you want and it shows you a plethora of solid content that matches your key words without prioritizing ads and AI-slop websites? It seems like all the Google alternatives I've tried like DDG aren't that much better? They seem to have less indexed websites and just as many ads so the stuff I want isn't showing up

In 2019/2020 Google removed pretty much any legitimately useful "alternative" or holistic health website (aka ideas departing from big pharma's narrative) from it's search results. That content changed my life in terms of helping me understand and mitigate the health challenges that doctors were useless for and there was SO MUCH of it! Now even if I search a perfect match to a webpage's content I only get the same 10 mainstream websites that are barely relevant with zero educational value, and if it's not one of those then it's a BS add article for supplements or testing.

I remember reading something a few years ago and apparently all the big names from alternative websites got together to compare what was happening and across the board, overnight, their organic traffic dropped by 95-99.9%. Obviously that means they are being intentionally suppressed.

My question is- how can I find those websites I used to access?? Yandex gives me a little more than Google, but it's recently become too censored and advertisement heavy to be useful. Duck Duck Go also didn't work, it was all advertisements which tells me they're prioritizing results that pay them. It seems like the alternative ones don't have enough indexed websites so they have less to display even if

reddit.com
u/TRExploration — 3 months ago

Struggling to find palatable HCLF peaty recipes due to food intolerances

I can't eat nightshades- so white potatoes and tomatoes are out. Can only eat small amounts of gluten, so pasta is in but without tomatoes and trying to moderate fat intake I'm not sure how to dress it. I seem to get cold sores with too much citrus, so OJ is out. Beets also seem to produce cold sores. I can't have more than about 4 eggs a week due to some unrelated issues, so that limits things too.

I'm left with sweet potatoes, carrots, apples, maple syrup, and some fruits. But organic fruit is ridiculously expensive these days - $6 for a pint of blueberries that gives me ~60 calories. I'm begging you to share ideas. I've browsed some of the peat-y recipe websites but the recipes are either too labor intensive for my current very busy schedule (not possible to change atm) or include nightshades.

Take pity on me and share some recipe ideas. PLEASE. Right now I'm working with sweet potatoes and meat, chicken and rice soup, carrot coconut oil salad, some kind of asian rice noodle soup, yogurt with fruit, aaaand that's about it.

Edit: oh and I'm pretty sure excessive dairy is making me fat. A large yogurt serving a day is fine but I blew up from trying to have a huge milk coffee every day, granted it wasn't low fat milk and I'm not sure how important that is assuming my calories are still in range.

reddit.com
u/TRExploration — 4 months ago

My skin unfortunately dislikes a few super common ingredients and I love skin care but I'm having trouble finding anything within the parameters. I also can't do BHA (AHA is good though) or a super botanical heavy formula. There's a few drug store formulas that work but I'd like to find something that's cosmetically elegant without these triggers. Pretty tall order but I thought I'd ask just in case!

Edit: sorry for not specifying what kind. I'm so desperate for good skincare that doesn't have these that I'd be happy to discover any prodcut that fits this criteria. Skin type: Combo. Top concerns are aging, hydration, texture and dullness.

reddit.com
u/TRExploration — 6 months ago
▲ 65 r/Rosacea

I was the person who claimed to react to EVERY single skin care intervention. I had tried all the ones touted as so gentle and still had issues 100% of the time. In the ~2 cases where I didn't get rosacea breakouts the formula eventually caused pimples due to comedogenic ingredients which I'm only moderately sensitive to. It was so weird because makeup was fine, I could handle fragrance and alcohol and had zero issues with any random brand off the shelf- provided it was not a "skin care infused" makeup product.

First I figured out that anything with salicylic acid is a no-go, and same goes for any chemical exfoliators. That info was readily available on these subs as is the advice of avoiding botanical heavy formulas. And it was definitely true and helpful. But even then after being so careful in choosing Rosacea friendly products, I STILL had issues. I tried 90% of the products I see mentioned in this sub and still had issues.

It would seem like I just have the most reactive skin in the world, but that doesn't make sense because I could use literally any makeup off the shelves without issue. It had to be something specific to skincare. I frequently saw on this sub that everyone has unique triggers which is true, but kinda misleading. I spent countless hours comparing formulas to try to narrow down whatever niche ingredient was causing me issues that others didn't have. I will spare you the details of years of detective work that culminated in this recent and simple discovery, but essentially it turns out that I'm not insanely reactive. I just react to two of the most common skincare additives, giving the illusion of reacting to everything.

  1. Hyaluronic acid in all forms. Guess what is in pretty much every "gentle" skin care product? Yes this is supposed to be good for Rosacea skin which is why I never suspected until I heard others on here notice the same. In some cases the molecules are designed to be extra small to penetrate deeper, but when you have a compromised barrier it penetrates too deep causing a reaction. The other issue has to do with it drawing water in the wrong direction (though I always used it on damp skin and live in a humid environment..)
  2. Niacinamide. If there's no HA, there's usually niacinamide.
  3. Propelyne Glycol, Butelyne and Pentalyne Glycol - but only in higher concentrations. Turns out penetration enhancers being too high on the ingredient list and/or containing too many different types also caused issues because again the name of the game is barrier dysfunction. Anything that makes a formula penetrate deeper will penetrate TOO deeply on a weak barrier and cause irritation. This was the biggest key in understanding why I could handle most makeup formulas but not skincare. Because the former is specifically designed not to penetrate you skin!

Now I have so much more freedom in choosing skin care ingredients. I used to think it was just a random tossup with a 99% chance of a reaction. Now that I know it's just these common ingredients plus the penetration issue, I have finally been able to buy skincare that doesn't break me out!

So before you give up and tell yourself you're too sensitive for skin care, take a look at all the "gentle" formulas that still gave you issues and see if they had one of these 3 things in common.

*note: I also found out via ChatGPT that Oleic Acid is "One of the most powerful naturally derived enhancers; creates “pores” in lipid layers." I noted it because I just saw someone saying they breakout from it. Haven't investigated it for myself yet, but with penetration enhancers you can and will have them, they just need to be minimized as much as possible. If there's an enhancer in the top 3-4 ingredients then def skip it.

*Also adding in my edit that I do breakout from SOME Squalane formulas so that's something to watch for too. I tried pure squalane a few years ago thinking it was one ingredient and skin identical so it had to work, but it caused a huge T2 breakout reaction. I've had it mixed in to some makeup without issue though. I think the difference is that some are formulated from shark fins, some from sugar, and some from olives. I believe the ones from olives break me out because olives are naturally very high in salicylates which is the basis for salicylic acid which is a big no. But that's not a new trigger, olive derived squalane just belongs in the "botanical" category potentially.

ETA for my routine, copy and pasted from a comment:

This is all a pretty new discovery, and less is still more with Rosacea. But before I was afraid/unable to use literally any skincare so this is a big step up. I use two products which is incredible considering I've spent hundreds on products but couldn't even find ONE to work.

I oil cleanse starting with MCT oil from Malezia and I highly recommend! Not all MCT oil is created equal especially if you have any fungal issues which many Rosacea sufferers do due to compromised barrier. Then I wash it off with a discontinued facewash by Avene but they have a similar one called XeraCalm that I've had decent luck with.

I wait for my face to fully dry, like 15+ minutes. THIS IS KEY because moisture increases penetration. Then I'll use azelaic acid cream that's just a generic form of finacea gel. I had it sitting in my cabinet forever because I was afraid it was break me out like the 5 other azelaic acid formulas I'd tried prior. This one is more clinical so it doesn't have the botanicals or hype ingredients which I consider Niacinamide and HA to be. Low and behold no reaction.

I also use Amlactin which sounds crazy but my skin loves it. Not every night, but a few times a week when I don't use azelaic acid. I used it in a pinch once and noticed it stung but never caused a breakout. Revisited it with the new knowledge and decided maybe it wasn't a fluke. So far so good but it will sting. My face doesn't normally sting as a "reaction" to things, this is just what Amlactin does FYI. Probably bad for those prone to stinging.

Picking up Eucerin intensive relief today as I wanted a Urea moisturizer and chat helped me figure out this one was best based on the sensitivities/penetration issues I outlined. Urea has its own potential to irritate so we'll see how it goes.

reddit.com
u/TRExploration — 6 months ago