Re: NOT just dermatitis OOPS

[Guest guest]

OOPs,

PS.... never mind, I just caught why, LOL it was in response to that other post. (I missed that at the bottom) DUH...

Believe me mine was only in the skin and I knew it. Just like a cut on your arm vs. a deeper throbbing pain within a muscle, I sure could tell the difference and knew it was skin alone. (not saying yours is hon) heck just air killed me, it was strictly topical & surface pain in my case.

Dee~

[Guest guest]

Yours may very well be just surface pain - but for

many, there is no dull muscle ache at all. It does not

even remotely resemble muscle pain that we are

familiar with. The labia tingling, or feeling like the

skin was scraped with sandpaper, feels like what we

might be familiar with as surface skin pain but may be

referred pain from somewhere else. I would encourage

anyone with long-standing vulvar pain, not just achy

muscle type pain, to get checked out by a PT.

--- DeeTroll wrote:

> OOPs,

>

> PS.... never mind, I just caught why, LOL it was in

> response to that other post. (I missed that at the

> bottom) DUH...

>

> Believe me mine was only in the skin and I knew it.

> Just like a cut on your arm vs. a deeper throbbing

> pain within a muscle, I sure could tell the

> difference and knew it was skin alone. (not saying

> yours is hon) heck just air killed me, it was

> strictly topical & surface pain in my case.

>

> Dee~

__________________________________________________

[Guest guest]

I agree hon...... and well worth checking out a P. Therapist. If it helps that's great and we never know till we try. Just didn't for me till I got that skin good and healthy but we sure are all different, no doubt about that and of course there's a thing such as referred pain and often does come from pelvic or back problems and it makes absolutely sense that PT could help, as well as with the vaginismus.

Hugs

Dee~

[Guest guest]

I think I made some comment about the doc saying " just

dermatitis " in a past email. My input and reaction was

that this answer seemed to belittle the problem

whether my impression was accurate or not.

AT some point I realized that I didn't really even

know the definition of dermatitis so I found this site

if anybody is interested in the definition:

http://www.google.com/search?hl=en & lr= & defl=en & q=define:dermatitis & sa=X & oi=gloss\

ary_definition & ct=title

It seems to basically mean that the skin is doing

funny uncomfortable things--a description--and doesn't

include whether the cause is from outside or inside or

the problem is only in the organ of skin itself. If

one has an outside cause--plant (poison ivy) or animal

(scabies) or chemical (soap) the cure might be more

simple. If the cause is not from the outside and is

caused by some bodily malfunction (which might also be

plant and animal (food) chemical reaction to medicine

finding the cure may be more difficult. I much prefer

cures instead of treatment if possible and that is the

way I think.

I guess my mental meandering is merely that there are

many things that might help but if there is really a

body malfunction which has resulted, treatment may

make a life more livable and I am all for that but

something causes this stuff to happen.

So if it isn't from the outside what is causing the

body to mis-function. What causes the lack of

estrogen? What causes the nerves and muscles to be

inadequate that could be changed or stopped?

Just thinking out loud here.

__________________________________________________

[Guest guest]

Thank you all for your input. I was upset at the doctor because she

did just seem to dismiss my problem, despite the fact that with my

previous flare up, I had already gone through the gamma of doctors,

including dermatologists, gynecologists etc, had a biospy done, allergy

tests done, etc. So I was seeing a specialist, and paying huge amounts

of money, for an opinion that would take into consideration all I had

already gone through, and not simply refer me to yet another

dermatologist. While I do think that the problem is the skin, I agree

with Arline, that there's something that's triggering the flare ups.

My muscles also get super tight because of the pain which is why I

think physical therapy would help my problem, though not cure it. I

did stop taking birth control pills, so maybe that was a contributing

factor (again something the specialist said would make no difference).

I also got tested for gluten intolerance, and it was negative. I know

I don't have any yeast problems or infections. ANd I still think my

flare ups have to do with my taking antibiotics, because both times,

they occurred immediately after I took them. ALthough the doctors say

that it's just a coincidence, I don't buy it just as I don't buy the

" just dermatitis " excuse. Right now I'm just taking herbal supplements

for the skin, and going to an accupunturist. I'm trying to limit my

antihistamine intake to the days when I feel really really bad.

m.

-

Mara Fortes

(New York)

011-52-55-55-54-22-95 (Mexico City)

__________________________________________________

[Guest guest]

Mara, just out of curiousity - why would you limit your antihistamine to days when you are really bad. If it helps you on days when you are really bad then obviously you need it. Perhaps you would be better served taking it continuously? If it is the kind which makes you sleepy, take it a bedtime instead of the A.M.

Dusty

-----Original Message-----From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of Mara FortesSent: Monday, June 19, 2006 9:46 AMTo: VulvarDisorders Subject: Re: NOT "just dermatitis" OOPS

Thank you all for your input. I was upset at the doctor because shedid just seem to dismiss my problem, despite the fact that with myprevious flare up, I had already gone through the gamma of doctors,including dermatologists, gynecologists etc, had a biospy done, allergytests done, etc. So I was seeing a specialist, and paying huge amountsof money, for an opinion that would take into consideration all I hadalready gone through, and not simply refer me to yet anotherdermatologist. While I do think that the problem is the skin, I agreewith Arline, that there's something that's triggering the flare ups. My muscles also get super tight because of the pain which is why Ithink physical therapy would help my problem, though not cure it. Idid stop taking birth control pills, so maybe that was a contributingfactor (again something the specialist said would make no difference). I also got tested for gluten intolerance, and it was negative. I knowI don't have any yeast problems or infections. ANd I still think myflare ups have to do with my taking antibiotics, because both times,they occurred immediately after I took them. ALthough the doctors saythat it's just a coincidence, I don't buy it just as I don't buy the"just dermatitis" excuse. Right now I'm just taking herbal supplementsfor the skin, and going to an accupunturist. I'm trying to limit myantihistamine intake to the days when I feel really really bad.m.-Mara Fortes (New York)011-52-55-55-54-22-95 (Mexico City)__________________________________________________

[Guest guest]

Mara,

If you were tested by blood tests, you cannot believe

the negative results for Celiac Disease/Gluten

Sensitivity. The blood tests can only be positive if

the small intestine is so destroyed that it is obvious

and most Gluten Sensitive people's small intestine

never gets that damaged or it takes a long time. That

doesn't mean that the disease doesn't attack other

body organs like the skin, the nerves, the thyroid,

the pancreas, the reproductive system, etc.

There is one really good lab in the country where you

can get an accurate test (Texas actually) but it can

be done by mail.

http://www.enterolab.com

At the website you can order a test for gluten

sensitivity and other food sensitivities (not

allergies), especially milk. Allergy tests don't pick

it up. And you can read an essay called " Before the

Villi Is Gone " , which explains why the blood tests are

often not accurate.

Your vitamin pills should be gluten free (probably

made partly from wheat). The yogurt that gave you a

reaction probably had wheat or barley in it (in the

natural flavors which is a code word for gluten and

wheat or barley).

I encourage you strongly to get this test so you will

know for certain. This is serious disease.

In any case you are way ahead of the game if you

aren't eating wheat but I suspect that is not the end

of the story because it is probably gluten.

Antibiotics are usually made with yeast and besides

that, they cause yeast to proliferate and candida and

gluten cross react. Even if you don't have a vaginal

yeast infection, you could have an increase in candida

in your body. I suspect you are exactly right when you

say that you think the antibiotics have something to

do with it but you will never convince the docs about

that until they start reading something about the

subject??? Even some antibiotics contain wheat and

gluten.

I suspect your muscles are tight and in spasm because

the nerves are affected by gluten. Neuromuscular

problems are often caused by gluten. I used to get

such terrible spasms in my lower back (all over

actually) everyday all the time that I couldn't get

into the car OR out of it, etc. (Not now) These

muscles are connected to nerves and the nerves are

affected by gluten. Tight muscles are in spasm, not

just tight.

Hope this helps in some way. You may be able to get

totally well if it is gluten and it probably is in my

opinion but you need a good test. The blood tests are

a waste of time and money and effort. I wouldn't be

tested anywhere else and neither do I send my family

any place else for gluten testing or food testing.

Just my opinion.

Arline

__________________________________________________

[Guest guest]

I just wanted to back Arline up on this. If your doc orders bloodwork

for gluten intollerance, it is most likely just the ttg test (unless

you asked for the full Celiac panel). I've seen statistics that the

ttg will only catch about 1/3 of the actual positives, less if you're

looking also at gluten sensitivity rather than intollerance/celiac.

The blood tests are getting better, but still nowhere near good

enough - by that I mean the full celiac panel, processed by a

specialized lab (which there are only a handful of in the US).

Diagnosing celiac simply can't be done by looking at just one

indicator in the blood.

Sue

>

> Mara,

>

> If you were tested by blood tests, you cannot believe

> the negative results for Celiac Disease/Gluten

> Sensitivity. The blood tests can only be positive if

> the small intestine is so destroyed that it is obvious

> and most Gluten Sensitive people's small intestine

> never gets that damaged or it takes a long time. That

> doesn't mean that the disease doesn't attack other

> body organs like the skin, the nerves, the thyroid,

> the pancreas, the reproductive system, etc.

>

[Guest guest]

Dear Dusty,

I'm limiting my antihistamines to only days that are really bad because

I've been on long-term use on several antihistamines and I've notice

they sort of don't work anymore. Their effect just doesn't last. I've

been on Allegra, Atarax and Benadryl. I'm trying Zyrtec now.

mara

Mara Fortes

(New York)

011-52-55-55-54-22-95 (Mexico City)

__________________________________________________

[Guest guest]

It is very common to develop a tolerance to antihistmines. A doc should be able to help you with this, as should a good pharmacist. My experience has been to simply switch when one appears not to be working. I use both over the counter and prescription because I, too, have been on long term use of antihistamines. It generally isn't difficult to get a doc to prescribe a different antihistamine because most of them are also aware of the tolerance factor. One good thing for me has been that after a decent interval I can switch back to one that used to work and it will work again, i.e. If Allegra hadn't been used for two years or so and my current one was showing signs of not working, Allegra would work again for me.

You can google

antihistamines and tolerance

for info on this subject.

Good luck with the Zyrtec

Hope you are feeling better soon.

Dusty

-----Original Message-----From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of Mara FortesSent: Monday, June 19, 2006 11:54 PMTo: VulvarDisorders Subject: RE: NOT "just dermatitis" OOPS

Dear Dusty,I'm limiting my antihistamines to only days that are really bad becauseI've been on long-term use on several antihistamines and I've noticethey sort of don't work anymore. Their effect just doesn't last. I'vebeen on Allegra, Atarax and Benadryl. I'm trying Zyrtec now.maraMara Fortes (New York)011-52-55-55-54-22-95 (Mexico City)__________________________________________________

[Guest guest]

Mara--

Just chiming in but I'm curious why you are sure there is no yeast.

Same as with gluten, standard cultures for yeast are nowhere near

100% accurate for detecting it. Stool cultures done by the Great

Smokies Diagnostic Lab are much better (though still not perfect) at

detecting yeast in your system. Especially if you flare even more

after antibiotics, this is a good indicator that there could be yeast

involved.

Just my two cents...definitely something to explore if you haven't

already.

>

> Mara,

>

> If you were tested by blood tests, you cannot believe

> the negative results for Celiac Disease/Gluten

> Sensitivity. The blood tests can only be positive if

> the small intestine is so destroyed that it is obvious

> and most Gluten Sensitive people's small intestine

> never gets that damaged or it takes a long time. That

> doesn't mean that the disease doesn't attack other

> body organs like the skin, the nerves, the thyroid,

> the pancreas, the reproductive system, etc.

>

> There is one really good lab in the country where you

> can get an accurate test (Texas actually) but it can

> be done by mail.

>

> http://www.enterolab.com

>

> At the website you can order a test for gluten

> sensitivity and other food sensitivities (not

> allergies), especially milk. Allergy tests don't pick

> it up. And you can read an essay called " Before the

> Villi Is Gone " , which explains why the blood tests are

> often not accurate.

>

> Your vitamin pills should be gluten free (probably

> made partly from wheat). The yogurt that gave you a

> reaction probably had wheat or barley in it (in the

> natural flavors which is a code word for gluten and

> wheat or barley).

>

> I encourage you strongly to get this test so you will

> know for certain. This is serious disease.

>

> In any case you are way ahead of the game if you

> aren't eating wheat but I suspect that is not the end

> of the story because it is probably gluten.

>

> Antibiotics are usually made with yeast and besides

> that, they cause yeast to proliferate and candida and

> gluten cross react. Even if you don't have a vaginal

> yeast infection, you could have an increase in candida

> in your body. I suspect you are exactly right when you

> say that you think the antibiotics have something to

> do with it but you will never convince the docs about

> that until they start reading something about the

> subject??? Even some antibiotics contain wheat and

> gluten.

>

> I suspect your muscles are tight and in spasm because

> the nerves are affected by gluten. Neuromuscular

> problems are often caused by gluten. I used to get

> such terrible spasms in my lower back (all over

> actually) everyday all the time that I couldn't get

> into the car OR out of it, etc. (Not now) These

> muscles are connected to nerves and the nerves are

> affected by gluten. Tight muscles are in spasm, not

> just tight.

>

> Hope this helps in some way. You may be able to get

> totally well if it is gluten and it probably is in my

> opinion but you need a good test. The blood tests are

> a waste of time and money and effort. I wouldn't be

> tested anywhere else and neither do I send my family

> any place else for gluten testing or food testing.

>

> Just my opinion.

>

> Arline

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

I've had countless cultures done and they have found no yeast. I also

had a biopsy done which showed no yeast. I was also prescribed

diflucan several times, and was on a number of yeast medication and it

made absolutely no difference. The only time I had yeast was the first

time I was on a course of antibiotics (right before my first flare up).

But nothing in the past year an a half. SO I don't think yeast is my

problem. I had stool and bood tests done for gluten, both negative.

m.

--- femifesto wrote:

> Mara--

>

> Just chiming in but I'm curious why you are sure there is no yeast.

> Same as with gluten, standard cultures for yeast are nowhere near

> 100% accurate for detecting it. Stool cultures done by the Great

> Smokies Diagnostic Lab are much better (though still not perfect) at

> detecting yeast in your system. Especially if you flare even more

> after antibiotics, this is a good indicator that there could be yeast

>

> involved.

>

> Just my two cents...definitely something to explore if you haven't

> already.

>

>

>

>

> >

> > Mara,

> >

> > If you were tested by blood tests, you cannot believe

> > the negative results for Celiac Disease/Gluten

> > Sensitivity. The blood tests can only be positive if

> > the small intestine is so destroyed that it is obvious

> > and most Gluten Sensitive people's small intestine

> > never gets that damaged or it takes a long time. That

> > doesn't mean that the disease doesn't attack other

> > body organs like the skin, the nerves, the thyroid,

> > the pancreas, the reproductive system, etc.

> >

> > There is one really good lab in the country where you

> > can get an accurate test (Texas actually) but it can

> > be done by mail.

> >

> > http://www.enterolab.com

> >

> > At the website you can order a test for gluten

> > sensitivity and other food sensitivities (not

> > allergies), especially milk. Allergy tests don't pick

> > it up. And you can read an essay called " Before the

> > Villi Is Gone " , which explains why the blood tests are

> > often not accurate.

> >

> > Your vitamin pills should be gluten free (probably

> > made partly from wheat). The yogurt that gave you a

> > reaction probably had wheat or barley in it (in the

> > natural flavors which is a code word for gluten and

> > wheat or barley).

> >

> > I encourage you strongly to get this test so you will

> > know for certain. This is serious disease.

> >

> > In any case you are way ahead of the game if you

> > aren't eating wheat but I suspect that is not the end

> > of the story because it is probably gluten.

> >

> > Antibiotics are usually made with yeast and besides

> > that, they cause yeast to proliferate and candida and

> > gluten cross react. Even if you don't have a vaginal

> > yeast infection, you could have an increase in candida

> > in your body. I suspect you are exactly right when you

> > say that you think the antibiotics have something to

> > do with it but you will never convince the docs about

> > that until they start reading something about the

> > subject??? Even some antibiotics contain wheat and

> > gluten.

> >

> > I suspect your muscles are tight and in spasm because

> > the nerves are affected by gluten. Neuromuscular

> > problems are often caused by gluten. I used to get

> > such terrible spasms in my lower back (all over

> > actually) everyday all the time that I couldn't get

> > into the car OR out of it, etc. (Not now) These

> > muscles are connected to nerves and the nerves are

> > affected by gluten. Tight muscles are in spasm, not

> > just tight.

> >

> > Hope this helps in some way. You may be able to get

> > totally well if it is gluten and it probably is in my

> > opinion but you need a good test. The blood tests are

> > a waste of time and money and effort. I wouldn't be

> > tested anywhere else and neither do I send my family

> > any place else for gluten testing or food testing.

> >

> > Just my opinion.

> >

> > Arline

> >

> >

> >

> >

> >

> > __________________________________________________

> >