Diet change helps lichen sclerosis

dear ss margot,

Thank you so much for verifying my intuition that an ultra hyper steroid was not going to be the answer for me even if i could have afforded it.

I'm a 72 year old who was only recently diagnosed a month or so ago. BUT over the holidays I had to read up on my own until I could get an appt. UPSHOT - I found ONE message on her that mentioned Vitamin D deficiency. .. so I went off to holidays visit with my daughter and family  taking 15,000 every day, in 2.5 days the itch pain was down and i also saw another woman mention being helped by acupuncture, so I got to that as soon as i  got back home (hadn't been in 25 years) and my perineum fissure was closed within 2 weeks. I think it was both of them that did the trick.  NOW of course I am learning that anything can make it all backslide, so that's why I worked up the nutrition protocol I recently posted.  SO, castor oil on the outside and vitamin D3 with Vitamin K2 for the inside plus the other cofactor magnesium as well as boron- the absolute minimum protocol I starting to believe.  Best of luck  

Hi Margot, we all react differently but I am happy to tell you my experience with the steroid cream.  What I found was that it did its job to eliminate the white plaques of skin...in fact, it worked like a dream, and in only a week!  But, when I applied the cream to a lesion it seemed to have the reverse effect and I had an outbreak of red 'spots' that spread alarmingly up the crack of my butt.  From that day on I figured out a different way to treat lesions/sores.  What I do is I use Desitin cream  for two or three days, and less is more, you dont want to be putting much on.  Once the agony of the sores dissipates somewhat I then dry them out.  This involves a  bath, drying with a hairdryer 'on cold' then dusting the area with something like cornflour/flour, I use Yucca flour.  This has the effect of drying the sore out and workes well.  You can only do this though once the sore has been calmed down with the Desitin.  

You mentioned that you perineum has split down the middle, I think that this is LS  at its worst, and not the steroid cream.

I am salicylate, gluten, lactose, histamine and sulfite intolerant so I understand about food intolerances.  If you are eating any foods that your body is intolerant to it will cause a flare-up.  If you are eating too much sugar which is in carbohydrates as well, it will cause a flare-up.  Diet control is the key to managing this disease and once you get that right everything becomes easier.  

I eat goat cheese and sometimes goat milk, it is much easier for people to digest.  I drink soy, oat, and rice milk alternatively, and take yogurt and butter and I seem to do okay with that.

Hope this helps a bit.

Guppy I’m shocked that your doctor has you using cream! Creams by nature have the potential to have more allegens and trigger adverse reactions than an ointment . I highly recommend you ask your dr to switch from cream to ointment . Yes it’s greasy but you don’t need any irritants on top of the issues we already struggle with. Also, if you’ve read about high potent steroids the side effect is that it thins the skin , which happens with our condition anyway .  Doctors have prescribed  some kind of antibiotic ointment to heal the lesions. But I found out I’m allergic to antibiotic ointments . Maybe you are having lesions as a result of the cream . I’ve had lesions that wont heal for months . They move only healed by changing my diet completely. I will admit I’ve been home with the flu and ate popsicles for my sore throat. And my symptoms flared immediately😕back on teach with no carbs , no gluten no dairy. 

Marci 

Hi Marci, of course, the steroid cream is not ideal for someone like me...or anyone else...but it is all we have and the ointment for someone like me won't be much better which is why in the past I have used it sparingly.  It is something to use in an emergency and not something that I would regularly use.  I have not had a flare up in a LONG time due to my diet restrictions I think, sorry I should have made that clear that I was giving you advice from  when I was flaring ages ago before I followed the diet I am now on.  

Anything with sugar in is a trigger for LS  and even worse when you are flaring.

Hi Guppy, I also think that the clob [i use ointment but it's the clob which does it] eliminates the white plaques of skin - that completely worked for me and my own view is that an armory of clob plus the other approaches to damp down potential for flair ups is the way to go.  The skin thinning isn't a problem because LS thickens the skin, so it balances it out, according to my gynae who also says there are foods which help and foods to avoid, so she isn't close-minded to anything except externally applied borax, I guess.  Great tips above.  Best, j.

Good morning  - oops after noon here in North Carolina. 

I've just really now gotten the message that we can use ll the supplements I want, but without a change in diet the ladies before us have confirmed - it ain't gonna clear up.

But for teh external comfort department, castor oil is definitely for me. ... and vitamin D and acupuncture...

How much vitamin D do you take.  I"m on D3 taking 10,000 units  day.  Wondering if I should up it.

Also, tell me about the acupuncture.  Where the heck did he put the needles for LS!!!

Thanks!

HI Susan! 

I took 15,000 (three chewables a day for a couple of weeks and then backed down to 10,000. Now I've been out for a couple weeks and just ordered liquid drops that includes k2. I have been having  a bit more trouble keeping things at bay being without D which kinda convinces me - een if it is only anecdotal.  ask your doc for an update on your D status and if it is any lower than 60 ng/dl than you can feel safe loading up. It took a friend of mine 2 years tt get her Vit D level to increase from 30 to 60 (but she was battling breast cancer without the standard slash and burn, so it might take any of us less time to raise our D levels - except.. oh yeah... LS is an AUTOIMMUNE disease and so is cancer - duh..  

Oh, so the acupuncture. I didn't ask, I don't know anything about the points - not my expertise! I just told him that I had LS/skin issue in the vulva and thyroid issues and he did his thing - listening to my pulse at the wrist.  ha... oh oh you mean did they need tot go into our vulva - oh gosh no!  don't worry about that! smiles. arms, wrist, thumb, legs, toes and crown of head if I remember last time.  smiles. 

Hi Nancy, following your vitamin info with great interest. But I’m a bit confused about the amount you’re taking. I bought some one-a-day D3 tablets which are 1000IU.( Seemed to be all that’s available) Is it 15,000/10,000 IU you’re taking or is it a different strength measurement? Also bought Magnesium powder which I take at the same time. 

Thanks so much.... 

Hi Painty,

It's also possible to find 5,000 iu strength per tablet or chewable which is what I am taking 2X a day righ now.  ANYthing is better than no Vit D Painty, and depending on your other health issues, the 1,000 might be best for you at this time, but I've got this thyroid issue on top of the LS and a wonky heart so there several issues that all respond to Vita min D. 

So, use your own intuition about how many times a day you take your new tablets, but I'm so glad you are getting started on them. for the long run, don't forget that Vitamin D also needs to be taken with VIt k2, omega 3 and boron for best distribution throughout the body etc.. 

Oh, i didn't know that magnesium came in a powder form, that's interesting. I do know that the MSM works best in powder form...  hope it helps. for try more.. and then get your levels checked  in a few months.  cheers, nancy    

Thanks for that Nancy, also for the reminder re K2, Omega 3 etc. 

Cheers. 

Thank you ladies for sharing your advice.  I have LS with Diabetic 2 with heart disease and I am about 30 lbs overweight.  I have taken the advice I have found on this site and cut downnnnnn on my sugar, trying to cut it out completely but not successful yet.  I had decided to sign up with Weight Watchers before I found this LS form.  I had already decided that SUGAR was a trigger for my LS lesions.  I just last nite started using Desition ointment, had been using emuaid for about 8 months.  Thanks for posting your advice on this forum, as I have found new friends.

Hi there, Good for you for trying to lose the extra weight.  Yep, sugar is without doubt the biggest trigger for LS and when you are in a flare the slightest bit of sugar triggers even more symptoms. I use Desitin ointment when i flare and it does the job. Welcome to our group.

HI there BananaNana - smiles ( I have a 22 month old grandson and decided that Nana would rhyme nicely with my name Nancy, so I've become a Nana too!) ...

SO, When I started this research a few weeks ago I was looking or the original "domino". I was lead strongly to Vitamin D as the worldwide cause of the autoimmune PANdemic.  

As I've been writing all this up and making daily nutrition list etc I've found that the VIT D is probably the second domino just below the original "offense" against humanity.... and the first is LEAKY GUT SYNDROME. 

Every article I run across puts diabetes in the same autoimmune category with LS and with LEAKY GUT. So now I've got my list of nutritional support i've shared, AND... also a total redo of my kitchen pantry.  I can't agree more with the other women here who've already gotten the message somehow that there will be no "cure/healing" without abiding by what has been discovered about DIET for LEAKY GUT and or autoimmune and Anti-Inflammatory. We all have slightly different metabolisms etc so our actual food choices will be slightly different.   

My concern for your Weight Watchers choice is that if they don't have a LEAKY GUT protocol and food recipes etc - it won't do you any good, in fact worse.  DO you know if they have such? 

Desitin on the lesions also, do I need to use the corticone also  thanks for advice

Hi, I can tell you what works for me..but of course we all react differently.  When I was flaring (about a year ago) I used the Clob cream for any white plaques of skin and for pain/soreness/itching of the clitoris...I dont use it anywhere else.  For lesions, sores, butt cuts etc I use the Desitin cream. Why? because I think the Clob is too strong/harsh for sores and cuts and the desitin does the job..less is more with the Desitin cream.  The Clob cream is good for getting rid of the white plaques of skin that are often in the shape of a butterfly on your undercarriage, but once you have the got that under control look toward finding other methods to control your LS...there is a thread on here called 'experiment with Borax' which some women swear is good...and so I would look for that.

BanaNana was given to me by my son-in-law when he posted this sign on his front door after the grandbaby was born "No Ba-Nanas today".   (smiles),

of course it did not stop me, but the name has stuck with me.

?Thank you for your reply.  I am going to Weight Watchers today, I will ask about Leaky Gut.  I do feel better today after stopping sugar, drinking lots of water,  and using Desitin.  Also trying to change my diet.  But I am hungry, have not felt satisfied.    Somewhere I read not to take Vit K and Vit D and Boron ( which I do not know what this is) together.  Something about one of these will bind the good vitamin which therefor flushes it from my system.  But I am not sure the exact rule.  Do you have any knowledge on this.  Thank you for your advice and this forum, it is extremely helpful.  I thought I was the only person with this problem, which is embarresing.

HI BanaNana,

Well I did read the same info about D and K slightly competing with each other, even while both are needed.  I debated the issue, but if K slightly reduces the uptake of D, and the cost of getting K1 AND K2 in one single supplement (both are apparently needed) is exorbitant (for me at any rate) I have elected to buy a liquid drops brand that includes them all.  Vegan "full spectrum"  D3 & K2.

THe proof in the pudding is that I only received the product in the mail from amazon two days ago, and my flareup from having been out of Vit D for 2 weeks is that the LS has stopped almost overnight. 

I hadn't heard anything about boron interacting negatively with Vit D. BUT I'm now really really convinced that Boron is part of the solution for us all.   

Smiles - oh! it might help everyone to know that a few years ago when i was researching the elements that compose the human body, BORON is one of the 29 or so out of 60 that are NEEDED for human health.  

Hi there, I find millet to be a good thing to have in my cupboard as it is a low carbohydrate (sugar)  I found this online...

"1. Millet is alkaline and it digests easily.

2. The Hunzas – who live in a remote area of the Himalayan foothills and are known for their excellent health and longevity – enjoy millet as a staple in their diet.

3. Millet will hydrate your colon to keep you from being constipated.

4. Millet acts as a prebiotic feeding microflora in your inner ecosystem.

5. The serotonin in millet is calming to your moods.

6. Millet is a smart carb with lots of fiber and low simple sugars. Because of this it has a relatively low glycemic index and has been shown to produce lower blood sugar levels than wheat or rice. (Kamari and Sumathi, 2002)

7. Magnesium in millet can help reduce the effects of migraines and heart attacks.

8. Niacin (vitamin B3) in millet can help lower cholesterol.

9. Millet consumption decreases triglycerides and C-reactive protein. Scientists in Seoul, South Korea concluded that millet may be useful in preventing cardiovascular disease. Nutrition Research. April 2010; 30(4):290-6.

10. All millet varieties show high antioxidant activity. A team of biochemists analyzed the antioxidant activity; all varieties showed high antioxidant activity. Journal of Agricultural and Food Chemistry, 9 June 2010; 58(11):6706-14.

11. Millet is gluten-free and non-allergenic. A great grain for sensitive individuals.

12. Millet’s high protein content (15 percent) makes is a substantial addition to a vegetarian diet.

Anyway, you should probably not let yourself get hungry or else you might end up binge eating.

I have it for breakfast sometimes too.  You can buy puffed Millett online.

OH, Guppy! how wonderful 

I've never known anything about Millet or how to eat it. I've now got a wonderful new food to discover. 

Just the day before yesterday I was wondering what to eat just like BanaNana here,a dnI foudn out about how to make brown rice even better for us - 

I just finished my first batch of soaked GERMINATED BROWN RICE and had some for dinner last night. WOW, it's softer and even more tasty...

ha! after all these years. I find this out about it created a higher nutrition content and higher fiber content - all because I got this lichen - geesh god's got some sense of humor!

 Smiles - and I really enjoyed the ease of reading one item of intel at a time, like I had created the first set of autoimmune premises.  

Your welcome! I love your enthusiasm 

Ahhhhh.... Guppy... as I was reading on recipes for how to use Millet I came across an article that says that people with thyroid issues should not have very much of Millet as it is a goitrogen. 

So any of us who have LS AND thyroid probs should not use millet as a substitute for wheat on a regular basis. 

So, back to learning to germinate my own rice.  I have learned that the phytic acid in reice if the problem for gaining access to the nutrition inside. oh, and something aobut phyate as well. anywya,the upshot is that germinating the grain before cooking reduces the phytic acid by 96%.   

Thats a shame, maybe just occasionally might be okay.  

I was intolerant to rice last year, I couldnt have it and then I found that soaking it overnight did the trick, for me anyway.