Mistica

This probiotic has come to my attention, although I haven't tried it. It is supposedly better than the majority of probiotics that are found on shop shelves as it contains strains used in research, which have demonstrated benefits. Personally, I don't tolerate probiotics and it has been suggested my adverse reactions may be due to SIBO. However, I am not certain about that as my face is much calmer and in general free of P&P's unless I take probiotics of any kind that I have tried thus far. There is mention on the linked site that Daily Synbiotic may be suitable for people who have SIBO as it bypasses the small intestine and resists digestion until it has reached the large colon. I am not convinced, however it may be true. Has anyone tried this Daily Synbiotic? If so, it would be helpful if they shared their results. https://my.seed.com/daily-synbiotic

Thanks for your reply. What I was leaning towards though, is that given the ion channels in the faces of rosaceans are abnormal and TRPV1 in particular has been found to be overly expressed, fasting seems an ideal way to reduce this and also to perhaps reset the balance and activity of the others. If balance could be restored, the facial inflammation and hyper activity should settle down. I realise fasting also improves the state of the gut flora and by extension, less inflammatory signals are being sent to the face. Have you been able to significantly reduce your facial symptoms permanently with diet and fasting? Or do they return at some point after reintroducing food? Fasting and dietary interventions are not enough for me. I have to take a number of supplements and also use topical treatments. I am going to take a detour here. I use ZZ cream (Brady's favourite) and a gel I have compounded containing 4% niacinamide, (the most important), 2% LMW HA, 2% ethyl ascorbate. The gel, ie the vehicle is just as important as the active ingredients as it is benign with an elastic type nature, acting as a brace against the neon sign type of flushing, which can lead to worsening symptoms. I mix this with the ZZ cream. It leaves a very nice finish when dry. It is my opinion that the benefits we get from the ZZ cream, have little to nothing to do with killing demodex, but rather, as one or more ingredients interacts with and modifies the ion channels in our faces, thereby reducing inflammation. The most obvious is the menthol which interacts with the TRMP8 (at least) as you know. I read it is now known it interacts with the TRPA1 and neurotransmitter receptors. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3778045/ Dietary menthol alas attenuates inflammation. https://pubmed.ncbi.nlm.nih.gov/31648306/ If I eat a lot of junk food, or simply stray from my regular diet, I will invariably develop outbreaks of papules or pustules on my face. ZZ cream can help heal these. However, they don't cease, until I tend to my gut. I should note, that they don't heal properly either, with ZZ cream. If I flush really badly, which has been rare since my latest experiment (I won't go into that here), I will develop outbreaks of P&P's within 24 hours. Again, ZZ cream helps heal these, but won't prevent new ones. Well to be fair, I imagine it reduces the amount I would get if I were not using the cream. Therefore I am very suspicious about the role of demodex in the faces of most people. Do you agree with my thoughts on the therapeutic action of ZZ cream? Or can you offer any other type of insight as to it's possible actions?

I also practice fasting. Mostly intermittent, and once I am in a routine, I will do a 24 hour fast once per month. I do find it helpful in reducing my flushing and facial inflammation. However, initially, it can make me redder, until my body adjusts. I imagine the cause of this will likely be partly metabolic and partly temporary increased endotoxin from the gut as microbial communities are reduced. Some time ago, I found the following study which states that the TRPV1 receptor is degraded during starvation. Does this mean the gene expression is reduced? Given the fact the TRPV receptors are expressed abnormally in rosacea skin, and in particular, the TRPV1 is overly expressed in the skin of flushers (Gallo's Research), then fasting should be considered a first line non invasive treatment for rosacea and many other inflammatory conditions. I am not clear on the terminology however. Does degraded mean down regulation of genes in this context? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3969047/ In any case, fasting has proven helpful for many conditions throughout the ages, even if we don't yet fully comprehend all the benefits. It also has a positive impact on gut flora. In addition, it should help prevent and/or resolve SIBO.

Yes, it is a very sad state of affairs. In my experience, doctors who are driven to find answers are usually functional medicine doctors, or people in related fields, such as RedVelvet, a member here. They look at the wider picture and often achieve pleasing results in many types of chronic disease, but a few continue to elude them. Also, in my experience, scientists are usually keener to spend their spare time pondering a puzzle with lay people than physicians are. They have an innate curiosity and formulate a hypothesis based on real people's experiences. They don't mind a debate either. My professor mentors helped turn my severe flushing and health around, where as doctors seem out of their depth. Unfortunately neither mentor is in a position to be engaging in active rosacea research. Maybe we can dig up some more scientists?

Yes, total number of posts and large subject matter. People sharing their experiences and the discussions (at times) as to why a treatment is working or not working. Here in the RRDI there seems to be little of that. There are a number of studies in the archives, which is all well and good, but not actual discussions, which is a shame, given the fact there are a large number of doctors and a few scientists here. Perhaps they only have mild symptoms so they are not driven to ponder the biology of rosacea in their spare time? I am speculating of course.

Hello Brady, Thank you for this insightful video presentation, all your work, and efforts to gain the attention of rosaceans. I feel all your years of hard work are largely unrewarded, or even recognised. I would be sad to see the RRDI close, and realise I (as a member) need to carry a tiny portion of the blame if it does. I loathe all the social media platforms that you have mentioned in the video. I find them difficult to navigate and most posters have little to offer in the way of anything remotely scientific, nor truly helpful. It is just a regurgitation of superficial bandaid treatments. There are no archives full of information as can be found in the rosaceagroup.org, rosacea-support.org or perhaps to a lesser degree, the RRDI. Perhaps one of the reasons that the RRDI does not retain the visitors it gets, is due to lack of extensive archives? I am only speculating. With that said, the rosaceagroup.org is sadly lacking in active members now as well. Where have all the science minded members gone? We used to have really detailed discussions based on research which furthered our understanding of this rotten beast. I very much doubt all these members have reached remission. Have they moved to the pastures of sheep too? It is hard to imagine them thriving in such an environment. I can't explain why old time members have moved there, but with the younger generation, they probably just follow the flow and as you have clearly illustrated in the above video, they are fodder for any company peddling products. I sound harsh, but I am a realist. My professor mentor feels the answers to the complete rosacea/flushing puzzle are probably already out there, and it needs people with more time to sit down and assemble the pieces. There are a number of people who do achieve remission and maintain it, so it can be done. Sub type two is a much easier beast to slay as you know. It is the flushing type which proves itself to be a formidable opponent. I managed to reign in my severe flushing, despite a number of specialists insisting nothing could be done. Yet I am a mere peasant in the world of science. My point being, if sessions of brain storming took place by actual scientists, surely this would further knowledge and understanding. I'd like to see the scientists on the RRDI toss around some ideas and to form hypotheses. Given that the RRDI was formed to develop it's own research, why aren't they offering any thoughts? At least planting seeds for others to debate? Rosacea patients could then join in if they have anything to offer. If this were happening on boards for everyone to view, perhaps this activity would be seen as a ray of hope by the general members and would inspire them to donate? Mistica

I'd like to mention iodine. I was found to be iodine deficient by two spot urine tests. There is debate about which test is the more accurate. The 24 hour urine collection, after taking a very high dose of iodine. Or the spot test. Each camp will offer proof as to which test should be the favoured one. Those in the 50 mg dose camp insist there are never any side effects. I would beg to differ. Too much iodine can cause flushing even in non flushers and anecdotal reports of this can be found in forums. Like many triggers, it can cause persistent flushing. And of course there are the thyroid issues, but they don't seem to be as prevalent as official literature suggests. However, lower doses can be helpful. I had a difficult time adjusting to iodine, but the biggest improvement I had was a significant reduction in flushing. In particular, nose flushing. My nose flushing used to be hell and uncontrollable. These days it is much milder. I take several supplements but it was the iodine that made the quickest and most obvious impact. (Iodine+niacinamide+vitamin C). I took all separately initially. What is interesting, is that a quick google can turn up anecdotal reports from menopausal women who found their hot flashes reduced or completely resolved following iodine supplementation. There are users who have triggered flushing too, so I tend to think testing for deficiency is prudent before trialling iodine. There are a few breast cancer survivors who report the same benefit. So one must consider, aside from thyroid health, what role or roles does iodine have in vasodilation, hormonal balance and vascular health? My physician (and others) have noted the potent anti inflammatory effects of iodine. I have regular blood tests including a full thyroid panel to monitor thyroid function as I developed Hashimoto's due to iodine deficiency and my on going gut flora issues. I also had lowish zinc and borderline low retinol, but it has been pointed out to me by my physician and my scientist mentors, that tests for nutritional deficiencies aren't overly accurate, not unless someone is extremely deficient. It is interesting to note, that some of the worst flushers on the forum, have thyroid disease - and nutritional deficiencies and insufficiencies have been linked to thyroid dysfunction. Along with gut issues. Then there is the query as to whether blood serum levels are reflective of cellular levels. Personally I think this is an area which needs exploration. As usual, multiple questions and no answers. Alas.

I'd like to reply to this thread by linking the following article by Dr Brownstein. Pharmaceutical companies are always on the lookout to make an extra buck at the expense of the patient's health. http://blog.drbrownstein.com/new-hypertension-guidelines-same-old-song/ Too low a B/P triggers flushing in me. It sits around 95/62. When it drops lower I develop flushing and other symptoms. Of course I flush due to other triggers too. My mother, who had vascular dementia suffers worsened symptoms and at times, deterioration when her B/P becomes too low. Her brain becomes hypoxic. She has been evaluated by medical professionals and such effects are demonstrated in studies. Hypoxia has been suggested in the facial veins of rosaceans too. I believe Prof Peat spoke about it. In his article, I believe he was talking about hypoxia induced by endotoxins for example, but I imagine there could be more than one cause.

On that note, I have something to post in the Trigeminal sensory malfunction theory thread.

I too love ZZ cream and like you, Brady, find it crucial to controlling my symptoms. In my case, I mix it with my compounded Niacinamide Gel, as the newer ZZ base didn't sit well on my face. It dried like poster paint. Plus, I love my niacinamide gel and it offers it's own benefits. The two combined work well for me...... unless ........ (like you), my gut function is not also under control. I have followed your posts for years and I am convinced that whilst ZZ cream helps control symptoms in our faces, our primary issues come from the gut. Yet, treating the gut alone is not enough. ZZ cream seems to help restore harmony (to a point) in the face. I am also convinced that my breakouts, when they occur have little or anything to do with demodex. Based on what you report, yours aren't either. This begs the question yet again, why do medications such as ivermectin provide relief for some type 1's? Or even type 2's? I feel the answer lies in how the medications interact with nerve cells in addition to relieving inflammation. Menthol in the ZZ cream also interacts with one of the TRP family. From memory I think it is the TRPM8. I've no doubt ZZ provides antimicrobial effects (as well as mite control) as well, but then, so do commercial sulphur topicals and personally, I don't find them overly useful at all. ZZ is different. I also feel that the base of Soolantra, being cetaphil lotion, is a poor choice and given lotions and potions in general fire up many faces, adding oil to the inferno, whilst trying to put out the fire, doesn't seem logical. I am also not convinced that the massive outbreaks that some people report when starting ZZ cream is always due to a sudden demodex die off, as people in the ivermectin trial where I live reported no such thing. There are reports of such outbreaks of P&P's from people who have been regular users of Pot, for example, or certain antidepressants and yet again, this suggests a change of firing in the nerve cells. Perhaps ZZ also modifies them? Anyway, at the end of the day, ZZ cream seems the best topical for your case and mine (in conjunction with the niacinamide gel) and I do hope that you can find some way to continue purchasing it. As you say, it is pricey, alas. Perhaps you could find a non oily gel with which to mix it? You are a trooper testing different products over the years and providing photographic blogs.