Lichen Sclerosus cured - but it took work.

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I started having symptoms of LS when I was 23 years old (from what I can remember). It got progressively worse until I was finally diagnosed at 26. I did a ton of research and started seeing two alternative doctors about it. The symptoms gradually disappeared, and I have been symptom free for about 6 months. Based on all my research, it seems like the underlying cause varies from person to person, but I will briefly summarize what I believe were contributing factors in my case.

1.) Uncomfortable sex and/or sexual abuse. There is evidence that sexual abuse can cause LS, although I'm not sure if it causes or exacerbates the problem. Either way, my symptoms got a lot worse when I was in a relationship with a man who I was not very attracted to. My only advice (really, whether you have LS or not) is to not have sex if you have symptoms, or if you simply do not want to. The friction physically damages the skin.

2.) Underlying inflammation, which can be caused by the following factors:

a) infection. I had a bad one for a long time. At this point the LS symptoms were quite bad - lots of itching and pain, and shiny white patches. After getting a million tests done, I finally gave up on western doctors, went to see an alternative guy, and he gave me an anti-bacterial, anti-fungal, and anti-viral herb (it was a strong herb). The symptoms started to clear up immediately, and I mean by the next day. I suspect it was a fungal infection because symptoms worsened several months earlier when I was on a round of antibiotics (antibiotics alone will kill the bacteria that keeps fungus and yeast at bay, permitting fungal overgrowth). Anyways, that helped, but the symptoms were still not completely gone. There were other contributing factors...

b) Allergies. I got my alternative guy to test literally everything I ate on a regular basis, and it turned out I was sensitive or allergic to many foods. Dairy was the big one, and when I cut it out, I noticed the symptoms mostly disappeared. At that point, I was sometimes asymptomatic but sometimes it still flared up a bit, which still drove me crazy, so I pressed on.

c) Deficiencies. I had major deficiencies in iodine (this one was important.. I'll discuss it in my next point), vitamin E, zinc, vitamin B12, and I suspect several other things. I took supplements for a short period of time and majorly changed my diet. Now everything I eat is organic, and almost nothing is processed. I eat almost no restaurant food. Just a very natural diet - like how your grandmother would eat. It is a lot of work, but wow did it make a difference. The foods I noticed to be particularly helpful for LS are kale, swiss chard (both blanched to get rid of the oxalic acid), and bison/elk/organic beef. I also eat tons of yams and sweet potatoes. The pain and itching is completely gone. The only symptom I now have is mild follicalitis on one side which only comes up occasionally, and I'm not sure that is even related to the LS.

3.) One more thing. There seems to be a strong link between LS and hormones. As I said above, iodine was an important factor because I had subclinical hypothyroidism (this is very common). The problem is, when your thyroid gland isn't functioning properly, it throws your sex hormones out of whack. So if you are always tired and/or cold, then there is a good chance iodine supplementation might restore some hormonal balance. On top of the iodine, i also tried a couple herbs for hormone issues - black cohosh tea and raspberry leaf tea - and found they both seemed to help with the LS and other symptoms I had.

From all of this, if I could recommend anything, it would be this: first off, examine ALL your symptoms. Chances are, if there is something else going on, it is probably related and might give you a clue as to the underlying cause. Second, FIND AN ALTERNATIVE DOCTOR! The truth is, a western doctor cannot help you with this problem. I found that the naturopaths trained in North America were just as useless. The only two guys that I found who were able to help me had no formal credentials and practiced techniques that allowed them to 'get inside' my body and really figure out what was wrong. One did Muscle Response Testing and the other is simply able to 'feel' what is wrong when giving acupressure. Although these types of practitioners are less common in North America, I guarantee if you start asking around, you will find someone. If not, try going to some herb stores in your local Chinatown district, and they can often point you in the right direction.

I hope this helps! I was so hopeless when I first found out I had LS, but am now so happy I persevered in finding a solution. good luck to all who read this!

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  • Posted

    I don't know.  My doctor gave me a years worth of this stuff (that I'm still using), and then gave me directions, (which I posted exactly), to make my own. So, I would think she would have specified the food grade peroxide if that's what she wanted me to use.  All I know is that I have suffered all those years, and thank God, I am not now.  I truly hope this works for you. 
    • Posted

      Thanks so much Ozzie0. I'm giving it a shot.I'm also on the GAPS Diet to heal leaky gut.  Hopefully the two combined will do the trick! biggrin
  • Posted

    I hope so too!  This has been nothing short of a miracle for me.  Good luck!
    • Posted

      Aloha from Maui Hawaii

      I just purchase the food grade peroxide which is 12% and most are 3% Do you know what strength to use?

      Thank you so much 

    • Posted

      Hello from the land of the frozen...Lansing, Michigan Brrrrrr

      I just took a look at my Hydrogen Peroxide bottle, and mine says 3%. However, that being said, I've not had to mix this myself yet.  I am still using the year supply that my doctor has mixed for me.  I also don't know if she used food grade or not. Personally, if all I had was the 12%, I would start out by using less in the saline solution. You call always add more later according to your symptoms. The point is you don't want to irritate an already irritated area. One other thing to keep in mind.  This is not a quick fix.  It took about 4 weeks to really see a lot of improvement.  But, it was so worth it because now it's almost like I never even had the problem...after over 35 years!!!  I bet you can imagine my relief from not knowing from day to day how bad it will be when I wake up...all the worry that it will never improve...that it will turn into cancer...and all the other concerns that go with this miserable condition.

      Here is the formula as I received it from my doctor:

      4 oz bottle of hydrogen peroxide mixed with:

      500 ml of saline.

      I hope you find the relief that I did.  Please let me know how you are doing and if this helps.

      Nancy

  • Posted

    I know this post was a year ago...but thought I could give a bit of info to anyone who is reading this.  You can get Coptidis Rhizoma in pill form...usually sold simply as Coptis...or purchase Berberine a main component of Coptidis Rhizoma. I took this herb several years ago when I had a uterine cancer scare as I was told it would help my liver release toxins from my body more efficiently by increasing the bile flow as I did a cleansing diet with lots of fruits, veggies and other supplements. It did the trick. After 6 weeks of doing this my biopsy came back negative. There have been studies showing very positive results on disease with this herb and I've read that it has been used in Chinese medicine for over 600 years with good results and few if anycontraindications with other drugs...but it's best to procced with caution. I have berberine now in my medicine chest for a cleansing 3 day diet recommended by a cardiac surgeon...think I will do that again to see if it further improves my LS and LP.  I've just done a 5 day fast and have seen good results thus far with that. More healing than I ever seen with any other thing I have tried. Am still hopeful that I can beat this nasty disease. AND YES...I totallyagree that it is fungal in nature. I have treated it that way with some success in the past...but never have come up with quite the right combination to totally cure myself. Baking soda rinses after toileting, aloe vera gel for itching, coconut oil for moisturizing seem to be working the best.I just made my own ointment and am having some success with it.  I have slowly heated the coconut oil & added vitamin C, vitamin E, Resversatrol, grapeseed oil extract & organic honey to make an ointment.  It hardens but melts at body temperature. I keep it in a cool place and put that in the perianal area several times per day. I use the 99% pure aloe vera gel to help with itching.  This is all natural and you can make it yourself.
    • Posted

      Hi, dear Renee77108,

      thank you very much for your post. Can you please tell where is it available to buy this Coptidis Rhizoma in pills or in herb? What was written on the pack? biggrin Maybe you have a picture of it? That would be amazing to see how it looks like biggrin))

      Thank you in advance for your reply.

    • Posted

      Hello...just search Coptis online. I did order mine direct from a company that had chinese in their name...they are tiny little black pills.  They do have a warning on them now that they can cause stomach or spleen problems if taken for too long a period...or could be a problem if you have issues in those areas now. Also research Berberine...it's a capsule and is a component of Coptis...may be safer. That's what I have now and am starting a cleanse today that includes that. Sadly my fast has not been a cure. My mouth has healed nicely and the private area is much, much better, but the Lichen on my legs is still quite bad. I'm going to try a sugar and mold free diet next...thought I would stick with that over the next 45 days and post any positive results. Also look into caprylic acid. It works well with fungal infections and may be more easily available. Read up about the positives and negatives before trying any supplement to make sure it's right for you. Caprylic acid is a component of coconut oil.
    • Posted

      Thank you!!!! 

      I wish you recover soon, dear Renne smile God bless you!

    • Posted

      I read on another forum that those who had been on holiday in a sunny climate saw their symptoms improve or go into remission. A couple other sufferers reported that their symptoms improved greatly or disappeared by upping their vitamin D3 intake. (Sunshine makes vitamin D in your body...see the relationship?) I just returned from a week in sunny South Carolina and noticed the LS on my legs had disappeared. It has been horrible, itching, weeping, keeping me awake at nights with no relief...and then gone once I was in the sunshine. Once I retuned I started on 5000 I.U. of vitamin D3 in the morning and another 5000 I.U. of vitamin D3 in the evening. I also added 10000 I.U. vitamin A. Legs are still healed. I have oral Lichen Planus and also Lichen Sclerosis in the private area.  The OLP in my mouth is 90% better after only a week on this regimen. No new ulcers, swelling of gums has gone down and my tongue which was all white is returning to pink. The LS down below has also improved. I typically treat it with a spray of witch hazel and 99% pure aloe vera gel for healing and to relieve the itch. I've been able to back off on that to once a day. I am greatly encouraged...and of course much more comfortable. I'm even almost at the point to try being intimate again...which has been impossible for quite some time. I would encourage you ladies to seriously consider trying the vitamin D3.  On days that I know I will be in the sun much of the day I will back off it a bit...but otherwise will continue on this with hopes of a permanent remission. 
    • Posted

      If your taking Vitamin D you will also need to make sure you are taking K2, Calcium and Magnesium.
    • Posted

      Thank you. I get plenty of calcium and usually take magnesium...but didn't know about the K2.  I do take that in the summer as it keeps the black flies from biting when we are at our lake in the summer.  Appreciate your advice.
    • Posted

      Ordered my K2...did some research and sounds like a very important nutrient...thanks again!
    • Posted

      I do take Vit D3 daily - about 5000 IU and my blood levels, recently tested, showed levels around 53 - which is too low.  I also find that sunning helps the condition but does not get rid of it.  I"ve used Vit A off and on, have taken Cod Liver Oil too (at one time 1 tablespoon daily for months) but it did not clear skin or make oily/acne facial skin better either.  I do think loss of estrogen contributes greatly, so am back to using Estriol Cream vaginally/topically, which does help - and being fastidious about washing with anti-fungal shampoo in the area to keep the secondary yeast infection involvement, which happens when it gets really irritated down there, at bay.  It's a process~!  I've had this 12 years now and it's been much worse than it is now, but I also take daily steps to keep the area clean/dry (I blow dry in privated/under breasts) after each shower/bath - helps alot. 

      What did you leg lesions look like and how did they behave?  Mine do not itch at all, just appear overnight where the day before skin was nice and clear - then suddenly I get these scaly patches that last for weeks or months and if I pick at them AT ALL they get red/angry and grow larger.   They tend to leave brown marks that fade over time but it takes a very long time. Dermatologists (5 in total) have no idea what they were, one said it was "dry skin".  I do think there is a relationship to my hypothyroid disease that's active as well.  This all started when my thryoid went downhill and perimenopause started.  Thanks for your comments~!

       

    • Posted

      I'm not sure why, but every time I use the estrogen creams I get a yeast infection. I've read that this happens to some other women and that there is an ingredient that some are allergic to.  I guess I'm one of those. However, I do believe low estrogen can be a contributing factor. I have to be careful with anything estrogenic as I've had a scare with uterine cancer...so another reason not to use the prescribed creams. I have used a plant based estrogen and progesterin...didn't have a adverse reaction to those, but did not see an improvement in my symptons. I've had this many years as well. I use a product called cetaphil for irritated areas...and use unscented coconut oil soap for the rest of my body. I've just learned that with the Vitamin D3 that you should also be taking magnesium and vitamin K2 or vitamin MK7...as well as calcium if you believe you may not be getting enough from natural sources. I'm amazed at how much better I am and am anxiously awaiting my order of the vitamin K2 to see if I have further improvement.  I'm doing the 5000 I.U. of vitamin D3 in morning and night, but another person on this forum said it was important to add the other supplements as well.  I went online to research what she suggested and her information was substantiated by what I read. As for my legs...I was also told it was dry skin. Mine also leaves brown spots once it heals. Mine are little tiny bumps all very close together that weep when scratched...fortunately gone now.  There is a product by aveeno for eczema that worked well on mine and you may want to give that a try. I actually believe that the hyperthyroid...which I also have is a result of the LS and not a precursor as I developed this just in the past year. However, I did develop the LS after menopause.
    • Posted

      I think low thryoid helps women who perhaps might be pre-disposed to the LS to develeop it, as thyroid hormone (lacking) is well known to cause mysterious rashes and LS has been mentioned in several thyroid books I've read over the past 10 years - so the connection is well documented.  Mine came on when my thyroid and perimenopause started being problematic and now that I'm 8 months into what appears to be menopause it's now rearing it's ugly head.  Felt very "stingey" there this morning in the shower, soap stung like heck.  So I"m going to use my vaginal estriol cream tonight (does not cause me yeast issues) and make sure I have a little bit on the perineum itself - helps alot.  Am also in the midst of titering my thryoid medication upwards since recent blood work of last work showed TSH of 4.08 and FT3 very low at 2.2 and as well cholesterol/tryglycerides both were through the roof.  And here I am a careful eater, physically active, rarely drink and THIN as well~!  The thyroid is off for sure - and a low thryoid will also promote low estrogen and low progesterone, since it's more of a master hormone.  Both of which were very low for me as well.  I do not have any overt symptoms of low estrogen (no hot flashes or night sweats, I sleep very well) but vagina is dryer these past 4-5 years, sex can be painful at times and my sexual marathon husband has been instructed to "make it fast" if he wants sex with me - it's just not fun anymore.  I feel bad for him but it would be the same for me if he was impotent I guess.....!!!

      As for the leg lesions - I do know that mine are better now with higher thyroid medication dose (but not high enough) and also avoiding gluten and literallly all grains.  Mine were not itchy - did your lesions itch?

      Thanks for sharing - this has really opened my eyes to associate the two things as the same issue - makes total sense~!

    • Posted

      My thyroid could have been low for sometime as I'm told that the usual test does not always show it...so it is a possibility that it could have been lurking there for longer than I thought.  I'm on the lowest dose of thyroid medication now, but also take a supplement with iodine to give it an extra boost. I did notice that I felt better...more energy after starting it. I'm going to start back on the natural estrogen and progesterin for a few weeks again to see if I see more change...as it's only logical that I am also low in those areas. Only changes to my diet are avoiding artificial sweeteners and hydrogenated and partially hydrogenated foods. However, we do eat alot of organic, yogurt and lots of fruits & veggies and only reasonable amounts of meat, poultry & fish. So fairly careful with diet. Yes, my legs would itch to drive me crazy...kept me awake and night and no amount of scratching would relieve them. So glad that is gone and hope it stays away.
    • Posted

      What is your dose of and type of thyroid medication you take? I use Armour Thryoid at 30 mg (a very low dose, which equals 1/2 grain) and am currently titering up my dose by 1/8 of a grain as I have to move up or down on dose slowly or it causes me to shed hair.  Must be very careful with hormonal fluctuations, even changes in estrogen doses, as hair will fall like mad, I've learned the hard way a few times now.  My LS was worse when I was not on thryoid meds, so for me at least there is a correlation.  Adding in estrogen topically/vaginally seems to be key as well.  And I agree with the consensus here is that yeast/candida/mold seems to be a factor as well, but perhaps more of a secondary issue that arises once the skin in that area is compromised and allows fungal forms to grow/flourish, as the vagina is full of fungal life, good and bad.  It's got it's own ecology of yeast, just like our guts do.  I'm going to do a 30 day anti-candida diet and take a few anti-fungal supplements in 4 day rotation (coconut oil, emulsified oregano oil, neem, pau-de-arco, fresh garlic) and see if the situation improves.  I was able to get rid of my oral thrush that bothered me off/on for a  couple of decades, by going gluten and grain/sugar/alcohol free - eating only organic foods and grass fee or free range meats/eggs.  It took me over a year along wth a concerted heavy metal detox (using modified citrus pectin, high dose Vit C, juicing with greens like parsley for instance, NAC, avoiding copper rich foods) for the oral thrush to finally abate.  So I think getting heavy metals under control for me was a turning point with the fungal issues.  As well, I also tested positive for 2 gut parasites (H. Pylori & Blastocystis Hominis), the first doc insisted I take 10 days of Flagyl (antibiotic, high dose) which made me VERY sick, put me to bed for several days with headache, pain in joints, fatigue, ringing ears, nausea, plus hair started falling out). Disappointingly follow up stool testing 6 weeks later showed the parasites were "still there", so antibiiotics had failed~!  This is when I changed docs, got educated on natural ways to rid the body of gut parasites and thus began a year of truly concerted effort to kill the beasts and I was rewarded with thus far TWO "all clear" stool tests but just took another stool test last week to make sure, as gut parasites are notoriously difficult to really eradicate.  This type of gut issue can be the root cause of the thryoid being low, thus the sex hormones being whacked out as well and leading to being more susceptible to yeast issue and of course LS.  Heavy metal accumulation, something 100% of of have issue with regardless of thyroid/hormone/yeast issues, only adds fuel to the low immunity fire.  This has been and continues to be a hard road, one which I've dealt with for 25 years+ now, beginning with yeast issues and low thryoid - perimenopause and now menopause have only made it worse.  Not trying to be gloomy, just factual.  It takes work to be well, that's for sure, and all docs I've encountered thru far (and I've seen some famous ones (Elizabeth Vliet, Mark Starr) to no avail yet.
    • Posted

      I take a 25 MCG tablet of levothyroxine once a day. I also take a supplement that contains iodine called Actalin. Not sure that this supplement has made a difference and am searching for a source of straight iodine. Used to get it for my mother, so know it's out there somewhere. I typically do a parasite cleanse once per year and just came off one a few weeks ago. Have just purchased and received black cumin oil which has many health benefits, one of which is helping skin conditions. I'm starting with 1/2 tsp of the oil mixed with 1 tsp. of organic honey daily to see what kind of results I see. I'm sure sugar is an issue with LS and oral lichen planus, and I have not given it up...and know that I should.  I did just experience a flare of OLP and I had been into the jolly rancher jelly beans...so there is definitely a connection. I love yogurt and have found I can go sugar free with the fage type with fresh fruit mixed in...or a tsp. of organic honey (which I don't consider as sugar). So have been using more of that. I did have all my amalgam fillings removed a few years ago and only cook in cast iron, porcelain or stainless steel. I avoid anything packaged in aluminum...nasty, nasty stuff.  I mostly avoid anything with artifical sweeteners as well as any foods that contain hydrogenated or partially hydrogenated fats and oils as I've found these contribute to inflamation as well as other health issues.  I have upped by dose of vitamin D3 and have started back up with magnesium malate...and just recieved my vitamin K2 today, so have started on that. I take other supplements as well, but feel these have the most positive effect of the LS and OLP.  I've started adding 2 drops of lavender essential oil to 8 oz of my witch hazel spray that I use and continue with the aloe vera gel (99% or 100%) for itch in the private area. I totally agree that juicing has tremendous benefits and have a $2000 juicer that I need to pull out and use again. I've used pau-de-arco, use lots of garlic and coconut oil in cooking and baking, and use neem oil on my feet. Have read about the oregano oil, but have not used that. My parasite cleanse consists of wormwood, non-irradiated cloves, and black walnut hull extract (have started making my own from our own tree). I also snack on raw pumpkin seeds, which are also anti-parasitic. I have natural hormone creams and used them for a month without any positive results...but may try them again. Interesting about the hair loss with the flucuation of hormones. My hair is about half of what it once was...very depressing. May try rogaine to see if that helps, but know that you have to continue to use it to keep any results you see which is quite expensive and a bit of a pain to do. Speaking of parasites again...those with health issues would do well to have a complete stool scan and blood work from a certified homeopath as the test your general practioner orders does not generally scan for all the possibilities.  Well that's my 2 cents worth for the day. Now that I'm adding the vitamin K2...I will report back on any positive results I see from adding that to my daily supplement intake. I'll keep trying things and searching until I find what puts all this in to remission.

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