Re: Update on trying cat's claw

[Guest guest]

Hey Sally,

Do you have vulvar vestibulitis syndrom? or Dysesthetic vulvodynia? Something I wondered for those out there with lyme and vvs is.... if the chronic inflammation caused the proliferation of the nerves in the vestibule, would getting rid of the cause of the inflammation help with the vvs? I would think that the inflammation would contribute to the pain... but it could just be that once the nerves proliferate there in the vestibule there might always be some pain or more sensitivity unless the nerves are cut out with surgery. What do you think?

I'm guessing, I just don't know... but it's something I wondered about.

Update on trying cat's claw

I wanted to give you an update on my experiement with trying cat's claw as a treatment for lyme that might then reduce my vvs pain. I've been taking a gradually increasing dose for about a month now with no change in my pain. I'm going to give it some more time and we'll see if this situation changes. But, since I e-mailed about it when I started it, I thought that some of you following the lyme relationship would be interested in an update. Sally

[Guest guest]

Hey Sally,

Do you have vulvar vestibulitis syndrom? or Dysesthetic vulvodynia? Something I wondered for those out there with lyme and vvs is.... if the chronic inflammation caused the proliferation of the nerves in the vestibule, would getting rid of the cause of the inflammation help with the vvs? I would think that the inflammation would contribute to the pain... but it could just be that once the nerves proliferate there in the vestibule there might always be some pain or more sensitivity unless the nerves are cut out with surgery. What do you think?

I'm guessing, I just don't know... but it's something I wondered about.

Update on trying cat's claw

I wanted to give you an update on my experiement with trying cat's claw as a treatment for lyme that might then reduce my vvs pain. I've been taking a gradually increasing dose for about a month now with no change in my pain. I'm going to give it some more time and we'll see if this situation changes. But, since I e-mailed about it when I started it, I thought that some of you following the lyme relationship would be interested in an update. Sally

[Guest guest]

Hey Sally,

Do you have vulvar vestibulitis syndrom? or Dysesthetic vulvodynia? Something I wondered for those out there with lyme and vvs is.... if the chronic inflammation caused the proliferation of the nerves in the vestibule, would getting rid of the cause of the inflammation help with the vvs? I would think that the inflammation would contribute to the pain... but it could just be that once the nerves proliferate there in the vestibule there might always be some pain or more sensitivity unless the nerves are cut out with surgery. What do you think?

I'm guessing, I just don't know... but it's something I wondered about.

Update on trying cat's claw

I wanted to give you an update on my experiement with trying cat's claw as a treatment for lyme that might then reduce my vvs pain. I've been taking a gradually increasing dose for about a month now with no change in my pain. I'm going to give it some more time and we'll see if this situation changes. But, since I e-mailed about it when I started it, I thought that some of you following the lyme relationship would be interested in an update. Sally

[Guest guest]

Thanks Sally for the update on the Cat's claw...... even tho it's not working (maybe yet?) it's good to know which ever way it goes to make others aware as well. Every bit of info helps.

Thanks honDee~

[Guest guest]

:

The hope from the Lyme Docs is that with the Lyme treatment the

vulvar pain will get better. But, I agree once the pain is " turned

on " we may have to train the nerves to " turn it off " My experience

with my Lyme treatment and proper (high alkaline) diet is that I

went from a 10 to a 3. Still have a way to go with the Lyme

treatment so hopefully I will continue to improve. My Lyme also

causes pain in my left buttox (pain in the butt!) and when I'm

herxing it goes to the identical place in my right buttox. Lyme

causes very strange things to happen.

Some people are wheelchair bound with pain and they experience

complete recovery (usually takes a couple years but we're talking

complete recovery) so I'm hoping that the V pain can do the same.

Sally:

I think it will take a little more time with the cat's claw. Are

you taking the Samento version? Especially since you are

still " dosing up " hopefully it will help you.

Hugs

Molly

>

> Hey Sally,

> Do you have vulvar vestibulitis syndrom? or Dysesthetic

vulvodynia? Something I wondered for those out there with lyme and

vvs is.... if the chronic inflammation caused the proliferation of

the nerves in the vestibule, would getting rid of the cause of the

inflammation help with the vvs? I would think that the inflammation

would contribute to the pain... but it could just be that once the

nerves proliferate there in the vestibule there might always be some

pain or more sensitivity unless the nerves are cut out with surgery.

What do you think?

> I'm guessing, I just don't know... but it's something I wondered

about.

>

> Update on trying cat's claw

>

>

> I wanted to give you an update on my experiement with trying

cat's claw

> as a treatment for lyme that might then reduce my vvs pain. I've

been

> taking a gradually increasing dose for about a month now with no

change

> in my pain. I'm going to give it some more time and we'll see if

this

> situation changes. But, since I e-mailed about it when I started

it, I

> thought that some of you following the lyme relationship would

be

> interested in an update.

>

> Sally

>

[Guest guest]

:

The hope from the Lyme Docs is that with the Lyme treatment the

vulvar pain will get better. But, I agree once the pain is " turned

on " we may have to train the nerves to " turn it off " My experience

with my Lyme treatment and proper (high alkaline) diet is that I

went from a 10 to a 3. Still have a way to go with the Lyme

treatment so hopefully I will continue to improve. My Lyme also

causes pain in my left buttox (pain in the butt!) and when I'm

herxing it goes to the identical place in my right buttox. Lyme

causes very strange things to happen.

Some people are wheelchair bound with pain and they experience

complete recovery (usually takes a couple years but we're talking

complete recovery) so I'm hoping that the V pain can do the same.

Sally:

I think it will take a little more time with the cat's claw. Are

you taking the Samento version? Especially since you are

still " dosing up " hopefully it will help you.

Hugs

Molly

>

> Hey Sally,

> Do you have vulvar vestibulitis syndrom? or Dysesthetic

vulvodynia? Something I wondered for those out there with lyme and

vvs is.... if the chronic inflammation caused the proliferation of

the nerves in the vestibule, would getting rid of the cause of the

inflammation help with the vvs? I would think that the inflammation

would contribute to the pain... but it could just be that once the

nerves proliferate there in the vestibule there might always be some

pain or more sensitivity unless the nerves are cut out with surgery.

What do you think?

> I'm guessing, I just don't know... but it's something I wondered

about.

>

> Update on trying cat's claw

>

>

> I wanted to give you an update on my experiement with trying

cat's claw

> as a treatment for lyme that might then reduce my vvs pain. I've

been

> taking a gradually increasing dose for about a month now with no

change

> in my pain. I'm going to give it some more time and we'll see if

this

> situation changes. But, since I e-mailed about it when I started

it, I

> thought that some of you following the lyme relationship would

be

> interested in an update.

>

> Sally

>

[Guest guest]

:

The hope from the Lyme Docs is that with the Lyme treatment the

vulvar pain will get better. But, I agree once the pain is " turned

on " we may have to train the nerves to " turn it off " My experience

with my Lyme treatment and proper (high alkaline) diet is that I

went from a 10 to a 3. Still have a way to go with the Lyme

treatment so hopefully I will continue to improve. My Lyme also

causes pain in my left buttox (pain in the butt!) and when I'm

herxing it goes to the identical place in my right buttox. Lyme

causes very strange things to happen.

Some people are wheelchair bound with pain and they experience

complete recovery (usually takes a couple years but we're talking

complete recovery) so I'm hoping that the V pain can do the same.

Sally:

I think it will take a little more time with the cat's claw. Are

you taking the Samento version? Especially since you are

still " dosing up " hopefully it will help you.

Hugs

Molly

>

> Hey Sally,

> Do you have vulvar vestibulitis syndrom? or Dysesthetic

vulvodynia? Something I wondered for those out there with lyme and

vvs is.... if the chronic inflammation caused the proliferation of

the nerves in the vestibule, would getting rid of the cause of the

inflammation help with the vvs? I would think that the inflammation

would contribute to the pain... but it could just be that once the

nerves proliferate there in the vestibule there might always be some

pain or more sensitivity unless the nerves are cut out with surgery.

What do you think?

> I'm guessing, I just don't know... but it's something I wondered

about.

>

> Update on trying cat's claw

>

>

> I wanted to give you an update on my experiement with trying

cat's claw

> as a treatment for lyme that might then reduce my vvs pain. I've

been

> taking a gradually increasing dose for about a month now with no

change

> in my pain. I'm going to give it some more time and we'll see if

this

> situation changes. But, since I e-mailed about it when I started

it, I

> thought that some of you following the lyme relationship would

be

> interested in an update.

>

> Sally

>

[Guest guest]

Hi - I believe that I have vulvar vestibulitis. I have pain

only with intercourse. It started about seven years ago shortly before

I was diagnosed with endometriosis. I am the world's biggest skeptic

after so many years of trying so many different things and having

nothing help with this pain. I'm having a hard time understanding why

lyme could cause such a localized pain problem and not also cause other

symptoms. Possibly, I am experiencing other things related to lyme,

but I can't really identify those. But, after hearing Dr. Metzger's

advice that she had other patients with the same symptoms I have get

better with lyme treatment including cat's claw, I had to give it a

try. I know that these treatments sometimes take a long time to work,

so I am not giving up on it yet.

I definately see the logic of the possibility that you mentioned - that

even if you get rid of the source of the inflammation, the nerve

reaction will remain because it's been trained.

Today, I just was put in contact with another woman in the town I live

in who had a successful vestibulectomy. I haven't talked directly with

her about it yet, but I am getting closer and closer to thinking that I

have to give the surgery a try. I know that I'm saying that right

after saying that I'm still going to give the cat's claw more of a

chance.

I'm just totally exhausted, stressed out, and completely sick of this

condition. I literally am losing my interest in the life ahead of me.

This is such a tough battle to fight, because it is so long and so

discouraging. Oh well, sometimes I just have to express those thoughts

that follow me around every day. Thanks to all of you for your support

and giving me the knowledge that I'm not alone.

-- In VulvarDisorders , " Berry Home "

wrote:

>

> Hey Sally,

> Do you have vulvar vestibulitis syndrom? or Dysesthetic vulvodynia?

Something I wondered for those out there with lyme and vvs is.... if

the chronic inflammation caused the proliferation of the nerves in the

vestibule, would getting rid of the cause of the inflammation help with

the vvs? I would think that the inflammation would contribute to the

pain... but it could just be that once the nerves proliferate there in

the vestibule there might always be some pain or more sensitivity

unless the nerves are cut out with surgery. What do you think?

> I'm guessing, I just don't know... but it's something I wondered

about.

>

[Guest guest]

Hi - I believe that I have vulvar vestibulitis. I have pain

only with intercourse. It started about seven years ago shortly before

I was diagnosed with endometriosis. I am the world's biggest skeptic

after so many years of trying so many different things and having

nothing help with this pain. I'm having a hard time understanding why

lyme could cause such a localized pain problem and not also cause other

symptoms. Possibly, I am experiencing other things related to lyme,

but I can't really identify those. But, after hearing Dr. Metzger's

advice that she had other patients with the same symptoms I have get

better with lyme treatment including cat's claw, I had to give it a

try. I know that these treatments sometimes take a long time to work,

so I am not giving up on it yet.

I definately see the logic of the possibility that you mentioned - that

even if you get rid of the source of the inflammation, the nerve

reaction will remain because it's been trained.

Today, I just was put in contact with another woman in the town I live

in who had a successful vestibulectomy. I haven't talked directly with

her about it yet, but I am getting closer and closer to thinking that I

have to give the surgery a try. I know that I'm saying that right

after saying that I'm still going to give the cat's claw more of a

chance.

I'm just totally exhausted, stressed out, and completely sick of this

condition. I literally am losing my interest in the life ahead of me.

This is such a tough battle to fight, because it is so long and so

discouraging. Oh well, sometimes I just have to express those thoughts

that follow me around every day. Thanks to all of you for your support

and giving me the knowledge that I'm not alone.

-- In VulvarDisorders , " Berry Home "

wrote:

>

> Hey Sally,

> Do you have vulvar vestibulitis syndrom? or Dysesthetic vulvodynia?

Something I wondered for those out there with lyme and vvs is.... if

the chronic inflammation caused the proliferation of the nerves in the

vestibule, would getting rid of the cause of the inflammation help with

the vvs? I would think that the inflammation would contribute to the

pain... but it could just be that once the nerves proliferate there in

the vestibule there might always be some pain or more sensitivity

unless the nerves are cut out with surgery. What do you think?

> I'm guessing, I just don't know... but it's something I wondered

about.

>

[Guest guest]

Hey Sally,

If you've been diagnosed with lyme I would definitely keep

up the cat's claw. I believe the cat's claw is good for the

immune system in general too, isn't it?

I would definitely give it some months... I think the cat's

claw you usually take for 10 months or so, don't you? I hope

it helps. : )

> Hi - I believe that I have vulvar vestibulitis. I

> have pain only with intercourse. It started about seven

> years ago shortly before I was diagnosed with

> endometriosis. I am the world's biggest skeptic after so

> many years of trying so many different things and having

> nothing help with this pain. I'm having a hard time

> understanding why lyme could cause such a localized pain

> problem and not also cause other symptoms. Possibly, I

> am experiencing other things related to lyme, but I ca

n't

> really identify those. But, after hearing Dr. Metzger's

> advice that she had other patients with the same symptoms

> I have get better with lyme treatment including cat's

> claw, I had to give it a try. I know that these

> treatments sometimes take a long time to work, so I am

> not giving up on it yet.

>

> I definately see the logic of the possibility that you

> mentioned - that even if you get rid of the source of the

> inflammation, the nerve reaction will remain because it's

> been trained.

>

> Today, I just was put in contact with another woman in the

> town I live in who had a successful vestibulectomy. I

> haven't talked directly with her about it yet, but I am

> getting closer and closer to thinking that I have to give

> the surgery a try. I know that I'm saying that right

> after saying that I'm still going to give the cat's claw

> more of a chance.

>

> I'm just totally exhausted, stressed out, and completely

> sick of this condition. I literally am losing my

> interest in the life ahead of me. This is such a tough

> battle to fight, because it is so long and so

> discouraging. Oh well, sometimes I just have to express

> those thoughts that follow me around every day. Thanks

> to all of you for your support and giving me the

> knowledge that I'm not alone.

>

>

>

> -- In VulvarDisorders , " Berry Home "

> wrote:

> >

> > Hey Sally,

> > Do you have vulvar vestibulitis syndrom? or Dysesthetic

> vulvodynia? Something I wondered for those out there with

> lyme and vvs is.... if the chronic inflammation caused

> the proliferation of the nerves in the vestibule, would

> getting rid of the cause of the inflammation help with

> the vvs? I would think that the inflammation would

> contribute to the pain... but it could just be that once

> the nerves proliferate there in the vestibule there might

> always be some pain or more sensitivity unless the nerves

> > are cut out with surgery. What do you think? I'm

> guessing, I just don't know... but it's something I

> wondered about.

> >

>

>

>

>

[Guest guest]

That's excellent if your pain went from 10 to 3... guess it

just takes time then. And might make a difference too how

long the person has had lyme before starting tretment?

That's great, though....

> :

>

> The hope from the Lyme Docs is that with the Lyme

> treatment the vulvar pain will get better. But, I agree

> once the pain is " turned on " we may have to train the

> nerves to " turn it off " My experience with my Lyme

> treatment and proper (high alkaline) diet is that I went

> from a 10 to a 3. Still have a way to go with the Lyme

> treatment so hopefully I will continue to improve. My

> Lyme also causes pain in my left buttox (pain in the

> butt!) and when I'm herxing it goes to the identical

> place in my right buttox. Lyme causes very strange

> things to happen.

>

> Some people are wheelchair bound with pain and they

> experience complete recovery (usually takes a couple

> years but we're talking complete recovery) so I'm hoping

> that the V pain can do the same.

>

> Sally:

>

> I think it will take a little more time with the cat's

> claw. Are you taking the Samento version? Especially

> since you are still " dosing up " hopefully it will help

> you.

>

> Hugs

>

> Molly

>

>

>

>

>

> >

> > Hey Sally,

> > Do you have vulvar vestibulitis syndrom? or Dysesthetic

> vulvodynia? Something I wondered for those out there with

> lyme and vvs is.... if the chronic inflammation caused

> the proliferation of the nerves in the vestibule, would

> getting rid of the cause of the inflammation help with

> the vvs? I would think that the inflammation would

> contribute to the pain... but it could just be that once

> the nerves proliferate there in the vestibule there might

> always be some pain or more sensitivity unless the nerves

> are cut out with surgery. What do you think?

> > I'm guessing, I just don't know... but it's something I

> wondered about.

> >

> > Update on trying cat's claw

> >

> >

> > I wanted to give you an update on my experiement with

> trying cat's claw

> > as a treatment for lyme that might then reduce my vvs

> pain. I've been

> > taking a gradually increasing dose for about a month

> now with no change

> > in my pain. I'm going to give it some more time and

> we'll see if this

> > situation changes. But, since I e-mailed about it when

> I started it, I

> > thought that some of you following the lyme

> relationship would be

> > interested in an update.

> >

> > Sally

> >

>

>

>

>

[Guest guest]

That's excellent if your pain went from 10 to 3... guess it

just takes time then. And might make a difference too how

long the person has had lyme before starting tretment?

That's great, though....

> :

>

> The hope from the Lyme Docs is that with the Lyme

> treatment the vulvar pain will get better. But, I agree

> once the pain is " turned on " we may have to train the

> nerves to " turn it off " My experience with my Lyme

> treatment and proper (high alkaline) diet is that I went

> from a 10 to a 3. Still have a way to go with the Lyme

> treatment so hopefully I will continue to improve. My

> Lyme also causes pain in my left buttox (pain in the

> butt!) and when I'm herxing it goes to the identical

> place in my right buttox. Lyme causes very strange

> things to happen.

>

> Some people are wheelchair bound with pain and they

> experience complete recovery (usually takes a couple

> years but we're talking complete recovery) so I'm hoping

> that the V pain can do the same.

>

> Sally:

>

> I think it will take a little more time with the cat's

> claw. Are you taking the Samento version? Especially

> since you are still " dosing up " hopefully it will help

> you.

>

> Hugs

>

> Molly

>

>

>

>

>

> >

> > Hey Sally,

> > Do you have vulvar vestibulitis syndrom? or Dysesthetic

> vulvodynia? Something I wondered for those out there with

> lyme and vvs is.... if the chronic inflammation caused

> the proliferation of the nerves in the vestibule, would

> getting rid of the cause of the inflammation help with

> the vvs? I would think that the inflammation would

> contribute to the pain... but it could just be that once

> the nerves proliferate there in the vestibule there might

> always be some pain or more sensitivity unless the nerves

> are cut out with surgery. What do you think?

> > I'm guessing, I just don't know... but it's something I

> wondered about.

> >

> > Update on trying cat's claw

> >

> >

> > I wanted to give you an update on my experiement with

> trying cat's claw

> > as a treatment for lyme that might then reduce my vvs

> pain. I've been

> > taking a gradually increasing dose for about a month

> now with no change

> > in my pain. I'm going to give it some more time and

> we'll see if this

> > situation changes. But, since I e-mailed about it when

> I started it, I

> > thought that some of you following the lyme

> relationship would be

> > interested in an update.

> >

> > Sally

> >

>

>

>

>

[Guest guest]

Hi, As you all know, I got well from nerve blocks and physical therapy. However, I am thinking about getting tested for Lyme. Lyme fits well into my view of pelvic pain. I believe that we all have a camel partially loaded. Mine was a lifetime of riding horses, an unstable SI joint, fallen arches, bad posture, and maybe Lyme? (I remember my mom picking ticks off me all the time and I was actually bitten lots of times). Then I had a baby and that was the straw that broke the camel's back and all hell broke loose and I end up with IC, V V, and pudendal neuralgia (well, I think IC and VV is pudendal neuralgia, but that's a different post). Well, how many people have babies and don't end up with this? How many people ride horses and have all my other problems and don't end up with this? Well, I think that perhaps if you throw Lyme into the mix, if it's true what they say, that it thins the

myelin sheath on the nerves, then perhaps we are more susceptable to chronic pain. Anyway, I want to get tested so I don't have to deal with anything else Lyme related. So, I guess what I'm trying to say, is don't expect the Lyme treatment to cure your pain. I believe that the Lyme treatment will make you stronger so that you can better fight it with other treatments like Physical therapy. Perhaps your nerves will be healthier, but you may still have pelvic floor contracture, unstable SI joint compromising your pudendal nerve, etc... love, Mollysally_bibb wrote: Hi - I believe that I have vulvar vestibulitis. I have pain only with intercourse. It started about seven years ago shortly before I was diagnosed with endometriosis. I am the world's biggest skeptic after so many years of trying so many different things and having nothing help with this pain. I'm having a hard time understanding why lyme could cause such a localized pain problem and not also cause other symptoms. Possibly, I am experiencing other things related to lyme, but I can't really identify those. But, after hearing Dr. Metzger's advice that she had other patients with the same symptoms I have get better with lyme treatment including cat's claw, I had to give it a try. I know that these treatments sometimes take a long time to work, so I am not giving up on it

yet. I definately see the logic of the possibility that you mentioned - that even if you get rid of the source of the inflammation, the nerve reaction will remain because it's been trained. Today, I just was put in contact with another woman in the town I live in who had a successful vestibulectomy. I haven't talked directly with her about it yet, but I am getting closer and closer to thinking that I have to give the surgery a try. I know that I'm saying that right after saying that I'm still going to give the cat's claw more of a chance. I'm just totally exhausted, stressed out, and completely sick of this condition. I literally am losing my interest in the life ahead of me. This is such a tough battle to fight, because it is so long and so discouraging. Oh well, sometimes I just have to express those thoughts that follow me around every day. Thanks to all of you for your support and giving me the

knowledge that I'm not alone. -- In VulvarDisorders , " Berry Home" wrote:>> Hey Sally, > Do you have vulvar vestibulitis syndrom? or Dysesthetic vulvodynia? Something I wondered for those out there with lyme and vvs is.... if the chronic inflammation caused the proliferation of the nerves in the vestibule, would getting rid of the cause of the inflammation help with the vvs? I would think that the inflammation would contribute to the pain... but it could just be that once the nerves proliferate there in the vestibule there might always be some pain or more sensitivity unless the nerves are cut out with surgery. What do you think?> I'm guessing, I just don't know... but it's something I wondered about. >

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Hi, As you all know, I got well from nerve blocks and physical therapy. However, I am thinking about getting tested for Lyme. Lyme fits well into my view of pelvic pain. I believe that we all have a camel partially loaded. Mine was a lifetime of riding horses, an unstable SI joint, fallen arches, bad posture, and maybe Lyme? (I remember my mom picking ticks off me all the time and I was actually bitten lots of times). Then I had a baby and that was the straw that broke the camel's back and all hell broke loose and I end up with IC, V V, and pudendal neuralgia (well, I think IC and VV is pudendal neuralgia, but that's a different post). Well, how many people have babies and don't end up with this? How many people ride horses and have all my other problems and don't end up with this? Well, I think that perhaps if you throw Lyme into the mix, if it's true what they say, that it thins the

myelin sheath on the nerves, then perhaps we are more susceptable to chronic pain. Anyway, I want to get tested so I don't have to deal with anything else Lyme related. So, I guess what I'm trying to say, is don't expect the Lyme treatment to cure your pain. I believe that the Lyme treatment will make you stronger so that you can better fight it with other treatments like Physical therapy. Perhaps your nerves will be healthier, but you may still have pelvic floor contracture, unstable SI joint compromising your pudendal nerve, etc... love, Mollysally_bibb wrote: Hi - I believe that I have vulvar vestibulitis. I have pain only with intercourse. It started about seven years ago shortly before I was diagnosed with endometriosis. I am the world's biggest skeptic after so many years of trying so many different things and having nothing help with this pain. I'm having a hard time understanding why lyme could cause such a localized pain problem and not also cause other symptoms. Possibly, I am experiencing other things related to lyme, but I can't really identify those. But, after hearing Dr. Metzger's advice that she had other patients with the same symptoms I have get better with lyme treatment including cat's claw, I had to give it a try. I know that these treatments sometimes take a long time to work, so I am not giving up on it

yet. I definately see the logic of the possibility that you mentioned - that even if you get rid of the source of the inflammation, the nerve reaction will remain because it's been trained. Today, I just was put in contact with another woman in the town I live in who had a successful vestibulectomy. I haven't talked directly with her about it yet, but I am getting closer and closer to thinking that I have to give the surgery a try. I know that I'm saying that right after saying that I'm still going to give the cat's claw more of a chance. I'm just totally exhausted, stressed out, and completely sick of this condition. I literally am losing my interest in the life ahead of me. This is such a tough battle to fight, because it is so long and so discouraging. Oh well, sometimes I just have to express those thoughts that follow me around every day. Thanks to all of you for your support and giving me the

knowledge that I'm not alone. -- In VulvarDisorders , " Berry Home" wrote:>> Hey Sally, > Do you have vulvar vestibulitis syndrom? or Dysesthetic vulvodynia? Something I wondered for those out there with lyme and vvs is.... if the chronic inflammation caused the proliferation of the nerves in the vestibule, would getting rid of the cause of the inflammation help with the vvs? I would think that the inflammation would contribute to the pain... but it could just be that once the nerves proliferate there in the vestibule there might always be some pain or more sensitivity unless the nerves are cut out with surgery. What do you think?> I'm guessing, I just don't know... but it's something I wondered about. >

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Sally,

What, in addition to the cat's claw, is Dr. Metzger having you do for the

Lyme?

Hollis

[Guest guest]

I will be testing my pelvic floor in Nov too...

I would think the cat's claw and vitamins to boost the

immune system in general and the physical therapy would

help. I'm on the anti-depressants now but hope I don't have

to stay on them for long... I worry about taking so many

drugs.

I'm using the clobetasol and estrace right now too for

maintenance of the LS. Is the cat's claw reasonably safe to

take long term? Just wanted to be sure it's ok for the

liver.

> Hi,

>

> As you all know, I got well from nerve blocks and

> physical therapy. However, I am thinking about getting

> tested for Lyme. Lyme fits well into my view of pelvic

> pain. I believe that we all have a camel partially

> loaded. Mine was a lifetime of riding horses, an unstable

> SI joint, fallen arches, bad posture, and maybe Lyme? (I

> remember my mom picking ticks off me all the time and I

> was actually bitten lots of times). Then I had a baby and

> that was the straw that broke the camel's back and all

> hell broke loose and I end up with IC, V V, and pudendal

> neuralgia (well, I think IC and VV is pudendal neuralgia,

> but that's a different post). Well, how many people have

> babies and don't end up with this? How many people ride

> horses and have all my other problems and don't end up

> with this? Well, I think that perhaps if you throw Lyme

> into the mix, if it's true what they say, that it thins

> the myelin sheath on the nerves, then perhaps we are more

> susceptable to chronic pain.

> Anyway, I want to get tested so I don't have to deal with

> anything else Lyme related.

>

> So, I guess what I'm trying to say, is don't expect the

> Lyme treatment to cure your pain. I believe that the Lyme

> treatment will make you stronger so that you can better

> fight it with other treatments like Physical therapy.

> Perhaps your nerves will be healthier, but you may still

> have pelvic floor contracture, unstable SI joint

> compromising your pudendal nerve, etc...

>

> love, Molly

>

> sally_bibb wrote:

> Hi - I believe that I have vulvar

> vestibulitis. I have pain only with intercourse. It

> started about seven years ago shortly before I was

> diagnosed with endometriosis. I am the world's biggest

> skeptic after so many years of trying so many different

> things and having nothing help with this pain. I'm having

> a hard time understanding why lyme could cause such a

> localized pain problem and not also cause other symptoms.

> Possibly, I am experiencing other things related to lyme,

> but I can't really identify those. But, after hearing Dr.

> Metzger's advice that she had other patients with the

> same symptoms I have get better with lyme treatment

> including cat's claw, I had to give it a try. I know that

> these treatments sometimes take a long time to work, so I

> am not giving up on it yet.

>

> I definately see the logic of the possibility that you

> mentioned - that even if you get rid of the source of the

> inflammation, the nerve reaction will remain because it's

> been trained.

>

> Today, I just was put in contact with another woman in the

> town I live in who had a successful vestibulectomy. I

> haven't talked directly with her about it yet, but I am

> getting closer and closer to thinking that I have to give

> the surgery a try. I know that I'm saying that right

> after saying that I'm still going to give the cat's claw

> more of a chance.

>

> I'm just totally exhausted, stressed out, and completely

> sick of this condition. I literally am losing my interest

> in the life ahead of me. This is such a tough battle to

> fight, because it is so long and so discouraging. Oh well

> , sometimes I just have to express those thoughts that

> follow me around every day. Thanks to all of you for your

> support and giving me the knowledge that I'm not alone.

>

> -- In VulvarDisorders , " Berry Home "

> wrote:

> >

> > Hey Sally,

> > Do you have vulvar vestibulitis syndrom? or Dysesthetic

> vulvodynia? Something I wondered for those out there with

> lyme and vvs is.... if the chronic inflammation caused

> the proliferation of the nerves in the vestibule, would

> getting rid of the cause of the inflammation help with

> the vvs? I would think that the inflammation would

> contribute to the pain... but it could just be that once

> the nerves proliferate there in the vestibule there might

> always be some pain or more sensitivity unless the nerves

> > are cut out with surgery. What do you think? I'm

> guessing, I just don't know... but it's something I

> wondered about.

> >

>

>

>

>

>

>

> ---------------------------------

> How low will we go? Check out Yahoo! Messenger’s low

> PC-to-Phone call rates.

>

[Guest guest]

I will be testing my pelvic floor in Nov too...

I would think the cat's claw and vitamins to boost the

immune system in general and the physical therapy would

help. I'm on the anti-depressants now but hope I don't have

to stay on them for long... I worry about taking so many

drugs.

I'm using the clobetasol and estrace right now too for

maintenance of the LS. Is the cat's claw reasonably safe to

take long term? Just wanted to be sure it's ok for the

liver.

> Hi,

>

> As you all know, I got well from nerve blocks and

> physical therapy. However, I am thinking about getting

> tested for Lyme. Lyme fits well into my view of pelvic

> pain. I believe that we all have a camel partially

> loaded. Mine was a lifetime of riding horses, an unstable

> SI joint, fallen arches, bad posture, and maybe Lyme? (I

> remember my mom picking ticks off me all the time and I

> was actually bitten lots of times). Then I had a baby and

> that was the straw that broke the camel's back and all

> hell broke loose and I end up with IC, V V, and pudendal

> neuralgia (well, I think IC and VV is pudendal neuralgia,

> but that's a different post). Well, how many people have

> babies and don't end up with this? How many people ride

> horses and have all my other problems and don't end up

> with this? Well, I think that perhaps if you throw Lyme

> into the mix, if it's true what they say, that it thins

> the myelin sheath on the nerves, then perhaps we are more

> susceptable to chronic pain.

> Anyway, I want to get tested so I don't have to deal with

> anything else Lyme related.

>

> So, I guess what I'm trying to say, is don't expect the

> Lyme treatment to cure your pain. I believe that the Lyme

> treatment will make you stronger so that you can better

> fight it with other treatments like Physical therapy.

> Perhaps your nerves will be healthier, but you may still

> have pelvic floor contracture, unstable SI joint

> compromising your pudendal nerve, etc...

>

> love, Molly

>

> sally_bibb wrote:

> Hi - I believe that I have vulvar

> vestibulitis. I have pain only with intercourse. It

> started about seven years ago shortly before I was

> diagnosed with endometriosis. I am the world's biggest

> skeptic after so many years of trying so many different

> things and having nothing help with this pain. I'm having

> a hard time understanding why lyme could cause such a

> localized pain problem and not also cause other symptoms.

> Possibly, I am experiencing other things related to lyme,

> but I can't really identify those. But, after hearing Dr.

> Metzger's advice that she had other patients with the

> same symptoms I have get better with lyme treatment

> including cat's claw, I had to give it a try. I know that

> these treatments sometimes take a long time to work, so I

> am not giving up on it yet.

>

> I definately see the logic of the possibility that you

> mentioned - that even if you get rid of the source of the

> inflammation, the nerve reaction will remain because it's

> been trained.

>

> Today, I just was put in contact with another woman in the

> town I live in who had a successful vestibulectomy. I

> haven't talked directly with her about it yet, but I am

> getting closer and closer to thinking that I have to give

> the surgery a try. I know that I'm saying that right

> after saying that I'm still going to give the cat's claw

> more of a chance.

>

> I'm just totally exhausted, stressed out, and completely

> sick of this condition. I literally am losing my interest

> in the life ahead of me. This is such a tough battle to

> fight, because it is so long and so discouraging. Oh well

> , sometimes I just have to express those thoughts that

> follow me around every day. Thanks to all of you for your

> support and giving me the knowledge that I'm not alone.

>

> -- In VulvarDisorders , " Berry Home "

> wrote:

> >

> > Hey Sally,

> > Do you have vulvar vestibulitis syndrom? or Dysesthetic

> vulvodynia? Something I wondered for those out there with

> lyme and vvs is.... if the chronic inflammation caused

> the proliferation of the nerves in the vestibule, would

> getting rid of the cause of the inflammation help with

> the vvs? I would think that the inflammation would

> contribute to the pain... but it could just be that once

> the nerves proliferate there in the vestibule there might

> always be some pain or more sensitivity unless the nerves

> > are cut out with surgery. What do you think? I'm

> guessing, I just don't know... but it's something I

> wondered about.

> >

>

>

>

>

>

>

> ---------------------------------

> How low will we go? Check out Yahoo! Messenger’s low

> PC-to-Phone call rates.

>

[Guest guest]

I will be testing my pelvic floor in Nov too...

I would think the cat's claw and vitamins to boost the

immune system in general and the physical therapy would

help. I'm on the anti-depressants now but hope I don't have

to stay on them for long... I worry about taking so many

drugs.

I'm using the clobetasol and estrace right now too for

maintenance of the LS. Is the cat's claw reasonably safe to

take long term? Just wanted to be sure it's ok for the

liver.

> Hi,

>

> As you all know, I got well from nerve blocks and

> physical therapy. However, I am thinking about getting

> tested for Lyme. Lyme fits well into my view of pelvic

> pain. I believe that we all have a camel partially

> loaded. Mine was a lifetime of riding horses, an unstable

> SI joint, fallen arches, bad posture, and maybe Lyme? (I

> remember my mom picking ticks off me all the time and I

> was actually bitten lots of times). Then I had a baby and

> that was the straw that broke the camel's back and all

> hell broke loose and I end up with IC, V V, and pudendal

> neuralgia (well, I think IC and VV is pudendal neuralgia,

> but that's a different post). Well, how many people have

> babies and don't end up with this? How many people ride

> horses and have all my other problems and don't end up

> with this? Well, I think that perhaps if you throw Lyme

> into the mix, if it's true what they say, that it thins

> the myelin sheath on the nerves, then perhaps we are more

> susceptable to chronic pain.

> Anyway, I want to get tested so I don't have to deal with

> anything else Lyme related.

>

> So, I guess what I'm trying to say, is don't expect the

> Lyme treatment to cure your pain. I believe that the Lyme

> treatment will make you stronger so that you can better

> fight it with other treatments like Physical therapy.

> Perhaps your nerves will be healthier, but you may still

> have pelvic floor contracture, unstable SI joint

> compromising your pudendal nerve, etc...

>

> love, Molly

>

> sally_bibb wrote:

> Hi - I believe that I have vulvar

> vestibulitis. I have pain only with intercourse. It

> started about seven years ago shortly before I was

> diagnosed with endometriosis. I am the world's biggest

> skeptic after so many years of trying so many different

> things and having nothing help with this pain. I'm having

> a hard time understanding why lyme could cause such a

> localized pain problem and not also cause other symptoms.

> Possibly, I am experiencing other things related to lyme,

> but I can't really identify those. But, after hearing Dr.

> Metzger's advice that she had other patients with the

> same symptoms I have get better with lyme treatment

> including cat's claw, I had to give it a try. I know that

> these treatments sometimes take a long time to work, so I

> am not giving up on it yet.

>

> I definately see the logic of the possibility that you

> mentioned - that even if you get rid of the source of the

> inflammation, the nerve reaction will remain because it's

> been trained.

>

> Today, I just was put in contact with another woman in the

> town I live in who had a successful vestibulectomy. I

> haven't talked directly with her about it yet, but I am

> getting closer and closer to thinking that I have to give

> the surgery a try. I know that I'm saying that right

> after saying that I'm still going to give the cat's claw

> more of a chance.

>

> I'm just totally exhausted, stressed out, and completely

> sick of this condition. I literally am losing my interest

> in the life ahead of me. This is such a tough battle to

> fight, because it is so long and so discouraging. Oh well

> , sometimes I just have to express those thoughts that

> follow me around every day. Thanks to all of you for your

> support and giving me the knowledge that I'm not alone.

>

> -- In VulvarDisorders , " Berry Home "

> wrote:

> >

> > Hey Sally,

> > Do you have vulvar vestibulitis syndrom? or Dysesthetic

> vulvodynia? Something I wondered for those out there with

> lyme and vvs is.... if the chronic inflammation caused

> the proliferation of the nerves in the vestibule, would

> getting rid of the cause of the inflammation help with

> the vvs? I would think that the inflammation would

> contribute to the pain... but it could just be that once

> the nerves proliferate there in the vestibule there might

> always be some pain or more sensitivity unless the nerves

> > are cut out with surgery. What do you think? I'm

> guessing, I just don't know... but it's something I

> wondered about.

> >

>

>

>

>

>

>

> ---------------------------------

> How low will we go? Check out Yahoo! Messenger’s low

> PC-to-Phone call rates.

>

[Guest guest]

Hi Hollis - the cat's claw is the only thing I am taking for lyme right

now. Dr. Metzger gave me the option of the antibiotic or non-

antibiotic path. She said that she has had patients who had success

with both. I'd love to actually talk to someone who has vvs, lyme, and

has had pain reduction from cat's claw, but I've never run into anyone

myself. I talked with Dr. Metzger after a month of the cat's claw and

no change in pain. She said give it another month and then, if no

change, she'd recommend adding something, but she didn't say what. I'm

not sure I'm interested in adding more things that I don't really

understand. Antibiotics, thyroid hormone, bcp, gluten free diet -

these things I understand. But, cat's claw - I don't really understand

how this works and I have a little difficulty taking pills when I don't

really understand what they are or how they are working. I know there

is information written about cat's claw - but what I mean is that I

don't really understand the explanations of how it works, because I

think it is a little more complicated and less direct than some of the

other things I understand better.

Dr. M also recommends that I should be on a gluten free diet because I

am gluten intolerent (but not celiac?), that I am allergic to molds and

particularly skin molds, and that I should be using an estrogen cream.

I have not yet found an estrogen cream that doesn't create burning and

stinging that I can't tolerate. Next, I need to experiment with

different bases to see if it is the base that is causing problems.

Funny, but about five years ago I tried Estrace and it really helped

(but caused bleeding so I stopped using it because of my

endometriosis). I now get the feeling the Estrace is not as mild as

estrogen compounded with some specific base. I was using lipocream as

the base. So, now I need to try just putting on lipocream and see if

it is irritating. It's a constant science experiment. Anyway, these

are the main things she is recommending - it's a combination of

factors. She thinks that my immune system is just on red alert and

needs to be calmed down. I'm not sure about this, maybe because it all

feels normal to me because I've always been like this. I definately

feel better without gluten, so that's a big plus mark on her list of

issues. I also could see from the allergy tests how strongly I reacted

to molds, but whether or how that is related to the vvs, I don't know.

Dr. M. recommends desensitization drops for mold allergies - another

thing that I don't really understand so have been reluctant to try.

More than you asked, each question leads to these endless mental

wanderings for me. Have a great day - thanks for keeping track of me.

Sally

>

> Sally,

>

> What, in addition to the cat's claw, is Dr. Metzger having you do for

the

> Lyme?

>

> Hollis

>

[Guest guest]

Hi Tami - thanks for that great article on cat's claw. Dr. Metzger

gave me a copy of a similar article last year. I re-read it below

and also the full copy I had - noting that the experiment ran for six

months. I don't think I expected much to change in one month, but I

was mentioning it mainly because other people, like you, who are

using the antibiotics seem to report noticeable differences within

the first month. One thing thing I noted in the article you sent

is " 85% were seronegative for Lyme disease at the end of the study. "

Does that mean that after the end of six months, they tested negative

for lyme in a test like the Igenex tests? Guess so - interesting and

that's something that can test for in the future. Also, " it may be

assumed that with in a 6-8 month period, a significant majority of

all intracellular forms of Bb will be released into the

environment where they can be successfully attacked by properly

functioning immune system and a natural powerful antibiotic. " An

explanation for why you might have to take the cat's claw over a long

period of time.

Thanks also for the info. on compounded estrogen. I've kept track of

all the e-mails about this over the months. I was assuming that I

was having a problem with the estradiol itself, but now will try

putting on just the base I've been using to see if it is causing a

problem. I might just call Pete and ask him what he'd recommend next

if lipocream is a problem for me. I'll also go back and re-read the

posts about the various bases that everyone here has tried, because I

know there's lots of good information from just the last couple of

months.

I am so glad you are feeling better.

Sally

[Guest guest]

Dr. M also recommends that I should be on a gluten free diet because I am gluten intolerent (but not celiac?), that I am allergic to molds and particularly skin molds, and that I should be using an estrogen cream.

I have not yet found an estrogen cream that doesn't create burning and stinging that I can't tolerate. Next, I need to experiment with different bases to see if it is the base that is causing problems.

Funny, but about five years ago I tried Estrace and it really helped (but caused bleeding so I stopped using it because of my endometriosis). I now get the feeling the Estrace is not as mild as estrogen compounded with some specific base.

Sally,

I use estradiol compounded in a really good emu oil that i had been using for months on my vulvar tissue quite successfully. (Pete Hausemann at Bellevue Pharmacy allows you to send them whatever

base you'd like for them to use. I think this is fantastic and NOT

something that other compounding pharmacies i've dealt with will do.)

To my surprise -- an unhappy one -- when i first tried my Rx on my

face, it STUNG. At first i figured that it had to be the estradiol itself,

but then i remembered that when i had first started the emu oil months

before on my face, it had stung a little bit at first, but later stopped.

So, loathe to put anything with sting potential on my labia, i spent the

first month and a half just putting the estradiol/emu oil on my face and,

later, inched closer to my crotch, putting some on my inner upper

thighs. Over time, the stinging subsided and in late September (on

my b-day, actually) i put it on my labia for the first time.. . . and it

was fine: no stinging at all.

All was fine until a few weeks ago, when i got my new refill Rx.

To be honest, i had totally forgotten all about the intial sting/burn

problem, so when i put some of my new stuff on my face, i was

shocked when i felt that old burn again. . . .

I really don't understand this, but just have to hope that it also

subsides as the first Rx did. I've been mixing the last precious

drops from my old tube with my new stuff to put on my labia,

since i don't want to stop -- and so far it's been o.k. I think i'm

going to call and talk to Pete to see if he has any idea why this

might be happening. And i might consider switching my next

refill to using my favorite coconut oil as the base.

Anyway. . . i would suggest that you consider either emu oil,

coconut, or aloe vera gel as a base for compounded estradiol.

And, hopefully, you won't encounter my odd initial sting problem.

Hollis

[Guest guest]

Dr. M also recommends that I should be on a gluten free diet because I am gluten intolerent (but not celiac?), that I am allergic to molds and particularly skin molds, and that I should be using an estrogen cream.

I have not yet found an estrogen cream that doesn't create burning and stinging that I can't tolerate. Next, I need to experiment with different bases to see if it is the base that is causing problems.

Funny, but about five years ago I tried Estrace and it really helped (but caused bleeding so I stopped using it because of my endometriosis). I now get the feeling the Estrace is not as mild as estrogen compounded with some specific base.

Sally,

I use estradiol compounded in a really good emu oil that i had been using for months on my vulvar tissue quite successfully. (Pete Hausemann at Bellevue Pharmacy allows you to send them whatever

base you'd like for them to use. I think this is fantastic and NOT

something that other compounding pharmacies i've dealt with will do.)

To my surprise -- an unhappy one -- when i first tried my Rx on my

face, it STUNG. At first i figured that it had to be the estradiol itself,

but then i remembered that when i had first started the emu oil months

before on my face, it had stung a little bit at first, but later stopped.

So, loathe to put anything with sting potential on my labia, i spent the

first month and a half just putting the estradiol/emu oil on my face and,

later, inched closer to my crotch, putting some on my inner upper

thighs. Over time, the stinging subsided and in late September (on

my b-day, actually) i put it on my labia for the first time.. . . and it

was fine: no stinging at all.

All was fine until a few weeks ago, when i got my new refill Rx.

To be honest, i had totally forgotten all about the intial sting/burn

problem, so when i put some of my new stuff on my face, i was

shocked when i felt that old burn again. . . .

I really don't understand this, but just have to hope that it also

subsides as the first Rx did. I've been mixing the last precious

drops from my old tube with my new stuff to put on my labia,

since i don't want to stop -- and so far it's been o.k. I think i'm

going to call and talk to Pete to see if he has any idea why this

might be happening. And i might consider switching my next

refill to using my favorite coconut oil as the base.

Anyway. . . i would suggest that you consider either emu oil,

coconut, or aloe vera gel as a base for compounded estradiol.

And, hopefully, you won't encounter my odd initial sting problem.

Hollis

[Guest guest]

Dr. M also recommends that I should be on a gluten free diet because I am gluten intolerent (but not celiac?), that I am allergic to molds and particularly skin molds, and that I should be using an estrogen cream.

I have not yet found an estrogen cream that doesn't create burning and stinging that I can't tolerate. Next, I need to experiment with different bases to see if it is the base that is causing problems.

Funny, but about five years ago I tried Estrace and it really helped (but caused bleeding so I stopped using it because of my endometriosis). I now get the feeling the Estrace is not as mild as estrogen compounded with some specific base.

Sally,

I use estradiol compounded in a really good emu oil that i had been using for months on my vulvar tissue quite successfully. (Pete Hausemann at Bellevue Pharmacy allows you to send them whatever

base you'd like for them to use. I think this is fantastic and NOT

something that other compounding pharmacies i've dealt with will do.)

To my surprise -- an unhappy one -- when i first tried my Rx on my

face, it STUNG. At first i figured that it had to be the estradiol itself,

but then i remembered that when i had first started the emu oil months

before on my face, it had stung a little bit at first, but later stopped.

So, loathe to put anything with sting potential on my labia, i spent the

first month and a half just putting the estradiol/emu oil on my face and,

later, inched closer to my crotch, putting some on my inner upper

thighs. Over time, the stinging subsided and in late September (on

my b-day, actually) i put it on my labia for the first time.. . . and it

was fine: no stinging at all.

All was fine until a few weeks ago, when i got my new refill Rx.

To be honest, i had totally forgotten all about the intial sting/burn

problem, so when i put some of my new stuff on my face, i was

shocked when i felt that old burn again. . . .

I really don't understand this, but just have to hope that it also

subsides as the first Rx did. I've been mixing the last precious

drops from my old tube with my new stuff to put on my labia,

since i don't want to stop -- and so far it's been o.k. I think i'm

going to call and talk to Pete to see if he has any idea why this

might be happening. And i might consider switching my next

refill to using my favorite coconut oil as the base.

Anyway. . . i would suggest that you consider either emu oil,

coconut, or aloe vera gel as a base for compounded estradiol.

And, hopefully, you won't encounter my odd initial sting problem.

Hollis