Maintenance/Recovery Premise from Lichen Sclerosus

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Okay, GALS and guys,

Here is my two-week best literature search and analysis for long-term maintenance/recovery from Lichen Sclerosus, a now proven autoimmune disease.  I’m sure others could add to this, and many of you have more years experience with dealing with it.   I’ve also made up a daily protocol sheet of that I’ve put up on the frig. I’ll share in the next couple days for anyone who is interested. Hope this all helps someone.  Take what feels right for you and leave the rest.   You all have been my inspiration, some going back years on this site who don’t post here anymore, but they left a trail to follow.  (I have the links list to share with anyone who wants to know where the validation for each item comes from.) There are 45 items. 

 1.    The cause of Lichen sclerosus is defined as a “mystery” on many medical websites, with the note that it “may” be associated with “overactive immune system” and “hormonal imbalances.

2.    Lichen sclerosus has been confirmed to be an autoimmune disease as of March 2012 as reported in a National Institute of Health pubmed document. (1)

3.    LS primarily affects post-menopausal women, but also men, young women and children as well. (2)

4.    Nearly 75% of the 24 million Americans suffering from autoimmune disease are women, according to the American Autoimmune Related Diseases Association (AARDA). (20)

5.    Sex hormones seem to be involved since many autoimmune diseases fluctuate with hormonal changes. The sex hormone that is commonly low in such women is DHEA. DHEA is produced by the adrenal glands, the reproductive organs and the brain. It is a natural steroid. (20)

6.    Women frequently have low DHEA which reduces further with aging.  But why, asks the physicians at Root Cause Medical Center in California? Frequently it is from overstressed adrenal glands “stealing” it from making sex hormones to make “anti-stress hormones” instead. (20)

7.    Adrenal stress from poor absorption of nutrients, unstable blood sugar and the presence of infections are common reasons for this “pregnenelone steal.’ – which  are all symptoms also seen with gluten intolerant patients. (20)

8.    Lichen sclerosus (LS) is strongly associated with autoimmune disorders, particularly thyroid disease, in almost 30% of patients. (3) (4)

9.    A strong association with autoimmune disorders has been reported in 21.5%–34% patients and up to 74% of patients found to have autoantibodies (5)

10.  Thyroid issues (hormones) are epidemic yet are often unrecognized and undiagnosed by the public or medical communities. (5)

11.  Most doctors who “suspect something” only order the TSH and T4 tests (6)

12.  The Thyroperoxidase (TPO) Antibodies test should be part of the standard testing. (6)

13.  The implication is that many sufferers of an autoimmune disease may have no idea that they may also have a low thyroid condition.

14.  Autoimmune disorders such as Lichen Sclerosus, Chrone’s Disease, Thyroid disorders, rheumatoid arthritis, lupus, inflammatory bowel disease, cause inflammation. (7)

15.  Current standard protocol for LS is the use of corticosteroids that reduce symptoms but not the cause(s). (8)

16.  Long term use of steroids on delicate skin causes thinning. Postmenopausal women already experience age-related thinning skin.

17.  Vitamin  D Deficiency Linked to Autoimmune Diseases.  Dr. Gerry Schwalfenberg of the University of Alberta published the first case report of a woman with a treacherous autoimmune disorder, idiopathic thrombocytopenic purpura or ITP, that vitamin D apparently cured.  More than 160 known autoimmune disorders exist in humans and more than 5% of the population has at least one of the disorders. They occur when your immune system malfunctions and attacks your own organs or tissues. No known cure exists. In the journal of Public Health, 2012, Dr. Schwalfenberg reviewed an extensive number of newer medical papers and concluded that, “Evidence that autoimmune disease may be a vitamin D-sensitive disease comes from many sources.” (21)   (22)

18.  Vitamin D acts like a hormone and is an anti-inflammatory. (9)

19.  The vitamin D endocrine system (VDES) regulates aging in many tissues, including skin. (10)

20.  Deficiency of Vitamin D globally is at epidemic proportions. (11)

21.  *If we have thyroid antibodies (autoimmune) in our system, our skin will not absorb the vitamin D from the sun as it does for other people… no matter where we live! (6)

22.  The highest levels of inflammatory inhibition occurs at 50 ng/ml up to 80 ng/ml Vitamin D (12)

23.  i.e. if your doc says your D levels are fine at 30 ng/ml that’s too low to cure LS ( or any autoimmune situation)  (6) (8)

24.  There are no adverse effects of Vitamin D supplementation less than  ~ 80 ng/ml.

 

25.  Cofactors for Vitamin D include Magnesium;  Omega-3; Boron; K2; Cofactors need to be adjusted when taking a lot of vitamin D for more than a month 

"A lot" is more than 4,000 IU Vitamin D daily (average)  There is virtually no agreement as how much of each cofactor is needed vs vitamin D level. The first three cofactors have, like vitamin D, greatly decreased in the human diet in the past 50 years  (13)

26.  Anti-inflammation diet and supplements will help correct the imbalances.

27.  Magnesium and potassium are also strong anti-inflammatories.

28.  Impaired liver function is associated with autoimmune diseases such as LS.  (18)

29.  The liver functions to filter unwanted toxins from the blood coming from the digestive tract, before passing it to the rest of the body. The liver also detoxifies chemicals and metabolizes drugs. (16)

30.  An herbal liver cleanse (Milk Thistle) and Candida clearing diet will aid in healing. (18) (29)

31.  The lymphatic system is a network of tissues and organs that help rid the body of toxins, waste and other unwanted materials. Its primary function is to transport lymph, a fluid containing infection-fighting white blood cells, throughout the body.

32.  The lymphatic system plays an integral role in the immune functions of the body. It is the first line of defense against disease.  Skin problems such as dry or itchy skin are evidence that our lymph system is clogged. (17)

33.  Rebounding is one of the easiest ways to pump the lymph.

 34.  Research confirms that increased intestinal permeability, known as leaky gut syndrome may be an essential first step toward autoimmune disease. (19)

35.  The fourth most prevalent mineral in the body, MSM (Methylsulfonylmethane),also known as dimethyl sulfone or DMSO2, is the oxidized form of dimethyl sulfoxide (DMSO), an organic sulfur compound from lignan. It’s an organic sulfur-containing compound that’s used to improve immune function, lower inflammation and help restore healthy bodily tissue. MSM is also a popular joint health supplement.  (25)

36.  MSM / organic sulfur works like chelation therapy does, because of its molecular structure it readily bonds with most other chemicals; and thus removes heavy metals and other toxins from the body. as a chelating agent, it should be taken at least 30 minutes before or after any medication or vitamin/mineral/supplement, otherwise, it will simply absorb your medication / vitamin / mineral and you will not benefit much from the MSM or your medication / supplements (26)

37.  Glutathione and its related enzymes are our most prolific antioxidants because, in addition to directly scavenging free radicals, they also reactivate other antioxidants. It also plays crucial roles in the immune response, DNA repair, and the detoxification process that neutralizes drugs, chemicals, radiation, metabolic wastes, and other toxins and carcinogens. (23)

 38.  Research suggests that the “sleep hormone” melatonin boosts glutathione status, by stimulating production of the antioxidant enzyme glutathione peroxidase. (23)

39.   The National Institutes Of Health pubmed article of August 2015 states that The Trace mineral Boron  has been proven to be an important trace mineral because it (1) is essential for the growth and maintenance of bone; (2) greatly improves wound healing; (3) beneficially impacts the body's use of estrogen, testosterone, and vitamin D; (4) boosts magnesium absorption; (5) reduces levels of inflammatory biomarkers, such as high-sensitivity C-reactive protein (hs-CRP) and tumor necrosis factor a (TNF-a); (6) raises levels of antioxidant enzymes, such as superoxide dismutase (SOD), catalase, and glutathione peroxidase;  (24)

 40.  Borax is an inexpensive method of getting boron. It is used worldwide in many various industrial applications. It also has a long history of being used as a folk remedy, though it has not been through the rigorous FDA approval process.  Though it is probably safe for ingestion, those people who would like to get the known health benefits without worry can obtain the same level of suggested 3 mg daily use by taking Concentrace Trace Mineral Drops which has 1 mg per serving and take 3X per day. 

41.  Colloidal silver.  According to Dr. Robert O. Becker, M.D., the noted surgeon from Syracuse Medical University, surgical wounds treated with silver heal faster and better than those not treated with silver.  He writes: “Healing rates in wounds are significantly accelerated and are accompanied by enhanced healing of the bone, soft tissue, nerve, and skin, with replacement of missing tissues by histologically normal tissues.  The responsible agent for these cellular effects is believed to be the electrically generated silver ion."  (27)

42.  Colloidal Silver.  Robert O. Becker, MD, says that colloidal silver stimulates healing in the skin and other soft tissues. (28)

43.  Soft Tissues of the human body include tendons, ligaments, fascia, skin, fibrous tissues, fat, and synovial membranes (which are connective tissue), and muscles, nerves and blood vessels (which are not connective tissue)

44.  The Labia are made up of fat, and skin of course.  

45.  Research has shown that castor oil treats skin infections & lowers constipation, but more importantly it supports the immune system. Castor oil is capable of increasing white blood cells and the count of T-11 cells (a type of special white blood cells that act like antibodies) produced within the body’s lymphocytes that help kill viruses, fungi, bacteria and cancer cells.  Castor oil has been prized for its skin-healing, digestive-soothing, antibacterial properties and is commonly used in traditional Ayurvedic medicine practices. (30)

 

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  • Posted

    Nancy. thank you for sharing all your hard work. I found your research and information set out so well that I  did consider it worth printing and giving to my doc to read. However I normally don't even engage docs in conversation about LS.

     It is a fact though that they learn from us and we learn from each other so thank you again.

     Must ask for a thyroid test and up my vit D pills at least.

     Shall ask my Indian friend  about castor oil usage there but back in the forties my mother used to give each of us children a teaspoon of it  to swallow once a week, followed immediately by a small lump of butter dipped in castor sugar to take away the horrible taste!

    • Posted

      WOW Jeepers!

      that's really cool about being raised with a teaspoon of castor oil... now what is castor sugar? smiles. 

      Thank you for your kind words. As we speak I AM working on an update to that first effort and also a set of statements re; the imbalanced hormones aspect to LS.  I've really almost gone overboard... ah, well NO, we NEED to fix this stuff ourselves until indeed just as you say, we can be our docs teachers just as much as they ours.   

      BY the by, IF you want the reference links just use that mail symbol to send me a private message and I'll shoot you the word doc on that. if your own doc might be interested.  I tried to use almost hundred percent M.D., Medical Organizations, N.D.s etc...  a few references are from Chiropractors, but they also had CN after their names (Clinical Nutrition).

      Cheers, Nancy in North Carolina, USA age 72

      Oh, I only remember being given a teaspoon of Vitamin B I think it has so much sugar in the syrup i became "addicted" for 70 years! 

       

  • Posted

    Thank you Nancy KB,

    newly diagnosed LS after horrid itchy, white scaly appearance of labia. Originally thought to be reaction from oral antibiotic. Honorific experience and biopsy. Then auto immune dermatologist thought was psoriasis as I have been diagnosed with that a year earlier. Have gluten sensitivity, dairy intolerance (new in last 5 years). Post menopause by 3 years and I would guess the hormone changes Definately have a role in this disease.

    Started clobetasol ointment. Just reading about borax bath ? Organic caster oil to use? 

    Feels much better with clobetasol .... initially just used lidocaine gel to just tolerate the itch and CRAZY discomfort. What a scare. !!!

    Thank you for information, gives me hope to feel/ look more normal.

    cami

  • Posted

    Just wow Nancy and a HUGE thank you!!! I cannot afford the clob either. I got my GP to write me a script for it but when I went to get it filled it was about $200.00 so I walked out and said forget it. I have had the flu and I've been on antibiotics twice now which only makes bad matters worse. I've had to take Dyfulcan 4 times already to fight the yeast. I will certainly start taking a vitamin D-3 supplement! I have not had a biopsy done but was diagnosed about 3 years ago by my local health clinic. My LS has got worse over the years. I haven't been able to have intercourse with my dear hubby in years. So sad for both of us cry but it is just too painful. I have tried the Triamcinolone Cream (a much cheaper steroid) which doesn't help much at all. I do the borax spray every evening before bedtime. Anyway loads of great information here and I sincerely thank you for your time and effort. I am post-menopausal and I had just about given up all hope of ever getting any better. All of you gals are such a great inspiration!!! Gotta try and find some castor oil... Can you put colloidal silver directly on your skin?   

    • Posted

      Hello, Jen!  Welcome to this wonderful group. and you are quite welcome. I don't have a dear hubby to snuggle with for the last 25 years, so i had no one to notice that something was "off" down there color/shape wise. So who knows how long this LS can hang out before it does the itch bit.  

      Anywho, so sorry about the flu.. but guess what?  I recently learned that 40,000 units of Vitamin D can stop the flu in it's tracks! now we've really gotta remember that MAGNESIUM and Boron, VIT K2 are also needed by Vit D to do it job and to not outbalance other parts of our biochemistry.  

      Honey, I've read of women here who have been able to return to sex, so don't give up hope. read, read.  and, if they allow my most recent listing of nutritional supplements post to go through soon, you'll have much more to choose to do to heal yourself.  IT's taken me 2 solid weeks away from work to research the nutrition and biochemistry to write this upcoming portion up, so i Hope they do. 

      Oh, ans yes, colloidal silver is safe mixed with castor oil, I've tried it both straight and mixed with oil, but I think it's power is in ingesting it diluted in water.  But my suggestion would be to concentrate on using the boron in water instead first... or as well.  I'm of the opinion to throw the whole kitchen sink of nutrition at this thing. Some of the women here are of a mind to try only one cream at a time as far as the external comfort goes.  I don't do that either. I am not trying to do the science verification for the researchers, I am working to get WELL.   In fact we don't need to do verification; it's already done. many blessings, 

    • Posted

      Hi Jen,  I use castor oil every day and it pretty much has taken away the itch,  I use the clob sparingly and only when the itch is unbearable, which it does from time to time.  I still have white patches and am concerned with fusing.  Like you, sex/intercourse is impossible, but intimacy on a different level can't be ruled out.  There is something you might consider and that is vaginal dialators which come in a package of different sizes.  Could be fun to do with your husband.  I am doubling up with D3 and modifying my diet to see if that helps.  

      Good luck with it all.  It's a relief to know that I'm not alone in this perculiar and disruptive disorder.

       

    • Posted

      Are you taking the boron/borax internally? I know you can get the boron in trace minerals in some multivitamin/mineral supplements. I am lost on some of these supplements such as vitamin k2! I know some people who dilute the borax in water and take it. I however have always been too scared to try it. I would love to know if it helps/works??? I do know the borax spritz and sitz baths help sooth mine tremendously and it is something I will do for life! 
    • Posted

      HI Jen  - yes, I absolutely take it internally. the amount is less that the amount of salt you probably put on your breakfast eggs. I read up on this boron/borax "debate" and for myself I've come to the conclusion that it is safe in the dilute form that we have read about: there are SO many raves of it helping so many issues on lots of sites. I also love to have a hot bath in the evening often ever before this LS. so now I ad the borax&baking soda, but I"m pretty sure that the diet changes and nutrition that effect the body from within are the real healing agents.  

      Oh, the K2... I had to go look for that as well. I finally just ordered liquid Vegan Vitamin D with K2 drops from Amazon that i like the write upon the best. 

    • Posted

      Yes, I agree.  Also remember that it is best to have two or three different oils/creams to use because LS likes variation and often when you just use the same oil your body rejects it after a while..its weird but that has happened to a lot of folk on here.
    • Posted

      Really? thanks, Guppy, I hadn't thought of that, but it makes sense.  I"ve been using castor oil and coconut oil. Doyo have a third recommendation to add to the mix? 

    • Posted

      If you can get hold of Emu oil thats a very good one.  You might have to get it online.
    • Posted

      Thanks for the advice Susan! I too am upping my intake of vitamin D! I have heard of the dilators although I've never tried them. I do all I can to keep my hubby satisfied however he is still a very virile man and it breaks my heart that we can't have natural intercourse. I feel like such a failure as a wife sometimes. cry I never dreamed this would be happening to us. We are not spring chickens rolleyes but we are still very much in love. I've never had any children so I have always been very small and now with this affecting perineum I am smaller than ever and tear so easily. But I try my best to put on my happy face and deal with things the best I know how. The LS forum and the one on borax has been a huge help and I thank each of you for sharing your stories, your tips and insight! Healing blessings to all!

  • Posted

    Hi Nancy K B

    I’m brand new to this site but not to LS. All your research and info has given me  hope for a bit more self help with this rotten LS. 

    70 years old live in Australia, and have had this for about 9 years. Have used a couple of dr prescribed ointments fairly regularly. Seeing a gyn annually and  10 days ago had 4 biopsies and excision of a lesion. Feel worried waiting for results, and have been feeling obsessed about the disease without any extra usable info. Just the dr stuff. I want to be more proactive and realize your research might be so helpful Thank you !!

     I still have stitches and wounds just healing, a bit sore. Have only in last couple of weeks told a couple of friends about my problems ‘down there’ without actually naming it. Silly I guess, but my fusing and loss down there feels so private.   My husband knows of course, but I don’t think he really understands the degree or longevity of this. My fault probably, I didn’t like to labour the point of what feels like a failure. My head knows this but my heart doesn’t. 

    Oh well, cheerful enough most of the time as I have good distractions and I try to stay positive. Except  it’s hard when I wake at 3am. I guess lots of us know this feeling! 

    Anyway, a bit of a ramble there, but it feels good to know I’m not really alone with this? That other women are coping and sharing too.  Hugs to every one of you. 

  • Posted

    Hi Nancy K B

    I’m brand new to this site but not to LS. All your wonderful research and info has given me  hope with this rotten LS.  So a huge thank you for sharing!

    I’m a 70 years old Australian and have had this for about 9 years. Have used a couple of dr prescribed steroid ointments fairly regularly. Seeing a gyn annually.  But still needed  4 biopsies and excision of a lesion 10 days ago. Vulva sore and itchy like never before, and multicoloured patches Feel worried waiting for results, and have been obsessing about the disease without knowing what was best info. Just the gyn advice and he’s a surgeon too, both good and bad perhaps. In future I want to be more proactive- your research might be so helpful Thank you !!

     I still have stitches and wounds just healing from 10 days ago, so a bit sore. Managing ok just washing frequently with squirt bottle of warm water. Have only in last couple of weeks told a couple of friends about my problems ‘down there’ without actually naming it. Silly I guess, but my fusing and loss down there feels so private.   My husband knows of course, but I don’t think he really understands the degree or longevity of this. My fault probably, I didn’t like to labour the point of what feels like a failure. My head knows this is silly but my heart doesn’t. 

    Oh well, cheerful enough most of the time as I have good distractions and I try to stay positive. Except  it’s hard when I wake at 3am. I guess lots of us know this feeling! 

    Anyway, a bit of a ramble there, but it feels good to know I’m not really alone with this? That other women are coping and sharing too.  Hugs to every one of you. 

    I’d love to hear how others healed after biopsies/excision. Thanks gals. 

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