RE: frustrated

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

Seema,

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

relief.

susan

[Guest guest]

Seema,

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

relief.

susan

[Guest guest]

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~ ; )

[Guest guest]

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~ ; )

[Guest guest]

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~ ; )

[Guest guest]

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

>

>

[Guest guest]

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

>

>

[Guest guest]

Do you cook your veggies? I cannot handle raw vegetables but if I cook them

they treat me much better.

Ora

>Hi Ora,

> I did a modified version of it when I did my low acid diet - I was

>also using Calcium Citrate. As a vegetarian (cultural beliefs), I

>found it hard to fully do. Thank you for the suggestion

>

>Seema

>

>

>

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

>>

>> Ora

>>

>>

>>

>>

[Guest guest]

Do you cook your veggies? I cannot handle raw vegetables but if I cook them

they treat me much better.

Ora

>Hi Ora,

> I did a modified version of it when I did my low acid diet - I was

>also using Calcium Citrate. As a vegetarian (cultural beliefs), I

>found it hard to fully do. Thank you for the suggestion

>

>Seema

>

>

>

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

>>

>> Ora

>>

>>

>>

>>

[Guest guest]

Do you cook your veggies? I cannot handle raw vegetables but if I cook them

they treat me much better.

Ora

>Hi Ora,

> I did a modified version of it when I did my low acid diet - I was

>also using Calcium Citrate. As a vegetarian (cultural beliefs), I

>found it hard to fully do. Thank you for the suggestion

>

>Seema

>

>

>

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

>>

>> Ora

>>

>>

>>

>>

[Guest guest]

> Only thing in my family is heart disease. I knew

>that I was a completely normal person with no problems at all until I

>used the medications that doctors gave me.

>Seema

Why did the doctors give you medications if you did not have any problems. Just

curious.

Ora

[Guest guest]

> Only thing in my family is heart disease. I knew

>that I was a completely normal person with no problems at all until I

>used the medications that doctors gave me.

>Seema

Why did the doctors give you medications if you did not have any problems. Just

curious.

Ora

[Guest guest]

> Only thing in my family is heart disease. I knew

>that I was a completely normal person with no problems at all until I

>used the medications that doctors gave me.

>Seema

Why did the doctors give you medications if you did not have any problems. Just

curious.

Ora

[Guest guest]

Hi Ora,

I did a modified version of it when I did my low acid diet - I was

also using Calcium Citrate. As a vegetarian (cultural beliefs), I

found it hard to fully do. Thank you for the suggestion

Seema

>

> >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

> >

> >

[Guest guest]

Hi Ora,

I did a modified version of it when I did my low acid diet - I was

also using Calcium Citrate. As a vegetarian (cultural beliefs), I

found it hard to fully do. Thank you for the suggestion

Seema

>

> >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

> >

> >

[Guest guest]

Hi Ora,

I did a modified version of it when I did my low acid diet - I was

also using Calcium Citrate. As a vegetarian (cultural beliefs), I

found it hard to fully do. Thank you for the suggestion

Seema

>

> >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

> >

> >

[Guest guest]

Hi Dee,

I went off the Cleocin because I did not want to be on an

antibiotic continuously. The Estrace helped only in a minor way, not

enough so that I could have intercourse, not enough for me to be able

to dance again. So my doctor had told me to stop it as he didn't feel

that it was really getting to the root of this. Also, my doctor also

said that he did not want me using steroids long-term. I used them

for 2 months, then he wanted me to taper off. When I tried to taper

off, and I just got worse, then he felt I should not continue. I

know, for me, there is no genetic connection - no one in my mom's side

or dad's side of the family has even had gynecological problems or

immune dysfunction. Only thing in my family is heart disease. I knew

that I was a completely normal person with no problems at all until I

used the medications that doctors gave me. Plus, I have other

symptoms that a gyn ignores, like burning toes and fingers and psoas

pain which I feel are all related. I guess I don't like treating the

symptoms only to get more side effects from the treatments they have

given me. Thanks.

Seema

> 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~ ; )

[Guest guest]

Hi Dee,

I went off the Cleocin because I did not want to be on an

antibiotic continuously. The Estrace helped only in a minor way, not

enough so that I could have intercourse, not enough for me to be able

to dance again. So my doctor had told me to stop it as he didn't feel

that it was really getting to the root of this. Also, my doctor also

said that he did not want me using steroids long-term. I used them

for 2 months, then he wanted me to taper off. When I tried to taper

off, and I just got worse, then he felt I should not continue. I

know, for me, there is no genetic connection - no one in my mom's side

or dad's side of the family has even had gynecological problems or

immune dysfunction. Only thing in my family is heart disease. I knew

that I was a completely normal person with no problems at all until I

used the medications that doctors gave me. Plus, I have other

symptoms that a gyn ignores, like burning toes and fingers and psoas

pain which I feel are all related. I guess I don't like treating the

symptoms only to get more side effects from the treatments they have

given me. Thanks.

Seema

> 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~ ; )

[Guest guest]

Bactrim is a sulfa drug - many people are allergic to sulfa drugs. Have you

taken it since then?

You are right about the BC pills. Sometimes they do that.

Ora

>I used Bactrim for a UTI I got after sex - I didn't think it would be

>a big deal, since I never had a problem with an antibiotic. The other

>medication I was on was birth control pills. I think those 2 screwed

>my body up and now I don't know why I can't get back to normal. I

>think a lot of women on this list feel BC pills messed things up.

>

>

>>

>> > Only thing in my family is heart disease. I knew

>> >that I was a completely normal person with no problems at all until

>I

>> >used the medications that doctors gave me.

>> >Seema

>>

>> Why did the doctors give you medications if you did not have any

>problems. Just

>> curious.

>>

>> Ora

>

[Guest guest]

Bactrim is a sulfa drug - many people are allergic to sulfa drugs. Have you

taken it since then?

You are right about the BC pills. Sometimes they do that.

Ora

>I used Bactrim for a UTI I got after sex - I didn't think it would be

>a big deal, since I never had a problem with an antibiotic. The other

>medication I was on was birth control pills. I think those 2 screwed

>my body up and now I don't know why I can't get back to normal. I

>think a lot of women on this list feel BC pills messed things up.

>

>

>>

>> > Only thing in my family is heart disease. I knew

>> >that I was a completely normal person with no problems at all until

>I

>> >used the medications that doctors gave me.

>> >Seema

>>

>> Why did the doctors give you medications if you did not have any

>problems. Just

>> curious.

>>

>> Ora

>

[Guest guest]

Bactrim is a sulfa drug - many people are allergic to sulfa drugs. Have you

taken it since then?

You are right about the BC pills. Sometimes they do that.

Ora

>I used Bactrim for a UTI I got after sex - I didn't think it would be

>a big deal, since I never had a problem with an antibiotic. The other

>medication I was on was birth control pills. I think those 2 screwed

>my body up and now I don't know why I can't get back to normal. I

>think a lot of women on this list feel BC pills messed things up.

>

>

>>

>> > Only thing in my family is heart disease. I knew

>> >that I was a completely normal person with no problems at all until

>I

>> >used the medications that doctors gave me.

>> >Seema

>>

>> Why did the doctors give you medications if you did not have any

>problems. Just

>> curious.

>>

>> Ora

>

[Guest guest]

I used Bactrim for a UTI I got after sex - I didn't think it would be

a big deal, since I never had a problem with an antibiotic. The other

medication I was on was birth control pills. I think those 2 screwed

my body up and now I don't know why I can't get back to normal. I

think a lot of women on this list feel BC pills messed things up.

>

> > Only thing in my family is heart disease. I knew

> >that I was a completely normal person with no problems at all until

I

> >used the medications that doctors gave me.

> >Seema

>

> Why did the doctors give you medications if you did not have any

problems. Just

> curious.

>

> Ora