Lichen Sclerosus nearly cured

Women's health
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I had a biopsy and it was confirmed I had LS.  I was put on steroid cream and told I would have to be on it for the rest of my life as there was no cure.  Well I knew that wasn't going to be my way of dealing with it.

I did try the cream and it instantly irritated my skin and it went bright red and hurt.  I stopped it within 2 days.

I went to a naturopath.  She put me on 4000 mg of Vitamin D daily and a very expensive and potent type of Acidophilus.  She put me on a STRICT diet which eliminated the foods I knew I was intolerant of.  In my case milk and gluten.  I was not permitted any milk in anything.  No milk or butter added to the bread I ate for example.  Absolutely no gluten or milk at all for a week.  

The LS is retreating and very faint after just 8 days!

The naturopath said that although they don't know what causes the autoimmune reaction to start, they do know that food allergies and a vitamin D deficiency exacerbates the problem.  

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Hi, sorry are you female? Thanks for your feedback. Im 38 male and I should get my biopsy results this week.

Thanks

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Yes, I am female.  I'm not sure that gender matters when using natural options to cure health issues.  I just felt that I got my body into this state.  I wasn't born with it, so there should be a way to get my body back into a healthy state.  I was not going to believe that I was doomed to have an autoimmune problem forever.  I look so much better after a week of being off the foods that I react to and using the Acidophilus.  No more dark circles under my eyes.  

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Thanks a lot. Well yes I don't know. Also dont know if on female the disease is different. Actually there is no much resources to look at it in case of male. But is good to know that diet also helps. How do you know foods that you react? Because I eat everything. What is Acidophilus?

Appreciate it

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Well bless you and your positive attitude. And good luck with it, sure hope you can have  many years of respite from the disease.

Topical steroid, well we all hated that! In my case it burned more than my LP and many strengths were tried and discarded before hitting on the right one. Many here believe we need the steroids and I certainly so too.

As for foods, I have cut out gluten, dairy too, plus the nightshades (potatoes, tomatoes peppers, eggplants, peanuts) alcohol, preservatives caffeine and most importantly, sugar , processed and many natural and I've done that for the last seven months.

Im healthier and I lost 22 kgs but sadly the condition kept right on driving me round the bend. The no sugar did help with the burn, I always knew when I had been bad, thrush usually arrived too, just to top it off.

Many fruits have a lot of sugar so I eat the ones that don't. Sugar is also present in vegetables. I never eat spices or packet food.

i too go to a naturopath, I take 50,000 U Vitamen D a month, also a mega probiotic ultra flora LGG to keep thrush at bay, and monthly Fluconazole from the doctor for same thing.

my first bout has lasted 7 months and changed from LS by biopsy to definite LP by a vulval dermatologist and it just now abating enough to function. It's been hell and I am having some respite at last by stopping everything BUT the steroid being applied to the lesions and excoriations.

everything in my environment has been changed to organic and containing no parabens, from soaps shampoos to washing powder to dishwasher.

Yes, some of us us have tried everything and still we struggle and experiment. If you need help if /when yours flares again, there are many wise and wonderful women to give you any advice and suggestions right here! Not many though, will encourage a total stop of Steroid cream. It's actually our friend in most cases!

Very good luck and stay well.

 

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Thank you so much for that valuable input. I have been vitamin D deficient in the past, so I will try increasing. Can you share what more information about the brand of acidophilus or where to get it?any particular vitamin D? So glad you found a "different"path. I have never tried the steroid cream for the reasons you stated.

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Hi Lynne, is that one Anglican a month, 100 or 200 mg?

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Diflucan, Sorry!

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The naturopath said all vitamin D works the same so just to buy the cheapest brand of liquid.  I am in Canada.  I went to Shopper's Drug Mart and got a small bottle for just over $5.  I am on HMF Powder priobiotic formula 60g in a plastic container.  I take 2 g per day.  It cost me $40 at the Naturopath.  She said not all acidophilus is the same.  I've been on acidophilus for 2 years now.  She said some is so poor that it would have no effect at all.  This brand is live and has to be in the fridge of course.  She said it was very reliable in delivering the bacteria. 

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Hi Lynn

Sorry to hear you have LP, I too have it and I do know stress plays a big part, how long have you had it Lynn and how old are you... I'm 57 and was first diagnosed about 14 years ago when I didn't even know I had it, was my dentist who found it and around that time also had an abnormal smear test and had colposcopy, then about 3 years ago started with itching burning mouth can't eat certain foods it's just so annoying, have you had any problems with cervical smears.... This site is really good and hopefully give each other some tips

Take care X

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How about vit d capsules are they ok?

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Hi and welcome to the group.

It is good to hear that you are having some success with eliminating foods, which is why I think visiting a naturopath can be beneficial for some women. I wondered, what were your symptoms when you first saw your specialist, (I'm guessing the white plaques of skin) When you say the LS is retreating, are you referring to the white plaques of skin?  or some other symptom of LS.

My experience with LS is that diet can often play a huge role for some women with LS, and it sounds like you may be one of them.   

I'm also on a very strict eating plan too.

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I cannot comment on the vitamin pills.  The naturopath told me to use liquid when I said I did not like taking pills.  I didn't ask if there was a difference. 

My symptoms were white skin that was spreading and changing the thickness of my skin.  Uncomfortable soreness, although not very noticeable.  The white skin is now retreating.  The white that is left is very faint.  The skin is no longer raw to the touch and it feels like the right consistancy?  What word do I mean?  The thickness seems right again. 

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It's 150mg a month or sometimes twice Cynthia

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LS is such a challenging and tricky condition, with many doctors being clueless, and so we tend to share information from each other on this site.  

Here is what I currently believe with regard to LS...That with implementing a careful diet, symptoms like itching, sores, cuts etc can often remain dormant.  Currently, I have always believed that the white plaques of skin only disappear through use of the steroid cream, this is what I have personally found, but I could be wrong, and so I will be very interested to hear how you get on.

You may find due to your diet that the symptoms I have mentioned above give you no problems at all, but you may still find that you have to use the cream if the white plaques of skin dont disappear completely.  Just so you are aware I used the steriod cream for my white plaques (this was a couple of years ago) and they went really quickly, I think it took me around ten days, and so it does not mean that you will have to use the cream forever if  they do not fade from the diet you are on.

In any case it sounds like you are determined, and that's a good thing, so do keep us posted! 

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To my knowledge here in NZ the vitamin D which is bought across the counter at Pharmacies is of such a tiny dose that people get more vit d from 10 mins in the sun. Most people get enough day to day and from some common foods too. But it doesn't stay in the body so each day we get another supply.  Some people need big boosts to supplement their naturally acquired vit d and only doctors here can prescribe it. I have 50,000 units. every month, it is a lot. Mine is to prevent osteoporosis as another drug is undermining the manufacture of my own body's ability. You can have two much vitamin D, I hope you are aware of the side effects etc. You are getting 120,000 a month at my calculations. Have you passed it by your doctor. Just a thought. Cheers

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Just a little more info for those reading Lynn's very correct post. The RDA is only 600 iu. Massive overdose can cause calcium build up in blood which can cause many side effects : poor appetite, nausea, vomiting, weakness, frequent urination and kidney problems may occur. Large doses should only be taken under doctors supervision when they can monitor your blood levels of calcium. Also vit d is dangerous when you also take thiazide type diuretics. The point is be careful. Vitamin d is necessary but often is included in your diet like in cereals. A balanced diet is really all we need for our health.

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Hi Chrisy

How are you I havnt been on for a bit before tonight.... Been at the dentist today started my treatment for a bridge, and some other stuff, be glad when it's finished with, not to keen on the dentist!!!!

I take a multi vitamin which I think is 500 grams with zinc in it was my dentist that suggested this a couple if years ago, not sure really whether I still need to take this, do you take anything Chrisy to help with your skin... Sorry Chrisy how old are you, I'm sure you've told me before I'm 57

Take care Karen X

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These are excellent replies, but I do challenge the belief that the body's vitamin D needs can always be met through proper diet.  In Canada we have many more hours of darkness.  We have been trained to wear sunglasses to avoid damaging our eyes and so we often are deficient. My diet is quite good.  I even get out in the sun a lot and I still have vitamin D deficiency symptoms.  Not all bodies are the same.  Lots of people out there don't have LS and yet they get less vitamin D than I do.  As pointed out here in this discussion, there is a fine balance between too much and too little vitamin D.  I get stones when I don't have enough.  Others get them when they have too much.  I think it is valid to explore taking extra vitamin D as an option when dealing with LS. 

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My nature path also advised me to take vit D, however, no more than 1000 mg per day.  We have a lot of sun here.  Perhaps that's why.  Or is there something else I don't know?

Already was on gluten and almost milk free diet.  So close.  LS has been calm for a fairly long time now.  Fusing almost gone.  

Will look into acidophilis.  

Thanks.