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  • #16
    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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    • #17
      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,

      Comment


      • #18
        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,
        [ATTACH=CONFIG]5597[/ATTACH]
        [ATTACH=CONFIG]5598[/ATTACH]
        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.

        Comment


        • #19
          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; 22 September 2019, 02:23 PM.

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          • #20
            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,

            Comment


            • #21
              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
              IMG_3365.jpg

              Hi Andrew,

              I am going to try and get a referral to Guys for allergy testing. Is the skin prick test localized to your body, or are they able to test your face? The reason I ask is that even if I just press my finger against my rosacea-prone areas (temples, cheeks, and nose) this is the immediate reaction I get. I am literally throwing everything I can get at this. My derm said he doesn't know a clinic that does a Demodex mites test which doesn't perform an actual biopsy which leads to a 4mm scar (not that I really care at this point). Do you know where I can get tested for Demodex and can the NHS do a referral for it? Thanks, Seb
              Last edited by Seb91; 30 September 2019, 01:34 PM.

              Comment


              • #22
                Originally posted by Seb91 View Post
                [ATTACH=CONFIG]5602[/ATTACH]

                Hi Andrew,

                I am going to try and get a referral to Guys for allergy testing. Is the skin prick test localized to your body, or are they able to test your face? The reason I ask is that even if I just press my finger against my rosacea-prone areas (temples, cheeks, and nose) this is the immediate reaction I get. I am literally throwing everything I can get at this. My derm said he doesn't know a clinic that does a Demodex mites test which doesn't perform an actual biopsy which leads to a 4mm scar (not that I really care at this point). Do you know where I can get tested for Demodex and can the NHS do a referral for it? Thanks, Seb
                I had a biopsy done at guys but it was testing for auto immune symptoms.

                Standard prick tests are done on the arm. Patch tests are done on the back over 3 days both I have had done at Guys.

                Arm tests tend to be testing for aero allergens and patch tests are the common chemical skin allergy tests.

                My story goes back 9 years but mine also involved nasal symptoms at first along side burning tingling face up to 2 years ago I had no visible symptoms and was diagnosed with atypical facial pain, then started redness and then dramatic facial swelling.

                https://www.guysandstthomas.nhs.uk/o...-overview.aspx

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                Last edited by Andrew P; 30 September 2019, 01:52 PM.

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                • #23
                  Originally posted by Andrew P View Post
                  I had a biopsy done at guys but it was testing for auto immune symptoms.

                  Standard prick tests are done on the arm. Patch tests are done on the back over 3 days both I have had done at Guys.

                  Arm tests tend to be testing for aero allergens and patch tests are the common chemical skin allergy tests.

                  My story goes back 9 years but mine also involved nasal symptoms at first along side burning tingling face up to 2 years ago I had no visible symptoms and was diagnosed with atypical facial pain, then started redness and then dramatic facial swelling.

                  https://www.guysandstthomas.nhs.uk/o...-overview.aspx

                  Sent from my WAS-LX1A using Tapatalk
                  Did you manage to find out what was causing your symptoms? Were you diagnosed with rosacea and have you managed to treat it?


                  Sent from my iPhone using Tapatalk

                  Comment


                  • #24
                    Originally posted by Seb91 View Post
                    Did you manage to find out what was causing your symptoms? Were you diagnosed with rosacea and have you managed to treat it?


                    Sent from my iPhone using Tapatalk
                    I was diagnosed with Morbihan disease just from my appearance. A rare form of Rosacea if you Google image it I did look similar and it had become more or less semi permanent. There is not any successful long term treatment.

                    My problem believe it or not was not the look but the pain, burning and tingling it gave me and this form was supposed to be painless.

                    I have a long story too long to type out but started in 2010/11.

                    Tested positive intradermal to propylene glycol and supporting that is I react badly around Vapers and I took an antibiotic in 2015 that has since been found to slow/stop your body processing PG, when I took it is when this escalated for me. My face went very red and the burning was off the scale for the 4 days I lasted on it.






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                    • #25
                      Andrew,
                      Have you contacted Weezer on this forum I believe he had the same diagnosis. Symptoms occurred after a course of antibiotics. It’s quite a rare subtype.

                      Comment


                      • #26
                        Originally posted by Countrygirl View Post
                        Andrew,
                        Have you contacted Weezer on this forum I believe he had the same diagnosis. Symptoms occurred after a course of antibiotics. It??[emoji769]s quite a rare subtype.
                        As extraordinary as it sounds just over a year ago I moved to a property without near neighbours, and with covid unfortunately closed my business.

                        In 12 months I have reduced my symptoms by 80-90% having had mild to extreme symptoms for ten years. From burning, redness and tingling to swelling. Mine 100% is environmental allergy.

                        Downside a lot of the sanitizer bring on similar flushing, burning redness and sometimes extreme swelling, yet an n95 mask stops this.

                        The post notification for HOCI spray bought me back here as it's the only sanitizer that doesn't give me a reaction!

                        No way will this apply to everyone, but I still believe for some it is an allergic reaction.

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                        • #27
                          Originally posted by Andrew P View Post
                          As extraordinary as it sounds just over a year ago I moved to a property without near neighbours, and with covid unfortunately closed my business.

                          In 12 months I have reduced my symptoms by 80-90% having had mild to extreme symptoms for ten years. From burning, redness and tingling to swelling. Mine 100% is environmental allergy.

                          Downside a lot of the sanitizer bring on similar flushing, burning redness and sometimes extreme swelling, yet an n95 mask stops this.

                          The post notification for HOCI spray bought me back here as it's the only sanitizer that doesn't give me a reaction!

                          No way will this apply to everyone, but I still believe for some it is an allergic reaction.

                          Sent from my MAR-LX1B using Tapatalk
                          Thanks for sharing. I have a diagnosis of Morbihans but docs aren't convinced as i have burning too and morbihans is just supposed to be hotl. THere is a case study of a Morbihans responding to Xolair (anti-IGE) which would be a mast cell stabilizer if mast cells are overactive by ige (could be overactive by non-ige mechansisms). I tried xolair and it didn't work for me But the risk was low and my doc had samples.

                          I hope you continued success. Did you ahve a face biopsy? Sometimes they show weird lymph vessels and mast cells. There was a connection to urticaria published in some paper (morbihans / urticaria).

                          Stupid q - but did you get a patch test to find the allergy? Did you have any pustules? Did you respond to high dose antihistamines? I believe my Morbihans to be a natural progression of rosacea and not an allergy per se. I know they give accutane and antihistamines together for morbihans though (ketotifen). I'm trying to see if I could get ketotifen. I think antihistamines work better with accutane + antibiotics for me.

                          I'm sorry about your business. That would be a lot Glad you figured out your severe rosacea however. Thanks for coming back to share! ps must be the only rosacean to like an n95 mask! (any face mask!)

                          edit - another q - did you ever try accutane? was told that is the go-to treatment for morbihans but docs thoguht risky for me as I also flush and burn (so .... true morbihans or not?) I'm trying now.
                          Last edited by laser_cat; 6 February 2021, 01:36 AM.

                          Comment


                          • #28
                            Originally posted by laser_cat View Post
                            Thanks for sharing. I have a diagnosis of Morbihans but docs aren't convinced as i have burning too and morbihans is just supposed to be hotl. THere is a case study of a Morbihans responding to Xolair (anti-IGE) which would be a mast cell stabilizer if mast cells are overactive by ige (could be overactive by non-ige mechansisms). I tried xolair and it didn't work for me But the risk was low and my doc had samples.

                            I hope you continued success. Did you ahve a face biopsy? Sometimes they show weird lymph vessels and mast cells. There was a connection to urticaria published in some paper (morbihans / urticaria).

                            Stupid q - but did you get a patch test to find the allergy? Did you have any pustules? Did you respond to high dose antihistamines? I believe my Morbihans to be a natural progression of rosacea and not an allergy per se. I know they give accutane and antihistamines together for morbihans though (ketotifen). I'm trying to see if I could get ketotifen. I think antihistamines work better with accutane + antibiotics for me.

                            I'm sorry about your business. That would be a lot Glad you figured out your severe rosacea however. Thanks for coming back to share! ps must be the only rosacean to like an n95 mask! (any face mask!)

                            edit - another q - did you ever try accutane? was told that is the go-to treatment for morbihans but docs thoguht risky for me as I also flush and burn (so .... true morbihans or not?) I'm trying now.
                            When I turn on my pc later I will put some more detail. May add a picture.

                            I had biopsy done face and eyelids.

                            I cannot blame them as the images online for morbihans look exactly how I did 90% of the time.

                            I have just about every allergy test you can imagine. My whole back covered it was their full choice of allergens, pin prick arm standard essay. One minor skin reaction. My bloods are ok except my igm was really high and high bilburin the former they explained as it was due to the inflammation in my face.

                            I was even chosen for PEG allergy testing by the drug allergy clinic due to my medical record, negative to skin but they wanted to expose me to airborne and injection but it would have been three hours being monitored with the risk of going into amphalitic shock, I was just too unwell at the time.

                            I have seen more Dr in the last 4 years than the previous 52. Private and in London NHS hospitals. 4 or more ENTs same with dermatologists, oral medicine, dentists, immunologists, ophthalmologist just about the full monty of specialist's

                            Drugs loads offered and not always taken.

                            Main diagnosis at first in 2014 was atypical facial pain, this dragged on for 2 years as it all ramped up after dental work. I had manageable symptoms before this.

                            I pretty much rejected all the treatments for this as they all seemed worse than the symptoms. Also at the time anything I took seemed to make me worse.

                            My last appointment with the oral medicine consultant was when the swelling started, which is not a symptom so I was moved on to allergy.

                            That's when the Dr journey started had some scary autoimmune discussions and negative investigations and at some point looking back it had started to dawn on me my symptoms were either better or worse in different places.

                            Every single Dr I have seen I have told them I feel better cycling than anywhere else and that I do not care about the redness or swelling just stop the sensations pain, burning and tingling twitching.

                            I still wake up, look in the mirror and the face reflected still doesn't seem right I am still not used to at least seeing droopy puffy eyelids or the extreme swollen face. Still touching my face my nose feels odd as in smaller and the glands under my chin are not firm. Washing my feet and hands they are thinner. Inside my nose is not swollen and no more blood in my mucus. Lastly I barely take any antacids anymore from taking prescription ones for 15 years.

                            I can go back a lot further than 6 years at pictures of me and the droopy eyelids were there.

                            There is so much more to the story, and I am not cured, now I have spent longer than a day or so without it I can immediately feel it happening and the trigger pre covid could have been someone walking past me, or walking in to a shop. The mask seem to slow or stop it. But it has to be a decent quality, the blue ones seem to agitate me.

                            Main triggers I can identify are air fresheners, vape and seems like some aerosols like deodorant.

                            Lived in a terrace house before for 20 years and my neighbour forever spraying air freshener (moved in 2007) so much so they actually smelt of it themselves.

                            In 2010 where my warehouse was a scented candle and diffuser manufacturer moved in next door, my warehouse constantly smelt of essential oils.

                            In 2014 my wife took up vaping and I took Metronidazole this antibiotic drug is known now to completely stop your body processing propylene glycol so it builds up, and this was when I escalated to extreme burning redness and felt awful on it, stopped after 3 days.

                            It's also in candles, diffusers vape and thousands of other products.

                            Prior to that from 2010 to 2014 my symptoms were constant runny nose and lost my sense of smell. Which was not stopped by antihistamines or steroid nasal sprays.

                            I still feel like I am a madman but what will say there is growing evidence that humans are developing antibodies to PEG which is a similar chemical. It's used in a lot of drugs.

                            Google NHS peg allergy or drug induced peg allergy interesting for me the reaction is an igm response normal allergies are igg. Hence antihistamines do not work.

                            The only drug that has ever helped is cortisone steroids.

                            Missed out loads of signs I had when I look back with the benefit of hindsight.

                            Sorry longer post than I thought.

                            I just googled peg allergy, not done it in 18 months and quite shocked!!










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                            • #29
                              Originally posted by Andrew P View Post
                              When I turn on my pc later I will put some more detail. May add a picture.

                              I had biopsy done face and eyelids.

                              I cannot blame them as the images online for morbihans look exactly how I did 90% of the time.

                              I have just about every allergy test you can imagine. My whole back covered it was their full choice of allergens, pin prick arm standard essay. One minor skin reaction. My bloods are ok except my igm was really high and high bilburin the former they explained as it was due to the inflammation in my face.

                              I was even chosen for PEG allergy testing by the drug allergy clinic due to my medical record, negative to skin but they wanted to expose me to airborne and injection but it would have been three hours being monitored with the risk of going into amphalitic shock, I was just too unwell at the time.

                              I have seen more Dr in the last 4 years than the previous 52. Private and in London NHS hospitals. 4 or more ENTs same with dermatologists, oral medicine, dentists, immunologists, ophthalmologist just about the full monty of specialist's

                              Drugs loads offered and not always taken.

                              Main diagnosis at first in 2014 was atypical facial pain, this dragged on for 2 years as it all ramped up after dental work. I had manageable symptoms before this.

                              I pretty much rejected all the treatments for this as they all seemed worse than the symptoms. Also at the time anything I took seemed to make me worse.

                              My last appointment with the oral medicine consultant was when the swelling started, which is not a symptom so I was moved on to allergy.

                              That's when the Dr journey started had some scary autoimmune discussions and negative investigations and at some point looking back it had started to dawn on me my symptoms were either better or worse in different places.

                              Every single Dr I have seen I have told them I feel better cycling than anywhere else and that I do not care about the redness or swelling just stop the sensations pain, burning and tingling twitching.

                              I still wake up, look in the mirror and the face reflected still doesn't seem right I am still not used to at least seeing droopy puffy eyelids or the extreme swollen face. Still touching my face my nose feels odd as in smaller and the glands under my chin are not firm. Washing my feet and hands they are thinner. Inside my nose is not swollen and no more blood in my mucus. Lastly I barely take any antacids anymore from taking prescription ones for 15 years.

                              I can go back a lot further than 6 years at pictures of me and the droopy eyelids were there.

                              There is so much more to the story, and I am not cured, now I have spent longer than a day or so without it I can immediately feel it happening and the trigger pre covid could have been someone walking past me, or walking in to a shop. The mask seem to slow or stop it. But it has to be a decent quality, the blue ones seem to agitate me.

                              Main triggers I can identify are air fresheners, vape and seems like some aerosols like deodorant.

                              Lived in a terrace house before for 20 years and my neighbour forever spraying air freshener (moved in 2007) so much so they actually smelt of it themselves.

                              In 2010 where my warehouse was a scented candle and diffuser manufacturer moved in next door, my warehouse constantly smelt of essential oils.

                              In 2014 my wife took up vaping and I took Metronidazole this antibiotic drug is known now to completely stop your body processing propylene glycol so it builds up, and this was when I escalated to extreme burning redness and felt awful on it, stopped after 3 days.

                              It's also in candles, diffusers vape and thousands of other products.

                              Prior to that from 2010 to 2014 my symptoms were constant runny nose and lost my sense of smell. Which was not stopped by antihistamines or steroid nasal sprays.

                              I still feel like I am a madman but what will say there is growing evidence that humans are developing antibodies to PEG which is a similar chemical. It's used in a lot of drugs.

                              Google NHS peg allergy or drug induced peg allergy interesting for me the reaction is an igm response normal allergies are igg. Hence antihistamines do not work.

                              The only drug that has ever helped is cortisone steroids.

                              Missed out loads of signs I had when I look back with the benefit of hindsight.

                              Sorry longer post than I thought.

                              I just googled peg allergy, not done it in 18 months and quite shocked!!










                              Sent from my MAR-LX1B using Tapatalk

                              Thanks so much for the detail. I am glad you are feeling better. Quite a journey for you - I'm 5 yrs in and have seen dozens of docs, dozens of drugs, what a mess these complex medical cases can be. I do not look like the case studies (yet?) but overall my solid edema is getting worse long-term (hard to scrunch nose / move face). Interesting about metro drug. Anyway thanks again for the response. If you can think of anymore things or get anymore progress, pls come back and share. I'm trying to go to NYU Langone bc (I'm in the states) that's where the major Morbihan's paper came from. One of my former docs said he does not get success with accutane and solid facial edema but NYU Langone suggests dose / duration of accutane needs to be higher / longer than what people think to make a dent.

                              I'll digest what you said about allergies later (thanks for the detailed info). I moved earlier this year and it had no effect. One thing I will say about non-accutane treatments - is that they mght help a little in the beginning, but nothing seems to be "enough" and I rebound when I stop. Unless I jack the dose really high on my own (unsafe, do not recommend) and then I can see the edema drain before my eyes.

                              Good luck <3

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