FOR LICHEN SCHLORUS just got back from Dr. visit

THATS RIGHT Guppy, they don't and she just made it that it was no big deal, so i am going to keep using the aloe/turmeric oil and the emuaid max.. also watch what i eat. but i feel a little better emotionally cause before i couldn't sleep , wake up so worried that what was gonna happen to my life, felt very depressed . i just pray and try and keep this mess calm down.  janie

I’ve just found it too ! It’s great to find women like me . We can share our ups and downs . Help each other fight this terrible thing . 

This is a phenomenal find, Susan!  I read the entire 30 page paper from Dees's 12 years of research; and i read her note to all of us from before she died. People are carrying on this site.

I highly advise all of us to read the a paper cove to cover.. So much info. She didn't look into the autoimmune nutrition as that association hadn't been made in 2008 when she was doing the research. BUt OH MY she found amazing other things. AND for those of you who are fused... ! wow, she says she unfused in a couple years... dedication!  THANKS Susan43705.  

Glad to help.  Nancy, I'm in crisis right now. I thought I was doing fine with the Emuaid, but now today I cannot believe the mess down there.  I'm really freaking out and don't know what to do.  I don't know if the Clob will help at this point. From one day to the next it's a disaster and I don't know where to turn. LS is eating me up.

OH honey! it IS terrifying in the midst of worst... Just remember that we've all been there .. and that somehow for some reason things pass, and get better etc. 

Is there anything we can help with this evening?  what is the current "disaster"?  what is the pain level? Did you see my note this evening about using the over the counter cortizone cream ( I used it last week for TWO spider bites and noticed that it said it as approved for exernal anus and feminine areas...  

one day at a time: how about a check list? let's breathe together. 

_have you had 8 glasses of water today and yesterday? 

_have you been taking probiotics or a tablespoon of sauerkraut  at every meal?

_magnesium, 1,000mg?

_zinc 30+mg?

_L-lysine, 500 mg? or more

_vitamin C, 500 mg? 

_selenium, 200 mg?

and all of it really, D3, k2, B complex with extra b-12, folate extra as well, A, MSM? 

I know you are in dire stress, so not the time perhaps... but trying to breathe with you right now... 

There is hope; and YOU found the article making it even more so..

it's all okay it gets better. keep the faith, but get out of pain asap. luv,  

 

Hi Nancy,  I have no pain or itching, just tingling like the LS is finding an another area to destroy. I simply can't believe what has happened over night.  I really think that Estradoil destroyed me. After I smeared it on sparingly I didn't feel right, I was very nervous about it,  maybe just paranoid  putting yet another product down under.

I am taking Vitamin D3, and liquid B12 and was getting shots for the B12, not the rest because I don't know what quantity or when they should be taken. Vitamins can b dangerous if one doesn't know what they are doing.  I need some guidance.  Should I see a nutritionist to find out how much of each of those you suggest above?

I don't know if what has happened overnight is reversible.  Yesterday I was happy with the the way things were going even though most of me is destroyed. 

I spent over $1,000 on acupuncture and herbal pills, and a lot of money on creams, ointments, gels, etc.  

Thanks Nancy. xo

Oh gosh, yes it can get expensive I'm sure. Well what I've been talling folks for months now (as well as others also know) we gotta keep up with getting our blood work done at least once a year; The vitamin D level is the baseline as far as I've researched.  That can easily go up to 90 ng/dl without causing trouble. AND thats why I worked on finding all the Co-factors for each of the supplements that i could. Maybe I need to repost it all line item by line item. What I found is that Vitamin A keeps vitamin D# from becoming toxic AND Vitamin D keeps Vitamin A from becoming toxic. I found these things from medical sites, but I don't think most docs now these interactions.   Susan I don't remember where you live? IF you can afford to pay to go see a FUNCTIONAL medicine doctor OR a Naturopath those are the "progressive" docs that you are looking for. You will be able to finally relax,honey. blessings  

I’m sure if you listen to all these experienced ladies on here , they will help . I’m no help because I’m learning myself . Good luck with it and hope you can get it better. 

So, let's see, will my posting here now to my own posting last night be reposted to our email lists so that Marilyn will find it?  I'll try. Let me know thanks! 

Hi Nancy,  I get lost in the quagmire of all these postings and try not to miss being responsive. I"m in the Northeast with insurance and have a doc who has tested my levels.  Was lo on B-12 so took shots for a while, now on the drops. Don't think she tested for any other deficiencies but suggested I take D3. I think I will see a Naturopath, but they may need blood levels to determine how much vitamin supplements I need.  I just ordered the D3 with K2 from Pure Therapeutics.  Now looking for the others.  Had a really bad itch attach last night and washed with baking soda and water, then the Clob mixed with Emuaid.  That quieted things down.  It's been weeks since I had one of those flareups.  Not sure if I'm having a reaction to the Estradoil. Thanks Nancy!!! 

Thanks for your uplifting spirit Nancy! 😍 I am new to this and like others so frustrated when trying to listen to my Dr. but wanting to try more natural remedies. The Clob made the rash worse ! Is that a normal first reaction?  Dr insisted I keep using for another week and I tried but the pain and itching so severe I could hardly function.

Becca honey thanks for the comment. smiles.  About the Clob you'll have to ask aor read up on others here who have found the same problem with clob as you are describing. I nevr used it and won't.  Lessons learned fro other HERE. Ther are also other here who find tht is was/is imperative for them... BUT I never hear whether those who find it "imperative" have ever used or considered the NUTRITIONAL aspects of this illness. 

I have to say that i'm beginning to believe that the Admin on this site has thing against nutrition! HE (it's gotta be a he, for what woman who HAS this LS would ever deny others aid from the pain) has deleted most recently a long piece of work to try to help Susan who ASKED for help with what I exactly take to be out of pain and healing (dear Admin - just so you are perfectly clear:  I didn't say "cure". 

I did NOT put that smiley face on this post????

Hi Nancy, yeah, I think he is overly zealous. 

What is this site for but to help each other and share what we have learned? 

I post on an Ulcerative Colitis forum and we can pretty much post anything we like if we think it will help others, links, everything.

As an aside, I came across an article on Iodine.  Google it, it appears that it is crucial to have this in one's diet, especially for those with thyroid problems which is commonly mentioned on here by some.

HI Guppy - happy day!  As a matter of fact just yedterday my lovely landlady and I ewre discussing he need for iodine and I realize that I USED to take Atomidine drops from the Edgar Cayce foundation years ago... and just got out of the habit...  

I had the oddest day yesterday with getting a fever out of no where - not attached to any deifned illness - I just had to lay down for the weakness - then slept 10 hours!  ha - I wonder if it was ust a midsummer "renewal"?  cheers. 

Hi Nancy, I will have to get some I think just to be on the safe side. 

I had to see my Rheumy today and he tested my vitamin D levels and it was 49.2 ng/ml which is good.

Sorry to hear you had an 'off' day, I'm afraid that happens to the best of us and I usually find a nap sorts me out too...hope your feeling good now.

I have been overindulging recently and of course, I'm paying the price as my clitoris is sore  Lol!  that's the area that's always hit when I eat or drink something I shouldn't, I guess we all get different symptoms.

Happy days! 

😁   So sorry for your indulgent reaction.  OMG .. will my hubby and I ever have sex again?  It’s already been over a month😞

I just love that cute british expression, "have a think" as if thinking was a noun, an object, not an actionable verb" hehe. 

Happy to hear that your D levels are  getting up there. remember that the autoimmune researchers that I found show that we need our levels up even higher like up to 90 ng/dl. 

is your arthritis feeling better or worse since starting D?  Ahhhh, so girl, are you going to spill the beans on what your secret pleasures are that get you and your clit in so much trouble? 

I have sworn off most all chocolate and not only my LS but my heart feels better for it. SO, I've been trying to find a different treat - that is not cookies. Wellllll, a few days ago I pulled a lemon tart out of the health food store cooler... ahem... it was So yummy... BUT naive me... the "healthy sugar" content was through the roof... and I paid. yep, mine goes to my anus.   interestingly I CAN indulge in a few dark bittersweet chocolate chips health food variety and they cause no probs..