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

    Hi Nancy,

    thanks so much for collating all this information, a terrific amount of work has obviously gone into your research, I hadn't thought about using colloidal silver on my labia etc, good idea :-) and definitely worth a try. Thanks :-)

     

  • Posted

    Thank you for this - it is so informative and organized. Just what we all need. - Sarb

     

  • Posted

    Hi again, I'd definitely be interested to see your daily protocol sheet (as I'm sure would others.)  Thank you so much for all of this.  Every best wish, J.

    • Posted

      THANKS! .. I'm still tweaking it but will get it up soon. I've built it in Excel which I love, love love for it's organizing ability.  So it won't look so pretty and color coded once I convert it to a Word doc. (I use, but have a love/hate relationship to Word or Tables in Word to be exact (or even tabs which don't seem to stay in nice columns) .. so give me a few days folks.  LUV ya all. 

  • Posted

    Hi Nancy,

       I too have been making a protocol sheet. I wanted to give it to you so that you could compare and add things that I have that you may not. Hopefully, others can add to the list so we can make a master protocol of what to do for LS. Thanks for all of your hard work! If you need any help researching let me know smile

    1.Alter your diet - no sugar, gluten, dairy. Look up Paleo diet, Autoimmune Protocol Diet, Leaky Gut diet.

    2. Stop using all soap on your privates- your privates only need to be gently washed with water.

    3. Rinse with water after using the toilet and make sure it is fully dry.

    4. Use a good moisturizer/ barrier ointment. There are a ton that have been recommended; coconut oil, emu oil, Lanolin, castor oil, olive oil, shea butter....this is just a couple I could think of. These not only provide moisture but help protect the sensitive skin from harsh urine and feces that cause irritation.

    5. Do sitz baths. There are many recommendations to put in your water: Borax, Epsom salt, baking soda, apple cider vinegar. Try them and see what works best for you. Use only 1 at a time.

    6. Take care of your anus! LS isn’t just about one area. Many who suffer from LS have increased instances of hemorrhoids and thinned skin around our anus. So try to keep it clean by rinsing after bowel movements, eating plenty of fiber and making sure to put a good barrier ointment on it to protect the delicate skin.

    7. Try eliminating stress and exercising more. Stress triggers LS flares because it produces cortisol. Cortisol is a hormone that lowers immune function and increases inflammation, which then increases the body's reaction to attack. Try meditation or walking for at least 30 minutes a day to help deal with stress.

    8. Look at all the products you put on or into your body. Try eliminating all chemicals and processed foods out of your everyday life and changing to natural products. This includes all cleaners, lotions, toothpaste, soaps, perfumes, deodorants, etc.) Make sure to read the labels before buying. Sometimes products are labeled “natural” and then you see a list of unnatural chemicals on the back.

    9.Stay hydrated, your body needs fluids to carry toxins out of the body, regenerate cells, keep things lubricated and keep skin supple. Not having enough water in your system slows the healing process. Google how much water you should be getting every day, there are many calculators out there.

    10. Start taking a good multivitamin. Next time you see your Doctor ask him to check your vitamin levels, especially vitamin D3.

    11. Start a good probiotic and prebiotic. You can kill 2 birds with one stone by eating fermented foods like sauerkraut, kimchi, Curtido, kefir, yogurt.  I make my own yogurt and curtido (Salvadorean sauerkraut). You can visit your library for cookbooks on the subject.

    12. Get good sleep. If we don’t get enough shut eye, our bodies cannot heal properly. During a flare it is imperative to take it easy so your body can focus on getting your body well.

    13. Start a wellness journal. A journal can help you track symptoms and examine what could be causing inflammation. I think the journal can be the key to finding what works for us individually. Let your inner scientist out, and make your body the subject because you are the only one that has the answers that your body is needing.  Here is what you can put in your journal:

    Every day write down:

    What you eat and drink (include medicines and vitamins)

    Every product that touches your body (soap, laundry detergent, toothpaste, lotions...ect.)

    Your stress level.

    How much sleep you are getting.

    How much exercise you are getting.

    Describe how your body feels that day. (any aches, flares, sluggish, write down all symptoms from your entire body).

    Either take pictures or write a description of your LS areas so you can track if the LS is getting worse. (Can be done once a week).

    14. Wear loose, breathable clothing and no underwear, especially during a flare!

    15. During menstruation stop using synthetic pads and tampons. Use a menstrual cup or homemade cloth pads.

    16.. Staying positive. There have been studies that have shown the effects our mind has on our bodies. Our minds have the ability to heal themselves, so make it a habit to mentally picture your body getting better. I do this every night before I fall asleep hoping my body will listen and heal those areas while I rest.

     

    • Posted

      Thanks so much for the info.  It appears I joined this forum just in time to receive all this helpful info from you and Nancy.  I've had LS for years and none of my medical professionals have suggested trying any of the remedies I've found here except for prescribing Clob.  It's been an eye opening experience and a complete lifestyle change for me.  Wonderful to know I'm not alone dealing with this problem.  Please keep the info coming!!!

    • Posted

      Cool, Ann Starlight...

      I've got lots more already added to my PREMISE List that I haven't put up yet.

      Your list seems mostly part of the PROTOCOL List for Daily actionable items as Susan phrased it.  So it will be fun to intersperse your comments with my Daily Protocol List that is based on daily time of day nutrition "action" for a combined TO DO LIST.  very cool. 

      I appreciate you offer to do some of the online literature search. and I'l like t take you upon that I have several items that need more verification. I'm busy today, but will get back with you soon. 

      SMILEs - it seems we are hatching a plan to create  website. You got me going and I already looked up what Wordpress might offer for specialized "Themes" for Health and Wellness subject to make it eas(ier) to Fill in the blanks etc.   All of us here can get in on the suggestions to make it useful for all our sister (and brothers) of LS.   

      Does anyone posting here also know how to do Wordpress and have a bit of time to be a co admin to build it? I can host it since I have an unlimited godaddy plan already, but the time is my prob at the moment. 

        

    • Posted

      You're very welcome! I have been compiling a list for a while as I read through different forums. Hopefully, this will turn into a group project where we can come and add to a master list. The more knowledge we compile, the more help there will be for those in the future.

      Ann

    • Posted

      I am glad you have found us! This is the best forum I have found so far. Everyone is so caring!

       Welcome home!

    • Posted

      17. Ladies don't forget to gently pull back your clitoral hood and labia every day. Uncircumcised Gentlemen- Pull back your penis everyday as well. I believe certain areas tend to fuse because our skin is raw and is pushed together all day long, so when it heals, it heals back together. So, when you are putting moisturizer on or are in the shower take a few minutes to gently massage all these areas so you can keep them from further fusing.

    • Posted

      Good advice..I think that and using dilators go towards keeping things looking and feeling normal.
    • Posted

      Dear Starlight8,

      Thank you so much for your time, effort and concern! Great info from both you and Nancy...

      Very well put together and organized! You gals help give me hope and inspiration. There are so many times I feel completely helpless and hopeless and depressed. At least I know I am not alone...

      Thanks again!

  • Posted

    Thank you Nancy for this list.  It paints a clear picture of what we're up against.  Also helps how to combat this mean disease successfully.  

    ?Missed the coconut oil on your list.  Is there a reason?   

    • Posted

      AH! thanks Hanny - and no, not forgotten; coconut oil is absolutely on my daily protocol list to come shortly... I was just listing the science behind everything I could to paint the broad picture with...  There's more to this whole life health and healing bit I'll post as wehN i get the second set together. The more we really grok the fullness of realizing that this IS an autoimmune disease and WE MUST have been massively nutritionally deficient for YEARS before the realization of LS ... this is what we can share with our young sisters to safe them from this.. but we've gotta KNOW the deep etiology of it all. (and I haven't even brought up the emotional/spiritual implications of ALL the autoimmune diseases now that I realize the worldwide extent the issues.  Several women here have mentioned the need to relax and de-stress. chagrin... our current culture is killing us  - there's now way around that implication.  

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