Beverly I was being dramatic to them to let them know this is the only drug that works and I have been using for years and they can’t cut me off now.
Hi Susan, it is not the always the gluten in the bread that causes the problems.
I have been ill after eating GF bought bread more than once. Through muscle testing I discovered THREE different ingredients that my body reacted to. So, I would make your own bread if you can, its easy and you don’t need a special bread machine.
We are being poisoned through greed.
Hi Beverley, you dont need a bread maker. I make my own bread, and I dont have one. I can tell you that I cannot tolerate any bought GF bread it makes me ill. Once you do that you wont want to go back to the horrible stuff in the shops. The problem with GF stuff is that they put loads of sugar in their products for some reason and it ends up being very unhealthy for you.
Well, Guppy, as I said I never end up buying a bread maker because I would eat too much bread. And I am not apt to start making bread by hand at this point in my life. I focus on cooking meals, not breads and never desserts. That takes as much time as I want to spend on cooking and I prefer my caloric intake to be mostly nutritional. I have noticed the GF breads are very sweet. They taste like dessert to me the same way french bread does. Stopped eating white bread about 40 years ago, although I recently read that sourdough has health benefits so I’ll go back to that as an occasional choice. I favor variety.
Susan, it worked! Whatever it takes. I was fighting mine re the too high deductible on hormone creams. They sent me a letter in response, but I have misplaced it. Will soon be a moot point as I changed my health insurance co yesterday to one with better coverage at the some price! But that doesn’t go into effect till Jan 1.
There’s only so much time in the day.
Hurray for you. We gotta do what we girls gotta do.
Hi Beverly
I tried to increase soy and it played havoc with my stomach, apparently it can be an allergen, so I’ve had to stop. Had hoped for a positive outcome, but it just doesn’t work for me.
How old is older? I am 53 and had full set of tests twice, which showed up nothing other than a slightly lower Vit D level, but even that was only just below normal, not worrying .
Bridge, I’m not sure who you are responding to. (I find these conversations can get pretty confusing). If you are asking my age I am 70. LS diagnosis was this year.
Don’t remember asking about anyone’s Vit D level.
I think I was responding to this one, but it ended up in the wrong place…
In case my link never gets thru one thing that was mentioned in the handout I was given is that older women with LS generally also have an underactive thyroid so tests should be done yearly. My gyn did not order one, but I asked my GP to order one when I went for my yearly visit.
I think my response about Vit D was related to the possibility of other things that might be LS triggers. I’ve had full baseline blood tests for everything - vitamin and mineral levels, blood, liver, kidney, thyroid… I can’t remember what else. I was diagnosed with osteoporosis earlier this year (I’m 53) and my doctor wanted to see if there was anything underlying to cause it, as I’m otherwise fit, eat well, don’t smoke, no genetic predisposition and walk for an hour daily. My bloods came back as completely healthy apart from the very slightly lower vit D, and of course post meno. So I guess that’s informative for LS too. In theory I shouldn’t have either, but there you go…
I hope that clears things up. I’m struggling to remember what I was responding to as well.
I have been rereading info. Wondering about similarities of psoriasis and LS. Psoriasis not uncommon, but also no cure or real understanding of its cause. Like with LS “the immune system mistakenly attacks healthy skin cells as if fighting infection…body responds by making new skin cells every few days instead of usual 4 weeks. Those cells build up on the surface forming a rash (plaques)”. Clearly interfering with your immune response could be dangerous, but what else could ever “cure” it?
Also read that 80-90% of psoriasis sufferers improved after bathing in the Dead Sea ( x10 saltier than the ocean)! Hardly a convenient location, but bathing in salty water certainly can’t hurt. If I detect any BV systems I rinse off with water w/a little salt added. Will make a point of taking dips in the ocean more often. Would probably hurt open sores, but I haven’t had any.
Re LS Maintenance Therapy(on clinical advisor):
mometasone furate 0.1% cream 2/3 X a week, less potent, provides greater anti-inflammatory benefits for longer duration compared to corticosteroids of similar potency.
Anyone using that? Think it is very similar to the triamcinolone I use (which is a bit less expensive).
Have found nothing re “flare ups”, if usual or preventable. Those are of most concern to me.
Hi Guppy, just reading through this thread and just want to say I saw a gynaecologist a week ago in sheffield for my rectocele. Whilst there I took the opportunity to ask her if she sees many ladies with LS and is it as rare as we think it is. She said that she does indeed see lots and lots of LS patients and it is definitely not a rare condition. A lot of ladies misdiagnose themselves by treating it as thrush. Also as I manage my condition quite well most of the time; she said my vulva looks quite healthy considering I have this problem and took down details of my olive oil regime which, coupled with the occasional tailored use of clob, definitely works for me.
Hi Jill, that’s interesting.
I kinda thought it might be uncommon, but for all I know it could be out there in epidemic proportions and the reason we wouldn’t know is because it is not something that is talked about.
Maybe more of us should ask our doctors the same question at our next visit.
I have a specialist clinic appointment in a couple of weeks, I always ask ‘How common is it?’ and they always brush me off and won’t give me a straight answer. However as I’ve never seen the same doctor twice, I keep asking, just in case one of them does…
jill, that confirms what my gyn said about LS not being uncommon. I know I initially read online that it was rare but can’t remember the actual statistics. That is probably based on old reporting anyway. Am also not surprised that women don’t know they have it. I didn’t know.
Went to see the gyn because of BV that came & went. Knew I had AV and just assumed any slight discomfort was caused by that, not LS.
I wonder about the connection between AV and LS. I think it’s true all postmenopausal women have AV…it’s just a matter of degree. Some get by with moisturizers, some of us need to use hormone cream. I would think all gyns would be trained to automatically check post meno women for LS. Maybe most of us just stop going to see gyns after we stop getting pap smears causing LS to go undiagnosed.
What is BV?
Bacterial Vaginosis. An internal itch, then eventually an odor that would come and go. It seems to be fading (fingers crossed). Gyn had me using hormone cream every night to stabilize PH along with a little yeast cream. That seemed to just make me sore. Have stopped the yeast cream and am using the estradiol twice a week. Seems better, but it may also be due to the weather being much cooler.
I think only one other woman posted also having an odor. I rinse with slightly salted water and it goes away.
Thank you. I think that is what I had but the doctor didn’t know what I was talking about when I said odor. It was like a wound odor. I don’t have it now and am not sure how it disappeared, but it was not good. I am now using estradiol too every night. Not sure it is helping. I’m also using cannabis/coconut mixture every day. I thought I was seeing a change, but now not so sure.
My gyn seemed to think taking care of the LS would make the “feeling” of an infection go away. I eventually took Flagyl as it has worked for me in the past. After the 1st pill the itch stopped, so I know it was an infection. It’s just very inconsistent.
I don’t have severe LS symptoms, do you?
Hi Beverly, Not sure what severe is or how bad LS can get. I’ve lost a lot of my architecture down under. Itching is in control, but can’t seem to get rid of white patches and lesions. I’m extremely frustrated.