Treatment strategies...more ideas!

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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!   

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  • Posted

    Hi All,  All these folks out there with this horrible mess, I'm so glad I found you all (while I'm really sorry all of you are suffering too).  Just a couple of updates from my camp.

    I am Gluten free for almost year (I am FINALLY seeing some good results).  Also, dairy free and chemical free).

    I say someone mention they had some allergy/intolerance tests.  I've had blood work done like you can't belive and it all came back - NOTHING.  However by trial and error I found a TON of stuff that makes the GGA explode.

    I had no luck with cream, drugs or light therapy.  Huge waste of money for me AND I now have a 2 inch diameter hole in my leg check google photos for "fat atrophy" when I let the dermo do injections.  I say RUN the other direction if someone suggests that option.  I went to a plastic surgeon (and to fix will cost 3-4 thousand and will not be covered under insurance, cosmetic).

    My best suggestion is elimination diet, and you are correct - it will takes months and months to see any result. 

    Don't let anyone tell you that creams, shampoo, cat litter, etc can't be the cause of this.  I am SO gluten sensitive that I was having a reaction around my lips to a lip balm that I was using, new balm, no rash.   Thank goodness the GGA on my face went away.   Good Luck to you all. 

     

    • Posted

      Hi Deb, Welcome to the discussion - I'm so sorry for your difficult journey! But you have just given this group a great summary of useful info.(I wonder if DNA/ hair analysis would catch an intolerance that would be missed by a blood test?)

      Congratulations on finding your own answers...keep us posted!  

  • Posted

    Hi Lisa

    I've read quite a few of your replies and some of my experiences resonate with a few of your correspondents!

    I totally believe that whatever is happening on the outside is an outer manifestation of imbalances on the inside.  When someone calls it a "disease" I don't think of it as something you "catch" but as a "dis"-"ease" i.e. an imbalance.  Exterior topical creams and stuff may help moisturise the areas but we have to catch what's happening to cause those rings and patches to pop up in the first place.  Not much point treating the symptoms without addressing the underlying cause.

    Like most people I've been researching like mad - my own GP practice had no idea what it was and he had to go and ask all the other doctors before one of them recognised the annular ring, and yes it was diagnosed as GA.  They wanted to give me steroid creams which I felt uncomfortable about as I haven't taken any chemical medication for at least the last 25 years - I move in the complementary medicine circles 99% of the time.  I did agree for a couple of months but with no effect whatsoever.

    This was only one ring though - on an elbow where I've had other things flare up before including a lipoma I had removed (interesting as I tripped and fell on that elbow about 20 years ago).  However since I saw the GP about my 1 ring in the summer, in the last 4 months patches have been appearing as "watermarks" i.e. patch-type granuloma on the inside of both knees, below and above the belly button, both armpits and groin area.

    I'm determined to get to the bottom of this and so have decided the most obvious place to start is with the gut and look at what I'm putting into my system.  I've been eating wholesome organic food since I was 30 (now 64), no animal meat (althoug do eat chicken and fish), never eat processed food, never drink carbonated drinks, cook everything from scratch, supplement, meditate, exercise, and all the things that 'should' help.

    I'm interested in the idea that this is a post-menopausal condition, and it's about 8 years since I went through the menopause so not sure why it's popping up now - why did it take so long?

    I've decided to go on an auto-immune 30 day elimination diet as I've been following the Paleo way of eating for a while. There is a book on this.  I've cut out eggs, all sugar, all grains (i.e. 100% gluten-free), nuts, seeds, most fruits, all nightshades (tomatoes, peppers, white potato, aubergine), all dairy, alcohol, caffeine so you might think what's left?  Actually quite a lot, and lucky I don't have a sweet tooth so enjoying herbal teas, green smoothies (100% veggie, limited fruit), seafood, salmon, mackerel, herring, turkey/chicken, sweet potatoes, beetroots, parsnips, carrots, green veggies, coconut milk kefir and now starting to learn about how to make fermented veggies to give my gut a chance.  I may well have a leaky gut so here's a chance to heal it.

    I'm on day 8 now, and the ring on my elbow has calmed down, so no more inflammation, the patches are still hanging on though.  I will see this through and time will tell - I am aware this could well be a slow process, my skin in general is looking much healthier so "watch this space" - I am very optimistic!

    Cheers

    Sally

    • Posted

      Sally...a briliant post! I feel like we are really  getting somewhere.. and have you noticed that many of us seem to share a similar profile (so interesting)..

      I have not mentioned this before, but my GA started out with one single spot front and center on my ankle...I now call this "the mothership" and the other rashes on legs and arms followed within 4-6 mos. I think we are seeing general consensus that GA is an internal imbalance (auto-ammune condition) which gets triggered at some mysterious point in time by the foods we eat/ things we ingest. The rash is only the outward manifestation.

      You've chosen a challenging diet, but  how amazing that you see reduced inflammation in just 8 days! 

      Please stay connected here - we need your data and your great attitude! L.

      PS Yay to fermented veggies!

    • Posted

      A great start!  I did a 30 day elimination (Whole 30) diet and had no results which is why I went on to have the hair sample tested.  Best of luck to you on this.  Sounds like you could have a lot of success with it.
    • Posted

      I'd be interested to have the hair sample tested if nothing comes of it.  I had all the mercury removed from my teeth about 6 years ago as I knew it was causing me problems - the dentist had a contraption to measure levels of toxicity and every single tooth that had an amalgam filling in it bar one was over the danger level. It was safely removed with all the oxygen and rubber dams to prevent ingesting the mercury and within a few days of it all being completed I felt immediately brilliant - water retention stopped, headaches went so I'm open to anything that will identify and flush out toxins and allow the granuloma to float off into outer space.  Hopefully the Auto-immune30 will do that!
    • Posted

      Hi Sally, just wondering if you had the GGA prior to removing the fillings? I just had a bunch removed with no precautions at all.
    • Posted

      I don't know about Sally but personally yes I did have the GA prior to my fillings removal
    • Posted

      Not at all, the mercury fillings were removed in fact even longer than 6 years now I've checked - it was 8 years ago!  The GA only reared its head early last year in 2014, spots started less than 1 year ago on my elbow and developed into the "mother" ring by the summer and then the patches started following in October within a matter of a couple of weeks following the removal of a small mole (benign) from my face.  I don't know if there's any significance in that.  So the GA is very recent, within the last year..

      I was incredibly well supported with the mercury removal, as well as the precautions with supplements designed to soak up any leaked mercury in my system.  

      There's a lot of detective work going on and I'm off to see a "Body Access" therapist this morning to see if she can shed any more light on what's taking place.

    • Posted

      Hi Sally, I'm curious to hear about your session w/ Body Access therapist! Any new perspectives and/or consensus about the dietary trials you are doing?
    • Posted

      Hi Lis.  The BA Therapis asked my body and the answers she got back from the muscle testing were a) that my body really likes the dietary choices I'm making at the moment b) that I'm being a bit too fixated about the GA, to relax and let it take it's time to heal.  She also in this context talked about the human microbiomes and that my system is strong throughout the different biomes in the body which will support the healing of the skin.  Now this was a bit beyond me so I've been looking on the internet and searched under "microbiome research".  There's a lot of scientific research into this, I can't even attempt to summarise it but when I've got a bit more time will take a closer look - looks like it could be interesting.  Let me know if you get the chance to understand it!
    • Posted

      p.s. Lisa.  Am copying and pasting the bit about the human skin:

      Human skin represents the most extensive organ of the human body, whose functions include protecting the body from pathogens, preventing loss of moisture, and participating in the regulation of body temperature. Considered as an ecosystem, the skin supports a range of microbial communities that live in distinct niches. Hair-covered scalp lies but a few inches from exposed neck, which in turn lies inches away from moist hairy underarms, but these niches are, at a microbial level, as distinct as a temperate forest would be compared with savanna and tropical rain forest. Studies characterizing the microbiota that inhabit these different niches are providing insights into the balance between skin health and disease

    • Posted

      That is really really interesting! Skin as ecosystem...and the notion that your body's other 'microbiomes' will support the healing of the skin. This makes sense to me in a global kind of way; a good reminder that everything is of course interconnected. Thanks for sharing!

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