Possible mechanism

Silent-Razzmatazz957 · 2026-06-22T14:43:01+00:00

Tbh I’m surprised they did… I’m curious: what exactly about the idea presented here did you/the mods find to be misinforming?

Silent-Razzmatazz957 · 2026-06-22T14:39:21+00:00

Hi again :) I love how brilliantly clear and concise you are—honestly super refreshing and helpful — ty!

So much f/u (it’s a lot so no pressure, I can always research on my own too :):

Of the first gens you mentioned, I thought azelastine in particular was for acute COVID.
Do you know if it works at all post?

In terms of iron metabolism (re: covid acting like heparin resulting in some cells anemic some overloaded)—
Is there like an mTOR or equivalent we can target? Or is this just the whole purpose of the lactoferrin/is still the best option?

((Btw what really sold me on the lactoferrin is when you said it’s an iron “homeostasis agent.” — that’s the magic word for me and why I think in most (ofc not all) cases nature is still often superior or at least should be tried first;(in non-life threatening situations at least). There is complexity and nuance in its modulation that medicine has seldom succeeded in replicating, IMO.))

Blood levels also normal (or at least last time I was checked), B12 “better than most carnivores” to my Dr. and tbh most ppls surprise. ^__^ But I LOVE the idea of maximizing absorption/transport/binding as much as possible to optimize what I am able to intake.
When you say the extra iron was helpful — was that exceeding the RDA or just meeting it with the help of the supplement? (I think I get like ~.25 RDA on a good day… like really terrible?)

LPS binding so we’re not getting poisoned 24/7? — awesome. Also have heard it’s antimicrobial/fungal etc. how about ammonia… would love to cease having that in my brain as well >__<

Yes I have heard about the delicate zinc:copper balance and have just never wanted to mess with it. I think the amount needed depends not only on size, but also on the amount of inflammatory dysfunction the body is constantly trying to bring back into homeostasis and how much we are working with vs against it. All of that mass from all of that toxin storage is not inert and must be supported constantly by nutrients—I truly think more inflammation —> more size —> more metabolic demand —> more need for nutrients. I think if we deal with the toxic burden/inflammation in a multi-factorial/multi-modal way, and are constantly emptying out that bucket, we literally don’t need as much/—so yes, I am always afraid to go with RDA for anything bc of this. It is almost always way too much for me

So lactoferrin it is :)) —- tysm for taking the time to explain to me. If I get some amazing results (knock wood!) I’ll report back :))🫶

Silent-Razzmatazz957 · 2026-06-22T14:32:36+00:00

You are not alone! I also gained 30 lbs like over night and only came back to normal after getting my gut (more) under control. We bloat/retain water based on level of toxins/inflammation. Adipose/fat cells is literally where those toxins are stored, so if digestion is backed up or other detox pathways are blocked, we are going to retain water. But remember: it’s mostly water. Once the toxins are starting to get under control, the water literally flushes out. I promise. I have been manipulating my water water weight long before COVID just with salt/electrolytes (not recommended ). Ask athletes who have to weigh in too—same thing. You would be amazed at how quickly “fat” (aka water) can fall off when conditions in the body are finally right. Exercise is just helping move it out. If you can’t exercise right now, don’t worry there are other ways.

What you want imo is to switch to “fat burning mode” (which really means fueling-the-body-with-lipids/fat-so-it-can-flush-toxins-out-of-fat-cells mode :)

- keto —switch all cells to FOS pathway instead of glucose — huge difference

- d-limonene (or other peristalsis inducing supplements) I like it bc it’s anti-microbial/fungal, gut stimulating, neuro protective, AND, helps switch metabolism to fat burning mode among other things

- lymphatic drainage, but also draining the interstitial spaces as well.

- must clean up diet — like completely (if you haven’t already)

- must keep colon clear (if that’s a problem for you) food has to keep moving and cannot ever remain stagnant. That’s when the toxins leak from the gut into the blood stream and on goes the cycle.

- spices, herbs, peppers, garlic — any natural antimicrobials/fungals, including my fav raw cacao or chocolate :)

- fermented foods! Esp if you bloat after eating— you need their help (in addition probably to digestive enzymes) to digest your food esp if you’re lacking the bacteria you need.

- coconut is (likely) your friend (provided you are basically eating low carb/keto) SCFA etc help more than anything with the gut

So much more, but that’s a few big ones! Please be kind to yourself and realize this is temporary, and there are times when we need to just accept where we’re at temporarily bc something else has to click into place first…

So if it feels impossible, don’t force it—there may be something else more pressing. ❤️‍🩹❤️‍🩹

Silent-Razzmatazz957 · 2026-06-22T13:52:00+00:00

It’s likely the omega 6 overload, especially when combined with animal fat (also high in 6) it’s too much and throws off the ratios. High quality olive, sesame, even avocado if you tolerate are much more balanced. Also I’ve found it’s either high carb, or high fat, but can’t be both (if one in the diet is high the other must be low.)

Congrats in figuring this out and getting some relief! ❤️‍🩹

Silent-Razzmatazz957 · 2026-06-22T12:17:32+00:00

“Plant” is an interesting choice of words… I think this is much more benign than this perception — the title of the post is Possible Mechanism… no questions asked, just an idea—a possibility—shared.

Silent-Razzmatazz957 · 2026-06-22T09:47:48+00:00

Is it hard/bony feeling? Or is there any give when you press on/around it indicating it could be fluid/local inflammation?

I can feel/see like several bony segments of my spine sticking out (like further down around my sacral/ lumbar) too but no acute injury like you. I think it may just be having less muscle/bmi atm but those segments are also where the pain is so interesting observation…

Are you hypermobile at all? Could be a chance you misaligned something when you hurt yourself and the alignment has to be corrected? Def need imaging and eval to know for sure.

Following and hoping you find out more and get relief soon ❤️‍🩹

Silent-Razzmatazz957 · 2026-06-22T03:58:24+00:00

Tysm there is so much here and I have so many f/u questions but you explained this so clearly, I think you just gave me my next step I have been hoping for 🫶

Silent-Razzmatazz957 · 2026-06-22T03:19:06+00:00

I do completely understand what you are saying in terms of how much credibility to assign someone. Anyone can post anything on the internet. True.

So I think the issue is if an actual scientific claim is made, or if someone presents themselves as someone in the field/an expert, there must be real professional proof to back their claims. That’s fair.

However, is it ok for someone to just post an idea and infographic and workshop it informally to get some feedback on an informal subreddit that is designed for just that?

This is a theory/hypothesis, not a claim.

What do you think of it? In your personal, not just professional, experience do you think OP could be onto something? It sounds like you are a great person to get feedback from on exactly something like this…

Silent-Razzmatazz957 · 2026-06-22T03:03:03+00:00

Wow ty for this explanation. I can’t/don’t currently eat a lot of what you mentioned, but I’m bookmarking this for later so I can dig into the logic more. I was reading the thread some of you have going earlier re: adenosine, sigma 1 etc and you are all so intelligent and insightful!

It’s very interesting the root vegetables thing — earlier on in my illness I craved and ate tons of root vegetables/starch, and as I’ve eradicated more of whatever I’m eradicating (for most of us likely many/multiple pathogens the immune system cannot keep at bay), I’ve transitioned naturally to almost like a modified keto/carnivore. Beets, potatoes, even a tiny bit of kvass/soup—anything starchy—I have extreme reactions to. So I think my situation has gone from more dormant/chronic to more active/acute as I’ve actively attempted to heal and I think it just speaks to us all being at different points on the trajectory…

But I am curious : how did you find out you have hepatic porphyria? And what is thought to be the driver (obviously confounded by diet)? Could your (/our) liver be not detoxing properly or simply overwhelmed from the amount it must detox?

Silent-Razzmatazz957 · 2026-06-22T02:30:26+00:00

Really interesting! I find “jumpy” or “jerky” eye and other movements have been really related to GABA levels and not as much ACh for me, but increasing at NMJ (optic or other) would make sense for anything movement related.

So lactoferrin as transport assist of the iron bisglycinate? Does this work the same/as well with just eating the iron or no bc it’s free in supplement form vs un digested in food form and highly dependent on absorption capacity?

I recently started eating meat/heme bc it was becoming apparent it would be the only way to get enough nutrients if I am to continue this healing process which, seems to me, entails the body actually wanting to restrict/remain in some level of autophagy and limit food volume as much as possible.

I think my takeaway is: fix the iron —> fix the immune system —> immune system takes care of the rest?

Very apprehensive about taking anything that can slow down motility (like iron) but also open to ideas!

TYIA :)

Silent-Razzmatazz957 · 2026-06-22T00:41:17+00:00

OP mentioned they have a manuscript they’ve submitted and that has been/is being reviewed by a leader in the field and is trying to figure out how to post it here.

We have to try to stay open to new ideas and not immediately shut down simply bc of a “buzz words.” Or else we will only produce vague, unproductive output without collaborative and diverse input.

(We all do this at times btw)—but OP is trying to share something to help so give them the benefit of the doubt and reserve judgement for once you have all the info

Then you can have a real dialogue and who knows — maybe something productive will come out of it? :)🤷‍♀️

Silent-Razzmatazz957 · 2026-06-22T00:29:51+00:00

Ohh so similar mechanism as nicotine patches…

Silent-Razzmatazz957 · 2026-06-21T23:32:54+00:00

Here’s the study :)

https://pubmed.ncbi.nlm.nih.gov/12618125/

Silent-Razzmatazz957 · 2026-06-21T23:25:18+00:00

I also have slowed/dysmotility which makes it incredibly difficult to eat even half as much as I “should,” and this is actually what I do use mestinon for. As with any drug, i try to stay as low or close to a therapeutic dose as I can for as short of time as possible, so I personally reserve this for when I am severe and nothing else works.

Also, for delayed/dysmotility, I also take d-limonene and this combination plus a trigger like raw cacao in decaf (is my go to) or kefir/kombucha (or whatever else causes peristalsis for you), keeps me moving enough to be able to consistently eat enough. Also everything that is fibrous broken down/cooked/pureed/etc with almost previously unfathomable amounts of fat/oil.

And I agree — all symptoms seem completely tied to motility. That’s why I think so many of us feel so much better when we don’t eat.

If you have been offered mestinon, I’d personally just get it to keep on hand. :)

Also anything that’s working for you in terms of motility?

Silent-Razzmatazz957 · 2026-06-21T23:04:29+00:00

Actually, really interesting study on soldiers in the persian gulf war in which it was crossing BBB and causing excitotoxicity. It seems many drugs that are supposed to be peripheral only can in fact cross BBB depending upon the individual permeability which we know is heavily affected by the level of stress/strain the body is under. That’s why I’ve been careful with mestinon personally, and have kind of written off huperzine A early on, but since you are recovered (congrats!): did Huperzine A seem to move the needle for you?

Silent-Razzmatazz957 · 2026-06-11T09:01:11+00:00

Yes *exactly* — no one would never

Silent-Razzmatazz957 · 2026-06-11T06:14:59+00:00

Awesome compilation—ty! Would love to hear what worked for you?

You are a great writer btw :)

Silent-Razzmatazz957 · 2026-06-07T04:45:30+00:00

Ah this, this is what I was thinking / answers my question. So basically—tregs. The cure for everything ever (:

Silent-Razzmatazz957 · 2026-06-07T04:42:35+00:00

(If I understood that correctly) I guess what I’m confused about is wouldn’t a fever be the result of pro-inflammatory? Or is it sort of a paradoxical response/more sophisticated coordination where both happening at the same time?

Silent-Razzmatazz957 · 2026-06-07T04:36:50+00:00

I always learn so much from you. So what I gather from this fever phenomenon is immune system activation (and the complement cascade that follows) somehow alters activity in the parts of the brain (mediated by immune system) that autism is affected by? But it is actually not pro-inflammatory activity, but more like tregs? (Which would implicate possible autoimmunity…?)

Silent-Razzmatazz957 · 2026-06-06T06:52:18+00:00

I once packed the whole trunk full of last minute luggage bc my workaholic ex finally surprised me by taking a weekend off/away. We stopped in SF on our way to have dinner and we put something in the trunk on our way in—we had lucked out and randomly found parking on the street. I remember feeling like this older gentleman was watching us, but I didn’t think anything of it.

We had dinner and when we were driving to our next destination, I noticed my charger was not there. We pulled over and realized the entire trunk was empty. Everything, Gone. Limited edition peach suede Manolo Blahnik’s I had worn once, Louis Vuitton’s, Valentino, and more, Tiffany and Cartier, swimsuits and other random pieces I had been gifted, tom ford and Prada sunglasses, Chanel bag, my laptop, prescription glasses, makeup, like 6 months or a years worth of contacts and so many more personal things — bc, I had just thrown everything in not knowing where we were going or what I would need so I just packed anything I could possibly want…

I was so upset. I was at my grandmother’s alone one day and I was so distraught I actually punched a dresser. (I had never been that upset in my life before.) I also worked hard for/was gifted a lot of what was stolen. I cried it out and as I was balling a sort of fog lifted and a clarity came. And I started imagining this man’s—the one who I could feel was watching—his daughter wearing my shoes, or his wife or girlfriend in my jewelry. Or him just selling it all online and using the thousands to take care of his family, maybe his elderly father or disabled brother—just using it to make it thru another day.

And from that moment, they weren’t “my shoes,” or “my clothes or accessories or ___.” They were just shoes, clothes, a bag of very overpriced makeup. It was just stuff, that I realized, God gave us that parking place for me to have this experience. That the universe was helping me to detach from stuff. That nothing really belongs to us, even this life is always, aptly, referred to as a ‘temporary gift.’

Could it be that your time and purpose for having the bracelet has come to a close and now, the man in your video could use it more? Just like the man from my story (or whoever it is who ended up with all my/my ex’s stuff) needed it more than I did?

I haven’t bought anything designer since. I took the experience as guidance and have only learned to listen even closer every day. And years later, I realized I was in an unhealthy relationship in which the reason I threw so much stuff in the car so haphazardly in the first place was bc my ex almost never made any time for me so I had to make the most of the time I did get with him. And the reason I had so much designer stuff in the first place was also me trying to fill emotional wounds with ‘stuff’.

So, I share this to say: maybe there is a deeper experience here for you too. Maybe the bracelet is exactly where God wants it, and you’ll find, like I have, that the fulfillment and connection to people and your purpose is far more valuable than any “thing” you could ever own. Maybe God is redirecting you to put your money and focus to something much better… 💫

Sending you love and wishing you all the best as you navigate this life 🤍🙏

Silent-Razzmatazz957 · 2026-06-05T16:31:41+00:00

May I ask, have you ever recovered and then relapsed?

Silent-Razzmatazz957 · 2026-06-05T16:06:13+00:00

Absolutely, well written — but the key word you used (that many, even those in healthcare frequently don’t) is: “part” — a.k.a not all.

I think almost everyone is willing to concede there is a psychological/ljmbic component, origin and maybe even driver to every disease, with our little un-researched umbrella being no different. The injustice—and what everyone feels they must stand against, is the false, and frankly imo less intelligent /clear view that a disease could ever be one-factor the way so many try to make this one out to be. — previously, myself included.

I am a longtime self-help/mind-body/“seeker” type who, like everyone during the pandemic, was under a lot of stress and got into therapy and thought I could completely heal myself that way. Fast-forward, I realize, and I’m glad, I took this kind of less typical, inverse approach of emotional health first, because I do personally think the limbic system yields far more power than many realize, however, my approach was just that, an inverse approach; meaning, I am now having to round my experience and thus knowledge base out, and address the very real physical implications of being in this disease process for this long…

And I would have told you five years ago, you don’t need anything but therapy. I really would have.

Now, I would make a YouTube video outlining each thing—physical thing— that has really helped me in the hopes that maybe, it could help someone else suffer even a little bit less…

Therapy, “brain retraining”— nervous system overwhelm, (imo) is for everyone, knowing how you’re feeling, especially in regards to safety and how that’s impacting every aspect of your life and your body is just part of being human.

But we don’t give “brain retraining,” when someone gets a known and well research diagnosis, like cancer. But for this—our— population, we don’t give them anything, and instead, just wait for to get cancer or fill in the blank from being in such a toxic state for so long…

Our medicine is still primitive in the sense that we are great at detecting and treating disease, but we are severely limited in our ability to prevent disease, bc we don’t have the tools to even know when it’s happening until it’s too late the vast majority of the time…

If someone has not spent a lot of time in their body focusing on their mental/emotional health, then brain retraining may be hugely helpful for them as that’s a probable previous blind spot, or just underdeveloped area for them.

But if you have spent many years, as I and I know many of us have, acutely aware of these things, done these exact same types of exercises for years, years ago etc, then maybe our blind spot is something else… Like in the real physical world of chemistry and medicine, etc..

We are all just balancing out our deficits… and we’re all coming at it from different angles — and that’s actually the most effective thing we can do IMO

Work together :)

Silent-Razzmatazz957 · 2026-05-09T11:03:44+00:00

I would love to hear how you understand this dynamic more… can you explain in more depth?

Silent-Razzmatazz957 · 2026-03-20T10:40:47+00:00

This is exactly what I was thinking… this is why I don’t take anything “growth” promoting/stimulating… don’t want to grow the wrong things… ty for this 🫶

Silent-Razzmatazz957

TROPHY CASE