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Lets Create A Database and Find Our Own Cure

Posted , 21 users are following.

paula92906
paula92906

I am frustrated. I don't feel doctors or pharrmaceutical companies are doing enough. It occurs to me that if we create a database of our experiences we can help eachother and possibly find a cure together. I am sick of putting strong pharmaceuticals on my body. Maybe there is something else. It's possible that there isn't but have we really compiled all the date from all the people to see what is working. 

Right now I am trying pure vitamin E oil on my labia. If it doesn't work, I can share that. If a few other people try it and it doesn't work, we can discard it as an option. We can track clobetasol, protopic and every other idea in the same way. Let's see if anything is actually working. 

If vitamin E doesn't work and I realize it probably won't, my next idea is pure aloe right from the plant. Unless we work together to systematically rule out options, I believe we'll never move beyond heavy duty pharmaceuticals. 

Is anyone interested in this idea? 

Paula

5 likes, 91 replies

91 Replies

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  • phil21170
    phil21170 paula92906

    Posted

    Hi Paula I was diagnosed last year. The medical Herbalist I am seeing at the moment does not think that chemicals should be used to treat the condition as it is chemicals, ie in our environment, in our food etc that has caused the autoimmune condition. She has advised Vit C, probiotics, Fish Oil capsules , And Zinc. I also use coconut oil and 99.9 per cent Aloe Vera.I still use the hydrocortisone from time to time though. In respect of my medical history, when I was 23 I am 54 now. I had and abnormal smear and had to have a Surgery. I also have food intolerance's, Dairy, gluten. At the moment I am not eating sugar and this seems to be helping. I hope this info helps.
  • groky
    groky paula92906

    Posted

    I like your idea. I also was thinking of trying vitamin E oil as well. Let me/us know how it works for you.
  • justine89448
    justine89448 paula92906

    Posted

    Hi I'm 45 and have been diagnosed for a year. I'm perimenapausal and on the pill. I think I had some flare ups when I was young on holiday caused by sweat but I treated for thrush. When I was 38 I moved from the uk to Australia I became very ill with bowel problems I visted a natapath and improved my Heath with probiotics etc at the same time I had some flare ups but I thought it was the sanitary towles and heat again I treated for thrush. My toe nails started to fall off I thought it was fungal. In 2012 I moved to Dubai and started running my toenails got worse and my LS was persistent I also started with the insane itching and cuts my husband travels a lot so you know what I thought I decided to see a gynie she thought it was low estrogen so gave me estrogen cream that worked for a while then bang another flare up so I went back and had a biopsy and discovered LS I was put on clob it helps but I still get lots of flare ups. My LS is connected to my Bowles if I drink alcohol it will flare same with dairy. I use hydromol as a moisturiser if I get lazy with application it's back. I don't feel ontop of things and an considering trying protopic cream instead.
  • athena93317
    athena93317 paula92906

    Posted

    Sense I have done my round if clobetisal it us almost gone and now I use 40 percent zinc diaper rash cream if I get itchy at all or every few days I have also switched my diet I try to avoid gluten all together I take wheat grass everyday and children's pro biotic with coconut oil, biotin, and an immune vitamin
    • athena93317
      athena93317

      Posted

      Sorry didn't put my back story I am,28 I was diagnosed August 2014 not to long ago I found a bump on my clitorus witch was cut off it was horrible that's how I was diagnosed I was prescribed clobetisal ointment it took a lot of homework to apply it right I found Dr Goldstein video it was a life saver I also heard that new findings suggest it is an auto immune disease so I tried approaching it as such I looked up info in natural things to help witch got be started on wheat grass and vitamins that's when I saw a major improvement I also noticed my energy go up I have been struggling with that for a long time I will not go a day without my wheat grass I notice a difference but now it is just keeping under control because it is gone itchy on occasion
    • lizziewizzie
      lizziewizzie athena93317

      Posted

      hi athena

      i'm experimenting with quitting foods that can cause reactions (prob because of their chemical load), but assume that for the initial elimination period (before potential allergenic foods can be re-introduced) all gluten and grains are best avoided.

      was therefore just wondering about your choice to consume wheatgrass? would that not be best avoided ? How long have you been gluten-free? good luck with it.....!! how are you getting on. I'm doing ok so far. looking at food grade multi vits. what are yours like?

    • athena93317
      athena93317 lizziewizzie

      Posted

      I was looking into natural things to help auto immune dieses and came upon the wheatgrass despite its name it has no gluten in it and it has great vitamins in it for the skin and it puts more oxygen in your blood witch helps you heal faster and it helps me breath better I always had a problem getting enough oxygen if I walked far or up the stairs I would start breathing really heavy when everyone ells was find the doctors said I was fine no asthma it anything but couldn't explain it I don't think they believed me to be honest but I have no problem when taking the wheatgrass and I take airborne immune support to help my immune system as well and Schiff pro biotic for kids the gummies lol I found that if I took higher dose of pro biotic it actually made me bloated then I take the biotin, coconut oil, evening primrose oil for the skin and calcium+ vitamin D
    • jackie73005
      jackie73005 athena93317

      Posted

      how do you take your wheatgrass Athena, in a supplement or a powder.  Do you take coconut in a supplement i could not drink it i am afraid i find it disgusting.
    • lizziewizzie
      lizziewizzie athena93317

      Posted

      Thanks athena, really helpful. So glad to hear the wheatgrass is helping to oxygenate your blood without adverse proteins getting in. gummies sound like a good idea...i am not good at taking stuff. very very helpful and thanks for taking the time and the trouble to pass on these tips. Much appreciated!
    • athena93317
      athena93317 jackie73005

      Posted

      I take pills for both I have coconut oil though I use down there on occasion now I use it for everything my face and hair and I swish with it because it helps your teeth very gross though lol
    • hanny32508
      hanny32508 jackie73005

      Posted

      I don't think coconut oil is good for drinking.  I apply after baking soda rinse after every bathroom visit.  And I rinse my mouth for a good number of minutes (for LP) and spit out in compost bin.  Also use it for dry lips and as a suncreen.  
    • lizziewizzie
      lizziewizzie hanny32508

      Posted

      my understanding is that coconut oil is helpful added to smoothies to increase the 'good fat' content...especially green smoothies....i need to get round to trying such a smoothie...but am still a bit ambivalent about the goitrogenic effects of some greens...which really disappointed me as i was very 'into' raw broccoli....however i'm now hearing that we're back to cruciferous veg being not only ok but positively 'good' ....so it seems the health fashion wheel has turned back around on that one....and i'm so relieved!!
    • lizziewizzie
      lizziewizzie hanny32508

      Posted

      why do you think its best not to drink coconut oil ?

      just wondering if it might it as when doing 'oil pulling' we would swallow the toxins that are drawn out in the mornings into the oil we're swilling? And for that reason its best spat out (into the trash or recycling as you so aptly explained!!)??

      Am just asking as I can see that...but I did think its a good ingredient in smoothies...however you might have some new info so i'd be pleased to know the latest. So grateful for all the tips and revisions!!

    • lizziewizzie
      lizziewizzie

      Posted

      on no moderation...was just asking you for any further info!
    • renee77108
      renee77108 lizziewizzie

      Posted

      Coconut oil for food consumption is safe. I cook and bake with it all the time and have done so for years. If you can handle it raw...a tablespoon a day is said to have good health benefits.  I've had peanut butter mixed with coconut oil and it's not bad...although I prefer the more peanut flavor.
    • hanny32508
      hanny32508 lizziewizzie

      Posted

      With oil pulling I think it should not be swallowed.  Furthermore - I add some coconut oil in my breakfast millet or other.  I think that amount will be sufficient for the day.  It's still fat you're eating, cautious with the amount.  
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