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Thread: Redness related to burning?

  1. #11
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    Quote Originally Posted by antwantsclear View Post
    They can live for up to around 48-72 hours off the skin, and they like moist surfaces like towels. Professor Frank Powell in Dublin is leading the most thorough research on demodex mites and rosacea and he has identified them as contributing to type 1 not only type 2. You will also find many people on this forum who are treating type 1 (redness, flushing, burning) with demodex mite treatments such as Zhongzhou cream and Soolantra. Demodex mite treatments have made a big difference to my ears for example where I never get type 2 rosacea at all.
    Hey antwantsclear,

    I have decided to explore the link between mites and my rosacea a little bit more and going to look at getting a refferal to Dr Powell. I am at my wits end, but trying to explore all the options. I have tried Soolantra before, albeit only for a couple of weeks which may not have been long enough. I am super sensitised to any skin creams, I can't even tolerate the Cetaphil cleanser and moisturiser, so hoping Soolantra won't be too bad if I do give it another go.

  2. #12
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    Quote Originally Posted by Seb91 View Post
    Hey antwantsclear,

    I have decided to explore the link between mites and my rosacea a little bit more and going to look at getting a refferal to Dr Powell. I am at my wits end, but trying to explore all the options. I have tried Soolantra before, albeit only for a couple of weeks which may not have been long enough. I am super sensitised to any skin creams, I can't even tolerate the Cetaphil cleanser and moisturiser, so hoping Soolantra won't be too bad if I do give it another go.
    Hi Seb

    I think a referral to Professor Powell would be a very good idea. However, when I was referred I wasn't able to get one - interesting to see if you can. There is a very big shortage of doctors in Ireland (e.g. 2 year waiting lists sometimes), so any very well qualified ones like him are very careful who they decide to see, and I had already tried most options he could offer. Even if you can't see him, his textbook on rosacea gives you an indication of many of the treatment options he may use. Beyond Soolantra, I'm not sure what treatments he would offer you for demodex except possibly oral Ivermectin (off licence), but that is not commonly prescribed for rosacea. Zhongzhou cream has been very successful for many people (e.g. I found it much better than Soolantra cream) to kill mites and is available on Amazon - Brady also uses it I believe, who you'll know has a thorough knowledge of rosacea treatments. Professor Tony Chu can offer you many treatments to help with the redness and flushing, but he is not interested in the demodex mites theory. I suggest exploring both his treatment options and the demodex mite treatments - this is clearly bothering you a lot. In the end, 95% of adults have demodex mites (according to studies) so there is a very good chance that mites are interfering in some way with your rosacea.

    I've found this to be a good place to buy demodex mite treatments - it's important to treat the hair as well as the face:
    https://demodex.co.uk/shop/
    Last edited by antwantsclear; 17th September 2019 at 10:57 AM.

  3. #13
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    Quote Originally Posted by antwantsclear View Post
    Hi Seb

    I think a referral to Professor Powell would be a very good idea. However, when I was referred I wasn't able to get one - interesting to see if you can. There is a very big shortage of doctors in Ireland (e.g. 2 year waiting lists sometimes), so any very well qualified ones like him are very careful who they decide to see, and I had already tried most options he could offer. Even if you can't see him, his textbook on rosacea gives you an indication of many of the treatment options he may use. Beyond Soolantra, I'm not sure what treatments he would offer you for demodex except possibly oral Ivermectin (off licence), but that is not commonly prescribed for rosacea. Zhongzhou cream has been very successful for many people (e.g. I found it much better than Soolantra cream) to kill mites and is available on Amazon - Brady also uses it I believe, who you'll know has a thorough knowledge of rosacea treatments. Professor Tony Chu can offer you many treatments to help with the redness and flushing, but he is not interested in the demodex mites theory. I suggest exploring both his treatment options and the demodex mite treatments - this is clearly bothering you a lot. In the end, 95% of adults have demodex mites (according to studies) so there is a very good chance that mites are interfering in some way with your rosacea.

    I've found this to be a good place to buy demodex mite treatments - it's important to treat the hair as well as the face:
    https://demodex.co.uk/shop/

    Thanks for the information. So, I went to another local dermatologist for a second opinion, as right now I am in the process of exploring all other options to hopefully sort this out. This has include seeing a neurologist to have an MRI and B12 levels checked, gastroenterologist for SIBO test (tested + but show absolutely no stomach related symptoms, could it be related to my redness and burning?) I will obviously work to erradicate the SIBO to see if this in turn helps my skin.

    The dermatologist said that my case was very different from the ones he sees on a daily basis. Although I definitely show signs of rosacea, attached in the picture, he said my redness is mild in comparison to the burning I am experiencing. I have such extreme hyerpsensitivity, I couldn't even tolerate Cerave Moisturing Lotion which is said to be one of the calmest on the market. People may look at me and think his skin is fine but the burning I have 24/7 is so debilitating. He did discuss the idea of facial erythromalgia which is very rare but something I am going to explore. The latest laser treatment I had (attached) also didn't provide relief like I hoped. I am now worried vbeam treatments, which I have relied on in the past, are becoming less and less effective.

    The derm actually recomended a narrowband UVB lamp after hearing how my skin reacts in the sun after a week. It is strange that when I am in the sun, my skin is of course very sensitive, but after 4 or 5 days, it becomes more and more accustomed to the heat, and my symptoms seem to diminish. The derm said that the UV rays could be triggering a change in the nerve pathways which I found interesting.

    I am determined to get to the bottom of this. I was wondering whether anyone knew where I could get tested for demodex mites in London or the UK? I had a Google search but came up short.

    Thanks,
    IMG_2010.jpg
    IMG_2246.jpg

  4. #14
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    Hi have you had any allergy testing done, patch or skin prick?



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    Quote Originally Posted by Andrew P View Post
    Hi have you had any allergy testing done, patch or skin prick?

    Sent from my WAS-LX1A using Tapatalk
    I am actually going to get a referral to get a Demodex mite test done, and I had had a full range of bloods done last year. Everything looked normal - the one thing was I had a high secretory IGA marking, which is stated as the following; "Elevated levels in saliva are associated with an immune response to stimulation by infections and inflammatory reactions. High levels of SIgA production may indicate an infection of the digestive system, in which case a Comprehensive Stool Analysis with parasites would be recommended." I did in fact do all other tests and there were no parsites or sign of infection. As mentioned, I did test positive for SIBO but whether that's related, I just don't know. I don't get spots, just mild redness and severe burning and hypersensitivity.

    I didn't have any glaring food intolerances either, so I just don't know. I have had 15+ Vbeams but they seem to vary in their effectiveness, so for me its a case of exploring other avenues as my condition seems to get worse and worse.

    Do you know where I can get a skin prick done in London or the UK?

    Thanks,

  6. #16
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    Quote Originally Posted by Seb91 View Post
    I am actually going to get a referral to get a Demodex mite test done, and I had had a full range of bloods done last year. Everything looked normal - the one thing was I had a high secretory IGA marking, which is stated as the following; "Elevated levels in saliva are associated with an immune response to stimulation by infections and inflammatory reactions. High levels of SIgA production may indicate an infection of the digestive system, in which case a Comprehensive Stool Analysis with parasites would be recommended." I did in fact do all other tests and there were no parsites or sign of infection. As mentioned, I did test positive for SIBO but whether that's related, I just don't know. I don't get spots, just mild redness and severe burning and hypersensitivity.

    I didn't have any glaring food intolerances either, so I just don't know. I have had 15+ Vbeams but they seem to vary in their effectiveness, so for me its a case of exploring other avenues as my condition seems to get worse and worse.

    Do you know where I can get a skin prick done in London or the UK?

    Thanks,
    That sounds like one of those internet blood tests?

    You can get prick tested for all the standard allergens like mold, pollen dust etc. Plus you can have common chemical ones done as a patch test on your back.

    Honestly reading your post about surfing, sun etc. Strikes me there is an element of environmental, surfing you spend a long time outdoors, and probably in a different place to stay at night? Plus you can identify a time when it started almost like a switch with the new place you were in.

    I cannot recommend a private one but you could request a referral to St John's Dermatology at Guys Hospital. They have an allergy department.

    Or Google London Allergy clinics they all should do prick testing.









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  7. #17
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    Quote Originally Posted by Andrew P View Post
    That sounds like one of those internet blood tests?

    You can get prick tested for all the standard allergens like mold, pollen dust etc. Plus you can have common chemical ones done as a patch test on your back.

    Honestly reading your post about surfing, sun etc. Strikes me there is an element of environmental, surfing you spend a long time outdoors, and probably in a different place to stay at night? Plus you can identify a time when it started almost like a switch with the new place you were in.

    I cannot recommend a private one but you could request a referral to St John's Dermatology at Guys Hospital. They have an allergy department.

    Or Google London Allergy clinics they all should do prick testing.









    Sent from my WAS-LX1A using Tapatalk
    The blood tests were very thorough with Cleveland labs. Did it through a private clinic here in London. Yes, I do agree that environmental factors may have an impact. Whether the sun is changing my nerve pathways, or whether the lack of stress is leading to less inflammation, I really don't know.

    Yes I know Guys Hospital, I have my laser treatments there these days.

    Thanks for your help,

  8. #18
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    Quote Originally Posted by Seb91 View Post
    Thanks for the information. So, I went to another local dermatologist for a second opinion, as right now I am in the process of exploring all other options to hopefully sort this out. This has include seeing a neurologist to have an MRI and B12 levels checked, gastroenterologist for SIBO test (tested + but show absolutely no stomach related symptoms, could it be related to my redness and burning?) I will obviously work to erradicate the SIBO to see if this in turn helps my skin.

    The dermatologist said that my case was very different from the ones he sees on a daily basis. Although I definitely show signs of rosacea, attached in the picture, he said my redness is mild in comparison to the burning I am experiencing. I have such extreme hyerpsensitivity, I couldn't even tolerate Cerave Moisturing Lotion which is said to be one of the calmest on the market. People may look at me and think his skin is fine but the burning I have 24/7 is so debilitating. He did discuss the idea of facial erythromalgia which is very rare but something I am going to explore. The latest laser treatment I had (attached) also didn't provide relief like I hoped. I am now worried vbeam treatments, which I have relied on in the past, are becoming less and less effective.

    The derm actually recomended a narrowband UVB lamp after hearing how my skin reacts in the sun after a week. It is strange that when I am in the sun, my skin is of course very sensitive, but after 4 or 5 days, it becomes more and more accustomed to the heat, and my symptoms seem to diminish. The derm said that the UV rays could be triggering a change in the nerve pathways which I found interesting.

    I am determined to get to the bottom of this. I was wondering whether anyone knew where I could get tested for demodex mites in London or the UK? I had a Google search but came up short.

    Thanks,
    IMG_2010.jpg
    IMG_2246.jpg
    I don’t know if this will help but I couldn’t use anything on my face.
    Was scared to use soolantra.
    Derm said try putting on for 15 mins then wash off. I can now leave on all night.
    I use filtered water to wash with sometimes distilled if really sensitive.
    Mine is definitely gut related.
    I’ve found the new Cerave Smoothing face wash better than there hydrating one but I only use the tiniest amount. I’m using the Cerave moisturising face and body lotion in the pump bottle as I found there is only one ingredient difference in their highly expensive face wash.
    Sensitivity is Lessing with soolantra so it seems demodex is an issue with me and I suspect blepharitis is also demodex related. But I also have Seborrhoeic Dermatitis.
    I’ve found a probiotic I can take as well.

  9. #19
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    I also cannot tolerate Cerave products or pretty much any other face washes on the parts of the face impacted by the rosacea itself. The best products I've found to manage these areas are Higher Nature colloidal silver water, mineral water, Zhongzhou cream and Skinceuticals Epidermal cream. The products I use are expensive, but I think a lot of people with type 1 rosacea struggle with the doctor recommended products like Cerave.

    Avoiding showering and having baths that don't cover the face - cleaning the face with products above instead - have helped me significantly.

    I wonder, Seb, if your skin tone is darker than many people with rosacea, which may mean the redness is not so apparent - I got a different impression from different pictures you've posted so I'm not sure. I've generally found doctors who try to tell me I may not have rosacea but have something else are those with less specific expertise in rosacea.

    Erythromelalgia is managed with similar medicines to type 1 rosacea, as the symptoms are similar - alpha blockers, beta blockers, pain medications like gabapentin, anti-depressants. Mexelitine is used more commonly in erythromelalgia than rosacea, but is not a first option as it carries common side effects such as heart burn.
    Last edited by antwantsclear; 22nd September 2019 at 02:23 PM.

  10. #20
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    Quote Originally Posted by antwantsclear View Post
    I also cannot tolerate Cerave products or pretty much any other face washes on the parts of the face impacted by the rosacea itself. The best products I've found to manage these areas are Higher Nature colloidal silver water, mineral water, Zhongzhou cream and Skinceuticals Epidermal cream. The products I use are expensive, but I think a lot of people with type 1 rosacea struggle with the doctor recommended products like Cerave.

    Avoiding showering and having baths that don't cover the face - cleaning the face with products above instead - have helped me significantly.

    I wonder, Seb, if your skin tone is darker than many people with rosacea, which may mean the redness is not so apparent - I got a different impression from different pictures you've posted so I'm not sure. I've generally found doctors who try to tell me I may not have rosacea but have something else are those with less specific expertise in rosacea.

    Erythromelalgia is managed with similar medicines to type 1 rosacea, as the symptoms are similar - alpha blockers, beta blockers, pain medications like gabapentin, anti-depressants. Mexelitine is used more commonly in erythromelalgia than rosacea, but is not a first option as it carries common side effects such as heart burn.
    Yes, as you mentioned, hot showers are really not good for me. I will definitely look into getting demodex mites tested, and allergies as well, as my condition came on overnight when I moved into a new room at university. Whether it was an environmental trigger which has kickstarted this cycle is worth exploring.

    I would probably assume my skin tone is darker than most people with rosacea, albeit, not dark at all now because my skin is currently so sensitive, so have been unable to go in the sun all this Summer. As I mentioned before, after being in the sun for a prolonged period of time, I go very dark and my redness and burning subsides. Why that is, I really don't know.

    I would guess against erythromelalgia just because of its extreme rarity in getting it facially, and I have no symptoms with my hands and feet. I will keep everyone updated on test results and progress.

    Thanks,

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