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

    THANk you for this! I have often wondered if we should start a website so that we can better organize and categorize information, since it gets lost in these conversations as time goes by. 

    There’s so much to know and it’s hard when you are new to this to find all the info you need quickly and easily n

    Do you know if castor oil should be applied topically or Injested?

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    • Posted

      THanks Elle!  YES.. indeed. This made me crazy for two weeks to keep following each conversation on here and then follow the trail to different websites each with more and different information. This list is my crossed-eyed compilation of the best of what i could interpret.  Each of us should really become our own experts.  So I do advise anyone reading this list to copy paste a sentence from each item and find more about each subset/keyword and make it your own.  Then become your own doctor, AND teach your live doctor to help you the best that they can. 

      So far, Elle, I have only used castor oil externally, but apparently it is well known and used extensively internally as well - I mostly see reference to relieving constipation, but by all means check out those keywords and see if there is something that would help your situation internally.

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    • Posted

      I too have been thinking about making a website. There is so much information on different message boards and it is so poorly organized. I think leaving the doctor with a tube of steroid and a life sentence on a disease that has so little known about it drives us all MAD! The only advocates we have are ourselves, so I do think that organization is key for sanities sake. If a website is made I would love to help in any way I can.

      Cheers!

      Ann

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    • Posted

      Dear Starlight Ann!  How lovely! Do you know how to do websites?  I work on wordpress but I'm swamped with my "work" i.e. other passions that don't make a dime- yet, grin. What have you got in mind?   I totally agree with you and others who realize that the lack of organization is driving us nuts... The reason I would do a website would start with simply gathering all the LIVE LINKS to the data that I've found so far, which we are not allowed to present here in an otherwise excellent spot.  by the by, The 45 points I've gathered so far make a GENERAL outline for ANY autoimmune disease Protocol - the next posting I can post what I've found that is specific for the hormone LS help.  

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    • Posted

      incould probably build us a basic website using a wordpress template or something else. It would be a great collaborative team effort. 

      Swamped with work this week but I could try to get started next week. I didn’t want to start if there was no interest! It needs to be populated with all of our stories, experiences, advice, ideas etc 

      Should we start a separate thread for the website?

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    • Posted

      HI there KC - welcome to our group. Thank you very much. This has been quite a journey the last 11 months, indeed!

      Ah.. well, my article that you found is one of several and you are welcome to do a copy paste into your own Word doc. The others you can also find by clicking on my name and scrolling down on the right side you'll see another one. I"m not sure if the aloe vera gel with tumeric essential oil drops that I learned from my health food store is listed on these docs that I made earlier in the year. but that helps as well. blessings, I feel so much better by giving up sugar and dairy along with the whole list of autoimmune nutritional protocol based on high vitamin D3 and it's cofactors. Nancy, age 72, North Carolina, U.S.

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  • Posted

    Wow, Nancy you're a star ! Thank you so so much for taking the time and trouble to share this info with us. Castor oil with be on the menu from now on. I already use a magnesium oil which I spray on my skin and started trained bit D a month ago.

    Thanks again x

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  • Posted

    Thank you so much for taking the time to post all this very interesting info. I have used a zinc & castor oil cream morning and evening after washing with Dermol 500 for the last two months or so and I am over the moon to say my LS is about 90% better since this new regime. Also I use vagifem pessaries twice a week. I will definitely now try the vitamin D supplements too and also a boron supplement or the drops you have mentioned. Thank you again. 

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    • Posted

      SO glad this info is encouraging for you Jill. 

      Please do tell me more about what this Dermol is? Oh, I just looked it up.  a moisturizer and soap in one?  My itch is mostly gone with the vitamin D and castor oil... but my skin is not back to pink or smoothness, are you saying it has healed the skin? and taken away the white plaques?  Thanks

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    • Posted

      Sorry for my late answer Nancy, I have only just seen your reply - thought I would have had an email notification of any replies, hope I haven’t missed any more and people think I’m being ignorant 😳. Anyway, yes the dermol 500 is a wash and a moisturiser too - I have used it for both but recently found the zinc & castor oil so much better than anything else as a moisturiser. It seems to be very slightly oily and as such tends to stay on the skin a few hours. I have never had itching but only soreness. The cream has stopped me being sore but the white patch I have is still there. I’m not sure if that will ever go away. I still use the dermovate as a maintenance just very very thinly twice a week. I am wondering whether to try the borax soak to see if that gets the skin back to normal appearance wise? I have bought myself a sitz bath - it’s so handy! No excuses for laying in a bath half an hour at a time whilst the water is getting cold! 

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