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Treatment strategies...more ideas!

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Lisa3vermont
Lisa3vermont

Hello, I'm Lisa, a happy, healthy woman in my 50's - Random purple/red rash  (ankles/ legs/ wrists/elbows) appeared within past year... GA diagnosed by biopsy. Tried strong steroid topical cream w/ minimal results.

I am amazed how passive my dermatologist and physician have been! Bascially "don't know where it comes from, you have a diagnosis, nothing to be done." 

Glad to have found this forum, although I am surprised that there are so few members. Still, let's get some POSITIVE energy going around this!

Disclaimer: I want to freely offer my thoughts, but if they differ from someone else's course of action, no judgement is implied at all!

I do not want to take medication, but rather, gently explore the root of the GA. It's an auto-immune response, so our bodies our telling us to change something!!

In my very limited research so far, GLUTEN has been mentioned as a potential cause....has anyone else heard that? Because I have already gathered lots of compelling info on the merits of a gluten-free diet, I am starting that approach - not an easy path, but I'm willing to try it and will keep you all posted (fyi, altho not vegetarian, I do follow a pretty healthy diet - mostly whole/ fresh/ organic foods).

In terms of treating the exisiting rash, I have just read something about ULTRAVIOLET LIGHT THERAPY- anyone else heard about this for GA? I am going to investigate that asap, and will keep this group posted.

Thanks so much for this opportunity to connect and brainstorm!   

7 likes, 262 replies

262 Replies

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  • FrenglishCarole
    FrenglishCarole Lisa3vermont

    Posted

    Lisa - funny where your GA started, mine started at the same place - left front ankle, then legs and arms. I also called my first one the "mother ship" lol

    One thing to add - in addition to my hair analysis, I had a food intolerance testing done and gluten was not one of my problems, nor was glucose, etc. Some of the food to avoid for me was watermelon, malt, poppy seed, water chestnut, rye, lemon grass, white wine, maple sirup, etc.

    Cheers,

    Carole

     

    • Lisa3vermont
      Lisa3vermont FrenglishCarole

      Posted

      Carole...Whoa! Yes, it was my left ankle also. Are you also a Pisces?? Do you also have a hx of migraine? (I'm kidding and not kidding at the same time!)

      I'm really glad you mentioned that you have ruled out gluten intolerance - it's another reminder that we need to cast our nets wide in search of our own body-specific triggers. It may turn out that gluten is a frequent/common source irritant for GA, but there are many other avenues to explore. No quick fixes here, which is why this support forum is so helpful.

       

    • patty98033
      patty98033 FrenglishCarole

      Posted

      Carole.  Sounds like me.  No results on the 30 day elimination test so did the intolerance testing and none of the "top" allergens were on my list.  My list looked a lot like yours in that it was quite a variety of things.  I was not completely sold at first that this could be real but when the granulomas quit popping up and then in about month 2 or 3 started to fade, I was convinced that something in that group of foods was causing the problems.  Are you seeing any results from avoiding these foods?

      Patty

    • FrenglishCarole
      FrenglishCarole patty98033

      Posted

      To be honest Patty, my spots are starting to fade only since I started to take B5 - potassium and Vitamin C. I am not ready to say this is it yet but will keep you posted - I only started this vitamin regimen last Monday the 5th.
    • patty98033
      patty98033 FrenglishCarole

      Posted

      Carole - Please do keep us posted as to any results.  Probably too soon to be having any reaction to the B5.
    • cecilymary2
      cecilymary2 FrenglishCarole

      Posted

      Hi there,

      I read an article that red and white wine cause rosacea in women. So I thought to cease drinking wine for a few months. My GA seems to be fading under my arms, I can still see the blemishes but they are much less red. Blemishes on knees are still the same. It's only been about 2 months to notice the fading. I wonder if that is helping.

  • holly88724
    holly88724 Lisa3vermont

    Posted

    I am interested in hearing about the ULTRAVIOLET LIGHT THERAPY, someone else mentioned it did not help. The only thing I have ound to eliminate the bumps os Chinese Herbs for circulation. I found out about this on this forum. When I stopped the herbs it came back slowly but then bad. So I am not back on the chinese herbs, a largey amount I needed and they are again going away. Off Gluten too... There are few members I think becasue it is kind of a rare disease, I have read. If you can find a Chinese Medical Herbal shop, they can help you.
    • Lisa3vermont
      Lisa3vermont holly88724

      Posted

      Hi Holly, although I did mention light therapy in my original post, I have since collected enough data to veer away from that. Thanks for the info on Chinese herbs - I am still considering that, but for the present i am focusing on the probable root cause: food allergies. I have been (mostly) dairy-free for about 6 mos and strictly gluten-free for just one week. I want to take some time to get a clear reading on the gluten effect, but (based on your experience as well as others') I would not rule out Chinese medicine if the rash does not resolve. 

      Thanks for checking in! L.   

    • Lisa3vermont
      Lisa3vermont

      Posted

      I have no idea how the funny smiley face got inserted, lol!
    • RoBee
      RoBee holly88724

      Posted

      Can you please tell me the specific herbs that have helped from the Chinese herbalist.

      Thanks

    • holly88724
      holly88724 RoBee

      Posted

      RoBee,

      I have the box here and I have the bottle. Of course most of it is in Chinese. In english is says Vine Essence Pill., Herbal Supplement. I know one place that carries it. I went into some other shops and they did not have it. I can get you some. I have to go in and get more.

      On suggested use it says: take 4 pills 3 times a day after meals with lukewarm water. I was taking 4 once a day and it cleared up in 3 days, all bumps gone. Then I went off it and it came back after serveral months. Now I am on 4 in the morning and 4 at night. The bumps are almost gone after about 5 days of taking them. It has a list of herbs in it, none of which I have ever heard of and corn starch to hold it all together. I just read their paragraph, very interesting what it treats pretty much everything we are having trouble with. I don't have time right now to write it all down, but it has been a life-saver for me. It does not cure the disease but it supports all the internal things we are having trouble with, just to mention a few they list: Liver, Spleen, Muscles, Tendions, kidneys, lungs, circulatory, digestive and more...... 

    • j0603
      j0603 holly88724

      Posted

      Hi Holly sorry to but in but I am interested too! I am taking Plaquenil and a low dose of Prednisone my rash is almost gone I am in search of a cure to be rid of this for good. I wonder if you would be able to post a picture of the label of your herbs? Don't know if it's allowed but it would be so helpful. Thank you for posting : )
    • holly88724
      holly88724 j0603

      Posted

      I am not so sure there is a cure that I know of, but I do feel safer on this natural supplement than other toxic drugs that may have side effects.

      I will try and scan an image of this soon, looks like they give you the option to do this, to may attachments.

    • j0603
      j0603 holly88724

      Posted

      May be a hassle, I wanted to take it to an herb store and see if I can get some.  In the meantime I will ask about "vine essence" it sounds like a super immune booster?

      I have heard alot of theories here on the blog...what is interesting is that I have always been a junk food junkie and I have the GGA, then there are actual healthy eaters and "super" healthy eaters with it!  I don't think it is food related but that's just me.... May be like Chicken Pox (viral) wherein it lays dormant in our spinal fluid and comes out later when we get older and our immune system is weakened, similar to shingles.  Or, perhaps bacterial like TB or Leprosy....been researching for almost 2 years non-stop!   Anyway, thank you so much.

    • SallyN
      SallyN Lisa3vermont

      Posted

      Hi Lisa, I tend to agree with you.  I think it's best to follow-through on one course so that you can measure results.  The truth of the matter is that every single one of us is unique therefore what works for one may not work for another.  I had a session with a Body Access therapist on Tues where they do a type of kinesiology and ask the body questions and answers come through muscle responses - it might souind strange but I've had all sorts of ailments sorted out over the years this way.   Of course I don't expect things to resolve in an instant, it'd be nice to wave a magic wand and all the rings vanish overnight.  I just don't expect it to be that fast.  In the meantime I'll plug on with the course I'm on and keep measuring it.  I have to say I feel incredibly well at the moment, energy levels have increased and noticeably so since I embarked on the diet - now on day 11.  Ring on my elbow is less red and less pronounced so seems to be diminishing a bit.

      Interestingly a friend of mine told me she was covered in GA for a couple of years and they then spontaneously went.  She's not had a recurrence and this was at least 5 years ago.

      Cheers

      Sally

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