Lichen s

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its been terrible i have had no symptons of ls in a month and all of a sudden i have alot of white blisters and they itch.i have been sitting in soda and epsom salt warm water 2 times a day my dr put me on clob to help so far was working great but i also have ibs and boy today it really hurts. if you know of any thing that would help please let me know

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  • Posted

    So sorry, Brenda for your sudden "surprise". I had that same issue out of the blue a couple weeks ago also.

    It's distressing isn't it, just when you think you've be a "good girl" and been doing all the right things.

    Well, I went through my whole protocol of things... and true to my nature I get feeling well from whatever and then I start to let slide on my vitamins and stuff.

    I realized that I hadn't been taking the apple cider vinegar in water upon waking in ages. I realized I had also dropped back on the Grapefruit seed extract drops. I haven't been able to afford all the supplements that the autoimmune protocol identified that I had written up for us all about a year ago. It's a real eye opener to realize that those vitamins ARE NOT just a "pretty extra" or pennies wasted down the toilet, eh?

    I dowsed my list of supplements and found that I should up my vitamin C for a period of time. I'll get to the others as I can, and I got back into the habit of apple cider vinegar water and also the grapefruit seed extract.

    OH! and Brenda, I restarted taking the LDN I had researched more recently. If you haven't heard of Low Dose Naltrexone (LDN) I wrote up my discoveries about that too. just click on my name to find my discussions. what i remember seeing is that it is ding wonders for people with IBS.

    Hope you feel better soon.

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    • Posted

      Hi Nancy, I was okay too for a while, then out of the blue, not a pretty down under.

      The apple cider vinegar. Doesn't that taste awful. I have a bottle just sitting in my fridge. I really need to try that.

      Also, LDN. Do i need a prescription for that? I was going to ask my gyn about taking it.

      Thanks!

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    • Posted

      HI Susan - you'll get so you love it - your digestion will. Start slow like only a teaspoon or less in some warm water. It goes down fast don't worry. then have breakfast and you won't even notice. smiles. Then you can move up to a tablespoon etc.

      YEs, LDN is a prescription deal and finding docs who know about this use of it takes a bit of calling around. IF all else fails I've even seen a couple Doctors who will prescribe from an online Skype Doctors appointment.

      YOu might want to print off some info to take to your gyn I've seen lots of women mentioning having to bring the info to their docs.

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    • Posted

      Nancy, are you keeping careful records of what you are taking...then not taking...to help you determine what may actually be working? Don't see how else you can determine what is essential and in what amounts.

      I haven't yet had any flare ups and my original symptoms were not severe so what I am trying to do is to strengthen my immune system if possible to be able to avoid using a lot of the steroid. Have mentioned in another thread that I have added boron tablets to my daily supplement intake, but notice no changes at all. Is that one that you take?

      Re the LDN were you taking it when you had the flare up?

      B.

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    • Posted

      Thank you Nancy. I printed out the info on LDN weeks ago to take to my gyn. Hope to see her soon. She is the one though that doesn't think this is an autoimmune disease,, so not so sure she will prescribe it. My GP probably would after reading up on it. Has it made a difference for you?

      Thank you.

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    • Posted

      Beverly, grin - careful? well I do keep my print out of everything and mark them up or down as I see fit sort of regularly. I do use dowsing to help me decide what amounts for what amount of time.

      I have to admit that I haven't taken the LDN for long enough or consistenly enough - yet - to be sure about how it is helping yet. I'll keep ya ll posted.

      OH! but did realize that I had run out of 20-Mule Tea Borax for my evening bath... and hadn't replaced it for a couple of weeks SO if anything... It makes me more sure about borax baths than anything. Cause i felt better the very next day after getting some at the store, and really well by the second night.

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    • Posted

      Hi Susan, I was just telling Beverly that I haven't really been at the right dosage yet long enough to notice for sure. though I do think my energy level is better with it.

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    • Posted

      Thanks Nancy, Good to hear. I will definitely try it. I'm still hoping the right mix of things will eradicate LS, but I'm probably dreaming.

      You take care,

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    • Posted

      OH! sorry forgot to mention, I have also taken borax in water each day... chagrin - except I had fallen out of that habit too. I've known about the benefits of having a tiny amount of borax in our water for quite some years before this Lichen though I had not been doing it for a long time. So when I learned about it's usefulness for LS I wasn't terrified of doing so.

      Just to let everyone know, Boron (borax) is a REQUIRED chemical element in the human body - you can even find it in the list of the biochemical make up of the human in a wikipedia article.

      For those worried about using Borax, SO much less expensive than a medical grade from the health food store - think of it this way: It's the same thing with a bit of inert dirt - have you all read that there is now recognised health issues for the younger generation who have been brought up so antiseptically that it is making them MORE sickly? GRIN - so don't worry about getting your daily dose of DIRT/EARTH. smiles.

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    • Posted

      Nancy, sorry but I do often times have difficulty following you. You take baths in Borax daily (but haven't been lately) and or you drink it daily (but haven't been lately)...or both ? I do understand that it is a mineral that is said to affect how other minerals are used in the body and is even said to increase estrogen levels in older women, but I have no idea how. I don't know how any of us that are taking supplements or are trying other topical remedies can know what is working unless we are very rigorous about keeping track. Even then we would have to go about it as a scientific experiment trying one at a time in order to know which was actually affecting us, right?

      I'm taking quite a few supplements at the moment (based on a book on AI disease that I dare not mention as the post will be blocked). If the LS symptoms disappear after a long period I will assume it was one of those supplements that affected it. I can then eliminate them one by one and if symptoms return, I suppose I can assume what was eliminated had had an effect. Not sure how else to go about it. It seems consistency would be important, but than others say they have to switch around what they are using which doesn't seem to make much sense unless the LS builds up an immunity to it. I wonder if people with psoriasis experience that when using different remedies. Anyway, it's seems we are all flailing.

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    • Posted

      Hi Beverly, Flailing is the right word. I'm beside myself with a horrendous flair up. Soaking in borax is soothing, but doesn't seem to get rid of the scarring and white areas which are so prevalent. I'm trying to get an appointment with a dermatologist. Seeing my gyn next week who doesn't believe LS is an AI disease, but I need to know how bad my situation is and how much worse it can get. I would imagine the dermatologist may have more information on that. I use various creams and ointments, including cannabis in various forms and the Clob. I've kept the itching at bay, but not fusing, scarring, white patches and disappearing parts. I've incorporated a lot of Nancy KB's info. I wonder if an immunologist can shed some light on LS.

      Good luck to you!

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    • Posted

      Susan, when I mentioned borax to my gyn she said it may sooth, but nothing but steroids have been shown to control LS. As a vulval skin specialist she sees many LS patients and can't help but know more about it than any one of us. Re if it is (or not) an auto immune disease I have read (and she said) it is "believed" to be. Here's a definition: "Immune system disorders cause abnormally low activity or over activity of the immune system. In cases of immune system over activity, the body attacks and damages its own tissues (autoimmune diseases). Immune deficiency diseases decrease the body's ability to fight invaders, causing vulnerability to infections."

      So perhaps your doc feels it's caused by a deficiency and some "invader" is attacking us. I haven't a clue. Why not ask your gyn what her theory is. The deficiency theory would fit with the lacking certain supplements theory.

      I'm trying to get an appointment with a Functional Medicine doctor as they treat with supplements, but have yet to get a return call (not encouraging). Hadn't thought of an immunologist. The two specialties that are always mentioned are gynecological or dermatological.

      I can't imagine what more you can try as you seem to be trying everything. The thought of losing body parts is particularly frightening and no doubt we are all living with that same fear. I wonder if it is eventual no matter what we do.

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    • Posted

      I think that LS is something we have to learn to live with it and all the unpredictability of it no matter what we do. There will be calm periods as well as flare ups. I think I wouldn't mind this if there was no scarring and missing parts and fusing. Because once that happens there seems to be no return to normalcy. That is what I am trying to prevent, but LS has a mind of its own. I couldn't possibly lube any more than I do and cannot rely on the Clob every day for months because that is dangerous.

      I never heard of a Function Medicine doctor. I did hear of a homeopathic gyn in NYC and called there but they do not take insurance and the first visit is $2400 and about $500 for each visit thereafter. Tried accupuncture, cannabis. Maybe a nutritionist next.

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    • Posted

      Holy cow!! I cannot believe that charge for homeopathy! I saw a homeopath once (not an MD) for a chronic infection and it was a reasonable charge. There is nothing that could justify that charge. Must be a dr, bleeding the 1%. Interestingly, the remedy I was given stopped all signs of the infection, but I started to exhibit flu like symptoms. The practitioner said that meant it was the right remedy, but too strong. Tried two others that did nothing. Then tried an MD who also used homeopathy but his remedies were not effective at all. Finally got an MD to prescribe flagyl.

      Functional medicine is a form of alternative medicine. Its proponents claim that it 'focuses on the root causes of diseases based on interactions between the environment and the gastrointestinal, endocrine, and immune systems to develop individualized treatment plans (according to wikipedia).

      Someone from the FM dr's office returned my call today. I called minutes later, but just a machine and no call back. May take months to speak to someone!

      I would assume there are people in the UK as well as the US who practice this, but I'm not sure how many are MDs. Most probably are chiropractors.

      have you tried taking supplements?

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    • Posted

      I do take supplements, but need to know exactly what I am deficient in to invest in more vitamins. I will have to find someone else because her fees are too much, as was the holistic gyn in NY, $2400, and doesn't take insurance.

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