Re: Is there a PVA link to autoimmune problems?

[Guest guest]

what is PVA? As I said before, during surgery for removal of a kidney, the docs

left a chore boy-just

kidding-sponge in me for ten years. I had across the board auto immune symptoms

and no answers for

ten years, and hospitalizations most of these symptoms gradually faded away when

the foreign body

response was deal with, i.e., the alien thing was taken out. ;-)! gg

ARomaWithAView@... wrote:

> Bonnie:

> You wrote:

>

> > -I now have enough pva to stop a horse.I also

> > have an abnormal ANA and am positive for RA factor.They cannot remove the

> > pva and my doctor says that

> > any foreign body can set an auto-immune reaction.Unfortunately I will have

> > to live with that for the

> > rest of my life .Fortunately I do not,at present,suffer a great deal of

> > symptoms from it.

> >

>

> This is very first time I have EVER heard anyone connect the onset of an

> autoimmune reaction to PVA (that's not to say there aren't any-I just have

> never heard or read of any.)

>

> Has anyone else ever heard or seen anything that I might have missed?

> Carla, can you enlighten us?

>

> Before I had my UAE, I did attempt to research this very possibility. I

> could find absolutely nothing. Not a single reported case. Not even

> suspicions to this effect. So I was surprised to read your email.

>

> How confident can you be that your abnormal ANA and your RA can be attributed

> to this? Isn't this really just speculation on your part, trying to find

> some cause and effect?

>

> I don't mean to sound confrontational. I fully understand your need to

> explore a possible cause for these baffling conditions. But I think we really

> have to be careful about pointing the finger at PVA.

>

> I question your assertion, NOT because I think it's absurd -- but because of

> the absence of any data for this link between PVA and your autoimmune

> conditions (that you're alleging were caused by it.)

>

> But, if there have been studies done to substantiate your belief, please let

> us all know! Because women contemplating UAE need to factor this in to their

> decision-making.

>

> My belief is the autoimmune diseases are as complex as they are mysterious.

> Researchers have no idea what causes most of them. RA is believed to be

> influenced by genetics, infections, environment, and, even hormonal

> factors--and any combination of the above.

>

> Could PVA have caused your RA and elevated ANA? I suppose anything is

> possible.

>

> But, this much can be said-- as a " foreign body " entering the body, I'd say,

> until now PVA has an exceptionally long, proven track record of being

> innocuous.

>

> -Roma

>

>

[Guest guest]

PVA is 'poly vinyl alcohol' the particles they use in UAE.

>

>Reply-To: uterinefibroids

>To: uterinefibroids

>Subject: Re: Is there a PVA link to autoimmune problems?

>Date: Wed, 07 Aug 2002 22:29:41 -0700

>

>what is PVA?

[Guest guest]

All I am saying is that prior to my UAE and the very,very large doses that were

used on me because of

the size of the artery,I had no markers for autoimmune.Since then I do.My family

does not have

autoimmune disease.I am not confident at all that there is a link,but that is

what my history is.The

only thing that was pointed to ,during all of the investigation was the

theoretical possibility that

the pva was a foreign body and that it could be a culprit.It is not ME making

this theory it is my

internist and rhematologist.I am not " alleging " anything-or pointing a finger

here-I am simply

stating my case.

Bonnie

ARomaWithAView@... wrote:

> Bonnie:

> You wrote:

>

> > -I now have enough pva to stop a horse.I also

> > have an abnormal ANA and am positive for RA factor.They cannot remove the

> > pva and my doctor says that

> > any foreign body can set an auto-immune reaction.Unfortunately I will have

> > to live with that for the

> > rest of my life .Fortunately I do not,at present,suffer a great deal of

> > symptoms from it.

> >

>

> This is very first time I have EVER heard anyone connect the onset of an

> autoimmune reaction to PVA (that's not to say there aren't any-I just have

> never heard or read of any.)

>

> Has anyone else ever heard or seen anything that I might have missed?

> Carla, can you enlighten us?

>

> Before I had my UAE, I did attempt to research this very possibility. I

> could find absolutely nothing. Not a single reported case. Not even

> suspicions to this effect. So I was surprised to read your email.

>

> How confident can you be that your abnormal ANA and your RA can be attributed

> to this? Isn't this really just speculation on your part, trying to find

> some cause and effect?

>

> I don't mean to sound confrontational. I fully understand your need to

> explore a possible cause for these baffling conditions. But I think we really

> have to be careful about pointing the finger at PVA.

>

> I question your assertion, NOT because I think it's absurd -- but because of

> the absence of any data for this link between PVA and your autoimmune

> conditions (that you're alleging were caused by it.)

>

> But, if there have been studies done to substantiate your belief, please let

> us all know! Because women contemplating UAE need to factor this in to their

> decision-making.

>

> My belief is the autoimmune diseases are as complex as they are mysterious.

> Researchers have no idea what causes most of them. RA is believed to be

> influenced by genetics, infections, environment, and, even hormonal

> factors--and any combination of the above.

>

> Could PVA have caused your RA and elevated ANA? I suppose anything is

> possible.

>

> But, this much can be said-- as a " foreign body " entering the body, I'd say,

> until now PVA has an exceptionally long, proven track record of being

> innocuous.

>

> -Roma

>

>

[Guest guest]

ahhhh. thanks. The study of environmental disease is a hot new

speciality...wish I could fast

forward 50 years or so. gg

S K wrote:

> PVA is 'poly vinyl alcohol' the particles they use in UAE.

>

> >

> >Reply-To: uterinefibroids

> >To: uterinefibroids

> >Subject: Re: Is there a PVA link to autoimmune problems?

> >Date: Wed, 07 Aug 2002 22:29:41 -0700

> >

> >what is PVA?

>

>

>

[Guest guest]

You and me both-but I guess its " harmless stuff " afterall there are no studies

that show a

connection!?!

Best,

Bonnie

Geraldine Schaumburg wrote:

> ahhhh. thanks. The study of environmental disease is a hot new

speciality...wish I could fast

> forward 50 years or so. gg

> S K wrote:

>

> > PVA is 'poly vinyl alcohol' the particles they use in UAE.

> >

> > >

> > >Reply-To: uterinefibroids

> > >To: uterinefibroids

> > >Subject: Re: Is there a PVA link to autoimmune problems?

> > >Date: Wed, 07 Aug 2002 22:29:41 -0700

> > >

> > >what is PVA?

> >

> >

> >

[Guest guest]

Bonnie Andrukaitis wrote:

> You and me both-but I guess its " harmless stuff " afterall there are no

> studies that show a

> connection!?!

given there are currently nearly 60 autoimmune diseases identified by

the American Autoimmune Related Diseases Association, and research on

all of them is pretty slim pickings, I think it's honestly hard to point

fingers in any given direction when autoimmune issues kick in. Many,

many women I know who simply underwent surgery of some sort suddenly

identified themselves with autoimmune disease afterwards. Hysterectomy

patients on many list groups frequently complain of a wide range of

autoimmune diseases which they felt kicked in at the point of the

surgery -- but can't substantiate that to save their souls.

Saying something directly caused an autoimmune disease is easier than

proving it, that's for certain. Have you seen this website?

http://www.aarda.org/

I sit on a NIH public liaison panel with the Director of AARDA and

endocrine-disruption-related autoimmune disorders are something we've

discussed quite a few times over the past year. Specifically in

relationship to " triggers " which might set off an autoimmune response

and may include surgical treatment, anesthesia, devices, etc. A whole

lot of variables to consider and look at for future research. Not as

easy as you'd think to simply point the finger at one item and say

" that's it! "

ly, although there are a lot of women on the internet complaining

about this relationship of their treatment for fibroids (or endo or

prolapse or whatever) as being the trigger point to onset of autoimmune

disease (whether it be hyst, myo, or UFE, etc.), AARDA's surveys of the

patient population they serve have not shown any connections at all as

of yet. And, of the thousands of women who've undergone UFE, I can

count on my fingers the number of women who've complained or asked about

autoimmune related issues post UFE. If this is a big issue with PVA,

then the numbers of women stepping forward and speaking out about it or

writing about it online certainly aren't a solid reflection of it as a

problem.

Virginia Ladd, who has been involved in this org and pushing forth the

agenda on autoimmune research for quite some time, decided to feature

NUFF in their last quarterly newsletter in an attempt to generate some

thoughts on this issue among members. That story generated quite a few

calls from women post hysterectomy who were on the AARDA mailing list

due to autoimmune issues who had never considered a connection to their

hyst previously. We hope, in the future, to take a closer look at this

issue -- but need to generate interest among appropriate researchers to

add it to the list of potential triggers to study.

The problem is, however, the sheer growing prevalence and wide variety

of autoimmune disorders.

Which ones were you diagnosed with Bonnie and which autoimmune

specialists in Canada did you see?

Carla Dionne

Executive Director

National Uterine Fibroids Foundation

[Guest guest]

I tested positive for ANA after my UAE.Lately I was re-tested,which is post

surgical, and I am still

ANA positive and RA positive.RA is rheumatoid arthritis.As I said,I was told

that any foreign body

can set up a foreign body reaction.No one said about the pva " that's it " they

simply do not know for

sure.Whether these two components -RA positive and ANA positive will ever lead

to more acute symptoms

is also not known.

Very Best,

Bonnie

Carla Dionne wrote:

> Bonnie Andrukaitis wrote:

>

> > You and me both-but I guess its " harmless stuff " afterall there are no

> > studies that show a

> > connection!?!

>

> given there are currently nearly 60 autoimmune diseases identified by

> the American Autoimmune Related Diseases Association, and research on

> all of them is pretty slim pickings, I think it's honestly hard to point

> fingers in any given direction when autoimmune issues kick in. Many,

> many women I know who simply underwent surgery of some sort suddenly

> identified themselves with autoimmune disease afterwards. Hysterectomy

> patients on many list groups frequently complain of a wide range of

> autoimmune diseases which they felt kicked in at the point of the

> surgery -- but can't substantiate that to save their souls.

>

> Saying something directly caused an autoimmune disease is easier than

> proving it, that's for certain. Have you seen this website?

>

> http://www.aarda.org/

>

> I sit on a NIH public liaison panel with the Director of AARDA and

> endocrine-disruption-related autoimmune disorders are something we've

> discussed quite a few times over the past year. Specifically in

> relationship to " triggers " which might set off an autoimmune response

> and may include surgical treatment, anesthesia, devices, etc. A whole

> lot of variables to consider and look at for future research. Not as

> easy as you'd think to simply point the finger at one item and say

> " that's it! "

>

> ly, although there are a lot of women on the internet complaining

> about this relationship of their treatment for fibroids (or endo or

> prolapse or whatever) as being the trigger point to onset of autoimmune

> disease (whether it be hyst, myo, or UFE, etc.), AARDA's surveys of the

> patient population they serve have not shown any connections at all as

> of yet. And, of the thousands of women who've undergone UFE, I can

> count on my fingers the number of women who've complained or asked about

> autoimmune related issues post UFE. If this is a big issue with PVA,

> then the numbers of women stepping forward and speaking out about it or

> writing about it online certainly aren't a solid reflection of it as a

> problem.

>

> Virginia Ladd, who has been involved in this org and pushing forth the

> agenda on autoimmune research for quite some time, decided to feature

> NUFF in their last quarterly newsletter in an attempt to generate some

> thoughts on this issue among members. That story generated quite a few

> calls from women post hysterectomy who were on the AARDA mailing list

> due to autoimmune issues who had never considered a connection to their

> hyst previously. We hope, in the future, to take a closer look at this

> issue -- but need to generate interest among appropriate researchers to

> add it to the list of potential triggers to study.

>

> The problem is, however, the sheer growing prevalence and wide variety

> of autoimmune disorders.

>

> Which ones were you diagnosed with Bonnie and which autoimmune

> specialists in Canada did you see?

>

> Carla Dionne

> Executive Director

> National Uterine Fibroids Foundation

>

>

>

[Guest guest]

There have been a few comments re PVA and the liklihood of it causing

an alergic type reaction.

On the embo site Dr Kirsch has disputed this, he said it has been in

use for 40 plus years with embos of all sorts of types, without

producing any evidence of alergies.

However you can drawn your own conclusions on his next comment - he

also said PVA is used for contact lenses. I can tolerate these, as

long as I do not wear them for too long. But do you know someone who

cannot? If so then perhaps there may be a few people who may get a

reaction. Who knows?

Anne

[Guest guest]

Anne -

PVA is used for many, many things and there's been no

demonstrated link to allergic reactions/other problems. I think

that was Dr. Kirsch's point.

Likewise, many, many people cannot wear contact lenses for too

long (I am one of the many, as are you). However, this has

nothing to do with an allergic or other type of reaction to PVA per

se (i.e., it's not the material that is the problem necessarily; it's

sticking some foreign object in the eye that may have other

debris attached to it as well and expecting it to coexist there

happily.)

Ellen E

>

> On the embo site Dr Kirsch has disputed this, he said it has

been in

> use for 40 plus years with embos of all sorts of types, without

> producing any evidence of alergies.

>

> However you can drawn your own conclusions on his next

comment - he

> also said PVA is used for contact lenses. I can tolerate these,

as

> long as I do not wear them for too long. But do you know

someone who

> cannot? If so then perhaps there may be a few people who

may get a

> reaction. Who knows?

>

> Anne

[Guest guest]

Contact lenses tend to restrict oxygen a little to the cornea which

can tire the eye. People with dry eyes have more porblems wearing

lenses for long periods due to just general abrasion of having a

foreign object in the eye and not getting quite enough tears to

lubricate it.

Thousands of people every year receive lense implants made of a

plastic which is basically plexiglas. It shares similarities with

polyvinyl alcohol. Lense implants have been in some people for up to

40 years now with no known reactions. It was discovered that the body

didn't percieve them as foreign objects when pilots in WWII got

pieces of plexiglas windshield imbedded in them that they carried

around all their lives with no problems ever developing. Many

plastics and polymers are very stable and will not break down for

thousands of years or more. They are very impervious to bacterial and

other biological breakdown. It's their chemical stability that

prevents reactions to them and prevents disturbances to the body's

chemistry. They are often made of long, simple carbon/hydrogen/oxygen

chains and share some caracteristics with complex carbohydrates or

food fiber. So, if they did break down, it would be very very slowly,

the break down products probably would not be dangerous or

carcinogenic, and the body could probably handle it through it's

normal metabolic mechanisms.

Some of what makes commercial plastics so bad is the solvents and

modifyers used in them to alter their properties. I would guess that

PVA for medical purposes is as pure as they can make it.

Tish