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Hi about to try a little experiment on lichen planus and lichen sclorosis

Posted , 19 users are following.

sky23
sky23

I have lichen sclorosis and lichen planus of the vulva. I have had this for about 14 years. Dermovate is not the best control medication although it is just about all there is. My symptoms are at present full blown. My dermatologist is thinking oral steroids..I am not thinking that way at all. I have had a look at the 48 hour fast idea which is thought to reset the immune system. You have to do this one twice a year. I am going to give this a shot in September so anyone who wants to join me on this give me a shout cause I could do with the support. Also there is a new study on tumeric and oral lichen planus(mucus membranes) Apparently in clinical trials the oral lichen planus cleared in 6 weeks using a topical turmeric ointment which was specially prepared.However the intment did make the patients very sore during the 6 week process.  If the fasting does not work then I guess it is to the kitchen for me with a lot of tumeric root. You can find all of this on this net just put in 48 hour fast resets the immune system or tumeric heals oral lichen planus. We can but try, hope, and try again..maybe this can work.

4 likes, 256 replies

256 Replies

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  • margaret289
    margaret289 sky23

    Posted

    Hi Sky,

    I'll certainly keep you company on the fasting thing.  I assume it is full fasting with only water to drink.  Private message me with the details if you decide to do it.

    regards

    Margaret

    • sky23
      sky23 margaret289

      Posted

      Hi Margaret. The triels can be found on NHS clinical trials lichen planus. There is one new oral and one new topical. Been knocked back for the topical as have 2 conditions not one. Thankyou so much for joining me on the fasting..wonderful. Also Daily Express ran something today on Naltrexone a wonder drug for MS and other auto-immune disorders..if lichen is an automimmune disorder that is. The drug is not pasted by medical authorities yet and is presently used for alcoholism or something like that..am looking into it and will talk to my doctor. I will PM you

       

    • marey
      marey margaret289

      Posted

      you still going to join the fast? i will be supporting you and sky i'd like you to know and will also be trying my own thing which i hope you will follow x
  • marey
    marey sky23

    Posted

    I recently heard about low dose naltrexone that you mention with respect to supporting the thyroid and mediating improvement to the autoimmune aspect of hashimotos.

    Good Luck with the fast the two of you! Thats great. I used to fast periodically and found it helpful. 

    At the moment I'm trying to get myself to take supplements and to enrich my nutrition and intend to follow the regime promoted by sky willow so I'll be along parallel with you!

    Best Wishes

  • marey
    marey sky23

    Posted

    how are the two of you getting on? made a start with the fast yet?

    do keep us informed ....so we can be part of your support group!

    • sky23
      sky23 marey

      Posted

      Not quite ready to start fast..have to time it as I work. Been turned down for 2nd med trial as have 2 lichens. Any idea how to pm on this thing as I have been looking for it. Seeing specialist on Wednesday due to severity of outbreak. Using honey..sticky thing that..checking out tincture of burdock and tincture of tumeric also colundra. Will possibly have info on new oral meds next week which are unlikely to apply to me  having 2 lichens..but you never know. Spoke with doctor on potential of the other drug I mentioned..he seemed very shocked..and no I cannot have it on prescription..darn
    • Morrell1951
      Morrell1951 sky23

      Posted

      I looked Naltrexone up. Not surprised your Dr. was shocked. He probably knows it as a withdrawal-from-opioid-addiction aid and hasn't heard of the low dose business: "FDA-approved naltrexone, in a low dose, can normalize the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders".

      I agree it's probably a bit extreme to try on LS, since there are liver effects. If I had MS, though, I might try anything...

    • marey
      marey sky23

      Posted

      sorry to hear you're having a severe outbreak. might a cooling plain yoghurt help? or calendula? olive oil can also be soothing and it solidifies in the fridge. you click on the small envelope beneath the name of the person you wish to PM. x
    • margaret289
      margaret289 sky23

      Posted

      Hi Sky, if the pm thing was because I requested it - don't worry, just talk on here.  I thought there would be the facility to pm but maybe not. It doesn't really matter.  I am still battling with the lack of a proper diagnosis and although I saw the Dr this morning, I am no further forward, but at least they are pursuing accurate information now.  I forgot to ask her opinion on the fasting idea, but in any case, if I have no proper diagnosis how can they treat underlying causes of unidentifiable disease. Therefore, as long as a medic doesn't say I am being completely stupid and acting dangerously, I will be joining you on your two day thing in September ;-)
    • sky23
      sky23 margaret289

      Posted

      Hi Margeret. Lets fast in September then. I checked with my doctor and she does not think any harmful results can come of it..Don't forget you can ask for a second opinion or seek a consultation with another hospital. My guess is the only firm way to establish a vulval skin disorder is a biopsy..have you had one? I am still trying to figure out what was once known as a rare disease is increasingly attracting the word common..just how many of us are suffering?
    • margaret289
      margaret289 sky23

      Posted

      My GP said it was very common, whilst the woman who took my first biopsy (also negative), five years ago, said that she only biopsied one about every three months (that was the dermatology dep).  The Gyni seemed to have seen more of it. However, my belief is that my original GP (sadly retired) was an expert on the condition and therefore everybody was directed to see her who showed signs.
    • margaret289
      margaret289 sky23

      Posted

      I think my original GP was good at treating it and brought it under contrlo, so they had a false negative from the biopsy. Nobody doubts that there is a problem which is controled by Dermovate and that it looks very like LS.

       

    • sky23
      sky23 margaret289

      Posted

      Hi Margaret. That happened to me too. The 1st vulval dermatologist (female) seemed an expert who suddenly disappeared. She practiced in Sheffield. I cannot remember her name. This was 14 years ago though.I will see my other dermatotologist on wednesday. I am gathering a few questions together although as it is an emergency appointment and the list is oversubscribed for that day(busy then) I may not be given much time to ask them. Been looking at burdock tincture which some are praising..Also came across a medical herbalist who has given me her number whose clinic is near the Hallamshire Hospital, as I might want to investigate whether there are any answers there. It costs though.
  • ruth01267
    ruth01267 sky23

    Posted

    I had LS 7 years aog.  I visited my doctor with little hope, because I had read much about the condition on the internet, nearly all of which was discouraging.  I described the symptoms - appearance and soreness - and he knew immediately that it was LS.  He prescribed  Betaderm ointment (Betamethasone Valerate 0.1%) to be applied twice a day to the affected parts.  It seemed to work almost immediately and after a couple of weeks was so improved that he suggested I use the ointment "as needed".  I didn't feel that I really needed it much, but I continued applying it once a day for a while, then every other day for a couple of years - wasn't going to take any chances!  I was really surprised that it cleared up so quickly.  (I should mention that I live in Canada.)

     

    • Wil816
      Wil816 ruth01267

      Posted

      Ruth, great hearing good news about LS treatment. It makes me feel more hopeful. My Gyn doctor has a positive attitude. My dermatologist was not so reassuring  she just answered my questions. However, she referred me to the Director of the vulva clinic  so I guess that was positive. I have lots of questions to ask about treatment, maintenance and alternative treatments. 
    • sky23
      sky23 ruth01267

      Posted

      I shall be looking this one up later this evening..let us hope something can help this thing. Lucky you..Canada..big and pretty..Thanks for your input..will let you know.

       

    • sky23
      sky23 Wil816

      Posted

      My second vulval dermatologist is very clinically business like too..I think you have to be positive in finding ways to control this one. Ask as many questions as you can. Best of luck with the appointment
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