LS diet that is working for me
Posted , 12 users are following.
I have suffered from LS for over 3 years. Took 4 specialists to finally diagnose me. Was prescribed clobetasol, hydrocortisone suppositories and told to continue my HRT. I read forums and visited other websites trying to find answers. Cutting back on sugar helped a little. I was so frustrated and ready to give up on ever feeling better. This past January my husband had watched a few documentaries on going plant based eating. I thought why not try it. So we cut out all meat, dairy and eggs. My husband lasted a week but I continued to follow the lifestyle of plant based eating because I noticed my LS symptoms were improving. But after 4 months of no meat, I felt sluggish and tired. I chose to add meat back to my diet, but only turkey and chicken that is antibiotic and hormone free. I chose to still not eat or drink any dairy and eggs. I am 6 months into it and I have not had any LS symptoms return! I stopped the clobetasol and suppositories to see if symptoms would return and so far they have not. I believe staying away from all dairy and eggs helped . I also believe eating poultry that is antibiotic and hormone free are really important to help symptoms. As long as it is cleared up I am going to continue to do what I am doing. I go back to my specialist next week and look forward to hear what she thinks and I am curious how test results will show my ph levels and white blood count to be. I can't guarantee that my symptoms won't return, but as long as it is working for me at this time, I will continue to eat this way. I wanted to share my experience in case anyone else wants to try. You have to read all ingredients on foods to watch for dairy and eggs. I am not a doctor, just a patient wanting to share my results.
1 like, 22 replies
Nancy_K_B lindajoy11
Posted
HI LindaJoy,
Thanks so much for sharing your positive experience. I too have discovered that no dairy is best as well as no red meat. I use eggs for my protein; but I don't even feel they are the best source for me anymore; it's a hard call. Recently I've been eating tempeh/soy as a protein source, which I used to be concerned about. And of course I take about 15 vitamins/supplements that I had researched are needed to build immune systems. I've found that when i lay off them for one reason or another - that my energy flags within 3 weeks.
It's great to have this community to share and get ideas from. Cheers, Nancy in Asheville, NC USA
lindajoy11 Nancy_K_B
Posted
Nancy, eggs were my source of protein before I went plant based. I feel eggs are a trigger for me too. I also get my protein from a variety of beans... navy, black beans, garbanzo. Adding the no hormone - no antibiotic poultry seems to give me the protein I lack on those days I am beaned out. My only source of supplements I take daily are a womens gummy multivitamin and a gummy vitamin D. Who knows what will cause me to get a flare up anytime in the future, but for now I plan to stay on this course as long as it is working for me. I hope you are able to find what is best for you. This forum is great to have a community to share with.
SnappyCat lindajoy11
Posted
I "know" that sugar is a trigger for me...and I sense that dairy is also. Not sure about eggs...they seem ok so far...but pretty sure about dairy.
lindajoy11 SnappyCat
Posted
I have actually been eating way too much sugar the last two months and was expecting a flare up (I am a carb and sugar nut when I am stressing). I am shocked that it has not triggered me to have my LS symptoms return. I am so thrilled to have found this community to share with. Its hard to just bring LS up to people who do not understand about it and it's definitely not a conversation that most people (even me) feel comfortable talking about. I have spoken to a few people about it, but I feel more at home on this site with people experiencing LS. I am amazed at the lack of research, yet it seems so many people are affected by LS. Its a silent disorder/disease (I am unsure what to label it) that does not seem important to doctors and researchers since its not life threatening (although it can become cancerous if not treated and watched). We need LS awareness month like other diseases/disorders have. I hope you are able to find what works best for you. Lets all keep talking and sharing!
SnappyCat lindajoy11
Posted
I'd be happy to see a pamphlet in every GYN office...
beverly52803 SnappyCat
Posted
I just looked at an old menopause handout from 2003. (I'm a packrat). Nothing in there about LS. Focus was primarily thinning bones. If there was ever a pamphlet on skin issues I don't remember seeing one. After my LS diagnosis my specialist gave me a copy of a handout created by Mid-Charlotte Dermatology which was helpful (I have posted it here), but women really need to be made aware of the existence of the disease in general.
I just contacted my dermatologist's office and was told neither he nor the female docs there dealt with gynecological issues and knew of no dermatologists who did. That sounds ridiculous to me.
Recently purchased The V Book: a Doctor's Guide to Complete Vulvovaginal Health by Eliz. Stewart, MD (who I actually saw once 20 years ago). Very informative book about every possible problem. She sees LS as a very manageable condition since the use of clobetasol began.
Maybe a skin awareness month including LS would be helpful.
Debbz1989 lindajoy11
Posted
Linda - thank you so much for sharing your experience. I just got diagnosed about a month ago - and I bought two books on LS and two other books on how to "fix" your auto immune disorder. I'm just hoping to find something that works for me to keep this at bay. 😕 I keep hearing that cutting sugar is a big help with LS - and of course I LOVE anything sweet... so that's going to be a challenge. But at this point - I'll do anything to make this better.
Thanks again! This forum has been such a huge help. 😃
beverly52803 Debbz1989
Posted
Debbz, were these books specifically on LS? Assuming the moderator won't block them, can you let us know the titles?
I've watched two authors on you tube videos, have read one of their books and trying to get thru the other one. The supplements I am taking are based on the info in the 1st book (but not at his levels). These seem to have had no effect. The 2nd book involves a LOT of diet restriction, much testing and the help of a knowledgeable practitioner. I cannot find a reasonably priced one.
I am one year into this.
beverly52803 lindajoy11
Posted
There is nothing I would like more than some kind of testing to tell me what if anything I should be avoiding which is why I have been on a search for an FM Dr. So far I've only had success finding two who work as a concierge doctors (ie, very costly). I am eating both poultry & meats that are "free of ...". I have barely eaten any sugar for years. Trying my best to go totally gluten free, but as that is the most difficult, I really want to know if I show any anti-bodies (or whatever) to it. Tried this years ago and saw no difference with my digestive system either (though I dropped weight instantly) which I didn't need to do.
Like you I most definitely require protein. Have tried lessening the amount but that never works as I literally can't think and am devoid of energy.
Eggs are the only thing I haven't cut from my diet and as I am so reliant on them for breakfasts (preferably with a little meat) I have no idea what I could eat other than avocado on awful GF toast. Have just joined a CSA, but can eat vegetables till they come out of my ears without feeling satisfied.
Yours is the 1st mention of hydrocortisone suppositories I've seen. Did you have LS internally? Thought it was only external. I had fleeting internal itch before being diagnosed, but was told there was no internal problem. A round of flagyl knocked it out for a short while and now it is mostly gone. Can only assume it is a fluctuating PH imbalance or bacteria that comes & goes. The dr. never determined its cause.
Despite responding "beautifully" to the mid strength steroid & hormone cream (for AV) the LS returned in 6 months in the form of a buzzing feeling. Am now on clob and still on the restricted diet. Without the steroid the feeling returns. Am now seriously considering platelet rich plasma injections.
Wish there was one answer for all of us.
lindajoy11 beverly52803
Posted
My doctor put me on Hydrocortisone AC 25 mg suppositories every other night for 4 weeks. These are marketed for anal usage, but she had me use them vaginally and I used the Clobetasol externally. This really helped get my flare ups under control. She then just had me on the Clobetasol as needed. I am extremely lucky to live near Chicago. I see a specialist at Northwestern Medical Center Sexual Medicine and Menopause. She has saved me, I gave her the biggest hug when we were getting it under control. I still had occasional break outs when I would cave in and eat sugar or get overly stressed. But the plant based eating seemed to help even more (doctor did not advise me to eat this way, it was my choice). I see her this Tuesday, so I am curious to see how my ph levels and white blood cell count show.
janie27576 lindajoy11
Posted
hi everyone, i have been eating eggs but have cut back on sugars, no cokes at all just water and i seem to be doing ok except a little itching once in a while, i put on Emuaid or the Aloe mix that Nancy posted here and has help me , i do take vitamins and also soak in Borax daily. just sometimes i do get depressed on the future when i get older (67) now , what if i wont be able to take care of myself anymore and i will be in pain, i just get real scared. but got to go on and enjoy life while i can .. has anyone here heard of a Dr. Coyle in Florida that has been helping ladies that have LS and they have been doing real good with his prosedure?
Nancy_K_B janie27576
Posted
HI Janie - glad things are feeling well for you. Please don't worry about what isn't ... smiles - keep up with what is working and I think we all would be wise to put on record with our doctors - is IF we get to the point of not being independent - we will have our recorded medical needs. Just breathe -
NOW, Janie No I hadn't heard of Coyle Institute but found it easily online and read up on his treatments that sound very promising. I did note that he uses PRP as a main part of his protocol. Plus some apparently slightly different use of biopsy if needed to determine the depth of the disease. We always have to do our due dilignece on any onlinerecommended places however... THanks for sharing...
beverly52803 Nancy_K_B
Posted
I'm trying to find someone where I am re the PRP. Have only come up with spas who typically use it for facial rejuvenation. Found a NP who is willing to try it. Not too encouraging. Says she went to a Runels' seminar (see Guardian article).
I'm looking for any reasons it may be problematic. Have you found any?
Also still searching for an FM doc. Spend far too much time on this.
janie27576 Nancy_K_B
Posted
Hi Nancy, I hope you are doing well, yes I know, but this Drs can' t be trusted, but yes you are right, cant worry about what isn't...hope you are doing well, are you also usin Borax? I have an appt. next month, see how she sees it down there.. will let you all know.. janie
Nancy_K_B janie27576
Posted
HI Janie - yes things are well at the moment and I am grateful everyday.
oh gosh yes, about the Borax. Borax in the bath and borax in my drinking water.
BORON (borax-product name) is one of the CO-Factors for Vitamin D and D3. I sure hope everyone is picking up on that fact. No amount of creams and salves is going to improve this disease without working from the INSIDE as well ~ balancing out our nutritional deficiencies.
I've come to the conclusion, Janie, that if we were all taught that by our 40's we needed to get serious about our nutritional and supplement health (presuming we all had access to a superior battery of tests) we'd never have gotten this or a host of other diseases. just my opinion.... smiles.
janie27576 Nancy_K_B
Posted
Nancy, happy you are doing well, wish all the ladies here were doing well, since we know how awful this LS is and how much it hurts... so thankful to you on the Aloe/Turmeric mix, it has help me so much and i still use it, along with Emuaid .
So what are you taking? the boron pills are the borax mix? also on vit.D which one, i get confused, I am takin the vit D3 mcg 5000 iu, is this good? Thank you Nancy, I struggle sometimes on typing here cause i dont know my wording or how to express myself but i read up on all this ladies stories and how they are. I have a appt for my check up i am gonna see if i can check on my mind cause i forget alot of things that its getting scary...