Lichen Sclerosis/Vitiligo

Hi -
I also have this terrible disease (lichen sclerosis)! I was diagnosed 6 months ago. I have so far refused to take any of the allo meds as I truly believe that it wouldn't be good to just suppress the symptoms. My case was also triggered by menopause, but my menopause was early - at age 46. I have been seeing one of the famous homeopaths for the health needs of my whole family for about the past 8 years, and it has been wonderful. We only had one case of bad poison ivy where we had to resort to prednisone, besides that we have not had ANY allo meds of any sort - antibiotic, aspirin or anything for either myself or my two boys for 8 years. Our constitutional homeopathic remedies have been handled everything with the occasional acute remedy. However, my homeopath has not been very helpful with this terrible disease. I have been trying all sorts of things also and nothing is really working. Although I have eliminated tons of things out of my diet and I do think that this has helped me. I tried beta glucan and it did not work, by the way. I have been self administering various remedies but they are not working (sulphur, carbo veg, pulsatilla, ignatia) in the 6X or 30C potency. I want to try petroleum, also arsencium met. If anyone else has any advice, I would love to hear it. Sorry for this long rambling post.

Hi. Have you tried tea tree oil topically along with the beta glucan? This is what works for me. How many mgs did you take of the Beta glucan? And how many times a day?
Cyndi

Hi Cyndi -
I use 3 mg of Beta Glucan made by Immunition. How do you use your tea tree oil? Do you dilute it. Which brand of Beta glucan do you use and how many milligrams? Were you treating your LS with other stuff (topical steroid) or did you manage to chase it away with just the beta glucan + tea tree combination? Thanks.
Elli

Cyndi:

How do you use the tea tree oil? Do you use if full strength or mix it with something? Mary

I was just diagnosed with Lichen Sclerosis and am being treated with steriod cream (not doing much good). I am confused after reading some of these posts. If LS is an autoimmune disorder, why are folks using beta glucan if that boosts your immune system? I suspect menopause triggered mine also and when my hot flashes are bad, so are my outbreaks. If I manage hot flashes will the LS be minimal? Thanks for any info.

Hello I was diagnosed with LS and I am a little confused about the usage of Beta glucan. To my knowledge isn't LS an autoimmune disorder and beta glucan is supposed to boost the immune system isn't the immune system supposed to be suppressed when you have LS, so how can beta glucan help chase away the LS. Can someone explain this to me and has anyone with LS has actually been taking beta glucan and noticed a dramatic change where they no longer have the symptoms associated with LS. Thanks

About tea tree and immune boosting concerns:

I asked my gynae, Miss Wendy Reid of the Royal Free in London (who specialises in Lichen Sclerosus) about the potential dangers of boosting the immune system as I was taking herbs from an naturopath to do just that. She gave me a detailed explanation of how LS actually works as an autoimmune disorder which I cannot recall, but suffice to say that she was VERY clear that it was FINE to boost the immune system. It would have no negative effect on the LS.

For what it's worth, she had a student who had done research into tea tree oil (4/5 % - NEVER neat - and some people are allergic so patch test first - some burning sensation is normal) and it had proven that it helps skin elasticity, which is a real issue with LS.

I was using House of Mistry tea tree cream (no hidden nasties, parabens etc) and she was very enthusiastic about the change in my vulval skin.

I was also using steroid creams for a while, but when the course ended I just used the tea tree cream.

When I stopped using the tea tree cream she noticed the difference and berated me!

And, I would say that what has helped most with me is working on my mental-emotional state. I recommend the work of Byron Katie for calming your stressful thoughts - visit her site, listen to audio and video clips, and use her hotline volunteers (highly trained and, unbelievably, free!!).

An autoimmune condition 'down there' SURELY must indicate some kind of self-loathing...
So being loving to yourself, your mind, AND your body - realising it's not the enemy - is really helpful.

Stress definitely makes it flare up more. As does sugar in my case, by the way, and I'm not alone in this.

I would also say that although my LS is only very mild now - I came off steroids and tea tree cream at the request of my homeopath - I had a huge flare up when I first came off them. And, they WERE very effective in getting rid of my first bouts of LS.

So don't dismiss them.

You may come across scary cancer of the vulva stories.

Wendy Reid was also very emphatic that this didn't happen to people who were receiving treatment for LS, it was for longterm, undiagnosed, untreated LS where it was a risk.
Some people need to use steroid creams once a week, ongoingly, once the flare-up has resolved, and they manage perfectly well like this.

I would contact a support group and find a gynae and dermatologist who really cares and knows about this condition - that's what I did.

Good luck!

Hi, just to say there is a much longer thread on LS elsewhere on this forum... with women getting good results with Candida diet and/or EFT & and 'Emu Oil Well' emu oil/tea tree.

Greetings,
I was diagnosed with LS 4-5 years ago when I first started menopause. I was given steroidal cream but quickly stopped that after reading about side effects. I take 100mg beta glucan daily, acidophilus (to keep good bacteria present), vitex (excellent for menopausal symptoms) and use tea tree oil diluted in virgin olive oil on my area of LS (genitals). The dilution rate that I use is 2 tablespoons of tea tree to 1/2c olive oil. It does wonders and I rarely have flareups. Sometimes I go a few days without the tea tree and I start to feel itchy and a burning sensation, and then I know it it time to use the tea tree again. When I was first diagnosed my pain was SO bad I was practically bedridden. I never have flareups like that and it is hardly noticeable. Don't get discouraged. It is manageable and it may take a little trial and error but since these natural remedies are not as fast as allopathic drugs, give them several weeks to work before giving up. Best wishes and prayers to all who suffer with this ailment.
Debbie

Hi Debbie,
yes I forgot to say I have also been taking Biostrath tablets (beta glucans 1,3) for about a month, which has coincided with my clit hyper-sensitivity diminishing to the point where it's pleasurable again to touch myself.
I also notice itching if I stop applying the emu oil/tea tree mixture I use. Even with it I notice occasional nighttime itching in my pubes, which I never used to think was LS (my gynae said it wasn't necessary to apply steroid cream to those areas back when I used creams so it didn't occur to me) but which i realise must be affected by it.
I would urge everyone to monitor how things are going with a mirror even when symptoms are abated - I was taken aback to notice a year ago that fusion had started happening around my clit, an my vagina had narrowed. It's important to use dilators, I now gather, and to watch out for clit fusion (which can be reversed in its early stages - I gather homeopathy is good for this BUT tea tree completely undoes it... so maybe best investigate other alternatives!)
Good luck to all,Sarita

I have not been diagnosed yet with LS, but I am afraid that is what I have. A few days ago, I began taking several dietary supplements (OPC Synergy and Isoquercetin) for help with allergies. I noticed burning on urination and was shocked to discover that my labia minora and some surrounding skin have turned white. In my research I found that a possible cause of lichen sclerosus is an overactive immune system, so I am quite certain that this is an adverse effect of the supplements. I discontinued the supplements and have an appt. with my gyn this week. Is it possible that LS will heal if the cause is eliminated, or is it a condition that I will have for life?

Hi,
I was taking echinacea and was concerned about this, but my gynae - who's pretty switched on - gave me an indepth explanation as to why it was absolutely fine to strengthen the immune system in this way - essentially it doesn't strengthen the particular cells that are misguidedly attacking healthy tissue.
IF you have LS it sounds like you're catching it early, which is good news.
And of course you may just be having an allergic reaction to your urine from the supplements, or some other explanation.
Good luck,
Sarita

I to have dealt with the LS for several years. Started about the same time as Menopause. The dr's first gave me a special cream that did really great. Don't remember what the cream was; just know the pharmisist had to 'concoct it'.

I was having a lot of hot flashes and decided to go on the black cohosh. I also picked up something called soy isoflavones. After about six months the hot flashes subsided.

I am finding that when I continue to take both of these (black cohosh and soy isoflavones to subside.

I was wondering if anyone else has tried either of these and found them to help?
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