RE: frustrated

November 25, 2002

I don't see biofeedback and physical therapy or antihistamines on your

list. I only suggest them because I've been using them and they've

helped a fair amount. (I'm also on estrace.)

> Dear everyone,

> I'm writing because I am really struggling with what to do.

I've

> been so down because I don't see an end to this disease. My

symptoms

> are vulvar vestibulitis, desquamative inflammatory, burning

> toes/fingers, pain in psoas muscle, as well as rectal burning on

BMs.

> The only thing that helped with the pain was when I did

hydrocortisone

> suppositories. Once I got off of them, the DIV came back. Here is

a

> list of the treatments I have tried:

> Estrace (only partially helped and when tried to go off of it -

> just felt worse)

> Hydrocortisone (helped but tried to go off of it - got worse)

> Cleocin (helped the discharge, but same thing - came back when

off

> of it)

> Acidophilus (no help)

> Aci-Jel/Multi-Gyn Gel (no help)

> Food allergy diet (did blood test - told me to avoid wheat and

> dairy - did this for 6 months, no relief)

> Low acid diet (no help)

> Climara patch (1 month, then stopped because I wasn't feeling

> better, so doctor told me to stop)

> Physical therapy (no help)

> Neurontin (no help)

> Emu oil/Vitamin E (no help)

> Castor oil packs (no help)

> Acupuncture/Chinese medicine (no help so far - been doing for 2

> months).

> Various homeopathics (no help)

> Procaine injections (no help)

>

> I don't know if anyone has any suggestions for things I can try

-

> I am so horribly depressed. I've had this for 2 years, since I was

22

> (6 months after college). Wanted to do natural approach as I felt

BC

> pill/antibiotic got me in this mess. I truly feel hopeless and have

> been crying constantly for the past few days. I live in Phoenix, AZ

> and have been to Dr. Gordon , Dr. Libby in North

> Carolina, and even went to Connecticut to see a naturopath who put

me

> on that low acid diet. I am really tired of traveling out-of-state,

> feel like I can't do it anymore. Does anyone have any suggestions

as

> to where I should go? I thought about Helena but when I talked to

> them, I did not get a good feeling. They were really into the food

> allergy theory - although I feel this has helped numerous women, I

> feel like I tried that diet for so long without any help. Also,

they

> told me over the phone that I probably had a hernia - went to 3

> excellent docs here who said no hernia. They also seemed to

suggest

> things that I've already tried - stool culture again - I did that,

and

> it was a big waste of $. Also, as I said, I feel as if I can't

travel

> anymore. I just don't know where to go - I realize a lot of us are

in

> the same boat, so I'm not sure why I'm writing. I guess I just feel

> so depressed and I thought I would post my frustrations to people

who

> can understand. Thanks.

>

> Seema

November 25, 2002

I don't see biofeedback and physical therapy or antihistamines on your

list. I only suggest them because I've been using them and they've

helped a fair amount. (I'm also on estrace.)

> Dear everyone,

> I'm writing because I am really struggling with what to do.

I've

> been so down because I don't see an end to this disease. My

symptoms

> are vulvar vestibulitis, desquamative inflammatory, burning

> toes/fingers, pain in psoas muscle, as well as rectal burning on

BMs.

> The only thing that helped with the pain was when I did

hydrocortisone

> suppositories. Once I got off of them, the DIV came back. Here is

a

> list of the treatments I have tried:

> Estrace (only partially helped and when tried to go off of it -

> just felt worse)

> Hydrocortisone (helped but tried to go off of it - got worse)

> Cleocin (helped the discharge, but same thing - came back when

off

> of it)

> Acidophilus (no help)

> Aci-Jel/Multi-Gyn Gel (no help)

> Food allergy diet (did blood test - told me to avoid wheat and

> dairy - did this for 6 months, no relief)

> Low acid diet (no help)

> Climara patch (1 month, then stopped because I wasn't feeling

> better, so doctor told me to stop)

> Physical therapy (no help)

> Neurontin (no help)

> Emu oil/Vitamin E (no help)

> Castor oil packs (no help)

> Acupuncture/Chinese medicine (no help so far - been doing for 2

> months).

> Various homeopathics (no help)

> Procaine injections (no help)

>

> I don't know if anyone has any suggestions for things I can try

-

> I am so horribly depressed. I've had this for 2 years, since I was

22

> (6 months after college). Wanted to do natural approach as I felt

BC

> pill/antibiotic got me in this mess. I truly feel hopeless and have

> been crying constantly for the past few days. I live in Phoenix, AZ

> and have been to Dr. Gordon , Dr. Libby in North

> Carolina, and even went to Connecticut to see a naturopath who put

me

> on that low acid diet. I am really tired of traveling out-of-state,

> feel like I can't do it anymore. Does anyone have any suggestions

as

> to where I should go? I thought about Helena but when I talked to

> them, I did not get a good feeling. They were really into the food

> allergy theory - although I feel this has helped numerous women, I

> feel like I tried that diet for so long without any help. Also,

they

> told me over the phone that I probably had a hernia - went to 3

> excellent docs here who said no hernia. They also seemed to

suggest

> things that I've already tried - stool culture again - I did that,

and

> it was a big waste of $. Also, as I said, I feel as if I can't

travel

> anymore. I just don't know where to go - I realize a lot of us are

in

> the same boat, so I'm not sure why I'm writing. I guess I just feel

> so depressed and I thought I would post my frustrations to people

who

> can understand. Thanks.

>

> Seema

November 25, 2002

I don't see biofeedback and physical therapy or antihistamines on your

list. I only suggest them because I've been using them and they've

helped a fair amount. (I'm also on estrace.)

> Dear everyone,

> I'm writing because I am really struggling with what to do.

I've

> been so down because I don't see an end to this disease. My

symptoms

> are vulvar vestibulitis, desquamative inflammatory, burning

> toes/fingers, pain in psoas muscle, as well as rectal burning on

BMs.

> The only thing that helped with the pain was when I did

hydrocortisone

> suppositories. Once I got off of them, the DIV came back. Here is

a

> list of the treatments I have tried:

> Estrace (only partially helped and when tried to go off of it -

> just felt worse)

> Hydrocortisone (helped but tried to go off of it - got worse)

> Cleocin (helped the discharge, but same thing - came back when

off

> of it)

> Acidophilus (no help)

> Aci-Jel/Multi-Gyn Gel (no help)

> Food allergy diet (did blood test - told me to avoid wheat and

> dairy - did this for 6 months, no relief)

> Low acid diet (no help)

> Climara patch (1 month, then stopped because I wasn't feeling

> better, so doctor told me to stop)

> Physical therapy (no help)

> Neurontin (no help)

> Emu oil/Vitamin E (no help)

> Castor oil packs (no help)

> Acupuncture/Chinese medicine (no help so far - been doing for 2

> months).

> Various homeopathics (no help)

> Procaine injections (no help)

>

> I don't know if anyone has any suggestions for things I can try

-

> I am so horribly depressed. I've had this for 2 years, since I was

22

> (6 months after college). Wanted to do natural approach as I felt

BC

> pill/antibiotic got me in this mess. I truly feel hopeless and have

> been crying constantly for the past few days. I live in Phoenix, AZ

> and have been to Dr. Gordon , Dr. Libby in North

> Carolina, and even went to Connecticut to see a naturopath who put

me

> on that low acid diet. I am really tired of traveling out-of-state,

> feel like I can't do it anymore. Does anyone have any suggestions

as

> to where I should go? I thought about Helena but when I talked to

> them, I did not get a good feeling. They were really into the food

> allergy theory - although I feel this has helped numerous women, I

> feel like I tried that diet for so long without any help. Also,

they

> told me over the phone that I probably had a hernia - went to 3

> excellent docs here who said no hernia. They also seemed to

suggest

> things that I've already tried - stool culture again - I did that,

and

> it was a big waste of $. Also, as I said, I feel as if I can't

travel

> anymore. I just don't know where to go - I realize a lot of us are

in

> the same boat, so I'm not sure why I'm writing. I guess I just feel

> so depressed and I thought I would post my frustrations to people

who

> can understand. Thanks.

>

> Seema

November 25, 2002

Seema,

Have you tried a strict candida free diet with antifungals..that gave me

relief.

susan

November 25, 2002

Seema,

Have you tried a strict candida free diet with antifungals..that gave me

relief.

susan

November 25, 2002

HI Seema,

I'm sorry for all you've gone through, but hon...... I saw quite a few things you listed and said they helped, but then you said when you went off of them it came back. My question is, if it or something was helping why did you go off? Many times, some things just need maintenance on an 'as needed' basis. Some need a continuing maintenance of the Steroids, the Protopic or myself with the hormone creams of E & T. approx. twice a week, but it can keep things under control.

With some of us especially if it's that genetic connection (might be as high as 53%) and those malfunctioning alleles, it may be the best we can do and not look for a permanent cure but control. Just wondering.

Dee~ ; )

November 25, 2002

HI Seema,

I'm sorry for all you've gone through, but hon...... I saw quite a few things you listed and said they helped, but then you said when you went off of them it came back. My question is, if it or something was helping why did you go off? Many times, some things just need maintenance on an 'as needed' basis. Some need a continuing maintenance of the Steroids, the Protopic or myself with the hormone creams of E & T. approx. twice a week, but it can keep things under control.

With some of us especially if it's that genetic connection (might be as high as 53%) and those malfunctioning alleles, it may be the best we can do and not look for a permanent cure but control. Just wondering.

Dee~ ; )

November 25, 2002

HI Seema,

I'm sorry for all you've gone through, but hon...... I saw quite a few things you listed and said they helped, but then you said when you went off of them it came back. My question is, if it or something was helping why did you go off? Many times, some things just need maintenance on an 'as needed' basis. Some need a continuing maintenance of the Steroids, the Protopic or myself with the hormone creams of E & T. approx. twice a week, but it can keep things under control.

With some of us especially if it's that genetic connection (might be as high as 53%) and those malfunctioning alleles, it may be the best we can do and not look for a permanent cure but control. Just wondering.

Dee~ ; )

November 25, 2002

You didn't mention the low oxalate diet? Have you tried that.

Ora

>Dear everyone,

> I'm writing because I am really struggling with what to do. I've

>been so down because I don't see an end to this disease. My symptoms

>are vulvar vestibulitis, desquamative inflammatory, burning

>toes/fingers, pain in psoas muscle, as well as rectal burning on BMs.

>The only thing that helped with the pain was when I did hydrocortisone

>suppositories. Once I got off of them, the DIV came back. Here is a

>list of the treatments I have tried:

> Estrace (only partially helped and when tried to go off of it -

>just felt worse)

> Hydrocortisone (helped but tried to go off of it - got worse)

> Cleocin (helped the discharge, but same thing - came back when off

>of it)

> Acidophilus (no help)

> Aci-Jel/Multi-Gyn Gel (no help)

> Food allergy diet (did blood test - told me to avoid wheat and

>dairy - did this for 6 months, no relief)

> Low acid diet (no help)

> Climara patch (1 month, then stopped because I wasn't feeling

>better, so doctor told me to stop)

> Physical therapy (no help)

> Neurontin (no help)

> Emu oil/Vitamin E (no help)

> Castor oil packs (no help)

> Acupuncture/Chinese medicine (no help so far - been doing for 2

>months).

> Various homeopathics (no help)

> Procaine injections (no help)

>

> I don't know if anyone has any suggestions for things I can try -

>I am so horribly depressed. I've had this for 2 years, since I was 22

>(6 months after college). Wanted to do natural approach as I felt BC

>pill/antibiotic got me in this mess. I truly feel hopeless and have

>been crying constantly for the past few days. I live in Phoenix, AZ

>and have been to Dr. Gordon , Dr. Libby in North

>Carolina, and even went to Connecticut to see a naturopath who put me

>on that low acid diet. I am really tired of traveling out-of-state,

>feel like I can't do it anymore. Does anyone have any suggestions as

>to where I should go? I thought about Helena but when I talked to

>them, I did not get a good feeling. They were really into the food

>allergy theory - although I feel this has helped numerous women, I

>feel like I tried that diet for so long without any help. Also, they

>told me over the phone that I probably had a hernia - went to 3

>excellent docs here who said no hernia. They also seemed to suggest

>things that I've already tried - stool culture again - I did that, and

>it was a big waste of $. Also, as I said, I feel as if I can't travel

>anymore. I just don't know where to go - I realize a lot of us are in

>the same boat, so I'm not sure why I'm writing. I guess I just feel

>so depressed and I thought I would post my frustrations to people who

>can understand. Thanks.

>

>Seema

>

November 25, 2002