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Thread: Ranty post: Is it all just a bit ridiculous?

  1. #1
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    Default Ranty post: Is it all just a bit ridiculous?

    I suppose this is a bit ranty. It's not intended to be ranty at anyone but ranty at rosacea and everything to do with it.

    Rosacea may be possibly the most ridiculous disease ever - in terms of the research! I think there are a lot of scientists out there laughing their heads off at us.....


    Where on earth is the starting point? From my reading - rosacea has been linked to just about everything going - from mites to yeast infection - it's bonkers.

    Rosacea people have:

    Higher percentage of the demodex mite
    Lower levels of HLC (stomach acid)

    it's also caused by:
    not enough good bacteria (probably because you took antibiotics once or something)
    hormones
    yeast - candida
    fungal infection

    these lists go on and on - so which is it?

    Yeah my rosacea gets worse just before my period, but it's not as if it vanishes the moment I come on. I also get indigestion from time to time - so is it pms or tummy problems. Should I quit the antibiotic treatment my doctor has put me on and go on a gut flora diet? See how it all contradicts each other?


    Not only does there feel like a thousand different causes, there's a thousand different treatments - some people swearing by tea tree oil, others by laser therapy, others by high strength acne pills, using a gentle cleaner, some using a chemical peel...... I mean for goodness sake - you couldn't get a more ridiculous list of contradicting potential 'cures'.


    What exactly is rosacea? Broken blood vessels under the skin? If that's the case, why do I have spots? If it's to do with flushing, why do I have it only on one half of my face? Again none of it makes sense.


    I'm sure lots of people feel the same way but I'm so fed up. I'm tired of reading things and becoming even more confused rather than feeling like I'm getting clarity. I'm just not able to put a plan together.

  2. #2
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    So funny. And sadly, so true! Yes, it's ridiculously confusing!

  3. #3
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    Quote Originally Posted by kfoster42 View Post
    I suppose this is a bit ranty. It's not intended to be ranty at anyone but ranty at rosacea and everything to do with it.

    Rosacea may be possibly the most ridiculous disease ever - in terms of the research! I think there are a lot of scientists out there laughing their heads off at us.....


    Where on earth is the starting point? From my reading - rosacea has been linked to just about everything going - from mites to yeast infection - it's bonkers.

    Rosacea people have:

    Higher percentage of the demodex mite
    Lower levels of HLC (stomach acid)

    it's also caused by:
    not enough good bacteria (probably because you took antibiotics once or something)
    hormones
    yeast - candida
    fungal infection

    these lists go on and on - so which is it?

    Yeah my rosacea gets worse just before my period, but it's not as if it vanishes the moment I come on. I also get indigestion from time to time - so is it pms or tummy problems. Should I quit the antibiotic treatment my doctor has put me on and go on a gut flora diet? See how it all contradicts each other?


    Not only does there feel like a thousand different causes, there's a thousand different treatments - some people swearing by tea tree oil, others by laser therapy, others by high strength acne pills, using a gentle cleaner, some using a chemical peel...... I mean for goodness sake - you couldn't get a more ridiculous list of contradicting potential 'cures'.


    What exactly is rosacea? Broken blood vessels under the skin? If that's the case, why do I have spots? If it's to do with flushing, why do I have it only on one half of my face? Again none of it makes sense.


    I'm sure lots of people feel the same way but I'm so fed up. I'm tired of reading things and becoming even more confused rather than feeling like I'm getting clarity. I'm just not able to put a plan together.
    Your spot on, my opinion and this my opinion, keep it simple, a good diet and a simple wash routine, and moisture with anti redness included, treat dermodex mite once a week, that's me in a nutshell, Regards john.

  4. #4
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    Quote Originally Posted by kfoster42 View Post
    I suppose this is a bit ranty. It's not intended to be ranty at anyone but ranty at rosacea and everything to do with it.

    Rosacea may be possibly the most ridiculous disease ever - in terms of the research! I think there are a lot of scientists out there laughing their heads off at us.....


    Where on earth is the starting point? From my reading - rosacea has been linked to just about everything going - from mites to yeast infection - it's bonkers.

    Rosacea people have:

    Higher percentage of the demodex mite
    Lower levels of HLC (stomach acid)

    it's also caused by:
    not enough good bacteria (probably because you took antibiotics once or something)
    hormones
    yeast - candida
    fungal infection

    these lists go on and on - so which is it?


    Yeah my rosacea gets worse just before my period, but it's not as if it vanishes the moment I come on. I also get indigestion from time to time - so is it pms or tummy problems. Should I quit the antibiotic treatment my doctor has put me on and go on a gut flora diet? See how it all contradicts each other?


    Not only does there feel like a thousand different causes, there's a thousand different treatments - some people swearing by tea tree oil, others by laser therapy, others by high strength acne pills, using a gentle cleaner, some using a chemical peel...... I mean for goodness sake - you couldn't get a more ridiculous list of contradicting potential 'cures'.


    What exactly is rosacea? Broken blood vessels under the skin? If that's the case, why do I have spots? If it's to do with flushing, why do I have it only on one half of my face? Again none of it makes sense.


    I'm sure lots of people feel the same way but I'm so fed up. I'm tired of reading things and becoming even more confused rather than feeling like I'm getting clarity. I'm just not able to put a plan together.
    Oh my Jesus!! Why did I have such a catharsis after reading this?! Lol. Because it's TRUE! It's pretty amazing when you consider what a fricken riddle all of this is![i have spots on one side too]. I'm just getting off the Demodex wagon after giving it about 4 months.[3 months soolantra and 1 month TTO]. I wish I had some advice but all I can offer is empathy. How can anyone not have a drink after dealing with this thing for years;)

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    I think the reason we see such a multitude of suggested causes for Rosacea is that the medical community has only relatively recently had the tools to look at the last few steps of the inflammation chain; previously we had to take the shotgun approach and look at anything that could remotely be believed to cause the problem - we didn't have the tools to do what we do now. This meant many diverse etiologies were considered and investigated - mites, SIBO, stomach acid, H. Pylori, etc etc. It's akin to being given a number and then being asked to find the equation that gave it - there's many possible ways to produce inflammation and lesions in skin, but only by working backwards from Rosacea symptoms can we find the exact root cause. We are getting better and better at doing this and recent studies have started to really narrow down what's going on with our awful skin.

    Which brings me to your question of what is really going on. I'm certainly no expert, but I've read a lot of the literature out there and have formed my own understanding as follows:

    something* is causing Cathelicidin LL-37 to be released into the skin > this triggers Mast cells to degranulate (release) their inflammatory compounds > inflammation is caused (neutrophils attracted to the site) + triggers Mast cells to produce more Cathelicidin LL-37 > blood vessels dilate > persistent, visible redness = Rosacea (Erythrotelangiectactic / type 1 / no P&Ps in this case).

    Basically the findings by Gallo & team in this article from the end of last year sound to me like a big part of the answer. As to what the something* is? I'm betting it's a base genetic mutation causing over activity in our brains in the area(s) that effect nervous activity in the head and neck areas. How else could this be so precisely restricted to those areas and not the hands, arms, feet, legs? It's just impossible to ignore the fact that this affects pale-skinned redheads so much more than anyone else. It has to be genetic.

    The blood vessels are not broken, they're intact, just constantly vasodilated. Also, new vessels are unfortunately growing (angiogenisis & neovascularisation) all the time with Rosacea, due to the natural response to inflammation, which doesn't help. The good news is that with new research findings we're getting closer to a real treatment, because we know where we can interrupt the inflammation cycle (which is what rosacea is, nothing else). In the above study, Cromolyn Sodium is proposed as a new treatment. We didn't have this backed up through science prior to now, even though it's been tried previously. A real clinical trial is taking place - very exciting!

    Hopefully this wasn't out of place here; I'd been wanting to write this out for a while and this seemed like a fitting place.
    Last edited by tica; 28th July 2015 at 10:37 AM.

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    No, no - not out of place at all!

    It's good to hear that people are finding it all as ridiculous as me and good to hear why so many proposed reasons/treatment have been put forward!

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    i feel the same way, there are so many potential causes that i get lost at what should i do. As to tica's idea about a problem in some brain area, that seems interesting, and i didn't heard about it yet. But if that's the case, why then using steroid cream extended my affected area? There's also the question of not being able to sweat on face (i don't know if that's the case for everyone with type 1?). Somehow i think if anyone finds the answer and solution to this problem, it will be at least halfway to find rosacea cure.

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    Hi babadah,

    I haven't read up on the mechanisms of damage caused by steroid (I'm guessing hydrocortisone?) application and only know of the "thins the skin" and steroid addiction concepts. So I can't really say why it extended it. Maybe it took vulnerable skin that was on the way to presenting rosacea symptoms "across the line" so to say. As for sweating, I myself can sweat from the face (especially forehead) so I don't have that particular problem myself.

    The more I think of the nervous system being the root cause the more I like the idea; it's one of the only logical ways I can come up with to explain why such a precisely delimited area is affected then the neighbouring region isn't. Different nerves control / innervate different body areas. For example the ulnar nerve innervates the two smallest fingers. Cut that and they stop working. Same for all regions of the face and neck, etc. To me it makes sense that if those nerves are carrying too much signal (for lack of a better wording) or even worse an aberrant signal then of course the end target is going to behave unexpectedly. Using myself as an example, I have persistent facial redness, yet my neck is perfectly pale. You can also notice that facial redness stops just before the ear in a perfect line (next time you see a face with redness, take a look) - why is that? To me it screams nervous involvement as the skin there is no different than on the face (from what I know).

    Now I'm just blabbering, but hopefully you get my gist. For anyone else feeling lost like OP, I found empowerment through knowledge gained just by reading up on the research on Google Scholar and on PubMed Central.

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    I tried to respond to this a couple of days ago but my post was sent to a moderator and I think it's been lost in a hole.

    I noticed that you can buy Cromolyn Sodium in the form of nasal spray - apparently it's a perfectly safe allergy medicine for people who get hayfever - safe enough to give to two year olds.

    I wonder if instead of up your nose you can spray it on your face..... possibly not the wisest move but hey I've heard of crazier things.....

    I've been looking at the whole link to vitamin D - i was tested a while ago, it was a blood test for something else, but actually the results came back that I was deficient, I went back and was retested about 6 months later and was deemed 'satisfactory' - of course you have no idea what your actual levels were.

    All this research that they've done with caths and is it SETC's (?) and vitamin D and all that - I still don't get the full link. Mostly because it's written in such scientific wording it would require me sitting down and breaking each word down to understand meaning, which I can do - it would just take much time.

    Unless anyone can write it in laymans terms here?

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    hi tica,

    yes i see what you mean by perfect line, i have the same thing on forehead, there is a perfectly symmetrical pattern with small white parts on boards ant top, and the difference between red and white area is very clear. That looks weird lol. What i have noticed by touching it is that the days when i have oily skin, it's oily on the red area but dry on the white. The idea of abnormal innervation seems interesting to me. It reminds me about drummond's theory about the skin getting the signal to sweat but not being able to do it and thus becoming hot and dilating vessels. But there are people like you, who are able to sweat so there must be different mechanism behind it.

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