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  • Antibiotics

    I’ve had my follow up at my dermatologist and he has again suggested Doxycycline 100mg for my eyes and skin.
    When I said I want to avoid antibiotics he said “That it was considered mainstream and accepted medication for Rosacea”

    I don’t know what to do as I’ve never actually tried antibiotics for Rosacea but I am scared coz my eyes have been swollen for about a year and a half. Does antibiotics take the burning and sensitivity away. I can’t use the zz cream and my skin is getting worse.
    Has anyone had success at remission with antibiotics if so which ones at what dose?
    I’m so scared they are going to make me sicker if I try them.
    I’m trying to get a prescription for oral ivermectin but they are making me out to be mad for wanting to try it.

  • #2
    Originally posted by Rubydo1 View Post
    I’ve had my follow up at my dermatologist and he has again suggested Doxycycline 100mg for my eyes and skin.
    When I said I want to avoid antibiotics he said “That it was considered mainstream and accepted medication for Rosacea”

    I don’t know what to do as I’ve never actually tried antibiotics for Rosacea but I am scared coz my eyes have been swollen for about a year and a half. Does antibiotics take the burning and sensitivity away. I can’t use the zz cream and my skin is getting worse.
    Has anyone had success at remission with antibiotics if so which ones at what dose?
    I’m so scared they are going to make me sicker if I try them.
    I’m trying to get a prescription for oral ivermectin but they are making me out to be mad for wanting to try it.
    Tell me again what all your symptoms are.

    Comment


    • #3
      Originally posted by Momof View Post
      Tell me again what all your symptoms are.
      Burning in my stomach mouth and lips hands and feet with slight tremors .
      Eye lids constantly semi swollen swell up even more at night. Eyes very dry
      Skin struggles with even soap as skin reacts and is very dry. Rosacea and SD

      Comment


      • #4
        I was on doxycycline and then minocycline for about 12 months a few years ago. It helped get my P&Ps under control (in combination with topical Metronidazole) but the biggest difference was on my eyes - doxy really works for ocular rosacea.

        As with any medicine, you need to weigh up and pros and cons of taking it. There are side effects and in my (non-doctor) opinion, I think it should only be used as a short term treatment to bring things under control

        EDIT: I should have noted, the effect on your ocular rosacea wears off once you come off the antibiotics. In my case my eyes probably started going downhill again about 3 months after I stopped taking the antibiotics.

        Comment


        • #5
          Originally posted by Rubydo1 View Post
          I’ve had my follow up at my dermatologist and he has again suggested Doxycycline 100mg for my eyes and skin.
          When I said I want to avoid antibiotics he said “That it was considered mainstream and accepted medication for Rosacea”

          I don’t know what to do as I’ve never actually tried antibiotics for Rosacea but I am scared coz my eyes have been swollen for about a year and a half. Does antibiotics take the burning and sensitivity away. I can’t use the zz cream and my skin is getting worse.
          Has anyone had success at remission with antibiotics if so which ones at what dose?
          I’m so scared they are going to make me sicker if I try them.
          I’m trying to get a prescription for oral ivermectin but they are making me out to be mad for wanting to try it.
          Unless you want to be on antibiotics for the rest of your life, please find a different dermatologist. Terrible advice; typical treatment of the symptom and not the cause.
          How I was cured from Demodectic / Demodex Rosacea (Types 1 & 2 & nearing 3), Seborrhoeic Dermatitis and Eczema

          Got a smartphone? Then please post a non-revealing pic of your face/skin to www.imgur.com, instead of using walls of text to describe it to us. It may be the best thing you've ever done!

          Comment


          • #6
            Originally posted by Rubydo1 View Post
            Burning in my stomach mouth and lips hands and feet with slight tremors .
            Eye lids constantly semi swollen swell up even more at night. Eyes very dry
            Skin struggles with even soap as skin reacts and is very dry. Rosacea and SD
            Your other symptoms, particularly the tremors, sound concerning.
            What types of investigations are you going to have to determine the cause?
            Derms don't understand much about internal medicine.
            You need to find a specialist who can run appropriate testing, at least to rule out autoimmunity and other diseases which require specialist treatment.

            You still have to address your dietary issues, no matter what.

            Why wash your face with soap? Just rinse it gently with tepid water. I never use cleanser on my face and even when I wash my hair, which is daily, I manage to just tip my head back a bit in the shower and most of the soap water runs away from my face.
            I should note, I don't wear makeup, so cleansers aren't necessary. Can you live without make up for a while? (assuming you wear it, which you may not).

            I wouldn't be taking doxy or any other antibiotic at this stage.
            Doxy is notorious for turning classic rosaceans into flushers.

            By the way, oral ivermectin has the potential to cause neurotoxicity. I had an adverse reaction to it, as well as metronizadole.(Drug from hell). Given you already have tremors, I would strongly caution you to avoid such drugs.
            I know people here are obsessed with demodex, but your symptoms are not reflective of a demodex issue and if you take ivermectin or any other drug out of desperation (and I have been there), you are putting yourself at risk for developing additional issues.

            Can you tolerate colostrum or whey, glutamine etc?
            What about home made jelly? I am just tossing around ideas to get some nutrition into you whilst giving the gut a rest. You'd need some carbs with protein sources though, otherwise you could start flushing.
            Last edited by Mistica; 17 February 2020, 08:58 AM.
            Previous Numerous IPL.
            Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

            Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

            Treating for gut dysbiosis.(This is helping).
            Previous GAPS diet. Have now introduced lots of fibre.
            Fermented Foods. Intermittent fasting -16-18 hours.
            Oral Colostrum. Helps reduce food reactions.

            Comment


            • #7
              Originally posted by Mistica View Post
              Your other symptoms, particularly the tremors, sound concerning.
              What types of investigations are you going to have to determine the cause?
              Derms don't understand much about internal medicine.
              You need to find a specialist who can run appropriate testing, at least to rule out autoimmunity and other diseases which require specialist treatment.

              You still have to address your dietary issues, no matter what.

              Why wash your face with soap? Just rinse it gently with tepid water. I never use cleanser on my face and even when I wash my hair, which is daily, I manage to just tip my head back a bit in the shower and most of the soap water runs away from my face.
              I should note, I don't wear makeup, so cleansers aren't necessary. Can you live without make up for a while? (assuming you wear it, which you may not).

              I wouldn't be taking doxy or any other antibiotic at this stage.
              Doxy is notorious for turning classic rosaceans into flushers.

              By the way, oral ivermectin has the potential to cause neurotoxicity. I had an adverse reaction to it, as well as metronizadole.(Drug from hell). Given you already have tremors, I would strongly caution you to avoid such drugs.
              I know people here are obsessed with demodex, but your symptoms are not reflective of a demodex issue and if you take ivermectin or any other drug out of desperation (and I have been there), you are putting yourself at risk for developing additional issues.

              Can you tolerate colostrum or whey, glutamine etc?
              What about home made jelly? I am just tossing around ideas to get some nutrition into you whilst giving the gut a rest. You'd need some carbs with protein sources though, otherwise you could start flushing.
              All auto immune came back negative. CT scan also negative.
              I had York tests done. I don’t know how accurate these are but milk yeast and egg white sensitivity’s came back.
              I’m not lactose intolerant or Gluten.
              I’m eating meat as stomach not great with veg so stick to low fodmap veg and fruit.
              I’m taking Zinc D3 and B COMPLEX
              I was taking a probiotic but I’m not sure they help.
              It’s my eyes I’m concerned about.
              I was making my own out bone broth out of ox tail or chicken but this often gives me bad guts.
              Which colostrum do you suggest? And can you take it if sensitive to milk ? I’m not sure if York Test Results can be trusted.

              Comment


              • #8
                Originally posted by Rubydo1 View Post
                Burning in my stomach mouth and lips hands and feet with slight tremors .
                Eye lids constantly semi swollen swell up even more at night. Eyes very dry
                Skin struggles with even soap as skin reacts and is very dry. Rosacea and SD
                The burning of the hands and feet does sound like erythromelalgia - they are classic symptoms. As I suggested to you before, I would get a referral to Prof Denton at the Royal Free who is the UK expert in this condition.

                https://www.nhs.uk/conditions/erythromelalgia/

                I don't think you have to treat only for demodex mites, or exclude their treatment, they are simply an obvious part of treatment as 95% of adults have them and they are involved in the flushing process according to the latest research (Prof Powell, Dublin).

                If you don't want to travel to London you can find an erythromelalgia expert locally here:
                https://erythromelalgia.org/

                See 'Physician Directory' under Support.

                Allergy tests are not very accurate according to leading allergy experts - they give false positives and negatives. I would test yourself whether removing wheat, for example, helps you.

                I use the Efracea, which is very low dose Doxycyline 40mg - it's supposed to be below the dose of antibiotic to give an anti-inflammatory effect. I'd recommend this. But hydroxychloroquine etc can be more helpful. I wouldn't accept the 100mg doxycyline if you want to avoid the antibiotic effect. I agree doxycycline can be pretty helpful for rosacea of the eyes.
                Last edited by antwantsclear; 17 February 2020, 01:37 PM.

                Comment


                • #9
                  Originally posted by antwantsclear View Post
                  The burning of the hands and feet does sound like erythromelalgia - they are classic symptoms. As I suggested to you before, I would get a referral to Prof Denton at the Royal Free who is the UK expert in this condition.

                  https://www.nhs.uk/conditions/erythromelalgia/

                  I don't think you have to treat only for demodex mites, or exclude their treatment, they are simply an obvious part of treatment as 95% of adults have them and they are involved in the flushing process according to the latest research (Prof Powell, Dublin).

                  If you don't want to travel to London you can find an erythromelalgia expert locally here:
                  https://erythromelalgia.org/

                  See 'Physician Directory' under Support.

                  Allergy tests are not very accurate according to leading allergy experts - they give false positives and negatives. I would test yourself whether removing wheat, for example, helps you.
                  I have cut dairy and wheat and sugar and yeas. Milk substitutes give me a sore throat so I’m struggling calcium wise. I’m thinking of reintroducing yoghurt. When I said to York Labs that I wasn’t lactose intolerant they said it was the protein in milk. But I really can’t find a dairy substitute that agrees with me.
                  I’m waiting to see a specialist but it’s taking months. I’m at the dental hospital tomorrow for my burning mouth. I literally feel like a burns victim inside and out it a stupid situation.
                  But my lips are shedding like mad.
                  So how do you treat ocular Rosacea without antibiotics?
                  Last edited by Rubydo1; 17 February 2020, 01:41 PM.

                  Comment


                  • #10
                    Originally posted by Rubydo1 View Post
                    I have cut dairy and wheat and sugar and yeas. Milk substitutes give me a sore throat so I’m struggling calcium wise. I’m thinking of reintroducing yoghurt. When I said to York Labs that I wasn’t lactose intolerant they said it was the protein in milk. But I really can’t find a dairy substitute that agrees with me.
                    I’m waiting to see a specialist but it’s taking months. I’m at the dental hospital tomorrow for my burning mouth.
                    This tea tree oil tooth paste has really helped me with mouth ulcers/burning:
                    https://www.amazon.co.uk/Desert-Esse...NsaWNrPXRydWU=

                    I find the probiotic, Symprove, helps me tolerate a little dairy every few days, together with Integrative Therapeutics Similase GFCF. I've never found a milk substitute that agrees with me either.

                    The shaking is concerning - not sure a dermatologist is best placed to help with that symptom.

                    What type of specialist are you waiting to see?

                    Some people treat ocular rosacea with tea tree oil wipes.
                    https://www.amazon.co.uk/Oust-Demode...1947197&sr=8-7
                    Last edited by antwantsclear; 17 February 2020, 01:50 PM.

                    Comment


                    • #11
                      -
                      Last edited by owldog; 10 December 2020, 07:34 PM.

                      Comment


                      • #12
                        Originally posted by antwantsclear View Post
                        This tea tree oil tooth paste has really helped me with mouth ulcers/burning:
                        https://www.amazon.co.uk/Desert-Esse...NsaWNrPXRydWU=

                        I find the probiotic, Symprove, helps me tolerate a little dairy every few days, together with Integrative Therapeutics Similase GFCF. I've never found a milk substitute that agrees with me either.

                        The shaking is concerning - not sure a dermatologist is best placed to help with that symptom.

                        What type of specialist are you waiting to see?

                        Some people treat ocular rosacea with tea tree oil wipes.
                        https://www.amazon.co.uk/Oust-Demode...1947197&sr=8-7
                        I’m waiting to see a specialist in unexplained conditions neurologist apparently one of the best in the country. But no appointment as of yet. I use Optase tree wipes already. I’ve just tried vsl#3 and they really upset my guts. Which symprove ? Is there unflavoured ones ? Do you think Colostrum might help.

                        Comment


                        • #13
                          All auto immune came back negative. CT scan also negative.
                          I had York tests done
                          I am curious as to why your doctor ordered a CT scan for digestive complaints.
                          What did he/she hope to see?

                          A CT has limitations and if a doctor wants to see the inside of your digestive tract, it requires a camera.

                          Did he fully appreciate your symptoms, which, as I understand them, are stomach and abdominal?
                          Along with the burning mouth and extremities.

                          What do you mean by
                          I was making my own out bone broth out of ox tail or chicken but this often gives me bad guts
                          ?
                          Do you mean pain, diarrhea? Did it cause your skin, including limbs to buzz, tingle, flush?

                          Also, is this all you eat?
                          I’m eating meat as stomach not great with veg so stick to low fodmap veg and fruit.
                          Where do you get your carbs, fats?


                          I can't recommend a brand of anything as I live in a different country sorry.

                          You can't test for true Allergies with IgG tests.
                          Elimination of the foods for a period of time, followed by reintroducing them one at a time seems to be the standard way to test for intolerances.

                          Regarding your burning mouth, have you tried opening a probiotic and placing the contents in your mouth and swishing them around with saliva and holding them there for 5 minutes or so before swallowing them?
                          Previous Numerous IPL.
                          Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

                          Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

                          Treating for gut dysbiosis.(This is helping).
                          Previous GAPS diet. Have now introduced lots of fibre.
                          Fermented Foods. Intermittent fasting -16-18 hours.
                          Oral Colostrum. Helps reduce food reactions.

                          Comment


                          • #14
                            I’ve just tried vsl#3 and they really upset my guts
                            If probiotics are displacing unfavourable bacteria, diarrhea and other complaints can be expected. This would settle down after a while.
                            Previous Numerous IPL.
                            Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

                            Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

                            Treating for gut dysbiosis.(This is helping).
                            Previous GAPS diet. Have now introduced lots of fibre.
                            Fermented Foods. Intermittent fasting -16-18 hours.
                            Oral Colostrum. Helps reduce food reactions.

                            Comment


                            • #15
                              Originally posted by Mistica View Post
                              I am curious as to why your doctor ordered a CT scan for digestive complaints.
                              What did he/she hope to see?

                              A CT has limitations and if a doctor wants to see the inside of your digestive tract, it requires a camera.

                              Did he fully appreciate your symptoms, which, as I understand them, are stomach and abdominal?
                              Along with the burning mouth and extremities.

                              What do you mean by ?
                              Do you mean pain, diarrhea? Did it cause your skin, including limbs to buzz, tingle, flush?

                              Also, is this all you eat?

                              Where do you get your carbs, fats?


                              I can't recommend a brand of anything as I live in a different country sorry.

                              You can't test for true Allergies with IgG tests.
                              Elimination of the foods for a period of time, followed by reintroducing them one at a time seems to be the standard way to test for intolerances.

                              Regarding your burning mouth, have you tried opening a probiotic and placing the contents in your mouth and swishing them around with saliva and holding them there for 5 minutes or so before swallowing them?
                              I have had camera down and I was diagnosed with Gastritis and diverticular Disease.
                              Ct scan because of burning and shaking as I have fractures spine and neck from a car crash so just checking to see if anything had moved. I’ve being doing elimination diet but half the things on the diet I can’t eat like spinach oranges sprouts.
                              Things I can eat salad kale broccoli (but not much) carrots parsnips potato’s fruit grapes strawberries blueberries grapes tinned peaches.
                              Can’t touch peppers tomatoes
                              Can’t touch gratefruit oranges bananas
                              Burning mouth I tried antifungal treatment.
                              It’s very hard with the elimination diet as it’s how long after you get your symptom.
                              ive Noticed a lot of my food is coming through undigested but they won’t treat test me for low stomach acid but anti acids they gave me for Gastritis made me really ill. They kinda just Sind me off now so don’t know what to do.

                              Comment

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