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Have had horrible lichen planus for 2 years

Posted By Patricia (Milton, Kentucky) on 11/27/2012

I have had this horrible disease in my mouth for almost 2 years. Unfortunately my Primary Doctor was passing it off as a problem with diabetes. He was giving me Nistatin rinses, then that magic potion, YUCK, .... Then I was sent to an ENT. He tried lozenges, and Oravig.... Nothing worked. So, My primary FINALLY got a look at my mouth when it was flared up. YIPPEE!!!!!!! Off to an oral surgeon.... After 2 biopsies, I got the diagnosis. NO CURE PEOPLE....... Now I see a Pathologist this Thursday. I do find some relief avoiding acidy foods, soda pop, and brush my teeth with only baking soda. All my medications except my thyroid and insulin were put on hold. I NEVER GET OVER ONE WEEK WITHOUT GETTING A FLARE UP!!! I JUST PRAY THAT IT HASN'T GOTTEN TO THE WORST CONDITIONS. I just recently asked my primary doc, of 15 years, to check me for Hep. C and Luekemia..... No go... Well, I'm gonna ask the Pathologist for those tests.... I have hurt in my liver area for quite sometime. PRAYING FOR RELIEF.... AND FOR ALL THOSE 2% OF PEOPLE OUT THERE WITH THE SAME DISEASE.............:)

Replied by Rsw (Uniontown, Oh) on 11/27/2012

Hi Patricia, I have been diagnosed with LP for almost ten years after a biopsy of my mouth. If it is in your mouth, it is systemic (as in nails, skin and/or mucous membranes). I hope you have seen Daisy's posts on Lichen Sclerosus, a close relative of LP. She has cured herself with nonalcoholic essiac tea tonic so the possibility of resolution is out there. I will receive essiac tea herbs on Friday and hope it will be effective. I have been on LDN (low dose naltrexone) for a year and a half with no improvement, which makes me question if this is an autoimmune problem. (I have seen too many use LDN with success to doubt it's effectiveness on many autoimmune diseases) Also, the low Oxalate diet has helped others, along with NAG and other supplements.

I believe Lisa's suggestion of taking water kefir several times a day is beneficial to balance the good yeast and bacteria in the body. Articles link LP with Hep C (60%), statin drugs(and other heart and BP drugs), dental work, stress, candida, and previous injuries, but it is not even marginally understood. Sharing what does or does not help gets us closer to some resolution without wasting so many resources. Best wishes!

Replied by Vooloovoo (Naugatuck, Ct) on 12/05/2012

Are you sure it isn't candida?

Replied by Syed (California, US) on 07/12/2014

I suffered with Oral Lichen Planus for 1.5 years (2012/2013) and tried Aloe vera mouth wash, toothpaste, Dexamthasone mouth wash, Cyclosporin mouth wash, baking soda and etc etc. Nothing helped until my dermatologist, Dr. Phaneuf (Kaiser Permanente) put me on Hydroxychloroquine 200mg (twice a day) and Clobetasol oral base that I rubbed on my inflammed gums twice a day. Within one week the inflammation went down and reduced my Hydroxychloroquine 200mg to once a day. Now after a year I have no inflammed gums and I use the Clobetasol every other night.

I am writing this in the hope my experience will help someone else with this horrible disease. I don't know if this will work for everyone but after suffering for so long I felt compelled to share my experience.

Replied by Claudia F. (Porto Alegre, Rs, Brasil) on 12/26/2015

Hi, Patricia!

I have been diagnosed with LP about three years ago and I agree with you, it's really a terrible disease and I suffered a lot. I started my treatment using Dexamethasona mouth wash with few relief and this medicine suits to candida growing, what is worse than the disease itself...

Well, I started to study and discovered a group of doctors that treat ME with high doses of vit D and started to use it (not as high as the ME pacients use ): I started with 10.000 U/day for 6 months and than I noticed improve in my mouth. Today I use 5000 U/day and my disease is "stable"-much bether than it was before the vit D. When I'm stressed or work too much , I have some lesions, but much less than before. Than I use toothpaste for children, soft brush, mouth wash with "Malva" (in Brasil we have "Malvatricin")and at bed time , Triamcinolona at the ulcer. It's very important to keep your mouth and teeth extremely clean- you must be obsessive with this point. Electric brush helps to clean the low part of the teeth. It's important to sleep well at night too. Try to do things make you happy!

Vit. D saved me!

I wish you get better! Don't lose your hope!

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