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Thread: The Full Arsenal (plus photo and introduction)

  1. #1
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    Default The Full Arsenal (plus photo and introduction)

    Hello,

    Since this is my first post, I'll start with an introduction. I'm 35, female, and was first diagnosed with rosacea 4 years ago. I have high red flushing which is near permanent but fluctuates with intensity. I also have p&p's but they are less of a concern for me than the redness.

    I've seen 5 docs and 1 derm, taken months of doxy and metrogel. The derm prescribed accutane but I was too chicken to try it, particularly since redness is my main concern and I've heard it doesn't help with redness. I'm also taking anti-histamines and occasional beta-blockers.

    In the last couple months my rosacea has reached new height and new territory. It seems to be spreading. I am also more sensitive to foods, chemicals, heat, cold, etc. People constantly ask if I am allergic to something or if I am terribly sunburned. In addition I'm experience itching for the first time.

    Some of my triggers are emotion, stress, anxiety, foods, sun, heat, cold, dust, and so much more. The redness triggers anxiety which triggers redness so I'm caught in a paradoxical catch-22. I probably don't need to say how low I feel or how this has affected all aspects of my life.

    In desperation, I've combed the internet and message boards and am now experimenting with advice that sounds intuitively promising to me. This is my full arsenal. I am 1 week into it.

    1.) Diet: Low GI / low sugar diet as per Brady Barrows. (While eating strictly only veggies and protein along with 3 liters of water per day, I'm also exploring the possibility of histamine intolerance, candida, and/or the need for an alkaline diet.)

    2.) Supplements: zinc, probiotics, fish oil

    3.) Topical: Using a 5% sulfur/10% sulfacetamide lotion. I've also just received Hosking's sulfur cream and I have the ZZ cream on order. The sulfur cream might be helping.

    4.) Psychological: I have anxiety issues that exacerbate my rosacea which exacerbates my anxiety. I'm trying breathing techniques and walking. I'm currently using Andrew Weil's audio book "Breathing: The Master Key to Self Healing". I am sure there are others available but this seems very practical and not too hokey.

    I desperately want to be tested for SIBO and try rifaximin but yesterday my doctor said no. She did test me for Lupus however, but I have no other symptoms - not an aching bone or muscle in my body. I do have frequent bloating and constipation however.

    I'm also interested in IPL or intense pulsed light therapy. I meet with a new derm in two weeks so I hope to explore SIBO and IPL in greater detail with him. I should mention that I live in rural western Australia and the doctor's i've seen look at me very odd when I mention a gut / rosacea connection. Even derms just want to give me accutane and push me out the door.

    I've attached a photo of my current condition. My dream is to post an "after photo" some day, but I've been working so hard these last 10 days on the arsenal only to lose hope yesterday when a doctor described my condition as unimproved and "angry".

    Please let me know if you have any advice or suggestions. This is the first time I've reached out to others.

    Thank you.snapshot.jpg
    Last edited by kailash; 1st August 2013 at 02:35 AM. Reason: omit repetition

  2. #2
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    Hi Kailash,

    I'm sorry to hear how about your suffering. Rosacea is such a horrible condition and I truely hope you find a way to get control of it.

    My redness is similar to yours in terms of where it is on the face, but mine is milder (for now...)

    I'm trying to stop it getting worse and maybe even reduce it. I'm currently using Red Light Therapy and nothing else. I have good days and bad. Further complicated by Seb Derm which I have under control using Raw Honey. Typically, I'm going to a wedding tomorrow and both conditions have flared - why does that always happen??? I just want to hide at home with the curtains shut.

    Next on my list of things to try is ZZ cream and finally IPL. I'll be really interested to know how you get on with ZZ.

    This is such a stupid condition. Why on earth does it affect the face area only in most cases!! I wouldn't mind if it was my arm, leg, chest, back, bum etc!!

  3. #3
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    I know what you mean; anywhere but the face area would be better. I'm glad to hear your redness is milder than mine but trust me, you have to act on this now otherwise you wont be saying that for long. I had mild redness for years and tried to treat it, but to be honest I didn't think too much of it. (I work in mining, so it's not exactly a beauty pageant every day). Now that I'm in unbearable discomfort and have reached the point where I think people are avoiding eye contact, I'm scared ****less and doing everything in my power to educate myself so I can hopefully learn how to keep this in control.

    I've never heard of Red Light Therapy. I'll have to look it up. I hope the wedding event went okay. That sounds dreadful. I'm fortunate to not have any major events in the near future.

    I will get the ZZ cream within the next few weeks, and I'll certainly post results.

  4. #4
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    Hi kailash,

    I work mining in WA as well. For me my flushing is greatly reduced when I adhere to a low salicylate diet. If it weren't for the diet I wouldn't be able to work in mining, I couldn't handle the flushing it's too debilitating.
    I suggest you give the diet a try, it's hard work to adhere to but it's worth it to not be flushing 24/7.
    I can tell by the photo you're an attractive girl and I bet that makes it hard for you too because if it weren't for rosacea you'd probably have no problems!!
    If it weren't for rosacea I'd be a completely different person, I avoid anything serious because I'm too afraid to let anyone know if suffering from depression due to my skin disorder. Even though I am able to keep the flushing and redness at bay through diet I am afraid to disclose this to others and I worry about being obliged to eat as others do in social situations.

  5. #5
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    Hi Kailash,

    I feel for you, this is such a difficult thing to deal with and people who haven't gone through it just don't get it. I've had good luck with sulfur products. I used Hoskings rosacea cream for a while, I liked it and it does have some benefit but I seem to get more out of the 5% sulfur / 10% sulfacetamide combo. I've also used low dose accutane with some benefit. When the doctors mention accutane, do they state low dose vs. high dose usage. Some rosaceans do well on a low dose of 5mg - 10mgs per day or even less. But a high dose of 40mgs per day or more is generally bad for rosacea. It might be worth talking to your doc about low dose accutane.

    -Dave-

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    Thanks Jem and Dave,

    It is so good to be able to talk about this with others who are also dealing with it. Ive never heard of salicylates, but since your post I'm starting to educate myself. Why not give it a try? Thanks for the suggestion. I'm here to learn and try anything that sounds reasonable.

    Dave, thanks for the info about low dose Accutane. I have a feeling this is what the derm will push when I see him on the 14th. I suppose I should keep an open mind. I took a break from the sulfur / sulfacetamide lotion last night and tried the Hoskings. This morning my skin is pink but appears smoother. However I think the Hoskings might be too oily where the sulfur cream is too dry. I might try alternating the two, at least until the ZZ cream arrives.

  7. #7
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    Quote Originally Posted by kailash View Post
    Thanks Jem and Dave,

    It is so good to be able to talk about this with others who are also dealing with it. Ive never heard of salicylates, but since your post I'm starting to educate myself. Why not give it a try? Thanks for the suggestion. I'm here to learn and try anything that sounds reasonable.

    Dave, thanks for the info about low dose Accutane. I have a feeling this is what the derm will push when I see him on the 14th. I suppose I should keep an open mind. I took a break from the sulfur / sulfacetamide lotion last night and tried the Hoskings. This morning my skin is pink but appears smoother. However I think the Hoskings might be too oily where the sulfur cream is too dry. I might try alternating the two, at least until the ZZ cream arrives.
    I think you will find the ZZ cream is also pretty drying, it caused my skin to get really flaky. Some people say that if they stick with the ZZ their skin eventually gets comfortable with it and stops getting really dry and flaky. I didn't stick with it long enough to find out if that was true for me.

  8. #8
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    Hi Kailash,

    Sorry to hear your symptoms are getting worse. It is frustrating, isn't it, when all our efforts are met with little reward.

    This rotten beast of a disease has many components and various causes, but the gut is always involved.
    If you want to try rifaximin, I suggest you contact the Sydney Centre for Digestive Diseases.

    http://www.cdd.com.au/

    They have a research department as well.
    I am under their care and while the treatment is not a cure, it is the best thing I have tried so far, in combination with the GAPS diet. ( In my case without the probiotics or fermented foods).
    I had to fly to see them for a consultation and thereafter I check in every so often via email or phone. I also have phone consultations from time to time.

    I am being treated for rosacea and severe flushing, which in my case seems to be a syndrome of it's own.
    My symptoms have reduced and life is better, but I am not cured.

    I have to treat my face with sulphur products as well, as the gut treatments only do so much.


    When I called last time, there was mention of a study for constipation. They use rifaximin and vancomycin, ( same drugs as I take). And possibly metronizadole.
    I have no idea who is eligible or if long distance patients can apply, but if you were interested and qualified, it might cut down on the medication cost.
    It's an option to consider anyway.

    If are are a flusher, I'd advise avoiding accutane, as it can cause irreversible severe flushing. A Type which is largely unresponsive to all treatments.
    It is a game of russian roulette. Some people don't get the nasty syndrome, but many do.
    There are safer treatments.

    I'd recommend reading all you can on diet, the gut based immune system, stealth infections.
    Also, I'd recommend finding yourself a physician who is trained in environmental medicine, as you will find them far more knowledgeable and helpful. They are usually more open to thinking outside the box and trying unusual treatments. They have access to non standard tests as well.
    Previous Numerous IPL.
    Supplements: Niacinamide, Vit K2, low D3, Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA.

    Treating for gut dysbiosis under specialist care. (This is helping).
    Previous GAPS diet. Testing tolerance of resistant starch.
    Fermented Foods. 2 to 3 days per week, Intermittent fasting -16-18 hours.

  9. #9
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    Quote Originally Posted by Mistica View Post
    Hi Kailash,

    Sorry to hear your symptoms are getting worse. It is frustrating, isn't it, when all our efforts are met with little reward.

    This rotten beast of a disease has many components and various causes, but the gut is always involved.
    If you want to try rifaximin, I suggest you contact the Sydney Centre for Digestive Diseases.

    http://www.cdd.com.au/

    They have a research department as well.
    I am under their care and while the treatment is not a cure, it is the best thing I have tried so far, in combination with the GAPS diet. ( In my case without the probiotics or fermented foods).
    I had to fly to see them for a consultation and thereafter I check in every so often via email or phone. I also have phone consultations from time to time.

    I am being treated for rosacea and severe flushing, which in my case seems to be a syndrome of it's own.
    My symptoms have reduced and life is better, but I am not cured.

    I have to treat my face with sulphur products as well, as the gut treatments only do so much.


    When I called last time, there was mention of a study for constipation. They use rifaximin and vancomycin, ( same drugs as I take). And possibly metronizadole.
    I have no idea who is eligible or if long distance patients can apply, but if you were interested and qualified, it might cut down on the medication cost.
    It's an option to consider anyway.

    If are are a flusher, I'd advise avoiding accutane, as it can cause irreversible severe flushing. A Type which is largely unresponsive to all treatments.
    It is a game of russian roulette. Some people don't get the nasty syndrome, but many do.
    There are safer treatments.

    I'd recommend reading all you can on diet, the gut based immune system, stealth infections.
    Also, I'd recommend finding yourself a physician who is trained in environmental medicine, as you will find them far more knowledgeable and helpful. They are usually more open to thinking outside the box and trying unusual treatments. They have access to non standard tests as well.
    Wow, thanks Mistica. This information looks invaluable. I'm almost giddy with the prospect of learning more & contacting the Sydney Centre for Digestive Diseases. How long have you been under their care? How long have you been taking the rifaximin and vancomycin? Is it making a difference?

    I am definitely also a severe flusher. I can't think the wrong thing or eat the wrong thing without going hot and red. Considering what you wrote, I think this will make accutane a very last resort for me.

    Do you recommend any particular books or websites for reading about "diet, the gut based immune system, stealth infections"?

    Thanks so much for the feedback and info.

  10. #10
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    Thanks so much Mistica,

    This looks like really valuable information. I'm particularly excited to contact the CDD and I hope to fly to Sydney for a consultation. I'm now researching the GAPS diet. Is there any reason you are skipping probiotics and fermented foods? I know I particularly can't handle fermented foods. I tried fermented cod liver oil and it made me flush terribly. (I'm also a severe flusher).

    I could ask you a million questions. Like... how long have you been taking rifaximin and vancomycin? Have you tried metronizadole? Do you recommend a particular doctor? Particular tests? But... I'll check your past posts to see if I can find more information. Thank you so much for your response. I feel like this will take me in the right direction.

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