new member

[Guest guest]

Hi Judith,

Welcome, you have the right frame of mind to beat this...

Keep on keeping on.

Regards,

Tom

[low dose naltrexone] new member

> Hi all. I am new to your group, but not new to MS. I was dxd in

> 1995 and first thing my neuro said to me was get down to Social

> Securiy and file for disability. That I did and so I continued on

> with my life. I went on Avonex and stayed on it for five years and I

> did very well on it! Then I got married in 2001 and went off the

> Avonex, two bad decisions I think I made. My condition went downhill

> steadily. I went back on the Avonex in June of this year, I thought

> I would notice improvement but I didn't and after three months I

> started having prolonged episodes of bad side effects, nausia, muscle

> aches, pain and fatigue. The only good thing I did was to stay on ldn

> and increased my dosage to 4.5 that is helping. I went off the

> Avonex again and I guess I will stay off and just be on the ldn. What

> I have noticed is that the hair and nail growth I used to experience

> on ldn is no longer obvious. I recently went on DLPA as I have seen

> that others have and are experiencing improvement in mood and

> health, I only started two days ago so I haven't noticed any change

> yet but I will let you know. I take my ldn usualy around 9pm

> sometimes later and when I do my sleep pattern is disrupted, I take

> 12 mg of melatonin which seems to be working just fine right now.

>

> I am between a rock and a hard place now as I know that ldn is the

> answer and that the crab drugs are not. Just wanted to say hi and

> let you know I am here and reading your posts and that you are in my

> thoughts and prayers. I know we can beat this thing with faith and

> the Lord.

>

>

>

>

>

[Guest guest]

Hi Judith, I am fairly new here also. Welcome aboard! I am also

off the crab drugs. I wanted to ask what DLPA is? I have seen it

mentioned before.

Thanks and good luck!

> Hi all. I am new to your group, but not new to MS. I was dxd in

> 1995 and first thing my neuro said to me was get down to Social

> Securiy and file for disability. That I did and so I continued on

> with my life. I went on Avonex and stayed on it for five years and

I

> did very well on it! Then I got married in 2001 and went off the

> Avonex, two bad decisions I think I made. My condition went

downhill

> steadily. I went back on the Avonex in June of this year, I

thought

> I would notice improvement but I didn't and after three months I

> started having prolonged episodes of bad side effects, nausia,

muscle

> aches, pain and fatigue. The only good thing I did was to stay on

ldn

> and increased my dosage to 4.5 that is helping.

[Guest guest]

--- In low dose naltrexone , Judith A Montera <judith455@c...>

wrote:

>

> Hi all. I am new to your group, but not new to MS. I was dxd in

> 1995 and first thing my neuro said to me was get down to Social

> Securiy and file for disability. That I did and so I continued on

> with my life. I went on Avonex and stayed on it for five years and I

> did very well on it! Then I got married in 2001 and went off the

> Avonex, two bad decisions I think I made. My condition went downhill

> steadily. I went back on the Avonex in June of this year, I thought

> I would notice improvement but I didn't and after three months I

> started having prolonged episodes of bad side effects, nausia, muscle

> aches, pain and fatigue. The only good thing I did was to stay on ldn

> and increased my dosage to 4.5 that is helping. I went off the

> Avonex again and I guess I will stay off and just be on the ldn. What

> I have noticed is that the hair and nail growth I used to experience

> on ldn is no longer obvious. I recently went on DLPA as I have seen

> that others have and are experiencing improvement in mood and

> health, I only started two days ago so I haven't noticed any change

> yet but I will let you know. I take my ldn usualy around 9pm

> sometimes later and when I do my sleep pattern is disrupted, I take

> 12 mg of melatonin which seems to be working just fine right now.

>

> I am between a rock and a hard place now as I know that ldn is the

> answer and that the crab drugs are not. Just wanted to say hi and

> let you know I am here and reading your posts and that you are in my

> thoughts and prayers. I know we can beat this thing with faith and

> the Lord.

>

==========

Judith

Where do you get your LDN filled and also, do you know what your filler is in

the capsules?

If you don't want all the messages & replies coming to your inbox you can change

how you read the messages here by clicking Edit Membership at the top of the

message board on the lefthand side.

Welcome,

[Guest guest]

Hi , the full name of DLPA is DL-Phenylalanine and I am taking

the 500 mg cap, Solgar brand. It is available in most health food

stores that carry Solgar items. The DLPA keeps the endorphins

elavated throught the day. I take one in the morning and one in the

afternon,

I have been on ldn for almost three years now .

Hope this helps, good luck.

Judi

On Nov 30, 2005, at 7:50 PM, wrote:

> Hi Judith, I am fairly new here also. Welcome aboard! I am also

> off the crab drugs. I wanted to ask what DLPA is? I have seen it

> mentioned before.

>

> Thanks and good luck!

>

[Guest guest]

Hi Judith,

Thank you for explaining that. Have you noticed a difference taking

the DLPA? It sounds like it would work in theory.

Has you progression stopped?

Take Care

> Hi , the full name of DLPA is DL-Phenylalanine and I am taking

> the 500 mg cap, Solgar brand. It is available in most health food

> stores that carry Solgar items. The DLPA keeps the endorphins

> elavated throught the day. I take one in the morning and one in the

> afternon,

>

>

[Guest guest]

Hello and all,

My name is Emanuel and I am Judi's husband. Judi wanted me to address

your question as I do the compounding for her.

A little background info first. When I discovered the LDN website, I

printed out the information on low doses of Naltrexone as a protocol

to halt the progression of Multiple Sclerosis and bound it in a

folder to present to her Neurologist. Judi's neuro was not receptive

and would not even look at the information. We presented the

documentation to her General Practitioner. Her GP looked it over and

wrote a Rx on the spot for a six month supply. We wanted enough for a

monthly supply that would provide 3.0cc - 4.5cc per night. We started

her out on 3.0cc. Fortunately we have a compounding pharmacy locally

and they even added cherry flavoring to make it more palatable.

Now, being price conscious, when the six months were up and we needed

a new script, I requested Judi's GP to write a Rx for a standard

bottle of quantity 30, 50 mg tablets of Naltrexone. I then proceeded

to explain how I would use them and this holds true after over two

years of home compounding. We chose having it available as a liquid

as opposed to filled capsules so we could increase or decrease the

dosage with the same Rx.

We already had the empty bottles and the measuring syringes from our

pharmacy. I purchased a mortar and pestle from a local health food

store. We were already making distilled water with a Kenmore

distiller from Sears and I had a one ounce plastic measuring cup

calibrated in cc/ml, they are the same.

I make a month supply at a time by grinding 3 - 50mg tablets of

Naltrexone to yield 150mg of powder. I know you can by Naltrexone in

powdered form. However, you would need very accurate and costly

scales to measure it. The tablets are an inexpensive way of procuring

pre-measured doses. To the 150mg of powder, I add 150cc of distilled

water and shake well. I now have effectively converted 1mg of powder

to 1cc or ml of liquid. Judi can draw this out of the bottle with the

measuring syringe. It is kept refrigerated and I only make 150cc or

ml (they are the same) at a time. This is about a one month supply.

We have gone from spending $30 some dollars a month to $65 every

10-11 months depending on the dosage.

Regards,

Emanuel for Judi

On Nov 30, 2005, at 7:55 PM, Bren wrote:

> Judith

>

> Where do you get your LDN filled and also, do you know what your

> filler is in the capsules?

>

> If you don't want all the messages & replies coming to your inbox

> you can change how you read the messages here by clicking Edit

> Membership at the top of the message board on the lefthand side.

>

> Welcome,

>

[Guest guest]

Polly, Your story breaks my heart. I am so sorry for all you are going through. I cannot give you much advice because I am only a recovering augmented saline implant survivor. I don't know the struggles you are facing. The only thing I can suggest is going to see Dr. Lu-Feng in Cleveland Ohio. She is a top-rated reconstructive artist, who deals alot with cancer victoms. She may have a better understanding of what to do in your circumstance. She is also very knowledgable of implant related problems. She can and has done many TRAM-flap precedures and reconstruction of breasts with auto-genous tissue. You can check our list of recommended surgeons for her contact information. She may even find time for your emergent concerns for there may be some leakage going on inside of you. Many of us here have traveled far distances to be seen by her. Even if you were to only go to her

for her un-biased opinion and a referral, it may be worth the trip. I will be praying for my dear Polly, Lnorthdak76 <northdak76@...> wrote: I only found this group today and would like to introduce me and my implant situation and my distrust of doctors.After a lumpectomy I was diagnosis with breast cancer October 2005, the doctor told me "if" I had a mastectomy I would not need any additional cancer treatment, later I found it to be a lie. I am 47 and didn't want to live the next 30 years with only one breast so I checked into an implant and got lie #2. The plastic surgeon was quick to recommend silicone implants as perfectly safe and ideal for my small breast size. He stated that the most recent test results

have given silicone implants a "clean bill of health" and there was no proof to all the bad information out on them.I told him I only wanted the one implant and it should match the remaining breast, but in his ultimate wisdom he gave me an implant nearly twice my normal size. It is a Becker implant half silicone and half saline with a port to increase or decrease its size. I did not want additional surgeries to match my breasts and decided not to have a nipple surgically put on my reconstructed breast. I was prepared to live with two different sized breast and get on with life.Then on March 16 I went in to have the port surgically removed and guess what, the doctor botched it, he nicked the tube leading to the implant and all the saline leaked out! Now I am left with a hard silicone lump for a breast and a decision to make. Do I replace the silicone implant or do I have them put in a saline

implant or do I have them remove the implant and go through life with only one breast?The implant is under my chest muscle which was cut and a piece of cadavor tissue added all at the time of my mastectomy. If I choose to have the implant removed and not replaced what all do I need to tell the doctor to do and remove?? Besides the implant, should I have the cadavor tissue also removed? And in 4-5 months is there a capsular that should also be removed and how will I know that it was actually taken out? Do I request the implant to be given back to me and will the doctor give it to me? Will I have muscle damage and arm weakness, what will be my recovery time? After the doctor told me he cut the tube and the implant needed to be replaced, I asked him who was going to pay for the additional surgery and he said insurance. Is my insurance company responsible for this cost? Is he?

I told him I was going to call the Becker Implant company and report the implant had failed but he said it didn't, that he had cut the tube causing the leak. Is there anywhere I can turn for support or advice?Right now the implant is a hard distorted little lump, he claimed the silicone wasn't leaking but I am not so sure, I have a burning sensation in the lower part of my breast.Help me.Polly S.

Relax. virus scanning helps detect nasty viruses!

[Guest guest]

Polly,

Welcome to Saline Support! . . . I'm so sorry you've

been through so much! . . . I'm currently getting

radiation therapy for breast cancer right now. I can

relate to how doctors can betray you! . . . However,

after my implant experience, I'm ever so much more

skeptical!

I agree with that you need to be under the

care of an excellent surgeon. . . Dr. Feng would be an

excellent choice. Well worth the extra effort.

Dr. Feng would be better able that we are to tell you

what your options are regarding the surgery and costs

as well as who is responsible legally.

I wouldn't waste time in contacting her. If the

silicone portion of your implant is leaking, things

could get much worse.

Hugs and prayers,

Rogene

[Guest guest]

Hi ,

Welcome to Saline Support! . . .

It sounds like you've been through the mill! . . . But

you're on the right track.

The most important choice you have right now is that

of a surgeon. You need a surgeon who takes removing

your implants correctly seriously. The best method is

" en bloc " . . . That means removing the capsule that

has grown around your implants with the implants still

inside. . . The idea is to prevent anything that is

contained by the capsules from spilling into your

chest cavity. In some cases this can't be done. . .

You need a doctor who you can trust to make this

decision. . . At the minimum, you need ALL the capsule

removed. Drains should be used until there is no

significant drainage to prevent a fluid build up that

causes pain, inflammation, or further surgery.

We have a list of recommended doctors. However, other

doctors are certainly qualified to do the surgery.

It's a matter of whether they can be trusted to take

the time and effort to do the job right.

If a surgeon tells you that you will be deformed,

depressed, that you need new implants, run! . . .

Wrong doctor!

As far as all the health problems you're having right

now . . . Gathering diagnoses right now doesn't really

mean anything. Until your implants are removed, and

you've had time to detox - (give it at least a year) -

you really don't know what you're dealing with.

Medications often create additional problems! I'd

suggest seeing medical attention only when you have a

critical need. If you need private health insurance

one day, you'll find these diagnoses will haunt you!

One thing I would be concerned about is toxic shock .

.. . If you feel really sick, mention this to your

doctor. TS demands immediate care. I don't know what

tests are used, but it seems doctors don't look for

this as often as they should.

The book " The Maker's Diet " outlines an excellent

program that you can implement yourself. It will help

you restore your digestive system so you can get

nutrients from your food while eliminating as many

toxins as possible. No doubt there are other programs,

but Dr. Rubin has a comprehensive program that works.

We've found that naturists are more effective in

helping us too! . . . Finding a good one can be tricky

though - so be careful there! Do your own research and

be a knowledgeable consumer.

We have a host of recommendations in our archives.

Personally, I've found that, when I put my trust in

God, I'm drawn to those I need and repelled by those I

don't need (at the time). . . Just don't try to do

everything at once. Start detox programs slowly and

gradually increase. There's a phenomena known as a

Herximer effect. . . This means that you are likely to

have a negative reaction to a detox program that you

need. The trick is to manage detoxing while minimizing

herxes so you can continue to function.

We have an incredible group of women who understand

what you're going through and want to help. If you

have any questions, we're here!

Hugs and prayers,

Rogene

[Guest guest]

Yes,

I would echo that! The surgeon who removes them is possibly the most

important part of getting better. If they are not removed properly,

you can have many extra problems that are avoidable by using a

surgeon who does the procedure properly.

Lynda

At 07:31 AM 5/18/2006, you wrote:

>Hi ,

>

>Welcome to Saline Support! . . .

>

>It sounds like you've been through the mill! . . . But

>you're on the right track.

>

>The most important choice you have right now is that

>of a surgeon. You need a surgeon who takes removing

>your implants correctly seriously. The best method is

> " en bloc " . . . That means removing the capsule that

>has grown around your implants with the implants still

>inside. . . The idea is to prevent anything that is

>contained by the capsules from spilling into your

>chest cavity. In some cases this can't be done. . .

>You need a doctor who you can trust to make this

>decision. . . At the minimum, you need ALL the capsule

>removed. Drains should be used until there is no

>significant drainage to prevent a fluid build up that

>causes pain, inflammation, or further surgery.

>

>We have a list of recommended doctors. However, other

>doctors are certainly qualified to do the surgery.

>It's a matter of whether they can be trusted to take

>the time and effort to do the job right.

>

>If a surgeon tells you that you will be deformed,

>depressed, that you need new implants, run! . . .

>Wrong doctor!

>

>As far as all the health problems you're having right

>now . . . Gathering diagnoses right now doesn't really

>mean anything. Until your implants are removed, and

>you've had time to detox - (give it at least a year) -

>you really don't know what you're dealing with.

>Medications often create additional problems! I'd

>suggest seeing medical attention only when you have a

>critical need. If you need private health insurance

>one day, you'll find these diagnoses will haunt you!

>

>One thing I would be concerned about is toxic shock .

>. . If you feel really sick, mention this to your

>doctor. TS demands immediate care. I don't know what

>tests are used, but it seems doctors don't look for

>this as often as they should.

>

>The book " The Maker's Diet " outlines an excellent

>program that you can implement yourself. It will help

>you restore your digestive system so you can get

>nutrients from your food while eliminating as many

>toxins as possible. No doubt there are other programs,

>but Dr. Rubin has a comprehensive program that works.

>

>We've found that naturists are more effective in

>helping us too! . . . Finding a good one can be tricky

>though - so be careful there! Do your own research and

>be a knowledgeable consumer.

>

>We have a host of recommendations in our archives.

>Personally, I've found that, when I put my trust in

>God, I'm drawn to those I need and repelled by those I

>don't need (at the time). . . Just don't try to do

>everything at once. Start detox programs slowly and

>gradually increase. There's a phenomena known as a

>Herximer effect. . . This means that you are likely to

>have a negative reaction to a detox program that you

>need. The trick is to manage detoxing while minimizing

>herxes so you can continue to function.

>

>We have an incredible group of women who understand

>what you're going through and want to help. If you

>have any questions, we're here!

>

>Hugs and prayers,

>

>Rogene

>

>

>

>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)

>

>See our photos website! Enter " implants " for access at this link:

><http://.shutterfly.com/action/>http://.shutterfly.co\

m/action/

>

>

[Guest guest]

Then you can consider diet. Diet has made a world of difference for me and many others.Lynda <coss@...> wrote: Yes,I would echo that! The surgeon who removes them is possibly the most important part of getting better. If they are not removed properly, you can have many extra problems that are avoidable by using a surgeon who does the procedure properly.LyndaAt 07:31 AM 5/18/2006, you wrote:>Hi ,>>Welcome to Saline Support! . . .>>It sounds like you've been through the mill! . . . But>you're on the right track.>>The most important choice you have right now is that>of a surgeon. You need a surgeon who takes removing>your implants correctly seriously. The best method is>"en bloc" . . . That means removing the

capsule that>has grown around your implants with the implants still>inside. . . The idea is to prevent anything that is>contained by the capsules from spilling into your>chest cavity. In some cases this can't be done. . .>You need a doctor who you can trust to make this>decision. . . At the minimum, you need ALL the capsule>removed. Drains should be used until there is no>significant drainage to prevent a fluid build up that>causes pain, inflammation, or further surgery.>>We have a list of recommended doctors. However, other>doctors are certainly qualified to do the surgery.>It's a matter of whether they can be trusted to take>the time and effort to do the job right.>>If a surgeon tells you that you will be deformed,>depressed, that you need new implants, run! . . .>Wrong doctor!>>As far as all the health problems you're having

right>now . . . Gathering diagnoses right now doesn't really>mean anything. Until your implants are removed, and>you've had time to detox - (give it at least a year) ->you really don't know what you're dealing with.>Medications often create additional problems! I'd>suggest seeing medical attention only when you have a>critical need. If you need private health insurance>one day, you'll find these diagnoses will haunt you!>>One thing I would be concerned about is toxic shock .>. . If you feel really sick, mention this to your>doctor. TS demands immediate care. I don't know what>tests are used, but it seems doctors don't look for>this as often as they should.>>The book "The Maker's Diet" outlines an excellent>program that you can implement yourself. It will help>you restore your digestive system so you can get>nutrients from your food while

eliminating as many>toxins as possible. No doubt there are other programs,>but Dr. Rubin has a comprehensive program that works.>>We've found that naturists are more effective in>helping us too! . . . Finding a good one can be tricky>though - so be careful there! Do your own research and>be a knowledgeable consumer.>>We have a host of recommendations in our archives.>Personally, I've found that, when I put my trust in>God, I'm drawn to those I need and repelled by those I>don't need (at the time). . . Just don't try to do>everything at once. Start detox programs slowly and>gradually increase. There's a phenomena known as a>Herximer effect. . . This means that you are likely to>have a negative reaction to a detox program that you>need. The trick is to manage detoxing while minimizing>herxes so you can continue to function.>>We have an

incredible group of women who understand>what you're going through and want to help. If you>have any questions, we're here!>>Hugs and prayers,>>Rogene>>>>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)>>See our photos website! Enter "implants" for access at this link:><http://.shutterfly.com/action/>http://.shutterfly.com/action/>>

[Guest guest]

---Welcome, ! I too am explanting on July 26...I'm also on a

cancellation list in case I can get in earlier. I am SOOOO happy for

you. I am excited about getting my health back. I have had implants

for 20 yrs. and have become VERY ill the last few years, especially.

Many of your symptoms are mine as well. You'll probably find the

similarity when you read other women's stories. God bless you and

you'll be in my prayers. Anytime you need support, I'm here for you.

Love 'n Peace,

Sunny

In , " sedwards41255 "

<sedwards41255@...> wrote:

>

> Hi

> My name is . I have had my saline implants for 10 years.

The

> last 3 years or so...after a couple of years of symptons I started

> going to doctors. My symptons have included alopecia right after

> the surgery that was cleared up, joint pain, tingling in my feet,

> bloating and unexplained weight gain even on less than 1000

calories

> a day. The last 2 years the symptons have become more

> serious...with thyroiditis, confirmed heavy metal toxicity thru

> blood work (mercury, lead, aluminum and boron), microscopic

> hematuria (doctor can't find the reason), skin rashes on upper arms

> and chest that will only go away with prednisone which causes its'

> own set of problems, tenderness in ribs, fatique, muscle wasting,

> scary abdominal swelling which was recent while on chelating agents

> to get rid of the heavy metals, joint pain, .etc.

> The test I have had include ultra sounds of thyroid, of adrenal

> glands, full body gallium scan, pelvic and abdominal ultra sounds,

> repeated hormone test, blood chemistries, chemistry panels, food

> allergy testing, test...etc...etc. My doctor can't find

> anything ...but at least she says she knows it is something and

that

> it is chronic. So...I have told her I thought it was the implants..

> All of my liver and kidney function test are normal...but I have an

> appointment with a nephrologist sometimes in July. I just think my

> doctor is chasing the wrong thing....so in order to eliminate any

> possibility that it is the implants.....

> I went today for a consult to have these awful things taken

> out...and am scheduled for surgery on June 12th. Please tell

> me...that this gets better.....!!!

> Will the rash go away? Will the bloating and what I think is a

> metabolic disruption correct itself?

> This was the dumbest thing I ever did. The only tests results that

> indicated anything was a high Creactive protein level, a low

> estrogen and a high testosterone and high level of heavy metals.

>

> Also...any suggestions for which antibiotics or anything else I

need

> to ask the plastic surgeon about after the explant? I certainly

> don't want problems associated with any bacteria left in my

> body...etc...

>

[Guest guest]

,

I'm thankful that you've found us, this site saved my life and I'd

love to be able to help you get through this. I only had my

implants a week or so before they started making me sick - some of

us get sick right away, but for others it takes years. We all heal

differently as well. I think you're wise in following your

instincts. Some of us get sick from the implants themselves, but

others seem to get sick from mold and fungus that forms in and

around the implants. There are alot of common complaints among

implanted women, and I had alot of the symptoms you are having, only

mine started right away. I'm glad they happened right away because

I knew it was the implants, and I had them out within six months of

getting them. That was six months ago, and many of my symptoms have

eased up, and some of the more stubborn ones are taking a little

longer.

Sis

--- In , Rogene S <saxony01@...>

wrote:

>

> Hi ,

>

> Welcome to Saline Support! . . .

>

> It sounds like you've been through the mill! . . . But

> you're on the right track.

>

> The most important choice you have right now is that

> of a surgeon. You need a surgeon who takes removing

> your implants correctly seriously. The best method is

> " en bloc " . . . That means removing the capsule that

> has grown around your implants with the implants still

> inside. . . The idea is to prevent anything that is

> contained by the capsules from spilling into your

> chest cavity. In some cases this can't be done. . .

> You need a doctor who you can trust to make this

> decision. . . At the minimum, you need ALL the capsule

> removed. Drains should be used until there is no

> significant drainage to prevent a fluid build up that

> causes pain, inflammation, or further surgery.

>

> We have a list of recommended doctors. However, other

> doctors are certainly qualified to do the surgery.

> It's a matter of whether they can be trusted to take

> the time and effort to do the job right.

>

> If a surgeon tells you that you will be deformed,

> depressed, that you need new implants, run! . . .

> Wrong doctor!

>

> As far as all the health problems you're having right

> now . . . Gathering diagnoses right now doesn't really

> mean anything. Until your implants are removed, and

> you've had time to detox - (give it at least a year) -

> you really don't know what you're dealing with.

> Medications often create additional problems! I'd

> suggest seeing medical attention only when you have a

> critical need. If you need private health insurance

> one day, you'll find these diagnoses will haunt you!

>

> One thing I would be concerned about is toxic shock .

> . . If you feel really sick, mention this to your

> doctor. TS demands immediate care. I don't know what

> tests are used, but it seems doctors don't look for

> this as often as they should.

>

> The book " The Maker's Diet " outlines an excellent

> program that you can implement yourself. It will help

> you restore your digestive system so you can get

> nutrients from your food while eliminating as many

> toxins as possible. No doubt there are other programs,

> but Dr. Rubin has a comprehensive program that works.

>

> We've found that naturists are more effective in

> helping us too! . . . Finding a good one can be tricky

> though - so be careful there! Do your own research and

> be a knowledgeable consumer.

>

> We have a host of recommendations in our archives.

> Personally, I've found that, when I put my trust in

> God, I'm drawn to those I need and repelled by those I

> don't need (at the time). . . Just don't try to do

> everything at once. Start detox programs slowly and

> gradually increase. There's a phenomena known as a

> Herximer effect. . . This means that you are likely to

> have a negative reaction to a detox program that you

> need. The trick is to manage detoxing while minimizing

> herxes so you can continue to function.

>

> We have an incredible group of women who understand

> what you're going through and want to help. If you

> have any questions, we're here!

>

> Hugs and prayers,

>

> Rogene

>

[Guest guest]

I had my implants for six months and had capsules, I remember waking

up and the nurse asked if I wanted to see them (I did).

Sis

> Hi Patty...

> Thanks again for your words of encouragement. I am still learning

> about this surgical procedure. I would love to keep my July 12th

> appointment because at this point I just want them out.

> I guess I would like to understand just what a capsule is. In

other

> words....is it possible there is no scar tissue or calcification

at

> all? Mine were put under the muscle. I am sure there will be a

big

> space to fill...or the muscle will have to reattach....etc...but

if

> ya'll could explain to me....I sure would appreciate it. Does a

> capsule always form?

> Is it that the chemicals used to make the implants leach into the

> capsule and become embedded in the capsule???

>

>

>

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

> Sneak preview the all-new .com. It's not radically

different. Just radically better.

>

[Guest guest]

Thanks Patty.....yes I am making some inquiries. I am sufficiently

worried that if not done right and if i don't get better....I will

not be happy and might become hopeless again. I think I will take a

look at the doctor list again as well.

> Hi Patty...

> Thanks again for your words of encouragement. I am still learning

> about this surgical procedure. I would love to keep my July 12th

> appointment because at this point I just want them out.

> I guess I would like to understand just what a capsule is. In

other

> words....is it possible there is no scar tissue or calcification

at

> all? Mine were put under the muscle. I am sure there will be a

big

> space to fill...or the muscle will have to reattach....etc...but

if

> ya'll could explain to me....I sure would appreciate it. Does a

> capsule always form?

> Is it that the chemicals used to make the implants leach into the

> capsule and become embedded in the capsule???

>

>

>

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

> Sneak preview the all-new .com. It's not radically

different. Just radically better.

>

[Guest guest]

Hi

And welcome to our group. Your symptoms are very typical of women

sick from implants. I had mine eleven years before I realized that

it was the implants making me sick. I have been explanted four

years. Many symptoms improved right away, others rotated in and out

and I am still working on. The way each of us heals is highly

individualistic. But yes, the rash and the bloating are symptoms

that should go away as your body heals form its toxic load. It is

important that your PS take out your implants properly. This would

mean taking them out " en bloc " and removing the capsule surrounding

the implant to ensure best chance of recovery. They can contain

bacteria or other pathogens and also debri from the shell of the

implant. My capsules were imflamed. Your doctor should know which

antibiotic to use. Also be sure to find out if he is using drains.

Drains are important to help prevent infection and to heal faster

and better. Is your PS supportive of your having your implants out?

That is really important and very good for your emotional well being

also!

Hugs, Kathy

>

> Hi

> My name is . I have had my saline implants for 10 years.

The

> last 3 years or so...after a couple of years of symptons I started

> going to doctors. My symptons have included alopecia right after

> the surgery that was cleared up, joint pain, tingling in my feet,

> bloating and unexplained weight gain even on less than 1000

calories

> a day. The last 2 years the symptons have become more

> serious...with thyroiditis, confirmed heavy metal toxicity thru

> blood work (mercury, lead, aluminum and boron), microscopic

> hematuria (doctor can't find the reason), skin rashes on upper

arms

> and chest that will only go away with prednisone which causes

its'

> own set of problems, tenderness in ribs, fatique, muscle wasting,

> scary abdominal swelling which was recent while on chelating

agents

> to get rid of the heavy metals, joint pain, .etc.

> The test I have had include ultra sounds of thyroid, of adrenal

> glands, full body gallium scan, pelvic and abdominal ultra sounds,

> repeated hormone test, blood chemistries, chemistry panels, food

> allergy testing, test...etc...etc. My doctor can't find

> anything ...but at least she says she knows it is something and

that

> it is chronic. So...I have told her I thought it was the

implants..

> All of my liver and kidney function test are normal...but I have

an

> appointment with a nephrologist sometimes in July. I just think

my

> doctor is chasing the wrong thing....so in order to eliminate any

> possibility that it is the implants.....

> I went today for a consult to have these awful things taken

> out...and am scheduled for surgery on June 12th. Please tell

> me...that this gets better.....!!!

> Will the rash go away? Will the bloating and what I think is a

> metabolic disruption correct itself?

> This was the dumbest thing I ever did. The only tests results

that

> indicated anything was a high Creactive protein level, a low

> estrogen and a high testosterone and high level of heavy metals.

>

> Also...any suggestions for which antibiotics or anything else I

need

> to ask the plastic surgeon about after the explant? I certainly

> don't want problems associated with any bacteria left in my

> body...etc...

>

[Guest guest]

Hi Kathy,

My PS is supportive....however...seems all they want to do..is " get

them out " . My conversation with the surgical nurse was

disconcerting. When I said... " these things are making me sick " .

Her response was.... " ...we are mainly cosmetic.. " .

So ...while he was the one to put them in....I do not think he is

the one to handle it from a medical perspective....since they

are " mostly " cosmetic " . I think I will need more medical support

than they are used to giving. In fact, my surgery was scheduled

as " outpatient " ....I was to go in 3:00 and released by 6:00, no

drains, no capsulectomy...etc.

I am going to be talking with Dr. Kolb, whose name I got off this

sight. Granted...it is a bit disconcerting to go to a doctor I have

never met and whose name I got off the internet....but I will check

her out thoroughly before the surgery. I think I will also request

that she have a consult...with my internal medicine Doctor, who also

happens to be a woman and who is also holistically based.

> >

> > Hi

> > My name is . I have had my saline implants for 10 years.

> The

> > last 3 years or so...after a couple of years of symptons I

started

> > going to doctors. My symptons have included alopecia right

after

> > the surgery that was cleared up, joint pain, tingling in my

feet,

> > bloating and unexplained weight gain even on less than 1000

> calories

> > a day. The last 2 years the symptons have become more

> > serious...with thyroiditis, confirmed heavy metal toxicity thru

> > blood work (mercury, lead, aluminum and boron), microscopic

> > hematuria (doctor can't find the reason), skin rashes on upper

> arms

> > and chest that will only go away with prednisone which causes

> its'

> > own set of problems, tenderness in ribs, fatique, muscle

wasting,

> > scary abdominal swelling which was recent while on chelating

> agents

> > to get rid of the heavy metals, joint pain, .etc.

> > The test I have had include ultra sounds of thyroid, of adrenal

> > glands, full body gallium scan, pelvic and abdominal ultra

sounds,

> > repeated hormone test, blood chemistries, chemistry panels, food

> > allergy testing, test...etc...etc. My doctor can't find

> > anything ...but at least she says she knows it is something and

> that

> > it is chronic. So...I have told her I thought it was the

> implants..

> > All of my liver and kidney function test are normal...but I have

> an

> > appointment with a nephrologist sometimes in July. I just think

> my

> > doctor is chasing the wrong thing....so in order to eliminate

any

> > possibility that it is the implants.....

> > I went today for a consult to have these awful things taken

> > out...and am scheduled for surgery on June 12th. Please tell

> > me...that this gets better.....!!!

> > Will the rash go away? Will the bloating and what I think is a

> > metabolic disruption correct itself?

> > This was the dumbest thing I ever did. The only tests results

> that

> > indicated anything was a high Creactive protein level, a low

> > estrogen and a high testosterone and high level of heavy metals.

> >

> > Also...any suggestions for which antibiotics or anything else I

> need

> > to ask the plastic surgeon about after the explant? I certainly

> > don't want problems associated with any bacteria left in my

> > body...etc...

> >

>

[Guest guest]

I am sure that you will love Dr. Kolb, who is very good with helping

you detox as well as being sure your implants are properly removed.

Lynda

At 07:21 AM 5/20/2006, you wrote:

>Hi Kathy,

>My PS is supportive....however...seems all they want to do..is " get

>them out " . My conversation with the surgical nurse was

>disconcerting. When I said... " these things are making me sick " .

>Her response was.... " ...we are mainly cosmetic.. " .

>So ...while he was the one to put them in....I do not think he is

>the one to handle it from a medical perspective....since they

>are " mostly " cosmetic " . I think I will need more medical support

>than they are used to giving. In fact, my surgery was scheduled

>as " outpatient " ....I was to go in 3:00 and released by 6:00, no

>drains, no capsulectomy...etc.

>I am going to be talking with Dr. Kolb, whose name I got off this

>sight. Granted...it is a bit disconcerting to go to a doctor I have

>never met and whose name I got off the internet....but I will check

>her out thoroughly before the surgery. I think I will also request

>that she have a consult...with my internal medicine Doctor, who also

>happens to be a woman and who is also holistically based.

>

>

>

>

> > >

> > > Hi

> > > My name is . I have had my saline implants for 10 years.

> > The

> > > last 3 years or so...after a couple of years of symptons I

>started

> > > going to doctors. My symptons have included alopecia right

>after

> > > the surgery that was cleared up, joint pain, tingling in my

>feet,

> > > bloating and unexplained weight gain even on less than 1000

> > calories

> > > a day. The last 2 years the symptons have become more

> > > serious...with thyroiditis, confirmed heavy metal toxicity thru

> > > blood work (mercury, lead, aluminum and boron), microscopic

> > > hematuria (doctor can't find the reason), skin rashes on upper

> > arms

> > > and chest that will only go away with prednisone which causes

> > its'

> > > own set of problems, tenderness in ribs, fatique, muscle

>wasting,

> > > scary abdominal swelling which was recent while on chelating

> > agents

> > > to get rid of the heavy metals, joint pain, .etc.

> > > The test I have had include ultra sounds of thyroid, of adrenal

> > > glands, full body gallium scan, pelvic and abdominal ultra

>sounds,

> > > repeated hormone test, blood chemistries, chemistry panels, food

> > > allergy testing, test...etc...etc. My doctor can't find

> > > anything ...but at least she says she knows it is something and

> > that

> > > it is chronic. So...I have told her I thought it was the

> > implants..

> > > All of my liver and kidney function test are normal...but I have

> > an

> > > appointment with a nephrologist sometimes in July. I just think

> > my

> > > doctor is chasing the wrong thing....so in order to eliminate

>any

> > > possibility that it is the implants.....

> > > I went today for a consult to have these awful things taken

> > > out...and am scheduled for surgery on June 12th. Please tell

> > > me...that this gets better.....!!!

> > > Will the rash go away? Will the bloating and what I think is a

> > > metabolic disruption correct itself?

> > > This was the dumbest thing I ever did. The only tests results

> > that

> > > indicated anything was a high Creactive protein level, a low

> > > estrogen and a high testosterone and high level of heavy metals.

> > >

> > > Also...any suggestions for which antibiotics or anything else I

> > need

> > > to ask the plastic surgeon about after the explant? I certainly

> > > don't want problems associated with any bacteria left in my

> > > body...etc...

> > >

> >

>

>

>

>

>

>

>

>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)

>

>See our photos website! Enter " implants " for access at this link:

><http://.shutterfly.com/action/>http://.shutterfly.co\

m/action/

>

>

[Guest guest]

,

You're making the right decision. You'll love Dr.

Kolb. Your doctor will too!

Hugs and prayers,

Rogene

[Guest guest]

I think seeing Dr. Kolb is an excellent idea. Personally I would

find it very hard to go to someone who didn't believe that my

implants were making me sick. They aren't as motivated to make sure

to do it properly. I also like the idea of having Dr. Kolb consult

with your regular doctor. Sounds like you are covering all the

bases. Good luck to you.

Hugs, kathy

> > >

> > > Hi

> > > My name is . I have had my saline implants for 10

years.

> > The

> > > last 3 years or so...after a couple of years of symptons I

> started

> > > going to doctors. My symptons have included alopecia right

> after

> > > the surgery that was cleared up, joint pain, tingling in my

> feet,

> > > bloating and unexplained weight gain even on less than 1000

> > calories

> > > a day. The last 2 years the symptons have become more

> > > serious...with thyroiditis, confirmed heavy metal toxicity

thru

> > > blood work (mercury, lead, aluminum and boron), microscopic

> > > hematuria (doctor can't find the reason), skin rashes on upper

> > arms

> > > and chest that will only go away with prednisone which causes

> > its'

> > > own set of problems, tenderness in ribs, fatique, muscle

> wasting,

> > > scary abdominal swelling which was recent while on chelating

> > agents

> > > to get rid of the heavy metals, joint pain, .etc.

> > > The test I have had include ultra sounds of thyroid, of

adrenal

> > > glands, full body gallium scan, pelvic and abdominal ultra

> sounds,

> > > repeated hormone test, blood chemistries, chemistry panels,

food

> > > allergy testing, test...etc...etc. My doctor can't find

> > > anything ...but at least she says she knows it is something

and

> > that

> > > it is chronic. So...I have told her I thought it was the

> > implants..

> > > All of my liver and kidney function test are normal...but I

have

> > an

> > > appointment with a nephrologist sometimes in July. I just

think

> > my

> > > doctor is chasing the wrong thing....so in order to eliminate

> any

> > > possibility that it is the implants.....

> > > I went today for a consult to have these awful things taken

> > > out...and am scheduled for surgery on June 12th. Please tell

> > > me...that this gets better.....!!!

> > > Will the rash go away? Will the bloating and what I think is

a

> > > metabolic disruption correct itself?

> > > This was the dumbest thing I ever did. The only tests results

> > that

> > > indicated anything was a high Creactive protein level, a low

> > > estrogen and a high testosterone and high level of heavy

metals.

> > >

> > > Also...any suggestions for which antibiotics or anything else

I

> > need

> > > to ask the plastic surgeon about after the explant? I

certainly

> > > don't want problems associated with any bacteria left in my

> > > body...etc...

> > >

> >

>

[Guest guest]

Thanks Kathy.

I talked with her and have it tentatively scheduled....but will

confirm with her office on Monday. !!

Thank God...she could do it so quickly for me.

> > > >

> > > > Hi

> > > > My name is . I have had my saline implants for 10

> years.

> > > The

> > > > last 3 years or so...after a couple of years of symptons I

> > started

> > > > going to doctors. My symptons have included alopecia right

> > after

> > > > the surgery that was cleared up, joint pain, tingling in my

> > feet,

> > > > bloating and unexplained weight gain even on less than 1000

> > > calories

> > > > a day. The last 2 years the symptons have become more

> > > > serious...with thyroiditis, confirmed heavy metal toxicity

> thru

> > > > blood work (mercury, lead, aluminum and boron), microscopic

> > > > hematuria (doctor can't find the reason), skin rashes on

upper

> > > arms

> > > > and chest that will only go away with prednisone which

causes

> > > its'

> > > > own set of problems, tenderness in ribs, fatique, muscle

> > wasting,

> > > > scary abdominal swelling which was recent while on chelating

> > > agents

> > > > to get rid of the heavy metals, joint pain, .etc.

> > > > The test I have had include ultra sounds of thyroid, of

> adrenal

> > > > glands, full body gallium scan, pelvic and abdominal ultra

> > sounds,

> > > > repeated hormone test, blood chemistries, chemistry panels,

> food

> > > > allergy testing, test...etc...etc. My doctor can't

find

> > > > anything ...but at least she says she knows it is something

> and

> > > that

> > > > it is chronic. So...I have told her I thought it was the

> > > implants..

> > > > All of my liver and kidney function test are normal...but I

> have

> > > an

> > > > appointment with a nephrologist sometimes in July. I just

> think

> > > my

> > > > doctor is chasing the wrong thing....so in order to

eliminate

> > any

> > > > possibility that it is the implants.....

> > > > I went today for a consult to have these awful things taken

> > > > out...and am scheduled for surgery on June 12th. Please

tell

> > > > me...that this gets better.....!!!

> > > > Will the rash go away? Will the bloating and what I think

is

> a

> > > > metabolic disruption correct itself?

> > > > This was the dumbest thing I ever did. The only tests

results

> > > that

> > > > indicated anything was a high Creactive protein level, a low

> > > > estrogen and a high testosterone and high level of heavy

> metals.

> > > >

> > > > Also...any suggestions for which antibiotics or anything

else

> I

> > > need

> > > > to ask the plastic surgeon about after the explant? I

> certainly

> > > > don't want problems associated with any bacteria left in my

> > > > body...etc...

> > > >

> > >

> >

>

[Guest guest]

Hi Pam and welcome.  Wow! a 16 yr BMT survivor,  that's great.  I'm about to

enter my 6th trial, Ariad, at the U. of Mich. with Dr. Talpaz.

I've had cml for 14 yrs this May, I'm way too old for a transplant, and too

chicken to go through one anyway!  Good luck to you and continued good health,

this is a great site.  Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

From: pamlevine53 <pammylevine@...>

Subject: [ ] NEW MEMBER

Date: Friday, March 27, 2009, 1:13 AM

Hi! My name is Pam, I am new to the group, and wanted to introduce

myself. I was dx with CML in 1992, had a BMT in 1993, hit a bump in the road,

started gleevic as soon as the FDA approved it, and just celebrated my 16th year

of the Bone Marrow Transplant. I have been off gleevic for the past 6 years and

am PCRneg. Although 16 years is a long time, issues from the CML and its

treatments always pop up...was happy when i saw this group was on .

[Guest guest]

Hello Pam

What a journey - great story

16 years is a dam long time and 6 of those off glivec

Well hopefully that maybe my story as well

Would you mind if I posted your story on the Australia

Talkbloodchat group as it may give people newly diagnosis

inspiration and not to panic.

What are the bumps in the road that you still have ?

Mind sharing

I am not PCRU but still considered new at the CML game

Cheers

Sue (Aussie)

[Guest guest]

Hi Sue,

You can definately post my story on that site...if this can be an inspiration

for others then i am all for it. As for the " bumps " in the road...5 years after

my BMT (with a 6:6 related donor match) i had cytogenetically relapsed. It was

caught quite early in the game, i had 2 DLI's (basically T-cell transplants from

my donor) and took part in a protein vaccine study, while waiting patiently for

gleevec to be FDA approved. I was very shortly in CCR after starting the

gleevec. I stayed on it for a while, but was having quality of life issues while

taking it. I spoke to may dr's, got many oppinions and decided to stop the

gleevec (after having 1 more DLI push before stoping it). With that said, I am

doing well...go in for my yearly BMA (infact my next one is next month) and

count my blessings. By no means am i saying this is the right road for everyone,

but personally, this was what worked for me.

-- In , " Sue " <hollie@...> wrote:

>

> Hello Pam

>

> What a journey - great story

>

> 16 years is a dam long time and 6 of those off glivec

>

> Well hopefully that maybe my story as well

>

> Would you mind if I posted your story on the Australia

> Talkbloodchat group as it may give people newly diagnosis

> inspiration and not to panic.

>

> What are the bumps in the road that you still have ?

>

> Mind sharing

>

> I am not PCRU but still considered new at the CML game

>

> Cheers

> Sue (Aussie)

>

>

>

>

[Guest guest]

My doctor has mentioned just in passing I guess the thought of a BMT. Nice to

hear from someone who has experienced that. Good Luck with your BMA.

Eva

From: pamlevine53

Sent: Saturday, March 28, 2009 1:36 PM

Subject: [ ] Re:NEW MEMBER

Hi Sue,

You can definately post my story on that site...if this can be an inspiration

for others then i am all for it. As for the " bumps " in the road...5 years after

my BMT (with a 6:6 related donor match) i had cytogenetically relapsed. It was

caught quite early in the game, i had 2 DLI's (basically T-cell transplants from

my donor) and took part in a protein vaccine study, while waiting patiently for

gleevec to be FDA approved. I was very shortly in CCR after starting the

gleevec. I stayed on it for a while, but was having quality of life issues while

taking it. I spoke to may dr's, got many oppinions and decided to stop the

gleevec (after having 1 more DLI push before stoping it). With that said, I am

doing well...go in for my yearly BMA (infact my next one is next month) and

count my blessings. By no means am i saying this is the right road for everyone,

but personally, this was what worked for me.

-- In , " Sue " <hollie@...> wrote:

>

> Hello Pam

>

> What a journey - great story

>

> 16 years is a dam long time and 6 of those off glivec

>

> Well hopefully that maybe my story as well

>

> Would you mind if I posted your story on the Australia

> Talkbloodchat group as it may give people newly diagnosis

> inspiration and not to panic.

>

> What are the bumps in the road that you still have ?

>

> Mind sharing

>

> I am not PCRU but still considered new at the CML game

>

> Cheers

> Sue (Aussie)

>

>

>

>