auto immune diet vs LS diet - or are they the same??

Hi Starlight8, thanks for your feedback. I can totally relate to so much of this. Sadly, I have learned that sugar, alcohol and white foods not only make my LS worse but they also cause my heart to race and insomnia, ibs etc. So Im off all processed or white sugar, the only "sugar" i eat is occasionally a 1/4 tsp of honey in my decaf - and since Im doing AIP i'll be off decaf soon too. The dairy and gluten Im also off. The main question mark for me is all the protein I eat. I would starve if I could not eat protein. Fortunately I stick to quality fish, chicken and turkey with occasional red meat. I think a food journal is a phenomenal idea, I plan on implementing this right away. That way I can catch any reactions and tie them to a food or drink. Im working also very hard on lowering stress. Due to my other ai condition, I actually am taking a leave of absence from work. Im feeling gratitude that I am able to do this and that I have the support of my husband in this process. Thanks again.

Hi beverly52803. Unfortunately I do not really trust doctors, or obgyns even at the best teaching colleges, like UCSF. Their only line of treatment is clobetasol or on occasion they will recommend vaseline. They dont even believe that diet plays much of a part, beyond sugar. But their approach is to treat symptoms, and that the goal is to prevent LS from getting worse. If you look at all auto immune diseases, like sjogrens, rheumatoid arthritis, diabetes, fibro, lupus etc, they are all based on the tissue in the body being attacked. If its bacteria causing the auto immune reaction (like b. bulgdorferi from lyme for example) or if its the immune system attacking itself, this is the definition of auto immune. And we know that LS is the tissue being actively or passively attacked and changing over time. If we can get to the source, maybe we can stop the auto immune process. I was diagnosed also with lyme and many lyme literate doctors have patients who have gone into remission when that bacteria or other co infection is treated . In any case I guess the jury is still out.

BEVERLY 52- As of March 2012, Lichen sclerosus has been confirmed to be an autoimmune as reported in a National Institute of Health pubmed document. It generally occurs hand in hand with other autoimmune disorders such as HASHIMOTO's or LUPUS, and that is why it is imperative that we re-vamp our diets, keep food journals and take our supplements per NB AUTOMUNE PROTOCOL. I currently take Daily:

Probiotic

Vit D 4, 000ui

Vit K2 100mcg

Vit A 10,000 iu

Boron 3 mg

Selenium 200mcg

vitamin c 2000mg

Tumeric 450 mg

Monolaurin 600 mg

Zinc 50 mg

Glutamine 500 mg

Vitamin B12 1000 mcg

Apple cider tabs 600 mg

Omega-3 450 mg

D- Mannose 600mg

Grapefruit seed 125 mg

Ashwangara Root ( sporadic) 2000 mg

Aloe vera juice 4 oz

Multi vitamin - Ultra formula

2 per day

Nighttime:

Magnesium 800mg

Calcium 1000 mg

I eat very little white sugar ( can't stand the taste of it now), limit my dairy to hard cheeses ( less lactose), I use coconut milk in my coffee, I eat limited whole grains ( high in oxalates- causes kidney stones in me), no potatoes, limit my high- oxalate foods to 1x per day ( SPINACH), avoid most nightshades ( high in leptin), no corn ( too modified to be healthy), and avoid all pre- packages foods. I try to be UNCURED meats, and organic chicken. I hv been lucky in not having any yeast infections ( take D mannose), hv not had a recurrence of MONO ( take MONOLAURIN), so I have avoided antibiotics that DESTROY your gut for over a year with a one week dose. It's all about balance. 100% organic cotton tampons and pantyliners, bathe with cetaphil, 100% cotton panties, no tight pants ( especially with seams across sensitive areas), more skirts to let everything breathe, and hv been " in remission since OCTOBER).

TRIAL and ERROR, JOURNAL, DE- stress!

good luck to you! 😃

Hi Karen, I can't find that NIH document. Can you try to send a link? Maybe as a PM so it doesn't get blocked. Funny, I just had a conversation with a gynecologist today who really seems to know her stuff and she reiterated that a disease is not labeled as AI until antibodies for that disease are found in the bloodstream and none have been found yet for LS.

BTW, the one new supplement I'd ordered & forgot to mention is Milk Thistle, but I have since read it may block estrogen which certainly wouldn't be wise. Will have to check that out.

Karen23320 you are a rock star. Im pretty much with you on what I dont eat, as well as what I do. just curious about the hi oxilates, fortunately I dont eat too much spinach, what else? Ive heard Monolaurin is great also for lyme, which I have. What does it do? My poor LS has continued and now I have sjogrens (dry mouth and eyes), then I was tested pos. for lyme. So its possible the bacteria has been the auto immune trigger. Not sure.

Think milk thistle may block oral estrogen. Don't think it blocks topical estrogen because topical does not get into your system the way oral drugs would..

Now I can't find that info re estrogen. I ordered some and have forgotten why! Apparently, it's quite a plant! This time I have come up with:

Milk thistle is taken by mouth most often for liver disorders, including liver damage caused by chemicals, alcohol, and chemotherapy, as well as liver damage caused by Amanita phalloides (death cap) mushroom poisoning, nonalcoholic fatty liver disease, chronic inflammatory liver disease, cirrhosis of the liver, and chronic hepatitis.

Milk thistle is also taken by mouth for heartburn (dyspepsia), inflammatory bowel disease (ulcerative colitis), enlarged prostate (benign prostatic hyperplasia), a blood disorder called beta-thalassemia, and infertility.

Some people also take milk thistle by mouth for diabetes, kidney damage caused by diabetes or contrast media use, prostate cancer, to decrease the side effects of chemotherapy and radiation, uterine complaints, increasing breast milk flow, allergy symptoms, starting menstrual flow, obsessive-compulsive disorder (OCD), Alzheimer's disease, Parkinson's disease, multiple sclerosis (MS), high cholesterol, and menopausal symptoms.

Some people apply milk thistle directly to the skin for skin toxicity caused by radiation.

The Cleveland Clinic calls it an"autoimmune disorder."

Yes, LS gets put on a lot of AI lists, but possibly because it responds to steroids. To my knowledge no one has found any antibodies specific to the disease. Don't know what else it could be other than an alien life invasion!

My doctor (the vulva skin specialist) specifically said "thought to be" an AI disease. Have also read it described as such. I would like to describe it as "gone".

Bev - "I would like to describe it as 'gone'"! YES!

the main thing we know, not just from scientific articles but also from personal stories in groups like this is that DAIRY GLUTEN and SUGAR are all big no no's with STRESS playing a huge part. Hang in there and welcome to the group

Thanks Lynn... unfortunately I love my sweets....and STRESS has always been an issue for me. 😕 but I'll definitely be working on this. 😃 Anything to get this into remission (I hope!)

Hi Debbzi1989,

I'm with you. Just recently diagnosed, along with Hashimoto's. I also have Vitiligo which is considered Autoimmune, I believe.

I too am overwhelmed. Doing lots of reading and trying to work out a route forward. My thoughts at the minute is 'baby steps'. The one thing that has stood out for me is sugar. I never had a sweet tooth until I gave up alcohol. Now I do. Think it's subsiding a bit but it will be interesting to see what a difference cutting down again makes. Also, the B12. I do take a dose but wonder if it's strong enough. I get dreadfully fatigued. If anyone has any suggestions as to dosage, I'd be grateful.

Hugs and well wishes, and has already been said, I'm here too. Nice to have a group of people you can go through this with isn't it? Let's pull each other through.

Kat - yes - I think baby steps are the way to go moving forward to avoid getting overwhelmed. I was in my head - thinking, "I need to change my diet, need supplements, need to do this, need to do that..." and pretty soon I Felt like I was going to lose it. So NOW - I'm thinking - I need to make small changes - gradually - so I don't overwhelm myself and stress myself out so bad that the LS gets worse instead of better. 😃 It's a process!

And like you said - it is very nice to have a group of people to bounce all of this around with... and get ideas/advice, etc... ❤️

Kat7201 eating a lot of sugar makes LS progress, sugar feeds cancer cells and bad bacteria. the best thing you can do is try to start by eliminating white sugar and find a replacement like fresh berries with a little honey. i have my occasional sugar binges which always set me back- makes my Ls, mood and body feel worse... so i get it, but is worth trying to help eliminate triggers -, hang in there and yes lets do this!

Deb, it really isn't that difficult if you do it slowly. It gets so you can't tolerate sweet things, white bread or most processed food. Switch to honey or just use less sugar each time. Unsweetened flavored almond milk etc works for coffee and seems sweet. Just keep working at it gradually. I've also done it for gluten, but that's tough as the alternatives aren't very tasty. Of course, it hasn't done a thing re my LS, but I figure it can't hurt. Besides, no one ever claims sugar is good for you so you're best without it.