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Thread: Resistant to treatment and thickened skin

  1. #1
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    Default Resistant to treatment and thickened skin

    Hey guys, apologies for the long wall of text. I hope someone here will be able to give me some hope because suffering with this awful disease has taken a toll on me over the years. Some history, I?ve struggled with skin problems since I hit puberty. It started with regular teenage acne, then it started to become cystic and inflamed when I was 17/18. I saw a couple derms in the beginning, they gave me the typical harsh topicals that my skin couldn?t tolerate, so I basically just ignored my skin for several years after that. My skin has been very sensitive ever since puberty, and I couldn?t even wash my face with water without my skin getting all blotchy and angry, moisturizer burned and also made it blotchy, so I basically wasn?t able to use anything topical to take care of my skin. I wasn?t diagnosed with rosacea until 2017, tho I?m sure I had it before then. My rosacea is type 1 and type 2. I flush mostly with anxiety and emotions, but I also seem to have random flushing with no actual trigger at times. The flushing isn?t too often luckily, the p&p?s are very persistent and I have background redness I assume from the years of constant inflammation. I also think it has caused swelling in my cheeks as well as what my derm called thickened skin, which she said was reducing with the azelaic acid cream I used. I used that for 5 months and was still getting papules and inflammation so she switched me to triple cream. When I was first diagnosed in 2017 by my previous derm, she gave me 100 mg of doxy for 4 weeks which didn?t help at all. She then gave me soolantra which I was really hopeful for, I used it for about 5 weeks but ended up quitting bc I was having awful cystic and pustule breakouts after mostly clearing up my cystic acne with spironolactone, looking back I probably should?ve stuck with it but the breakouts were really hard to deal with. I tried different skin care products to help heal my skin and none of them ever calmed it down just made it more irritated. I gave up for another two years bc I felt I was getting no help from derms. I started treating the rosacea seriously in fall 2020. A year before that I took fluconazole bc I was having bad seb derm and folliculitis all over my body which helped that somewhat but both those conditions seem to be bad again. In October 2020 my derm prescribed me azelaic acid as I mentioned above, and now I?m using triple cream with ivermectin, metro cream, and AA, been using it for past 3 weeks or so. I also had 2 ipls and 1 v-beam in 2017, both didn?t help at all and I broke out in huge pustules after v-beam. I have SIBO which I?m finishing up antibiotics for, tomorrow is my last day. Derm and integrative dr both think sibo may be likely cause of my rosacea but my symptoms haven?t improved yet all the years of chronic cystic acne and inflammation have left dozens of scars on my cheeks and my pores are enlarged and stretched, and I just feel so unattractive and hopeless, as it?s been a decade of these skin problems and I?ve still not been able to get it under control. It?s just all very distressing and derms have never been very helpful. What would cause such treatment resistant rosacea in the first place? I can?t stand the fact that I?m putting so much time and energy into treating the disease and it?s just not improving. And now I?m freaking out abt the thickened skin worrying myself into a panic attack over phymatous rosacea and the disfigurement that causes. What more can I do? I just want to be able to get it under control so I can get scar treatments, and so it doesn?t get any worse. If there is anyone out there who has struggled like this and finally found the solution I would really appreciate hearing from you. Thanks for reading.

  2. #2
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    Quote Originally Posted by clearskin93 View Post
    Hey guys, apologies for the long wall of text. I hope someone here will be able to give me some hope because suffering with this awful disease has taken a toll on me over the years. Some history, I?ve struggled with skin problems since I hit puberty. It started with regular teenage acne, then it started to become cystic and inflamed when I was 17/18. I saw a couple derms in the beginning, they gave me the typical harsh topicals that my skin couldn?t tolerate, so I basically just ignored my skin for several years after that. My skin has been very sensitive ever since puberty, and I couldn?t even wash my face with water without my skin getting all blotchy and angry, moisturizer burned and also made it blotchy, so I basically wasn?t able to use anything topical to take care of my skin. I wasn?t diagnosed with rosacea until 2017, tho I?m sure I had it before then. My rosacea is type 1 and type 2. I flush mostly with anxiety and emotions, but I also seem to have random flushing with no actual trigger at times. The flushing isn?t too often luckily, the p&p?s are very persistent and I have background redness I assume from the years of constant inflammation. I also think it has caused swelling in my cheeks as well as what my derm called thickened skin, which she said was reducing with the azelaic acid cream I used. I used that for 5 months and was still getting papules and inflammation so she switched me to triple cream. When I was first diagnosed in 2017 by my previous derm, she gave me 100 mg of doxy for 4 weeks which didn?t help at all. She then gave me soolantra which I was really hopeful for, I used it for about 5 weeks but ended up quitting bc I was having awful cystic and pustule breakouts after mostly clearing up my cystic acne with spironolactone, looking back I probably should?ve stuck with it but the breakouts were really hard to deal with. I tried different skin care products to help heal my skin and none of them ever calmed it down just made it more irritated. I gave up for another two years bc I felt I was getting no help from derms. I started treating the rosacea seriously in fall 2020. A year before that I took fluconazole bc I was having bad seb derm and folliculitis all over my body which helped that somewhat but both those conditions seem to be bad again. In October 2020 my derm prescribed me azelaic acid as I mentioned above, and now I?m using triple cream with ivermectin, metro cream, and AA, been using it for past 3 weeks or so. I also had 2 ipls and 1 v-beam in 2017, both didn?t help at all and I broke out in huge pustules after v-beam. I have SIBO which I?m finishing up antibiotics for, tomorrow is my last day. Derm and integrative dr both think sibo may be likely cause of my rosacea but my symptoms haven?t improved yet all the years of chronic cystic acne and inflammation have left dozens of scars on my cheeks and my pores are enlarged and stretched, and I just feel so unattractive and hopeless, as it?s been a decade of these skin problems and I?ve still not been able to get it under control. It?s just all very distressing and derms have never been very helpful. What would cause such treatment resistant rosacea in the first place? I can?t stand the fact that I?m putting so much time and energy into treating the disease and it?s just not improving. And now I?m freaking out abt the thickened skin worrying myself into a panic attack over phymatous rosacea and the disfigurement that causes. What more can I do? I just want to be able to get it under control so I can get scar treatments, and so it doesn?t get any worse. If there is anyone out there who has struggled like this and finally found the solution I would really appreciate hearing from you. Thanks for reading.
    1. Did they do a test for SIBO and identify the bacteria causing it?
    2. Which antibiotic did they give you to treat the SIBO? Did it help? Have they retested the SIBO to make sure that you are now clear of the bacterial overgrowth?
    3. Did they test you for demodex skin mites? It sounds like you have them based on the Type 2 Rosacea diagnosis, the pustules and folliculitis.

    If you have a demodex overpopulation, beware of several facts about demodex that will help you understand why treatment makes it temporarily appear worse before it gets better. The mites live and die on a 2-3 week cycle. The mites eat skin oil. When they die, die off "pustules" appear - but the "pus' isn't bacterial for the most part, its dead mites. Any treatment with Ivermectin (oral or topical), Oral Metronidazole, or tea tree oil, etc. is going to kill mites more at one time than happens naturally. So it does look worse temporarily before it clears. The mites come out to mate at night so its important to treat your clean skin at night before bed for best results. The mites track bacteria and fungus around and may cause secondary bacterial and fungal infections like Seb-d. The mites lay eggs which hatch after 2-3 days. It takes them 6 days to mature to adults and start breeding. Ivermectin in Soolantra topical cream will kill the adults but not the eggs. That is why you have to keep treating with topical Soolantra for at least 16 weeks. It keeps killing off the adults and reduces the number of breeding mites slowly but surely as the last batch of eggs hatch.

    It is extremely possible that the SIBO is the root of the problem. The bacterial overgrowth is possibly triggering something in your skin to allow the mites to flourish. Either it over feeds the mites by making your skin oilier, or stimulates the mites to overbreed, or it suppresses your bodies natural immune defenses against the mites allowing them to get overpopulated. If your SIBO is cleared up you probably don't need the following treatment. However this is what worked for me.

    If your SIBO is still active it might take a different antibiotic to clear it up. Each antibiotic acts against a limited number of different bacteria. Here is what worked for me after decades of misdiagnosis: For an active demodex overpopulation there is a 2 week, 2 drug, oral treatment that is highly effective and inexpensive. I had demodex caused skin and eye issues and very likely SIBO for decades. It was misdiagnosed by 4 different board certified dermatologists and one board certified opthalmologi
    st as bacterial acne, allergic conjunctivitis, and also separately as a "sensitive stomach" for literally decades. None of the expensive acne treatments ever worked. When it turned into a severe case of ocular rosacea (aka blepharitis demodex), I took the 2 drug combined 2 week treatment for demodex and it worked. I found the paper on the 2 week combined 2 drug treatment here:

    https://www.sciencedirect.com/scienc...0197121201315X

    The 2 once a week doses of Oral Ivermectin kill off the adult mites. The 2 week 3 times a day doses of Oral Metronidazole very likely killed off the bacterial overgrowth in my gut. Oral Metronidazole is highly effective at clearing at least 2 different strains of bacteria associated with SIBO.

    Hypochlorous Acid (HOCL) is a substance produced by the human body. It is a weak acid (0.01% to 0.02% concentration) but highly effective at killing bacteria, fungus, viruses and the nymph (juvenile) form of demodex skin mites. It is very soothing and non-irritating. It also breaks up biofilm. I use the Briotech HOCL face spray nightly for maintenance after washing my face with a tea tree oil foam cleanser from The Body shop. HOCL spray is available in various brands on Amazon. Heyedrate and Occusoft Hypochlor are also good, just more expensive.

    http://amazon.com/BRIOTECH-Topical-S...2s9dHJ1ZQ&th=1
    Last edited by ElaineA; 3rd May 2021 at 12:48 AM.

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