Thrilled to find people talking about this

Melody,

First, I am so very sorry to hear you lost your husband. Another friend of mine also lost her husband recently. It's a one day at a time situation much the same as it is with LS, I'm afraid.

What lotions of soothing remedies have you tried? Have you seen Nancy's list of "helps" or findings that she has compiled? Take a look. I have my own list of findings that I posted earlier but the moderator deleted. I have a PhD and have been researching and I think Nancy has a Masters and has done a lot of research as well.

Part I

Only some of it will post so here is what will paste and I will paste the remainder in another post.

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.

biscuit

hi, did you try using the steroid in ointment form instead of cream? I was prescribed cream steroid and it irritated and burned me so badly. when I switched to the ointment I was relieved of symptoms in two days.