Question

Thank you Sue for your quick reply.

THANKS.

I do recall at the very beginning an itch only a small area and put thrush cream there, it didnt work though so maybe that was the start of it. I had three biopsies which came back inconclusive, very common with L S so biopsy doesnt always show it.

ah yes thats unfortunate it came back inconclusive but i agree its common from reading others experiences on here, 3 biopsies poor you! i hated the biospy

have you had any treatment for LS yet? does it improve your symtpoms? i found moisturising and washing with a prescribed emolient has improved mine alongside the steroid xx

HI Emmy,

I seem to be like you I use Yes moitsturiser and clob for keeping it under control during a flare up. The biopsies were horrible a very personal area to have them done isnt it. Im post meno so I think that caused it also I had bicycle injuries down there and then L S set in. x

emmy, what is the prescribed emollient you use to wash? My gyn gave me a handout that said simply no soap.

Maybe you could send it via PM so it won't get blocked? thanks

will post and message u just to be sure.

the emolient i have been prescribed to wash with is called cetraben and it comes in a big pump bottle so i just keep mine in the shower and wash with it but it can be used throughout the day as a moisturiser too, this one works for me, its soothing and doesnt feel like its been applied whereas others have felt tingly or unomfortable

I use either emuaid moisturizing bar or cetaphil- both on AMAZON

karen, I had been using cetaphil for a few years due to the AV, but stopped after the current gyn's advice. I think they must advise with worst case scenarios in mind.

I just repeated the same brand name yet the message was blocked ???

karen, why would they have done so many biopsies? Did you have various symptoms on 6 parts of your body that weren't typical of LS? Sounds very painful. My gyn did a careful examination and saw enough to assure her it was though I was having no pain or redness. I had a fleeting inner vaginal itch, but that responded well to flagyl so am pretty sure it was bacterial. Maybe LS (or AV which I also have) makes us more susceptible to bacteria. I don't know. The itch finally resolved in the fall so possibly heat had something to do with it.

Do you plan to continue taking all those supplements?

After testing me for every STD in the book ( pretty funny since I was a virgin when I married 25 years ago) - initially thought it was HERPES because it was so painful, she took 6 samples from labia minora, majora, perineum, up near clit and near anal hole- all 6 positive for LS. Unfortunately she left practice and soent 6 werks setting up her new office, so I had no treatment for 6 weeks, so I read everything I could and treated myself with EMUAID, PERRINS and a moisture barrier cream to heal the ulcerated areas. Was finally given CLOB and that put disease in remission ( with dietary changes and supplements).

Yes, I will continue to take supplements to build and maintain my immune system. THESE INCLUDE VIT D3, K2, B12, VIT A, ZINC, SELENIUM, TUMERIC, GLUTAMINE, MAGNESIUM, CALCIUM, VIT C, BORON, A multi- VITAMIN, Omega 3, METHYLFOLATE, PEPZIN - GI ALOE vera JUICE AND APPLE CIDER VINEGAR.

I buy most of them on AMAZON WITH FREE SHIPPING

same here changes of structure to the minora that wont come back x

Thanks Karen. Happy to hear that you are doing so well.

I'm still perplexed why she would take so many painful biopsies unless symptoms in all the areas were atypical. Not sure if this is an indication of how differently doctors go about diagnosing or that the disease appears so differently in various people.

My gyn spent a very long time with the exam & returned to the room to show me photos which all but put me in shock. Apparently the photos were of very advanced cases, because I could only discern a pale while line and labial edges that looked pale when I got home. I started in on hormone cream for the AV and triamcinolone steroid immediately. That was 8 months ago.

You were very patient to wait 6 weeks for a doctor to prescribe a common steroid! I would have been camped outside her office door demanding a prescription.

Recently got a book out of the library by an MIT educated man who suffered a near fatal collapse of his immune system and ordered many (not all) of the supplements he recommended.

Cal/Mag, Garlic, A,C,E, Selenium, Zinc Gluconate, Omega EPA/DHA Fish Oil, DHEA, Copper, Vegan Coenzyme Q10. Already on B complex, D3 and a multi (which I will let run out).

No Boron, Tumeric and Methylfolate (?), but may consider adding Boron.

I had taken some of these for years, have consistently read vitamins are best absorbed in food, never noticed any benefits so pretty much stopped.

I'm bad at consistently taking pills of any kind, let alone so many! May consider adding Boron though. With no way of knowing if any are helping (unless my symptoms completely disappear) I will probably stop most after 3 months if no sign of improvement, Also got some cider vinegar as the author was adamant about measuring PH daily, but I haven't gotten the strips yet. PH rated most important on his list.

(Got my supplements from swanson, also free shipping.)

Are you the person also on the low oxalate diet? Can't keep track, sorry.

Hi Karen, it is really interesting to hear that you have followed the recommendations of Nancy K B's Research and are taking 18 vitamin and mineral supplements. At the moment I am only taking Vit D3 (12.5 ug) and Zinc (15mg) - so there is plenty of scope for me to step-up what I am doing.

I initially tried taking a high dosage of the Vit D3 but had an adverse reaction to it so dropped down to the 12.5 micro-gram. In terms of foods, I try to exclude processed foods such as meats and sugar from my diet as much as possible, and I am trying to step-up on a Gluten Free diet too.

My other complication is that I have Chronic Fatigue Syndrome so I am never going to feel great anyway. So, my question would be to improve on what I am currently doing do you feel I would need to go for all 18 supplements and vitamins, or do you feel there is a core of these that are the essentials - or have some other suggestions to make?

HI Bev- Yes I was following a low- oxalate diet as well since I am prone to kidney stones ( hereditary) and mine were defined as CALCIUM OXALATE STONES. Apperently if I eat oxalates suxh as spinach or berries, I hv to pair them with calcium such as feta cheese on spinach or greek yogurt with the berries. They wil then bind together and you seafelt pee them out. However, if I eat too much oxaltes without a calcium to binnd to, the excess oxaltes form a stone- in my case kidney stones and that is the WORST kind of hell. I have the lists from HARVARD U, fpund online with oxalate levels of all foods, now I tey and stay arpund 50 oxalates a day ( I was eating about 2,000 between my whole grain bread, raw nuts, spinach and sweet potatoes daily.

I think my OB took so many samples because I was so raw and in so much pain that she wasn't sure what she was dealing with.

I was fortunate to be on vacation for 6 weeks so I could focus on myself, find this forum and all its great info and hv the means to buy and try many different products to see what worked best for me.

I believe the supplements will help heal my leaky gut ( not proven yet) , strengthen my immune system and keep my Ls at bay and ward off any further complications.

HI WD- QUESTION? Were you balancing your D3 with VIT A TO PREVENT TOXICITY? Studies hv shown that we should be taking 2-3x VIT A AS WE ARE vit D3. I take 2500 ui VIT D3 and 15,000 VIT A. I also take my magesium and CALCIUM at night so they don't mess with the absorption of my other vitamins. You should read up on which supplements are fat soluable and shpuld be taken with food in the AM and best times to rake others so they don't cancel each other out. I hv a lot more energy, am more focused and my LS is in remission so I BELIEVE the supplements are working and will continue them.

I JUST ADDED ASHWAGANDHA POWDER AS WELL.

karen, my mother suffered with kidney stones. So far that is something that I have avoided despite inheriting other genes. Some good so it's 50/50!

Are you saying if oxalates are paired with calcium it is safe? (Assume you are typing on a phone.)

Think I'll stick to my nuts for now. Can't eat a bowl of mushy oatmeal without them.

I sent you a PM re your more recent message re creams to avoid having anything more blocked.