Feeling Very Cold

inspiring...thank you! i wish i hadn't started thyroxin....wanted to warn carmel.

we may be around the same kind of stage...tho i'm not feeling great...i think my energy is slowly returning.

i'm also looking at my adrenals...have a book recommendation. may not be allowed to mention here....so will PM you.  will also ask another woman who seems to have sorted her thyroid if she'd come on and give us some tips and guidance.

don't go away...so good to have found you. oh and thank you for your kind compliment above xx

What is LS? It is said once you have one autoimmune disease, others follow so I don't discount anything.

I'm interested in the title of that book. I don't know why they'd be so restrictive since we are here to support one another with information. It's not like you are trying to SELL me the book! I have no idea how to work the PM thing nor where it's located...I'll look around.

I keep hearing thyroid issues contribute to anxiety issues so palpitations would make sense...adrenals are directly connected to stress so even that might be a connection.

yes LS is another autoimmune condition....it involves inflammation...as all autoimmunity does...its part of the fire that we have not yet put out....of the vulva in this instance. its characterised often by an intense itch, and narrowing of the introitus sometimes with scarring.

i am soooooo frustrated by the restrictions but was also told its ok to share book titles so on that basis i'm currently reading Adrenal fatigue - the 21st century stress syndrome by james L Wilson...he's an ND...which is a naturopath. its not brilliant but am taking it in slowly. i have found a book i do want that may get moderated so i'll mention it in a new reply....about the thyroid...its a treatment programme so i'm going to give it a go. x

OMG! Itching and BURNING in the nether regions? THAT'S an autoimmune disease??? Actually, mine all went away with my diet, but since taking these thyroid meds and the return of inflammation, it started coming back. Now that I've stopped the meds, it's gone away again. Thank god. I thought it was just inflammation. Actually there are a number of diseases that have these symptoms, but I had not heard of LS until this moment!

When I was itching and burning like the fires of hell before I started the diet, I used to wash with vinegar. It's painful for about 1 minute and then all the discomfort goes away. I don't know if that will help anyone. I also started using panty liners and changed them constantly and that helps immensely. I really thought it was just inflammation or something to do with pH balance. I'm going to look into LS. I'm unclear how it's an autoimmune disease - what is my body attacking? Specific type of tissue? Vulvas aren't organs...?

Hmmm...I don't know if that's what I have. I itch and burn, but no white patches or scaly stuff. LS doesn't sound like it would be remedied with vinegar. How do you all treat it?

Isn't it frustrating no one seems to know what causes most of these conditions?

oh but we do know...its the fire of inflammation. we've got to put it out or we're knackered....none too fine a point!!

gosh you were quick about checking that out...i'm impressed....where did you go?

i'm following a protocol vis LS by a woman who cured herself...its supposed to be incurable.

would you like to try to follow along with a thyroid protocol...?

the book i would like to recommend has been moderated...but it may be passed so you could follow along as well if you wish. that would be great.

it would mean a lot to me to have someone to work through this stuff with. other people are suceeding in curing themselves on these forums...maybe we could do it too?

I just looked online. Lots of sites explaining LS symptoms with pictures. I don't know if that's what I have as I've never had the white patches. Other than redness, no doctor has ever notice anything else and none of them knew what to do with me although everyone did all kinds of tests. One suggested cortisone cream and I thought I would die from the pain. This was ten years ago. I've been on this diet for 4 years and only now am I thinking it made a difference. I really thought the constant changing of panty liners was what helped. My itching and burning has gone away. It only returned for a day, then I stopped the thyroid meds and all is fine.

What is the thyroid protocol? I'm interested in anything that helps. I think I mentioned before, I am extremely sensitive to drugs including supplements so I can't take things. I can only do diet.

I also suggested a book, the one that saved my life, but you can find him online (for free), but the title looks like it's being moderated as well. Why do they do that? We aren't selling anything. In fact I can guarantee, I'll go to the library to find any book before buying it. hehehe

You mentioned PMs? Is that "private messages"? How do you do that? I looked but couldn't find anything. I'm new to this support so maybe I didn't sign up for that. I assume with PMs we could exchange information without moderation? Or I could give you my blog and we can connect that way. Maybe they'd moderate my blog??

ha ha ...for sure ....someone would come out and delete your stuff if they could!!!

yes pm's are private messages. you press on the little envelope beneath the name of the person you wish to contact....just to your left...see it?

well you may have been pre LS but are reversing it. well done that s what the woman who recovered did. you are so much on the right lines and are inspirational! you absolutely must speak to suzanne she has all the same sensitivities as you and similiar methods....

was it stuff by M.H you were going to send me? don't worry i know him too and he authored the book i'd like to follow with you....hope very much that with understanding the moderator will pass the reference so we can jointly undertake this project and include anyone else who may come along.

HAHAHAHA! I love "knackered". We don't use that here but I'm going to start. I love it.

I just listened to that guy's video. It's the exact thing I'm doing, except he talks about needing iodine which is not good for Hashimoto's patients. I'm sure in his book he goes into more detail about Hashimoto's. I also can't do all the supplements he suggests so that puts me at a disadvantage. I eat the foods for the nutrients. It's the best I can do.

If you look at my blog, it has a lot of posts on my diet.

Hi rumraisin and Marey--Thanks Marey for the kind introduction.  Just skimmed though the discussion and I agree that we all share similar stories and attempts to help our thyroids with diet/lifestyle changes. Rumraisin, I have been on an autoimmune paleo diet for the last several years and my thyroid antibodies are finally down the last couple of times that we've tested. But you're right, once we have one autoimmune disorder, we are prone to many.  I also have LS, and have just done some testing and have found that I have numerous antibodies to many parts of my body (though no other identifiable disorders besides food and medication allergies/sensitivities, brain fog, and fatigue).  Late here in Oregon, so off to bed.  Look forward to sharing more with you both!  --Suzanne

Hi rumraisin and Marey--Thanks Marey for the kind introduction.  Just skimmed though the discussion and I agree that we all share similar stories and attempts to help our thyroids with diet/lifestyle changes. Rumraisin, I have been on an autoimmune paleo diet for the last several years and my thyroid antibodies are finally down the last couple of times that we've tested. But you're right, once we have one autoimmune disorder, we are prone to many.  I also have LS, and have just done some testing and have found that I have numerous antibodies to many parts of my body (though no other identifiable disorders besides food and medication allergies/sensitivities, brain fog, and fatigue).  Late here in Oregon, so off to bed.  Look forward to sharing more with you both!  --Suzanne

Thank you soooo much for coming on!

well rum and i have been exchanging ideas and i was so impressed by the fact that unable to tolerate the thyroid meds she worked through her condition WITHOUT THEM!

Rum was also saying...(hello rum...please correct me if i misrepresent you)...that after starting the thyroid meds she started to get the early symptoms of labial inflammation...which in both your case and mine Suzanne has progressed to LS. Still just inflammation...but with a fancy name.

So.... i'm wondering if the thyroid medication might be a causative factor in LS...in terms of contributory alien chemicals....(a theoretical cause of LS and other autoimmune diseases)?   Perhaps associated with a reduced ability to de-toxify...due to either a genetic disposition or quite simply because each of us has reached our personal TOXIN/ alien substance tolerance loads?  

I read a really helpful visual prompt to illustrate this....it was that each of us has, in principle, an empty cup to hold life's toxins....when this cup is full  - we start to  experience symptoms. Some of us have smaller cups than others...and so experience symptoms earlier. some can 'filter' the cup before it fills either at all or to some degree ....whilst yet again some can filter the cup more slowly but sufficiently  to prevent it overflowing. 

I suppose we have filled our cups re LS suzanne ...but somehow rum has managed to empty some space in hers. so the symtoms of LS went away....apparently when she stopped the input of whatever toxic/allergic contribution goes into  thyroid meds.

You however Suzanne through the excellence of you dietary care have averted Addisons ...cured yourself of the effects of Coeliac and are generally an ABSOLUTE STAR!!

So you see how I felt the two of you had to meet cos you are both clearing and emptying your cups... but what we all need to look out for is how it is we might be re-filling them???????

So can you help me here please Rum....I'd like to invite Suzanne to consider that the steroid she's rubbing in to her labial mucous membrane might be tipping the cup towards 'fill' ...and what good could that muck do anyway? Surely best to work on increasing our de-tox pathways and maximising liver function? Its simple really we've just got to tip the muck out faster that it comes in!!!!!!!! AGREED?

XXXXXXXXXXXXXXXXXX

 

Marey, you are brilliant either than or you are reading my blog.I can't remember if I gave you my blog address in PM, but they deleted my post that gave it here (we ARE knackered!) Are you chemically sensitive? I am! It's all about toxic load and reducing it. Some think the origins of autoimmune diseases are chemicals, some think thyroid dysfunction is also from chemicals. I personally believe it's all from chemicals and we are being poisoned. My DNA shows genetic mutations that contribute to problems with detoxification and metabolism so I am certainly knackered! And I think this vaginal/labia burning like the fires of hell is just inflammation and it changes your pH which creates too alkaline pH in the lady fluids creating more inflammation. That was my initial self-diagnosis when no doctor would bother to help. So too alkaline? It needs pH rebalancing - started washing with vinegar (acid) and it helped. Then started using panty liners so I could change them all the time and that kept everything down there dry and protected from alkaline fluid. THEN changed my diet and I no longer had a problem until I started taking these nasty drugs which messed up the balance. Thats' me in a nut shell. If you want my blog address send a PM.

what is with this sitelat ely typing is slow and can't seemt o keep up creatinga  real problemw ith spacing in the post its drivingme  nuts.

hi Suzanne, Cortisone on the lady parts created HORRIBLE pain for me.

You in Oregon? I'm in Washington - on the coast. Where are you?

Washington? west coast just below canada? is that DC? or is dc the other side...well either way ...I'VE BEEN THERE!! Its fab ...really wild...like you and me!!!!!!!!!

We went in an RV over past the islands just in to canada. saw raccoon and sea otters...so cute on their backs or were they sea lions ...in puget sound and elk in the hoh forest.

loved it.

i'm coming over to see suzanne some time...she doesn't know it yet....going to do the tour!!

loved the pic you sent me of the colourful house....funnily enough someone else...Joy...have you met her yet? (she's mostly over in Alt Med and also fibromyalgia) sent me the same pic!! guess its been in your national papers?

absolutely agree with you...its all chemicals!! all this disease is down to chemicals and we're being poisoned. SO ....The answer is simple. we get rid of them!!!!!!! Ha!

but yes seriously ...we do. do you consider yourself cured ...? Or are you still dealing with residual issues?

this is were my human biology, A level biology and nurse training comes in handy....all those pictures of kidney glomeruli and tubules...got to activate them and get those excretory mechanisms working. red saunas etc ...whole protocol needed ...but got to get suzanne off those steroids...its clobetasol by the way that she's taking. agreed putting stuff on the surface is irrelevant...it about the much bigger picture.

xxxxxxxxxxxxxx

Hi rumraisin and Marey--I'm in Eugene, about an hour inland from the central OR coast. The typing on this site has been terrible since yesterday. Going okay for the moment--I shut down my computer and reopened. One of the experts in the autoimmune summit who runs c-y-r-e-x l-a-b-s believes that 60% of our autoimmunity is due to toxins, not inflammatory food choices! That was news to me, so you and Marey are correct. Marey--I'm not using much steroid cream now, just coconut oil--gave up, wasn't helping anyway! Can't wait to see you when you visit! Not sure about going off of thyroid--I think that I've had such major tissue destruction that my body can't make enough anymore. Even though my antibodies are now down I have to take a huge dose of T3 and T4.  Well, off to work, talk later!  --Suzanne

so glad to hear of your very wise decision to quit the steroid. any steroid help would only later be a huge barrier to healing when the suppression factor is overwhelmed by the body at a later date. tho sometimes it may go on suppressing symptoms til we die....if taken late in life.

fortunately you want to give your body a life...so welcome back....its speaking to you about something being wrong...and mine too....so its on to the detox programme!!

going to look for a red sauna.

hehe i can't wait to visit you either!! well maybe you have little thyroid but maybe you 'd be able to make some?! thanks so much for the dr eric link....rum says she's having probs with this site...but it seems to be ok again.

which summit speaker was talking about detox? well there's the next angle...it s a way of life in sweden....they've always been very serious about detoxing xxxxxxxx

well you know what you're doing having got those antibodies down....thats more good news. WELL DONE xx

There was a speaker who was recommending against detoxing with chelation, etc. and was advocating a clean lifestyle to detox.  Is that the one that you are referring to?  I can't remember the details or who presented the evidence that it can be dangerous for us with autoimmune issues to do a big detox, but I do remember that it was cautioned against.  That makes the most sense to me to--live well and our bodies will do the clean up needed. Saunas are a different story--natural to sweat and helps our bodies to get rid of wastes.  Let me know how it goes for you!

thanks !

yes agreed chelating needs care....i don't want to mobilise mercury...but gentle shifts i'm helping with thro de-tox tea..really like it too!

I used to be an IV administer for a doctor who did a lot of chelations. Nasty toxic stuff they put into your veins. Smells like a sewer. There is no way I would ever do it.

Funny you should mention the dangers of detoxing to autoimmune people...I just recently thought it might be "fun" to try to clean out my liver and see if it helped with the inflammation. Although it's suggested to do a fast for four days with lemonade, that's too long for me so I only did it for one day...and every time I eat now I get incredibly sick with headaches. Never again. I think my liver went on vacation and forgot to return!

But people who are chemically sensitive often don't have detoxification capabilities like "normal" people which is why we are sensitive to everyday chemicals (perfumes, etc.) because we can't get them out of our system quick enough. So we always have to self-detoxing like certain foods, saunas, hot baths. I did all kinds of stuff which lessened the load and now I can function. But again, there's no way I'd ever do chelation.

really helpful rum...thanks for that!

were you a plebotemist?....a blood drawer?

i generally don't do anything a doc recommends!! i find doing the opposite to be a useful guiding principle!!

i am taking levo at mo...but only til i find a programme to quit...interested in this dr eric or dr haskell...both ND's ...ie sensible and nutrient aware. tried on my own but tsh went from 4.5 to 5.1 AND i didn't feel right....even slower than normal.

so glad you have a handle on your de-tox...but lemonade no. mIlk thistle ...YES, DON'T GIVE UP.

Clelation per med doc bound to be like anything else they do...over board. eg pharmacological dosing...no way.

but gentle regimes yes....lets explore this further for all 3 of us xxxxxxx

Sounds like good thinking to me about risks of too quick a detox!  Interesting info about your experience with chelation!  Thanks!  --Suzanne