Re: NIH/VPF/oxalate testing--CORRECTION

[Guest guest]

sorry--

i meant to say the surgeon used the estrace to prepare their skin for

surgery, not therapy...(i was just reading the post about couples

therapy).

also wanted to say that i agree that the oxalate business is probably

not the " root " of the problem...that there is a reason we might have

extra oxalates in our system (for one, oxalic acid is a byproduct of

yeast), and that if our skin is weak or damaged it's just one more

thing that can cause severe irritation.

but hey, if the approach gives relief, and i don't think anyone on

this list who's suffering would disagree with me, it's worth it.

julie

> > > The NVA has outdated lists when it comes to drs as

> > > of the last

> > > time I looked.

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[Guest guest]

This is an interesting post in that the statement " there is a reason we might have extra oalates in our system (for one, oxalic acid is a byproduct of yeast)" made me sort of connect some dots. I wonder how many of those thousands of cured women didn't simply use the oxalate avoidance but also other treatments concomittantly, like estrogens or hormones. Yeast CAN be a disorder ( and often is) CAUSED by hormonal imbalance of the vagina and or the body as a whole.

So maybe we're on to something here. A good many of the ladies have yeast troubles at the beginning of their journey into VV. Perhaps if instead of being prescribed antifungals by the boat load or advised to only use the oxalate diet - the person should be checked six ways to Sunday for hormonal imnbalances , FIRST. I would think that blood work AND a biopsy (to determine presence or absence of adequate estrogen receptors ( if that is possible ) would be the way to go before any treatment is suggested. Maybe yeast is the catalyst - but the CAUSE of the yeast could be answer.

Just thinking out loud. Maybe I'm all wrong - but it seemed to click when I read the post below. I'm sure Dee would know if a biopsy could confirm estrogen receptors in the skin of the vulva or vagina.

Dusty

-----Original Message-----From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of femifestoSent: Thursday, June 29, 2006 1:13 PMTo: VulvarDisorders Subject: Re: NIH/VPF/oxalate testing--CORRECTION

sorry--i meant to say the surgeon used the estrace to prepare their skin for surgery, not therapy...(i was just reading the post about couples therapy).also wanted to say that i agree that the oxalate business is probably not the "root" of the problem...that there is a reason we might have extra oxalates in our system (for one, oxalic acid is a byproduct of yeast), and that if our skin is weak or damaged it's just one more thing that can cause severe irritation.but hey, if the approach gives relief, and i don't think anyone on this list who's suffering would disagree with me, it's worth it. julie>>

..

[Guest guest]

HI Dusty,

Has it been proven that some women 'do' have 'extra or high oxalates far and above average in their urine? Or is it possibly in the normal range (if there is such a thing as normal) and if it shows up it's a reason to say that's the cause or even partially of the pain.?

Similiar to those where a doctor will say we have yeast, but yeast is expected to be there as a normal course, as long as it's not overblown or causing symptoms? I'm just curious and have no idea so no debate here *smile*

I agree that hormone imbalance can be a big part of the yeast problem as can be diabetes or thyroid problems so it's well worth getting those checked out. Heck even stress can throw those hormones out of balance.

But what's ironic is, yeast can 'block' those E. receptors (and P as well) as yeast loves progesterone too. I believe the E can help keep that balanced yet we know we've read of E possibly triggering yeast in some people so it's one of those chicken or egg things it seems at times. *sigh* It truly is a delicate balance.

But what I'm thinking knowing that the blood levels can be fine but the 'receptor's' themselves not functioning I don't know how beneficial it would be to have a 'blood' (or even spitum) test for the genital connection. Though if the blood levels are low you can 'bet' it's affecting the whole genital condition, but what if it's normal?

No doubt for our whole body they definitely should be checked for that alone and it may be enough to work the receptors in the genital area IF they are functioning. Maybe that's part of the answer too. I don't know but if they're not functioning or not there, (the receptors) .... the blood levels wouldn't matter as they can be just fine but not the 'receptors' and I'd think very few physicians would even give that a thought (if they've even heard of it).

About how to find out if those receptors are functioning?

My doctor says if you want that go to a teaching hospital, and looks at me as if I'm a bit daffy. It's apparently not or rarely done unless it's under a scientific investigation or study. I do know they use a biopsy specimen and stain that with some sort of Immunohistochemical product and then add the hormones (or the antibodies) of whatever they're testing for to the stain to see if it shows up or not. Like following an iodine trail in the body with certain tests.

I wish I did know more believe me but always good to throw out ideas or theories and gets us thinking and your theory just may be onto something.

hugs

Dee~

..

[Guest guest]

Hi Dusty--

The VPF strongly recommends that women use topical estrogen along with the low

oxalate

diet, calcium citrate, etc.

I'm wondering, and I'm sure it's been posted on the list before, but what is the

best way to

have my hormones tested? Are the standard blood tests useful or not?

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[Guest guest]

Hi ladies, I went to see Dr. Peacocke, the self-proclaimed " queen" in NYC who told me that she was curious so she sent away for the $350 oxalate test and her test came back positive. She, of course, has no pain. The regular lab tests just look at total oxalate output in a 24 hour period. I have done that one. Basically I peed in a big jug and then brought it to the lab. The test came back fine. Then I had Dr. SOlomon's test and it came back with peaks and such so he had me do the timed citrate and diet. It didn't work for me. The calcium just added to my constipation. I think the test is a waste of money. But I do think oxalates can irritate, but for most people I do not believe they cause the pain. But what Dee, Dusty and others are thinking is...what causes the oxalates to be higher or peak or

simply irritate in the first place. All foods have oxalates in them. Oxalates never hurt before in our lives --- why all of a sudden? Perhaps the yeast and hormonal connection caused the oxalates to peak in production. Perhaps they have made our tissue more irritated - even at a microscopic level- that then the normal oxalate output becomes irritating. There was once a companycalled Ixion- Biotech that was developing a to get rid of oxalates altogether. I spoke to Joanne Yount, leader of the VPF, about it and you would think she would have been excited about it. AFter all it supports her big and only theory! Well, she said that she doesn't want to have a thing to do with them. I was baffled. In written communication she even spelled the name Ixion wrong in several places just confirming to me that she is off base in her own little Dr. 's world. Well, I just looked at Ixion's website and they sold off their oxalate program and now do stem cell research for Diabetes. I don't know who they sold it to but will try to find out. Thier site said --- "Ixion began operations in 1995. Recently, we sold our oxalate technology to our former majority shareholder in exchange for all its shares of Ixion stock." If and when they come out with a product to rid the body of oxalates I would give it a try. In the meantime I am trying to figure out the rest of my bodywide problem through the Fibro Center but my case includes yeast, hormone imbalance, Lyme Disease, IBS a coagulation defect among other things. Sandi

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[Guest guest]

Hi ladies, I went to see Dr. Peacocke, the self-proclaimed " queen" in NYC who told me that she was curious so she sent away for the $350 oxalate test and her test came back positive. She, of course, has no pain. The regular lab tests just look at total oxalate output in a 24 hour period. I have done that one. Basically I peed in a big jug and then brought it to the lab. The test came back fine. Then I had Dr. SOlomon's test and it came back with peaks and such so he had me do the timed citrate and diet. It didn't work for me. The calcium just added to my constipation. I think the test is a waste of money. But I do think oxalates can irritate, but for most people I do not believe they cause the pain. But what Dee, Dusty and others are thinking is...what causes the oxalates to be higher or peak or

simply irritate in the first place. All foods have oxalates in them. Oxalates never hurt before in our lives --- why all of a sudden? Perhaps the yeast and hormonal connection caused the oxalates to peak in production. Perhaps they have made our tissue more irritated - even at a microscopic level- that then the normal oxalate output becomes irritating. There was once a companycalled Ixion- Biotech that was developing a to get rid of oxalates altogether. I spoke to Joanne Yount, leader of the VPF, about it and you would think she would have been excited about it. AFter all it supports her big and only theory! Well, she said that she doesn't want to have a thing to do with them. I was baffled. In written communication she even spelled the name Ixion wrong in several places just confirming to me that she is off base in her own little Dr. 's world. Well, I just looked at Ixion's website and they sold off their oxalate program and now do stem cell research for Diabetes. I don't know who they sold it to but will try to find out. Thier site said --- "Ixion began operations in 1995. Recently, we sold our oxalate technology to our former majority shareholder in exchange for all its shares of Ixion stock." If and when they come out with a product to rid the body of oxalates I would give it a try. In the meantime I am trying to figure out the rest of my bodywide problem through the Fibro Center but my case includes yeast, hormone imbalance, Lyme Disease, IBS a coagulation defect among other things. Sandi

Yahoo! Music Unlimited - Access over 1 million songs.

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[Guest guest]

Hi ladies, I went to see Dr. Peacocke, the self-proclaimed " queen" in NYC who told me that she was curious so she sent away for the $350 oxalate test and her test came back positive. She, of course, has no pain. The regular lab tests just look at total oxalate output in a 24 hour period. I have done that one. Basically I peed in a big jug and then brought it to the lab. The test came back fine. Then I had Dr. SOlomon's test and it came back with peaks and such so he had me do the timed citrate and diet. It didn't work for me. The calcium just added to my constipation. I think the test is a waste of money. But I do think oxalates can irritate, but for most people I do not believe they cause the pain. But what Dee, Dusty and others are thinking is...what causes the oxalates to be higher or peak or

simply irritate in the first place. All foods have oxalates in them. Oxalates never hurt before in our lives --- why all of a sudden? Perhaps the yeast and hormonal connection caused the oxalates to peak in production. Perhaps they have made our tissue more irritated - even at a microscopic level- that then the normal oxalate output becomes irritating. There was once a companycalled Ixion- Biotech that was developing a to get rid of oxalates altogether. I spoke to Joanne Yount, leader of the VPF, about it and you would think she would have been excited about it. AFter all it supports her big and only theory! Well, she said that she doesn't want to have a thing to do with them. I was baffled. In written communication she even spelled the name Ixion wrong in several places just confirming to me that she is off base in her own little Dr. 's world. Well, I just looked at Ixion's website and they sold off their oxalate program and now do stem cell research for Diabetes. I don't know who they sold it to but will try to find out. Thier site said --- "Ixion began operations in 1995. Recently, we sold our oxalate technology to our former majority shareholder in exchange for all its shares of Ixion stock." If and when they come out with a product to rid the body of oxalates I would give it a try. In the meantime I am trying to figure out the rest of my bodywide problem through the Fibro Center but my case includes yeast, hormone imbalance, Lyme Disease, IBS a coagulation defect among other things. Sandi

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[Guest guest]

I believe that blood tests are probably the most reliable way to go, or so seems the consensus here. Your doc may balk if you are under 45, but believe me - we've had plenty of women on this list who have suffered from 'premature ovarian failure , i.e. early menopause'. IF the doc balks, your response can and should be that given your symptoms/vaginal - vulvar problems - odds are that there may well be something wrong with your hormonal balance . And this would include, Jul - testing your thyroid function as your thyroid governs all the hormones in your body. There are certain times of the month (if you still menstruate) when testing is most valid. I don't know what they are, but others on the list do and it appears, I believe in our archives.

Again, even if you test okay on the hormones, that doesn't mean that you have enough or properly working receptors in the vulvo/vaginal area. As Dee mentioned in an earlier post - it is possible to ask for a biopsy to determine the presence of efficiency of estrogen receptors in this area. You would have to research which labs (Dee has suggested teaching hospitals - but maybe your doc knows) - will perform this test, as I'd imagine not all are equipped to do so.

Gotta tell ya, Jul - that oxalate diet did absolutely nothing for me and I was religious about it for 4 l/2 months. All that pain and my problem wasn't oxalate at all but lack of systemic hormones, thyroid imbalance, pelvic floor issues and some pretty severe allergy issues.

Good luck with testing. Hope something helps

Dusty

(P.S. if your doc refuses - find another - but if that's too inconvenient there are sites on web where blood testing is available without a doc's script I believe).

-----Original Message-----From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of femifestoSent: Saturday, July 01, 2006 8:43 AMTo: VulvarDisorders Subject: Re: NIH/VPF/oxalate testing--CORRECTION

Hi Dusty--The VPF strongly recommends that women use topical estrogen along with the low oxalate diet, calcium citrate, etc.I'm wondering, and I'm sure it's been posted on the list before, but what is the best way to have my hormones tested? Are the standard blood tests useful or not?> >> >> > We Made Changes> > Your Yahoo! Groups email is all new.> > Learn> <http://us.lrd.yahoo.com/_ylc=X3oDMTJqM2NtZjd0BF9TAzk3MzU5NzE0BF9wAzEEZ3JwSW> QDNDEwNTAEZ3Jwc3BJZAMxNjAwMDYxMzM3BHNlYwNuY21vZARzbGsDaW5mbwRzdGltZQMxMTUxNj> AxNjg1;_ylg=1/SIG=11gd5l5o4/**http%3a//groups.yahoo.com/local/newemail.html>> More> > > > Share> <http://us.lrd.yahoo.com/_ylc=X3oDMTJrMWtoMGpnBF9TAzk3MzU5NzE0BF9wAzIEZ3JwSW> QDNDEwNTAEZ3Jwc3BJZAMxNjAwMDYxMzM3BHNlYwNuY21vZARzbGsDZmRiY2sEc3RpbWUDMTE1MT> YwMTY4NQ--;_ylg=1/SIG=11im36rmb/**http%3a//surveylink.yahoo.com/wix/p1412899> .aspx> Feedback> > Recent Activity> > * > > 13> New> <http://us.lrd.yahoo.com/_ylc=X3oDMTJkbTMyamk5BF9TAzk3MzU5NzE0BGdycElkAzQxMD> UwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDdnRsBHNsawN2bWJycwRzdGltZQMxMTUxNjAxNjg1;_> ylg=1/SIG=11qom201h/**http%3a//groups.yahoo.com/group/VulvarDisorders/member> s> Members> * > > 1> New> <http://us.lrd.yahoo.com/_ylc=X3oDMTJldnR2djVnBF9TAzk3MzU5NzE0BGdycElkAzQxMD> UwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDdnRsBHNsawN2bGlua3MEc3RpbWUDMTE1MTYwMTY4NQ> --;_ylg=1/SIG=11os6c0cj/**http%3a//groups.yahoo.com/group/VulvarDisorders/li> nks> Links> > Visit> <http://us.lrd.yahoo.com/_ylc=X3oDMTJjM2ZrazRvBF9TAzk3MzU5NzE0BGdycElkAzQxMD> UwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDdnRsBHNsawN2Z2hwBHN0aW1lAzExNTE2MDE2ODU-;_> ylg=1/SIG=11i76mmlv/**http%3a//groups.yahoo.com/group/VulvarDisorders> Your> Group >

[Guest guest]

I believe that blood tests are probably the most reliable way to go, or so seems the consensus here. Your doc may balk if you are under 45, but believe me - we've had plenty of women on this list who have suffered from 'premature ovarian failure , i.e. early menopause'. IF the doc balks, your response can and should be that given your symptoms/vaginal - vulvar problems - odds are that there may well be something wrong with your hormonal balance . And this would include, Jul - testing your thyroid function as your thyroid governs all the hormones in your body. There are certain times of the month (if you still menstruate) when testing is most valid. I don't know what they are, but others on the list do and it appears, I believe in our archives.

Again, even if you test okay on the hormones, that doesn't mean that you have enough or properly working receptors in the vulvo/vaginal area. As Dee mentioned in an earlier post - it is possible to ask for a biopsy to determine the presence of efficiency of estrogen receptors in this area. You would have to research which labs (Dee has suggested teaching hospitals - but maybe your doc knows) - will perform this test, as I'd imagine not all are equipped to do so.

Gotta tell ya, Jul - that oxalate diet did absolutely nothing for me and I was religious about it for 4 l/2 months. All that pain and my problem wasn't oxalate at all but lack of systemic hormones, thyroid imbalance, pelvic floor issues and some pretty severe allergy issues.

Good luck with testing. Hope something helps

Dusty

(P.S. if your doc refuses - find another - but if that's too inconvenient there are sites on web where blood testing is available without a doc's script I believe).

-----Original Message-----From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of femifestoSent: Saturday, July 01, 2006 8:43 AMTo: VulvarDisorders Subject: Re: NIH/VPF/oxalate testing--CORRECTION

Hi Dusty--The VPF strongly recommends that women use topical estrogen along with the low oxalate diet, calcium citrate, etc.I'm wondering, and I'm sure it's been posted on the list before, but what is the best way to have my hormones tested? Are the standard blood tests useful or not?> >> >> > We Made Changes> > Your Yahoo! Groups email is all new.> > Learn> <http://us.lrd.yahoo.com/_ylc=X3oDMTJqM2NtZjd0BF9TAzk3MzU5NzE0BF9wAzEEZ3JwSW> QDNDEwNTAEZ3Jwc3BJZAMxNjAwMDYxMzM3BHNlYwNuY21vZARzbGsDaW5mbwRzdGltZQMxMTUxNj> AxNjg1;_ylg=1/SIG=11gd5l5o4/**http%3a//groups.yahoo.com/local/newemail.html>> More> > > > Share> <http://us.lrd.yahoo.com/_ylc=X3oDMTJrMWtoMGpnBF9TAzk3MzU5NzE0BF9wAzIEZ3JwSW> QDNDEwNTAEZ3Jwc3BJZAMxNjAwMDYxMzM3BHNlYwNuY21vZARzbGsDZmRiY2sEc3RpbWUDMTE1MT> YwMTY4NQ--;_ylg=1/SIG=11im36rmb/**http%3a//surveylink.yahoo.com/wix/p1412899> .aspx> Feedback> > Recent Activity> > * > > 13> New> <http://us.lrd.yahoo.com/_ylc=X3oDMTJkbTMyamk5BF9TAzk3MzU5NzE0BGdycElkAzQxMD> UwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDdnRsBHNsawN2bWJycwRzdGltZQMxMTUxNjAxNjg1;_> ylg=1/SIG=11qom201h/**http%3a//groups.yahoo.com/group/VulvarDisorders/member> s> Members> * > > 1> New> <http://us.lrd.yahoo.com/_ylc=X3oDMTJldnR2djVnBF9TAzk3MzU5NzE0BGdycElkAzQxMD> UwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDdnRsBHNsawN2bGlua3MEc3RpbWUDMTE1MTYwMTY4NQ> --;_ylg=1/SIG=11os6c0cj/**http%3a//groups.yahoo.com/group/VulvarDisorders/li> nks> Links> > Visit> <http://us.lrd.yahoo.com/_ylc=X3oDMTJjM2ZrazRvBF9TAzk3MzU5NzE0BGdycElkAzQxMD> UwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDdnRsBHNsawN2Z2hwBHN0aW1lAzExNTE2MDE2ODU-;_> ylg=1/SIG=11i76mmlv/**http%3a//groups.yahoo.com/group/VulvarDisorders> Your> Group >

[Guest guest]

I believe that blood tests are probably the most reliable way to go, or so seems the consensus here. Your doc may balk if you are under 45, but believe me - we've had plenty of women on this list who have suffered from 'premature ovarian failure , i.e. early menopause'. IF the doc balks, your response can and should be that given your symptoms/vaginal - vulvar problems - odds are that there may well be something wrong with your hormonal balance . And this would include, Jul - testing your thyroid function as your thyroid governs all the hormones in your body. There are certain times of the month (if you still menstruate) when testing is most valid. I don't know what they are, but others on the list do and it appears, I believe in our archives.

Again, even if you test okay on the hormones, that doesn't mean that you have enough or properly working receptors in the vulvo/vaginal area. As Dee mentioned in an earlier post - it is possible to ask for a biopsy to determine the presence of efficiency of estrogen receptors in this area. You would have to research which labs (Dee has suggested teaching hospitals - but maybe your doc knows) - will perform this test, as I'd imagine not all are equipped to do so.

Gotta tell ya, Jul - that oxalate diet did absolutely nothing for me and I was religious about it for 4 l/2 months. All that pain and my problem wasn't oxalate at all but lack of systemic hormones, thyroid imbalance, pelvic floor issues and some pretty severe allergy issues.

Good luck with testing. Hope something helps

Dusty

(P.S. if your doc refuses - find another - but if that's too inconvenient there are sites on web where blood testing is available without a doc's script I believe).

-----Original Message-----From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of femifestoSent: Saturday, July 01, 2006 8:43 AMTo: VulvarDisorders Subject: Re: NIH/VPF/oxalate testing--CORRECTION

Hi Dusty--The VPF strongly recommends that women use topical estrogen along with the low oxalate diet, calcium citrate, etc.I'm wondering, and I'm sure it's been posted on the list before, but what is the best way to have my hormones tested? Are the standard blood tests useful or not?> >> >> > We Made Changes> > Your Yahoo! Groups email is all new.> > Learn> <http://us.lrd.yahoo.com/_ylc=X3oDMTJqM2NtZjd0BF9TAzk3MzU5NzE0BF9wAzEEZ3JwSW> QDNDEwNTAEZ3Jwc3BJZAMxNjAwMDYxMzM3BHNlYwNuY21vZARzbGsDaW5mbwRzdGltZQMxMTUxNj> AxNjg1;_ylg=1/SIG=11gd5l5o4/**http%3a//groups.yahoo.com/local/newemail.html>> More> > > > Share> <http://us.lrd.yahoo.com/_ylc=X3oDMTJrMWtoMGpnBF9TAzk3MzU5NzE0BF9wAzIEZ3JwSW> QDNDEwNTAEZ3Jwc3BJZAMxNjAwMDYxMzM3BHNlYwNuY21vZARzbGsDZmRiY2sEc3RpbWUDMTE1MT> YwMTY4NQ--;_ylg=1/SIG=11im36rmb/**http%3a//surveylink.yahoo.com/wix/p1412899> .aspx> Feedback> > Recent Activity> > * > > 13> New> <http://us.lrd.yahoo.com/_ylc=X3oDMTJkbTMyamk5BF9TAzk3MzU5NzE0BGdycElkAzQxMD> UwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDdnRsBHNsawN2bWJycwRzdGltZQMxMTUxNjAxNjg1;_> ylg=1/SIG=11qom201h/**http%3a//groups.yahoo.com/group/VulvarDisorders/member> s> Members> * > > 1> New> <http://us.lrd.yahoo.com/_ylc=X3oDMTJldnR2djVnBF9TAzk3MzU5NzE0BGdycElkAzQxMD> UwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDdnRsBHNsawN2bGlua3MEc3RpbWUDMTE1MTYwMTY4NQ> --;_ylg=1/SIG=11os6c0cj/**http%3a//groups.yahoo.com/group/VulvarDisorders/li> nks> Links> > Visit> <http://us.lrd.yahoo.com/_ylc=X3oDMTJjM2ZrazRvBF9TAzk3MzU5NzE0BGdycElkAzQxMD> UwBGdycHNwSWQDMTYwMDA2MTMzNwRzZWMDdnRsBHNsawN2Z2hwBHN0aW1lAzExNTE2MDE2ODU-;_> ylg=1/SIG=11i76mmlv/**http%3a//groups.yahoo.com/group/VulvarDisorders> Your> Group >