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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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  • renee77108
    renee77108 paula92906

    Posted

    Vitamin E oil has not worked for me.  I'm in better shape after the past 6 weeks than I have been in years.  I have used witch hazel for several years which keeps me somewhat healed but did not eliminate the itch...or repair my skin. I added 99% pure aloe vera gel to my regimen and my skin looks normal in the private area now. No cure, but as long as I spray with the witch hazel and use a dab of the aloe vera gel I keep the symptoms at bay and am much, much more comfortable on a daily basis. I do the treatment morning and evening and if I feel the itch coming on will add a 3rd or 4th treatment as necessary. This has kept this part of the disease liveable. I also seem to now have it under control on my legs and somewhat in my mouth...oral lichen planus. For dental care I can not use bicarbonate of soda...it makes the condition worse for me.  Instead I use activated charcoal from bamboo to brush my teeth...a bit messy...but totally non-irritating and follow that with a salt water rinse.
    • paula92906
      paula92906 renee77108

      Posted

      Thank you for sharing this. I haven't reported yet on my vitamin e oil because I've only been using it for a week. I am glad to know that there is something else to try if I have to reject vitamin e. 

      I am most interested in hearing about successes like this so that we can all benefit from other people's experiences. 

      Paula

    • renee77108
      renee77108 paula92906

      Posted

      I've added Manuka honey to my regime at night and have had further improvement.  I also started the Paleo auto-immune diet 11 days ago. I had a couple of false starts as I made a couple of errors, but I've seen further improvement since starting it...so am hopeful that it may be the final answer.
    • lizziewizzie
      lizziewizzie renee77108

      Posted

      cuedos....good for you...thats a tough one...but its effective i've heard...i'm working my way towards it. would love for you to keep us informed of your progress. i have yet to eliminate nuts but am off eggs plus  gluten grains and milk....but some dairy creeps in. so to address this i'm doing a green cleanse to purify xxxxx
    • renee77108
      renee77108 lizziewizzie

      Posted

      Yes, I've made the occassional boo-boo....such as peas...not realizing they are considered a legume...but sugar snap peas I understand are permitted as they are mostly pod. It' also been very hard to give up my yogurt, but understand fermented dairy is allowed later on as long as you tolerate it well.  I have to admit that I do feel better overall...and have more energy. It's been two weeks...and I'm going six more on the auto-immune Paleo...then will start adding the other permitted foods. They suggest one every 5 days and to keep a diary on any reactions...if  you don't tolerate it...have symptoms, then you know that you can no longer eat that food.
    • lizziewizzie
      lizziewizzie renee77108

      Posted

      oh have you tried coconut yoghurt? ferment some coconut milk over a night or two...yum!

      i gather the legume avoidance is due to lectins which protect the plant ...but they do seem to invite being eaten ...and as a way of being spread by animals...or us....surely effective from a biological perspective. however i suppose they could induce diaorhea so they get through the system quickly ....and/or maybe they're not fully digestible so the seed gets through and out inorder to germinate...so the not being very digestible and possibly conducive to wind are reasons paleo omits??  i seem to be omitting things one by one ....must get organised to do it the right way round! following and wishing you luck x

    • renee77108
      renee77108 lizziewizzie

      Posted

      Funny that you should mention coconut yogurt.  About a week ago I saw a recipe for that and thought I would give it try.  Thanks for the reminder.  I have some coconut milk on hand and a yogurt maker...so will give it a try tomorrow.
    • lizziewizzie
      lizziewizzie renee77108

      Posted

      yay! great...enjoy. i want to come round and share it with you x

      i've been using coconut milk to down my new mega strength probiotic VSL . it has 450 million good bacteria............!!

  • paula92906
    paula92906

    Posted

    Hi,

    I created a short survey using survey monkey. My goal in writing this survey is to find out  what is and isn't working in a general way. If lots of people participate in this survey and some trends are noticed, more targeted surveys can be created. I also included some questions that other people might be interested in. For example, if someone wrote a book about this, would you be interested in participating? That way if there is enough interest, someone can pursue this in more depth if they want to. I included a similar question about creating an on-line support group because it seemed like some people might find this helpful. 

    I didn't ask for any help because my time is limited and I thought it would be faster to do it this way. I'm sure more input would have created a more in depth survey but it would have taken longer to create. This way a survey is created and future surveys can be created as well. 

    I was thinking that I would leave the survey up for about a month as I am being charged by the month. Also, I am going on vacation so can't think about this much more until I come back. 

    I hope as many of you as possible will fill in the survey and I hope you will encourage other people to fill in the survey too. 

    I also want to add that the survey is anonymous.

    Now I will write to Emis the moderator so he can put up the survey. 

    Thanks,

    Paula

    • lizziewizzie
      lizziewizzie paula92906

      Posted

      I gather the survey is over now.....any news?

      Thank you for organising this x

    • anna64678
      anna64678 paula92906

      Posted

      Hi, Just want to let you know my experience. I was diagnosed initially with oral lichen planus in 2010, which soon became systemic-  lower legs, deformed nails, scalp lesions plus extensive mouth involvement. I was told it was incurable & I'd have it for life. I never had LS, but is it really a different condition or just a different site on the body? I've been TOTALLY free of LP for almost 3 years now. First, I had blood tests done by BioLab in London (& sent to Acumen), plus blood sent to Germany (MELISA) for metal allergy analysis. There were strong suggestions of both metal allergy & toxicity. On consultant's advice, I began a supplementation regime, & after a LOT of research had all dental metals removed & replaced with ceramics. My LP had begun immediately following careless dental treatment & a lot of mercury vapour exposure, so it seemed to make sense. Anyway, it worked! My general belief is that those of us with auto-immune conditions need to look at possible hidden infection and environmental factors. I don't believe the body 'attacks itself' as medicine has told us for a long time- but it may try to fight invasive infections and/ or toxins that it can't get rid of without help, and the results may be 'auto-immunity'- from MS to lichen planus/sclerosis. For me, there may also have been 'occult' infection issues- i.e. intra-cellular bacteria, as I still have other peculiar health problems I'm fighting against, all of which have possible 'auto-immune' aspects. I'm currently looking at having to do some kind of extended antibiotic protocol. Immuno-suppression isn't the answer I strongly believe. Good luck & best wishes, everyone, & keep fighting.
    • lizziewizzie
      lizziewizzie anna64678

      Posted

      This is a great post Anna. Thank you. I admire your persistence. It sounds similiar to the approach I'm trying to take to adress thyroiditis. Agreed autoimmunity is possibly a false tag and that in fact the immune system needs more help not less. Its taken me a while to come to this juncture. How are you now? Would you keep in touch with your strategies and recommendations...I'd love to hear more and to compare notes. Are you seeing a naturopath or a nutritionist?
  • Bridge_of_Sighs
    Bridge_of_Sighs paula92906

    Posted

    I wanted to add to this discussion because there was a thread earlier about symptoms easing when on holiday and looking for reasons. I'd been suffereing from mouth ulcers for several months and was wondering about oral Lichen Planus but too scared to find out, then i went on holiday too and they all cleared up. I thought maybe it's stress (it was the most relaxing holiday ever), but then they came back and I wasn't particularly stressed. After reading Anita's post I thought about the water and bought a filter jug. It got a bit better but not totally cleared up. Then I realised that I'd used a different toothpaste while I was away, a mini sample that I'd picked up at the dentist, perfect for travelling. I've got horribly sensitive teeth and have used the same brand for most of my life, this one is also a sensitive teeth one, and it's also full of chemicals, but no more mouth ulcers. Hooray!

    I wish I could solve that problem and go chemical free, but the pain is too much to bear.

    Other changes - we've switched to an organic veggie box, trying to reduce our chemical load, so that things like toothpaste have less of an impact. I've given up coffee (so sad, I love coffee) and am virtually alcohol free now. Sugar is severely limited too. We had a very tight period when anything organic was out of the question, but things feel a bit better now and (together with the holiday) that's the first stretch we've been able to make.

    The bicarb rinse and coconut after a toilet visit are suiting me well. I feel stable even though I'd like to see change happening, at least it doesn't seem to get worse. I use Clob twice a week as maintenance.

    I went to a kinesiologist for allergy testing and the only strong negative was coffee. Gluten and dairy had small wobbles but she said I was managing them fine. I have a bee-in-my-bonnet about bread. I think that the bread we buy is so highly processed that we don't really know what goes into it. Some of the supermarket loaves have a paragraph of ingredients. It should be flour, water, salt and yeast - no more. I buy a sack of organic flour every few months and make my own, I've been doing it for the last 10 years and have got it so that it just fits into the rhythm of life and isn't time consuming at all now. I also really limit processed food for the same reasons. We just don't know what's in it. I have two children and apart from this wretched LS, none of us are ever sick. Maybe we're just lucky, we'll never know will we? (I hope I haven't jinxed us now by saying this!) A big question mark hangs over all processed food for me. It can't be good when profit is the most important motive.

    My LS started when I started menopause (at 46) and was very, very stressed at the same time (redundancies, bullying at school, vile neighbours etc plus I was hormonal, meaning that I didn't deal with it well). That coupled with useless doctors meant that I suffered for about 3 years before I found a new doctor who diagnosed me immediately.

    That's about all I've got to add, no just remembered I tried Nelson's calendula cream - Ouch. Don't! immediate burning and soreness, Weleda calendula nappy care cream was nice to use though.

     

    • lizziewizzie
      lizziewizzie Bridge_of_Sighs

      Posted

      what an uplifting post. thank you so much!

      maybe add an all house water fliter?  So much unpurified water gets through our skin via the shower. I have one on order!

    • hanny32508
      hanny32508 Bridge_of_Sighs

      Posted

      Glad that you have things under control now.  Weleda calendula nappy care cream is nice for variation, I find.  A new 'kid' on the block is my dead sea and epsom salt bath.  Every little bit helps.  
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