Some thoughts

February 1, 1999

I do agree with you about the effectiveness of the Metho at least with me when I

first took it. The thing that scared me was it was losing its effectiveness

and my RD kept upping the doses saying it was quite safe and he had patients on

it for 25 years. It does work but at the cost of higher doses, at least for

me. Since I have come off it I have had a set back not in the stiffness but in

the pain in my wrists at times. But I expected this and hope the Mino will kick

in again. I have had such good results with it so far with the nodules in my

knuckles completely disappearing and the stiffness in my feet in the morning

almost eliminated. They are a little more painful in the morning since

dropping the metho so I know it was doing something for me. But I am not

prepared to pay the price of liver damage (maybe) and can wait for the Mino to

do the job.

Bev

rheumatic Some thoughts

At the risk of upsetting people, I feel I should say something. Despite my

annoyance at the Arthritis Foundation for not presenting all sides of the issue,

I think we should all hesitate just a tad before so roundly condemning

methotrexate and even prednisone (I know heresy! - will probably get me banned).

I know of a number of people who have been on metho for years with very

favorable results and no side effects. My local doctor has a number of patients

on methotrexate with good results - some of her patients have been on it for 9+

years. This doesn't mean that I'm thinking about taking it, nor do I think it

is the answer. But for a lot of folks, it has meant a world of difference in

their suffering and for us as a group to slam dunk them is rather unjust, imho.

We are all so different and all react so differently that I think it is hard

to generalize . I recognize that many in this group have had problems with

metho and hate it because of it. Yet I think we need to exercise some caution

here as well - many who come to this group have had a problem with metho and are

naturally going to talk about that. It is unlikely that many who have had

success with metho are going to be coming to this group. So what I am saying is

that we need to be a bit cautious about skewing the facts. I know that metho is

not a cure, nor prednisone and the reason that I am taking minocycline is

because I have hope that perhaps it truly is the cure, but I won't know that for

a while yet and just in case it doesn't work long term for me, I want to keep my

eyes and ears open. (My NIH docs tell me mino is basically a mild DMARD and are

glad it is working for me, but because of my synovitis and blood workups want to

keep a careful eye on me - I'm due to see them again on the 11th - should be an

interesting discussion) I tend to get nervous if someone says there is only one

way - it's kind of like telling me that there is only one religion. There is no

doubt that I have gotten better with minocycline, but I'm not all the way there

yet and my hands have gotten worse, so I'm not sure which direction I'm headed

in.

Don't get me wrong - I think AP is the way to go, but if I went dramatically

downhill or my docs told me they were seeing bone erosion on my xrays, I would

probably find it difficult not to panic and give in to the big guns, despite

knowing they wouldn't cure me.

If nothing else, this note should provoke a lot of people to jump in and

reply! <VBG>

And before you tell me - no, I have not been as good as I should be about

the diet, water and other things. But I have not allowed myself to be

depressed, so that makes up for some of my other faults. (another VBG!)

Mark

RA 4/98 A/P 7/98

Mino (100mg/2x/daily)

http://members.tripod.com/~Mark_Holmes

RA Chat: http://members.tripod.com/~Mark_Holmes/RA/ra.html

mholmes@... ICQ # 18123139

----------------------------------------------------------------

February 1, 1999

Mark Yes bravo, I hate being the only black sheep in this group,but your here<g>

I can only say that until metnotrixate I was devastated. I tried AP

and everything else as Iv had 14 years to do it in.

If it was not for diversity what would we measure success with. How would we

grade our improvement . Comparison makes for good science , good thought,

good choice, and accommodates diversity. And boy am I diverse<BG>

Blessings and prayers Root

February 1, 1999

I have to respond to this one.

Hopefully I am not being referred to here because I believe in PERSONAL

CHOICE. If you want to take Methotrexate and d-penicillimine (something I

took for 18 months) that's your choice.

What really burns my butt in this article is the praise from The College of

Rheumatology. They come to the rescue to defend Methotrexate and

D-Penicillimine and openly condem Minocycline. I have a letter from them

(ACR Hotline) to my Rheumatologist and it reads like this......and I

quote....

" Many drugs have been tried in the treatment of Scleroderma, but NO drug

has yet been proven useful in a controlled trial. " (dated May 14, 1998)

WHAT IN THE DEVIL WERE THEY DOING PERSCRIBING METHOTREXATE AND

D-PENICILLINE TO ME IF THEY FEEL THEY ARE NOT PROVEN USEFUL???????

Yet...when I ask for Minocycline they all have a hissy fit.

That is what gets my dander up. So any mud slinging I do is directly aimed

at the College of Rheumatology. What I would have liked was a choice 2

years ago instead of having to crusade for Minocycline and justify why I

wanted to stop taking d-penicillimine. I was made to feel like a child

that didn't know what she was doing.

A child I am not. Unless of course to saw what my Friday was like last

week......aww...well....aww....uummm...

So...there ya go. My input for the day......gotta love this forum.

Donna

Ottawa, Canada

Scleroderma, Raynaud's 4 yrs, AP 15 months

(My Story) www.compmore.net/~donray

----------

From: HOLMES, MARK T. <MHOLMES@...>

rheumaticonelist

Subject: rheumatic Some thoughts

Date: Sunday, January 31, 1999 10:45 PM

At the risk of upsetting people, I feel I should say something. Despite my

annoyance at the Arthritis Foundation for not presenting all sides of the

issue, I think we should all hesitate just a tad before so roundly

condemning methotrexate and even prednisone (I know heresy! - will probably

get me banned). I know of a number of people who have been on metho for

years with very favorable results and no side effects. My local doctor has

a number of patients on methotrexate with good results - some of her

patients have been on it for 9+ years. This doesn't mean that I'm

thinking about taking it, nor do I think it is the answer. But for a lot

of folks, it has meant a world of difference in their suffering and for us

as a group to slam dunk them is rather unjust, imho.

We are all so different and all react so differently that I think it is

hard to generalize . I recognize that many in this group have had problems

with metho and hate it because of it. Yet I think we need to exercise some

caution here as well - many who come to this group have had a problem with

metho and are naturally going to talk about that. It is unlikely that many

who have had success with metho are going to be coming to this group. So

what I am saying is that we need to be a bit cautious about skewing the

facts. I know that metho is not a cure, nor prednisone and the reason that

I am taking minocycline is because I have hope that perhaps it truly is the

cure, but I won't know that for a while yet and just in case it doesn't

work long term for me, I want to keep my eyes and ears open. (My NIH docs

tell me mino is basically a mild DMARD and are glad it is working for me,

but because of my synovitis and blood workups want to keep a careful eye on

me - I'm due to see them again on the 11th - should be an interesting

discussion) I tend to get nervous if someone says there is only one way -

it's kind of like telling me that there is only one religion. There is no

doubt that I have gotten better with minocycline, but I'm not all the way

there yet and my hands have gotten worse, so I'm not sure which direction

I'm headed in.

Don't get me wrong - I think AP is the way to go, but if I went

dramatically downhill or my docs told me they were seeing bone erosion on

my xrays, I would probably find it difficult not to panic and give in to

the big guns, despite knowing they wouldn't cure me.

If nothing else, this note should provoke a lot of people to jump in and

reply! <VBG>

And before you tell me - no, I have not been as good as I should be about

the diet, water and other things. But I have not allowed myself to be

depressed, so that makes up for some of my other faults. (another VBG!)

Mark

RA 4/98 A/P 7/98

Mino (100mg/2x/daily)

http://members.tripod.com/~Mark_Holmes

RA Chat: http://members.tripod.com/~Mark_Holmes/RA/ra.html

mholmes@... ICQ # 18123139

----------------------------------------------------------------

February 1, 1999

I'm with you Mark. I sure hope the minocycline works, but I keep my ears

and eyes open to absorb any info. I come across regarding RA.

Kari

----------

From: MHOLMES@... (HOLMES, MARK T.)

Subject: rheumatic Some thoughts

Date: Sun, Jan 31, 1999, 9:45 PM

At the risk of upsetting people, I feel I should say something. Despite my

annoyance at the Arthritis Foundation for not presenting all sides of the

issue, I think we should all hesitate just a tad before so roundly

condemning methotrexate and even prednisone (I know heresy! - will probably

get me banned). I know of a number of people who have been on metho for

years with very favorable results and no side effects. My local doctor has

a number of patients on methotrexate with good results - some of her

patients have been on it for 9+ years. This doesn't mean that I'm thinking

about taking it, nor do I think it is the answer. But for a lot of folks,

it has meant a world of difference in their suffering and for us as a group

to slam dunk them is rather unjust, imho.

We are all so different and all react so differently that I think it is hard

to generalize . I recognize that many in this group have had problems with

metho and hate it because of it. Yet I think we need to exercise some

caution here as well - many who come to this group have had a problem with

metho and are naturally going to talk about that. It is unlikely that many

who have had success with metho are going to be coming to this group. So

what I am saying is that we need to be a bit cautious about skewing the

facts. I know that metho is not a cure, nor prednisone and the reason that

I am taking minocycline is because I have hope that perhaps it truly is the

cure, but I won't know that for a while yet and just in case it doesn't work

long term for me, I want to keep my eyes and ears open. (My NIH docs tell me

mino is basically a mild DMARD and are glad it is working for me, but

because of my synovitis and blood workups want to keep a careful eye on me -

I'm due to see them again on the 11th - should be an interesting discussion)

I tend to get nervous if someone says there is only one way - it's kind of

like telling me that there is only one religion. There is no doubt that I

have gotten better with minocycline, but I'm not all the way there yet and

my hands have gotten worse, so I'm not sure which direction I'm headed in.

Don't get me wrong - I think AP is the way to go, but if I went dramatically

downhill or my docs told me they were seeing bone erosion on my xrays, I

would probably find it difficult not to panic and give in to the big guns,

despite knowing they wouldn't cure me.

If nothing else, this note should provoke a lot of people to jump in and

reply! <VBG>

And before you tell me - no, I have not been as good as I should be about

the diet, water and other things. But I have not allowed myself to be

depressed, so that makes up for some of my other faults. (another VBG!)

Mark

RA 4/98 A/P 7/98

Mino (100mg/2x/daily)

http://members.tripod.com/~Mark_Holmes

<http://members.tripod.com/~Mark_Holmes>

RA Chat: http://members.tripod.com/~Mark_Holmes/RA/ra.html

<http://members.tripod.com/~Mark_Holmes/RA/ra.html>

mholmes@... <mailto:mholmes@...> ICQ # 18123139

----------------------------------------------------------------

February 2, 1999

Their very profession is on the line if we were treated with the Minocin.

They are a stubborn lot aren't they? You would think they would want the

best for their patients. My RD said I would be sorry if I stopped the Metho

and he also doesn't subscribe to the Lancet (I mentioned the article). Can

you believe it! He has two offices in two different cities and is no

slouch in the eyes of the community. He makes me feel like I'm from outer

space when I try to discuss the treatment tho I must admit he was dumfounded

to see the improvement in my hands since Oct. and said to keep taking the

Minocin. We'll see what happens.

I was on my feet at work all day yesterday and last night went to my line

dancing lessons (even tho I can't hop as I have no spring in my knees) and

this a.m. am stiff and sore all over. Even my hands are sore and stiff

neck. I am going to hop in a hot bath soon and see if that helps.

Take care all

Bev

rheumatic Some thoughts

>Date: Sunday, January 31, 1999 10:45 PM

>

>At the risk of upsetting people, I feel I should say something. Despite my

>annoyance at the Arthritis Foundation for not presenting all sides of the

>issue, I think we should all hesitate just a tad before so roundly

>condemning methotrexate and even prednisone (I know heresy! - will probably

>get me banned). I know of a number of people who have been on metho for

>years with very favorable results and no side effects. My local doctor has

>a number of patients on methotrexate with good results - some of her

>patients have been on it for 9+ years. This doesn't mean that I'm

>thinking about taking it, nor do I think it is the answer. But for a lot

>of folks, it has meant a world of difference in their suffering and for us

>as a group to slam dunk them is rather unjust, imho.

>

>We are all so different and all react so differently that I think it is

>hard to generalize . I recognize that many in this group have had problems

>with metho and hate it because of it. Yet I think we need to exercise some

>caution here as well - many who come to this group have had a problem with

>metho and are naturally going to talk about that. It is unlikely that many

>who have had success with metho are going to be coming to this group. So

>what I am saying is that we need to be a bit cautious about skewing the

>facts. I know that metho is not a cure, nor prednisone and the reason that

>I am taking minocycline is because I have hope that perhaps it truly is the

>cure, but I won't know that for a while yet and just in case it doesn't

>work long term for me, I want to keep my eyes and ears open. (My NIH docs

>tell me mino is basically a mild DMARD and are glad it is working for me,

>but because of my synovitis and blood workups want to keep a careful eye on

>me - I'm due to see them again on the 11th - should be an interesting

>discussion) I tend to get nervous if someone says there is only one way -

>it's kind of like telling me that there is only one religion. There is no

>doubt that I have gotten better with minocycline, but I'm not all the way

>there yet and my hands have gotten worse, so I'm not sure which direction

>I'm headed in.

>

>Don't get me wrong - I think AP is the way to go, but if I went

>dramatically downhill or my docs told me they were seeing bone erosion on

>my xrays, I would probably find it difficult not to panic and give in to

>the big guns, despite knowing they wouldn't cure me.

>

>If nothing else, this note should provoke a lot of people to jump in and

>reply! <VBG>

>

>And before you tell me - no, I have not been as good as I should be about

>the diet, water and other things. But I have not allowed myself to be

>depressed, so that makes up for some of my other faults. (another VBG!)

>

>Mark

>RA 4/98 A/P 7/98

>Mino (100mg/2x/daily)

>http://members.tripod.com/~Mark_Holmes

>RA Chat: http://members.tripod.com/~Mark_Holmes/RA/ra.html

>mholmes@... ICQ # 18123139

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

>

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

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>to digest, go to the ONElist web site, at and

>select the User Center link from the menu bar on the left.

>

April 12, 2000

Dear Susie,

Amen Sister!

Love and Pah!

Libby

> Finally brethen, whatsoever things are true, whatsoever things are

honest,

> whatsoever things are just, whatsoever things are of good report;

if there

> be any virtue, and if there be any praise, think on these things.

Those

> things, that which ye have both learned, and received, and heard,

and seen

> in me, do : and the God of peace shall be with you. ians 4:

8-9 King

> Version

>

> And now dear brothers and sisters, let me say one more thing as I

close this

> letter. Fix your thoughts on what is true and honorable and right.

Think

> about things that are pure and lovely and admirable. Think about

things that

> are excellent and worthy of praise. Keep putting into practice all

you

> learned from me and heard from me and saw me doing, and the God of

peace

> will be with you. ians 4: 8-9 New Living Translation.

>

> Just some thoughts on positive thinking.

> Susie

May 9, 2001

Hi Liz and ,

You are both so right. I spent the earlier part of my life doing traditional

exercise programs and no matter how hard I worked out, I was never able to build

my immune system. After using Life Lift for a few years my entire body changed.

I started to enjoy a strong, healthy immune system. Before Life Lift I was sick

a good deal of the time. Since adding the Life Lift breaths regularly I rarely

even get a cold. In the past I would not dare be in the room with someone with a

cold or the flu because I would inevitably catch it. It feels so good to have

the confidence that I can travel, go shopping, do anything I want and enjoy

life, knowing that my body is strong and healthy.

Even though I am getting ready to turn 57 soon, I have never felt better in my

life. My energy is incredible, my stamina, strength, flexibility are better than

they were when I was chronologically very young. My husband and children tell me

I look better right now than I ever have, so that is a nice plus. My husband

says my skin and eyes " glow " when I do extra Life Lift breaths.

Ok, all of you, go do some good cleansing breaths and have a wonderful day!

Rashelle

Hi ,

Yes, I totally agree!!!! Oxygen is great for our bodies. :-) Breathing

with stretches is also less taxing on our bodies. Before BF and LL I did

aerobics, step aerobics, lunges, and squats. These regular types of

exercise really did a number on my knees. I don't think that they'll ever

be the same again. Who would ever imagine that deep breathing and

stretching could do so much for us? I'm healthier now and I'm looking

better all of the time.

Love, Liz

--------

February 7, 2002

In a message dated 2/7/02 7:18:20 PM Eastern Standard Time,

cozad76078@... writes:

> , In reply to your heartfelt post about the man suffering from

> cancer and those who reject natural healing methods. I can sure relate to

> your feeling of helplessness when others reject your ideas of help for

> them...

Thanks, . I appreciate your thoughts on that subject. Sometimes it IS

hard to just let go and let someone live his/her own life. In this

particular case I didn't really have any direct contact anyway, but it's

still sad and a bit frustrating at times.

Thanks for understanding what I was trying to say!

in health,

February 7, 2002

, In reply to your heartfelt post about the man suffering from cancer

and those who reject natural healing methods. I can sure relate to your feeling

of helplessness when others reject your ideas of help for them...especially

those close to us and those we dearly love. This has happened to me and

continues to happen often. I just shake my head and with some I push more than

they want and others I offer the help and don't push if they don't accept.

Actually I've never had anyone come back to me and ask for help the natural way.

Everyone just thinks I'm silly. Oh! That is so sad, isn't it. People just want

to trust the doctors. Today I was thinking of a friend who is dying and has been

a virtual guinea pig for drugs and new methods all her life. What I said about

diet and natual healing went in one ear and out the other. So many needless

early deaths. I guess like you, I have just set my resolve to help myself

naturally so that I may have a better chance of dying peacefully in my sleep at

an old age. Isn't that the best anyone can ask for? Instead of writhing in pain

at any age to die...and worse spending your last days in a nursing home or

hospital full of needles and tubes! I told my husband I don't care what happens

I want to end my days here on our beautiful mountain under the pines. Hopefully

that's a way off yet, gosh I'm still young....LOL! Oh! I have been totally

blessed with a spouse who is almost completely with me in this, so I'm not alone

and I have all you wonderful friends!

of Dewberry Hill

" People are like stain glass windows; they sparkle and shine when the sun is

out, but when the darkness sets in, their true beauty is revealed only if there

is alight within. " -Kubler Ross

" Then spake Jesus again unto them, saying, I am the light of the world: he that

followeth me shall not walk in darkness, but shall have the light of life. "

Holy Bible

---------------------------------

November 16, 2002

In a message dated 11/16/02 9:46:28 PM, rayn@... writes:

<< Oxycodone, a narcotic pain-reliever, >>

Is that Percodin or Tylox?

I have taken it before, but have found that after a week, my body adjusts

and its effectiveness goes down. I have to save it for super emergencies.

Pris

Is your pig " ruling the roost " ? Are his litterbox habits perfect?

Is he obedient?

Check out " Potbellied Pig Behavior and Training " book at

www.valentinesperformingpigs.com

November 16, 2002

wrote: I'm slipping in the pain area. I take

Methrotrexate, Piroxicam and Oxycodone. After 5 day all I can say is that if

this is sucess,

please save me from success!

,

Methotrexate is a DMARD (Disease Modifying Anti-Rheumatic Drug). It is suppose

to work on the underlying cause of the disease to modify or reduce its

progression.

Piroxicam (Feldene) is a NSAID (non-steroidal anti-inflamatory Drug) and reduces

the inflammation caused by the disease and therefore reduce the pain the

inflammation causes. Some NSAID also have pain reduction effects.

Oxycodone, a narcotic pain-reliever, is usually prescribed as Oxycontin, a slow

release formula. Depending upon the doseage prescribed part of the medication

goes to work immediately and you will notice a reduction in pain around an hour

or longer. I also take it and usually have the best response from 1.5 to 2

hours after taking it. The rest of the doseage is in a slow release formula that

releases the medication over a 12 hour period.

Titrating (finding the best doseage amount for a particular patient) may take

awhile. Inform your doctor if you do not get relief, especially if your pain is

peaking again before the 12 hours are up. You will need to work with your

doctor over several months to find a doseage amount that is best for you.

It would also be beneficial to ask your doctor about oxycodone in an IR

(immediate release) form to be taken when you have breakthrough pain (pain that

'breaks through' the usual doseage). Everyone's pain levels vary from day to

day. You may get through a day and forget to take a pill if your pain levels

are low. Or you may find that you need the breakthrough medication on days when

your pain levels exceed their normal levels.

My own pain clinic doctor will not prescribe break-through medications even

though a pain specialist he asked me to see reccommended that he do so. He did

follow the pain specialist's reccommendation to change my Oxycontin from every

12 hours to every 8 hours. This did help tremendously.

Currently I find myself in a yo-yo of up and down levels of pain over an 8 hour

period. By the fifth hour after taking the oxycontin I can feel the pain

building up. By the end of the sixth hour I'm heading back to bed with

escalating pain levels which are always accompanied by a horrible fatigue and

painful muscular spasms. By the eighth hour I am in terrible pain . After

taking the oxycontin I have to wait another hour before being able to think

about getting out of bed again.

I do have Darvon N100 with 650 mg of Tylenol prescribed for every 6 hours. This

does help bridge the gap, but not greatly. I also take Flexeril

(cyclobenzaprine), a muscle relaxer which does make a great difference in the

muscular spasms. It is a medication I cannot live without. The oxycontin does

help greatly with the pain, but it does not stop the muscular spasms.

I was also taking Klonopin .05 mg one to two times a day which helped me manage

the pain much better. However, for some reason my pain clinic doctor suddenly

decided he wouldn't prescribe it any longer and abruptly discontinued it with no

warning. I find my ability to manage the pain is much less without it.

I will be seeing a rheumatologist in December and will be discussing pain

medications as well as hopefully adding Enbrel and methotrexate or another

combination of DMARDs and anti-tumour necrosis factor medications TNFs.

Since you are taking piroxicam and methotrexate you should have your liver

enzyme functions tested every few months. I took piroxicam for about 15 years,

finding it easy to deal with since it only had to be taken once a day compared

to several times a day for other NSAIDs. However, piroxicam is one of the worst

offenders for screwing up liver and kidney function. Since it did not seem to be

reducing inflammatory responses my doctors discontinued it about 5 years ago.

Once you cross the 50 year old age level your chance of liver and kidney

problems sky-rockets.

One good research report recently found out that rheumatoid arthritis patients

who took methotrexate had the same death rates as the general population. This

is an encouraging report for many RH patients since other research reports

reported that Rheumatoid arthritis patients had death rates up to 12 years

earlier than the general population.

I would hope that those of us with Spondy diseases would experience much the

same positive effect when taking methotrexate. One possibility for this

reduction in death rates for RH patients on methotrexate could be that the

methotrexate reduced the need for DMARDs and steroids like prednisone which also

have negative side-effects when taken for long periods of time.

At the moment I'm almost ready to take anything prescribed in the hope that

inflammation and pain would be reduced. I've always turned down methotrexate

previously.

Ray

May 21, 2003

ReBecca,

I'll bet you half of those kids in middle school who are bulies and or

fighters, that are so helpful with your child, are also " special needs " kids

who have slipped through the cracks. There is a heart in there, someone just

has to reach it!!

Loree

July 17, 2004

,

As I've said before, we're all different, and what works for one may not

work for another. I happen to be allergic or have serious adverse side effects

to all meds for arhtritis and AS, with the exception of prednisone.

It works great for me, no bad side effects, and with calcium and Fosamax, my

bond density screenings haven't changed. I can also go off it without any

problems.

Amazing how we can react so differently to meds. I've always wondered if

there was any research indicating why that happens. I know people who can't

take any form of codeine, but can take Darvon or Morphine. I can't take Darvon

or Morphine, but have no problems with any form of codeine. Doesn't make any

sense to me!

Must be in the DNA!!!

Dix

[ ] Some thoughts

Dear a:

Thank you for all your information on the drugs we use for our conditions. I

appreciate all your work concerning this.

I just want to comment on one thing. Some people feel pain meds are so

dangerous yet they take prednisone and not fear the side effects that, it

causes.

I have taken prednisone in low doses for about 15 years and even though my

doses have been low, I have serious side effects. I have cataracts,

bone loss, osteoporosis, DDD, and many other things. Also, I have a severe

breathing disorder called atelectasis caused by the prednisone in which I get

severely out of breath when taking 10 steps or more. I have to use a scooter

to walk any kind of distance. I cannot get off of the prednisone even though

I

am only taking 5 MG. If I try to come off, (and I have tried) I can't walk

at all and have severe pain.

If this is not more dangerous then any pain meds I don't know what is. How

can Doctors put patients on high doses of prednisone and not worry about these

side effects and have they even made their patients aware of what they can do?

My Doctors didn't know about how bad things could get when they put me on it

for my kidney transplant. They had to use the medicine then. However,

hopefully Doctors will use other medicines now instead of prednsione since

they are

now aware of what it can do. I can't understand using prednisone at a high

dose now when there are so many other meds available.

Sincerely,

, (Anjillah)

November 3, 2005

Elenii,

I cannot understand the point you are trying to make........??????

Do you have implants are you happy with them? if so good for you, I was very happy with mine for nine years until things went horribly wrong, if only I could have been for warned of what was in store for the two children I had after implants.

I found your email to be insulting and condescending, but I get the feeling that Was your point. As you probably have your own agenda here I will not bore you with the details.

Sue

November 3, 2005

Dear Rogene/ Patty and the other moderators.

I am sorry that I sent a rather snotty reply to Elenii, I usually dont bother but I have had a difficult time of things lately, and her tone just really bugged me.

I hope I have not upset anyone else.

Love Sue.

November 3, 2005

There are over 5000 journal articles on problems from any number of

implants. I think you are reading the wrong literature and listening to

the wrong people. We were all brainwashed to a point, and we all tried to

talk ourselves out of believing implants were the problem.

But, there are well over 200,000 complaints registered with the FDA on

silicone breast implants and about 150,000 problem reports on saline

implants (growing at a fast rate), so I do not think it is a small

minority, as the medical profession would try to get us to believe.

Lynda

At 08:32 AM 11/3/2005, you wrote:

>Hello,

>

>Thank you to all of you who took time to respond to my question. I

>thought I'd briefly answer some of the respones. They're way down the

>line now, and as I received digest, my original post/respones aren't

>easily found unless I look into archives. Anyway...

>

>Rogene, thank you. I would like proof for the same reason anyone would

>want proof about any sort of strong opinion and symtpoms described

>here. It's perfectly reasonable to ask for actual evidence in many

>cases. Sometimes, however, I know that's hard to provide. We look at the

>symptoms and make our best guess. But if I could have actual hard

>evidence that implants are the absolute cause of sudden disease, it would

>at least help me form a more definitive conclusion.

>

>Group, there is no argument that you have experienced trauma, tragedy, and

>difficulty on receiving, during, or after implantation. My questions are

>whether you know that the implants actually caused your troubles. It's

>reasonable that you can conclude that they have. Yet, there are many

>similar prostheses that people have put in yearly, such as hip

>replacements, toothe replacements, eye replacements, any joint

>replacement, pacemakers, or any such device. Yet, I don't read anything

>along those lines causing difficulties or diseases.

>

>There are a percentage of women who get these diseases, a rather small

>percentage. And there are those who experience virtually no problems, no

>disease from breast implants. I know a lady personally who has had them

>for 20 years. She has had no reported or known problems. I'm sorry that

>this does not corroborate the reason for this forum.

>

>I tried to convey my sympathy and respect for the many of you whose

>situation is validly expressed here. I'd do nothing to demean you. I

>wrote someone here offlist, who also kindly responded. Yet, what I read

>from her response was similar to " It's just a matter of time. " My

>friend, however, is among several I know who experience no grave health

>problems.

>

>Again, according to what I know, the studies show only that the percentage

>contracting a disease is small. If we can't prove that each and every

>woman with implants, whether saline or silicone, will get a

>life-threatening disease or health problem, why should we decide that

>every woman with implants will?

>

>I know my statements may cause you some raised emotions here. Please try

>to understand what I'm saying. Please be calm in your answers. I'm not

>presenting my argument to cause you any more grief than you're now

>experiencing; I'm not invalidating what you believe. I'd be the first to

>support any woman who contracted problems with respect for her, her

>feelings, her experience and trauma as result of implantation, IF i *knew

>without a shadow of reasonable doubt* that the above was caused by breast

>implantation. I say this because many of us are genetically prone to

>some of the difficulties incurred. Many of us would have marital

>problems, arthrosis, or any other health issue.

>

>And to decided that you know that those of us with no serious health

>problems who have implants do not value our health, let me tell you, you

>are completely wrong. I know of no woman who doesn't value her health, as

>do I. But for me to go around predicting that all women with implants

>*will* experience severe health problems is erroneous. If I can provide

>actual scientific evidence, whatever that may be, that only a percentage

>of precious women will experience severe problems, then it's reasonable to

>say. If I can't provide evidence that all women will get sick, then it

>might be better to present statements along these lines, rather than

>deciding that I have this prediction correctly.

>

>My friend, with the implants for 20 years and who has no problems,

>including others that I know, proves that some women do not experience

>problems from breast implants. You are the percentage of women who

>are. This is tragic.

>

>Elenii

>

>Opinions expressed are NOT meant to take the place of advice given by

>licensed health care professionals. Consult your physician or licensed

>health care professional before commencing any medical treatment.

>

> " Do not let either the medical authorities or the politicians mislead you.

>Find out what the facts are, and make your own decisions about how to live

>a happy life and how to work for a better world. " - Linus ing,

>two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)

>

November 3, 2005

Elenii,

I'm not going to go into everything that I've

observed, experience over the past 12 years of being

involved in implant support. NOTHING will make me

believe that breast implant are safe.

I guess your message does anger me . . . You sound as

though you could be sent by the plastic surgeons or

manufacturer's to lay the way for their " new,

improved " bag of toxins. It wouldn't be the first

time.

After seeing hundreds of women get sick, and get

better after having their implants out, I believe with

all my heart and soul that breast implants do make

women sick. When they get sick, 99% of the doctors

deny the connection between their illness and their

implants. Many of them lose their career, savings,

husbands, insurance, and sense of security. The bottom

line? Playing Russian roulette with ones life via

breast implants is insane. The risk of suicide among

women with implants is almost four times that of other

plastic surgery patients. Any idea why?

In my personal life, I know of NO ONE who has had

implants for an extended period (10 years or more) who

isn't experiencing some health problems that are

common to those of the implant women we see here. When

I talk to people about breast implants, they tell me

of women they know who are terribly ill, who they know

have breast implants - but don't believe implants are

at the root of their problems.

I started a support group for the families of children

born to implanted women 's SiliconeKids. . . What

I've observed is that, after six years of being

implanted, I can predict the problems their children

are experiencing. Most of the parents haven't made the

connection. Doctors aren't making the connection

either. In general, each successive child is more

severely affected.

The problems start with rashes and skin problems,

progress to digestive disorders, painful joints,

scleroderma, deformed extremities, cognitive and

emotional disorders, and even deformed sexual organs.

-i.e. Is it a boy or a girl?

IMHO, any woman planning to have a family should at

least wait until her children are born! . . . The

horror and guilt that accompany a child made ill

because of breast implants is unbelievably hard to

live with. Unfortunately, the manufacturer's are not

interested in studying either the women who get sick

after implants, or the children born to them. Any idea

why? Why do the manufacturer's remove women from their

studies when they have their implants removed without

replacement?

So . . . I turn this around to you . . . The burden of

proof that implants are safe should be on the people

who are getting rich putting them in women's bodies.

Those of us who are sick shouldn't have to prove the

cause! For us, the proof is that, once women get the

toxic bags out of their bodies, they start recovering

from a host of horrible symptoms doctors can't

explain.

If you're happy with your implants, I'm happy for you

- but I'm also very, very concerned for you. Maybe

you'll never have a problem. At least, after reading

some of our posts, you should be able to recognize

your symptoms as implant related and do something

sooner rather than later.

Wishing you the best!

Rogene

November 3, 2005

Actually, I thought mine this morning was a bit terse. But, I thought her

ignorance was a bit much. What is she up to? She seems to be on both sides.

Lynda

At 10:18 AM 11/3/2005, gibbense@... wrote:

>Dear Rogene/ Patty and the other moderators.

>I am sorry that I sent a rather snotty reply to Elenii, I usually dont

>bother but I have had a difficult time of things lately, and her tone just

>really bugged me.

>I hope I have not upset anyone else.

>

>Love Sue.

>

>Opinions expressed are NOT meant to take the place of advice given by

>licensed health care professionals. Consult your physician or licensed

>health care professional before commencing any medical treatment.

>

> " Do not let either the medical authorities or the politicians mislead you.

>Find out what the facts are, and make your own decisions about how to live

>a happy life and how to work for a better world. " - Linus ing,

>two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)

>

November 3, 2005

Eleni,

No one can say that each and every person who is implanted will become ill

because it isn't necessarily true, just as not every person who took Vioxx

died. I took Vioxx prior to knee surgery and considered it a great

anti-inflammatory, yet Vioxx is now off the market because of those that it

did affect. I don't see that implants will be removed from the market

because they are such big sellers for plastic surgeons but I would be happy

if doctors explained the real risks of illness to each and every patient.

We would all have full knowledge of what we could be doing to our bodies.

If I become ill because of something I knowingly did to myself, I can't

blame anyone else but myself.

Kenda

11/3/05 9:32 AM

> Hello,

> Thank you to all of you who took time to respond to my question. I thought

> I'd briefly answer some of the respones. They're way down the line now, and

> as I received digest, my original post/respones aren't easily found unless I

> look into archives. Anyway...

> Rogene, thank you. I would like proof for the same reason anyone would want

> proof about any sort of strong opinion and symtpoms described here. It's

> perfectly reasonable to ask for actual evidence in many cases. Sometimes,

> however, I know that's hard to provide. We look at the symptoms and make our

> best guess. But if I could have actual hard evidence that implants are the

> absolute cause of sudden disease, it would at least help me form a more

> definitive conclusion.

> Group, there is no argument that you have experienced trauma, tragedy, and

> difficulty on receiving, during, or after implantation. My questions are

> whether you know that the implants actually caused your troubles. It's

> reasonable that you can conclude that they have. Yet, there are many similar

> prostheses that people have put in yearly, such as hip replacements, toothe

> replacements, eye replacements, any joint replacement, pacemakers, or any

> such device. Yet, I don't read anything along those lines causing

> difficulties or diseases.

> There are a percentage of women who get these diseases, a rather small

> percentage. And there are those who experience virtually no problems, no

> disease from breast implants. I know a lady personally who has had them for

> 20 years. She has had no reported or known problems. I'm sorry that this

> does not corroborate the reason for this forum.

> I tried to convey my sympathy and respect for the many of you whose

> situation is validly expressed here. I'd do nothing to demean you. I wrote

> someone here offlist, who also kindly responded. Yet, what I read from her

> response was similar to " It's just a matter of time. " My friend, however, is

> among several I know who experience no grave health problems.

> Again, according to what I know, the studies show only that the percentage

> contracting a disease is small. If we can't prove that each and every woman

> with implants, whether saline or silicone, will get a life-threatening

> disease or health problem, why should we decide that every woman with

> implants will?

> I know my statements may cause you some raised emotions here. Please try to

> understand what I'm saying. Please be calm in your answers. I'm not

> presenting my argument to cause you any more grief than you're now

> experiencing; I'm not invalidating what you believe. I'd be the first to

> support any woman who contracted problems with respect for her, her

> feelings, her experience and trauma as result of implantation, IF i *knew

> without a shadow of reasonable doubt* that the above was caused by breast

> implantation. I say this because many of us are genetically prone to some of

> the difficulties incurred. Many of us would have marital problems,

> arthrosis, or any other health issue.

> And to decided that you know that those of us with no serious health

> problems who have implants do not value our health, let me tell you, you are

> completely wrong. I know of no woman who doesn't value her health, as do I.

> But for me to go around predicting that all women with implants *will*

> experience severe health problems is erroneous. If I can provide actual

> scientific evidence, whatever that may be, that only a percentage of

> precious women will experience severe problems, then it's reasonable to say.

> If I can't provide evidence that all women will get sick, then it might be

> better to present statements along these lines, rather than deciding that I

> have this prediction correctly.

> My friend, with the implants for 20 years and who has no problems,

> including others that I know, proves that some women do not experience

> problems from breast implants. You are the percentage of women who are. This

> is tragic.

> Elenii

November 3, 2005

Elenii,

Statistics (and the FDA) indicate that the majority of implants do NOT last 20

years.

I had mine removed at 20 years. I only had discovered they were ruptured after

19 years

and I had no idea that my increasing health problems were related.

Elenii, I do not believe that we have enough information to state categorically

that only a

'small percentage' become ill from implants. In fact, my neurologist and

rheumatologist

both believe implants DO cause problems, for a significant number of women.

More importantly, the issue is not proving that they cause harm. The issue

SHOULD be

proving that they are safe. The manufacturers have not done this.