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)
20 likes, 96 replies
Guppy007 Nancy_K_B
Posted
Hi Nancy, thanks for posting your thoughts, they are interesting.
I have known for some time that Vitamin D was an important supplement to take. I got that info from the IBD forums but have been unable to take it due to reacting to it every time. However, I have ordered some drops in the hope that might be the answer. It's probably wise to mention that before people start taking a Vit D supplement that they get their levels tested.
Nancy_K_B Guppy007
Posted
Good morning, Guppy (smiles - well it is here in east coast united states - I LOVE this international forum, english speaking).
Sorry to hear about you being the 1 out of about 300 who have trouble with D supplements, I hope you find a solution, maybe a Naturopath might have some suggestions?
Anyway, I'd like to politely disagree with your comment about getting tested before supplementing with D. From my integrative doctors comments about the worldwide EPIDEMIC of vitamin D and his knowledge that Vitamin D deficiency is implicated in ALL AUTOIMMUNE diseases, I think we can safely infer that taking D NOW, and then getting tested in two or 3 months is perfectly safe.
I thought about your comment for a couple days while busy with work, and went looking for how long it takes a person to move from say, a level of D at 20 ng/dl (below 30, minimal health) to 60 ng/dl the level I saw from several sites that is needed to clear disease. one medical site I found told that it took, one example 4 MONTHS just to get from 20 to 40. Now that is only one person and one website.. but it sure tells a tale. Oh! another site, mentioned generally taking 2 YEARS to raise the health level.
Guppy, I think any problems that some people or websites mention are going to have a lot to do with forgetting to take the Co-Factors that are needed to keep our system in homeostatic balance. MAGNESIUM! etc that I found, and listed.
If you don't have access to an integrative physician who knows the nutrition to help you with the Vit D issue I'll be happy to ask my Dr. bailey in April when I see him next if he knows a work around for that sensitivity issue.
Guppy007 Nancy_K_B
Posted
Nancy_K_B Guppy007
Posted
good morning, guppy , sorry i just saw this note...
So what I've learned over time and more recently from my Doc who knows about thyroid antibodies and vitamin D is that IF a person has that (the TPO test) no amount of walking outside will help get D into our skin. the other part is that depending how far North (or South) of the equator also determines how much D we can actually get. Are you in England? if so t'aint happening.. I live in North Carolina U.S. about the 35th parallel it's even hard apparently to do the beach party time enough to get useful D. supposedly... obviously some people are perfectly healthy with the amount they get here ? so who knows.
Guppy007 Nancy_K_B
Posted
Morning, I'm English but I'm living in Costa Rica where the sun always shines lol!! Anyway once my Vitamin D drops arrive I will start taking them and then I will at least know that I am getting some vitamin D for sure.
Bridge_of_Sighs Guppy007
Posted
I have two, very fair, friends who have always covered up in the sun and now, as adults have severe vitamin D deficiencies. They were both told, by different doctors, that the standard advice was to expose forearms to the midday sun for 20 mins every day in summer and take a supplement in winter (I don't know how much). Both are much better, though one was recently diagnosed as coeliac too. This is in the UK.
sarb73328 Bridge_of_Sighs
Posted
Starlight8 Nancy_K_B
Posted
Nancy,
Thank you for all the hard work you put into this list! It helps so much that it is listed in one area. These message boards are so long that you can spend days reading and digging to connect the dots for wellness.
I can't wait to see your future posts!
God Bless!
Ann
Nancy_K_B Starlight8
Posted
j02359 Nancy_K_B
Posted
Thank you Nancy - this is just the spur I need to begin taking more responsibility for my health and in particular the LS. I've tended to put on the clob and try not to think about it apart from that, in the past. But no longer! Huge thank you.
Nancy_K_B j02359
Posted
Oh J, thank YOU! You know what, I haven't yet asked any of you folks who have had this more than the two months I've been aware or this LS, and who are taking Clobestol as your main remedy - - - IS it a healing remedy? I chose not to fill the subscription I was given, but now I'm wondering. ? The suplemtns i'm taking got the itch and pain right down very fast... BUT horrors, I recently discovered that the white that was gone for a few weeks, is now back and not gone and the skin isn't back to pink...
J02359 does the Clob make everything all nice and pretty again? THANKS anyone who can shed like on this part.
Guppy007 Nancy_K_B
Posted
Nancy, nobody wants to use the steroid on their Vjay but when you are flaring and your Vjay is totally white its important to get that flare under control and that's when Clob does its job...if you use it twice a day for perhaps a week or more it should get rid of the white plaques of skin and then after that you can always look at other alternative ways to keep things good down there...a lot of women swear by borax. Untreated LS is not a good idea.
j02359 Nancy_K_B
Posted
Yes, the clob gets rid of the white patches. We all vary and one's age makes a huge difference. When younger I could use the clob and then have gaps. Now I need to use it a few times a week in order to keep the disease under control.
deb09833 Nancy_K_B
Posted
Please do not be concerned about the Clobetesol. I Used it for five years before everything got under control. I know it doesn’t work for everyone but it worked for me and yes it does thin your skin but it can only thin it so much. As I have said before...my finger is just fine! Also everything sort of looked normal again and pink!😊 It is much more important to get it under control. I do believe I was too scared to stop it and it wasn’t until I started changing my diet and mixing up spritz with salt/water and Epsom salts/water, vitamin E capsules and Paw Paw ointment. I had to stop working as the stress was killing me and it gave me an opportunity to get more involved in my health.
Nancy_K_B Guppy007
Posted
Oh my gosh, guppy!
I just got up and started reading everyone's helpful notes on this and sad sad sad...
you got me convinced now.. and I called my pharmacy just now to see if the order was still waiting there for me.. and they told me that it is not covered by my medicaid insurance?? it costs $180!
that is a quarter of my whole friggin pitiful social security.
NOW I'm screwed. all m work is doing part of the job but if the steroid is really required along with the nutrition.... argh.
Well, the pharmacy said they could fax some papers over to the gynecologist to see if she can get it approved? or something?
a bit of hope in a sea of fascism hitting the US so hard I just don't know what anyone in the medicaid offices will approve on any one day.. it's come to that bad I keep hearing...
Guppy007 Nancy_K_B
Posted
I think thats a disgraceful price. Because you need immediate relief the clob is the best bet. I think with your mindset you will only need to use it probably whilst you get out of this flare..diet modification is the way to go for sure but most people aren't prepared to do that which is why they continue to suffer in my honest opinion.
Nancy_K_B Guppy007
Posted
and YES, I recently wrote back to marci today re: ready to do the whole restrictive diet thing... and esp. after she commented that afterwards at some point there is hope that we can introduce other foods back and see how it goes.
maryella Nancy_K_B
Posted
My pharmacy told me about the same price for my latest RX of Clob and I asked if they would reduce the amount, bringing it to around $40...still considering since I still have some left in my old tube. The old tube didn't cost near that amount, so this proves the manufacturer is spiking their prices. It's taken me over 3 or 4 year to use the older Rx which I think was a 30 gram tube so the smaller tube of 15 grams should last a good while so I'll get it filled bc it's the only thing that works when I have a flare up. But now that I have learned all this info on diet, treatment and supplements, I may not have anymore huge flare ups if I follow everything I've learned.
Guppy007 Nancy_K_B
Posted
Nancy_K_B Guppy007
Posted
OH! you mean eliminate as slowly as reintroducing later? well that's an idea. So we have to ask Marci - did you eliminate RICE as well as the other grains? I'd been looking some of this up a few days ago and found that rice is NOT a gluten food, right?
Guppy007 Nancy_K_B
Posted
Nancy, Rice is gluten free. What I was saying is that it is important to eliminate one food item at a time otherwise you won't know what is the culprit, what is causing you problems. Sometimes when people stop eating gluten it is like BINGO! they get can get relief really quickly and it may be that is all they need to do to lead a LS flare free life. Diet modification is about finding out what works for you and it is not something to be rushed at, it takes time. I mentioned on another post that I am Gluten, salicylate, lactose, histamine and sulfite intolerance with multiple food allergies and so my diet is horribly restrictive and not through choice!! but the good news is that because it is so restrictive its stopped me from having LS flare ups.
Bridge_of_Sighs Nancy_K_B
Posted
fran24104 Bridge_of_Sighs
Posted
I did the same but my recent gyny appointment was not encouraging. I didn't mention the daily borax I'd been using, but the gyny didn't like the look of things down there. More fusing; white patches and some unexplainable yellow lumps. She has told me to use clob, once per day and will see me again in two months with a biopsy (again) if no improvement. She did show some concern. Since I was itch and pain free I hadn't checked myself. I am taking her advice for the moment and will pay more attention in future. I am stopping the borax although I may go back to it.
susan43705 Guppy007
Posted
This is sound advice. I think the clobestol is the only way to control a nasty flareup, then go into alternative daily treatment. That's what I do.
Bridge_of_Sighs susan43705
Posted
I agree, I'm having a three week burst of steroid once a day at the moment. I've been enjoying a glass of wine in the evenings, sigh! Three weeks seems to work for me and then back to the borax on alternate days. I do check regularly though, once or twice a week.
Guppy007 Bridge_of_Sighs
Posted
Nancy_K_B Bridge_of_Sighs
Posted
YES YES I am defiintiely doing the Borax AND the VItmin D AND MAGNESIUM etc etc.
Sorry it's taken me so long gals, I'm still working up a I hope fabulous nutrtional protocol for us all to use. GOtta go do laundry beofer another storm comes in.. but will get back evryone where as soon as I can.