(unknown)

[Guest guest]

Glad to hear this Colleen, it's so good to enjoy life again, isn't it?

That's funny about the restroom scene. Your mom is wonderful for speaking up!

You're right--we have to take those opportunities to educate when they arise.

We gotta do it one at a time. (Well, in this case, four!)

Patty

----- Original Message -----

From: cricket5641000

Sent: Sunday, June 29, 2003 8:07 PM

Subject: (unknown)

My mom called me this morning to tell me about her evening last night . She and my dad went out with some friends for dinner in Laguna Beach. While there my mother and the couple of other lady's had to use the rest room. They entered the rest room to find 4 young women with there dress's up over there heads and feeling each others boobs. They were laughing and carrying on. Of course my mother and her friends thought this was really funny. As it turns out all the girls had just had implants, and they were feeling each other to see how they compared.My mother who used to be a newpaper reporter years ago,(no fear to butt in) piped up and told the girls about me. She told them that if any of them had any unexplained syptoms in the furture to please do some research on the internet. They asked her some questions and one of the girls said they had a really good friend who has be sick alot, always tried, etc. Ever since she had implants. I bet that this girl called her friend this morning after talking with my mother.See lady's its not just us that are spreading the word, but everyone we tell, family, friends,etc. , will pass info on.It will be like a chain reaction.Hope everyone had a great weekend, I did. stayed out with my hubby till two in the morning. Havn't done that in a long time. Its great to start feeling normal again.Colleen

[Guest guest]

Good luck with your game of Russian Roulette!

I just hope that your first signs of symptoms are not BANG, instant sick like some of the women..........comes on without warning, you are bedridden, then you spend five years recovering. In the beginning, suicide seems like such a wonderful and inviting thing to do. I almost did it but didn't due to the fact that I have a wonderful son who needs me.

Patty can answer your question better than I can but just so you know, we have a lot of lurkers out there who are too private to join in.......one lurker goes through me for information because she doesn't want to join the website, she said it's because no one knows of her implants and she's very private. Poor thing. Her third child she breastfed with her implants and that child is sick all the time unlike her other two children...........so sad. If you have children, please don't risk their health by breastfeeding.

Anyway, consider the lurkers as well as the many other implant support sites out there in different states as well.

I'm sure Patty can give you an accurate number or sites and/or members.

Take care and good luck to you!

D

----- Original Message -----

From: cjvon666

Sent: Sunday, July 13, 2003 3:58 PM

Subject: (unknown)

Hello everybody. Thanks for all the comments. I hope I do not annoy anybody but I am back with the attitude of "well, I will just take the risk and see what happens" I have a question though- probably Patty can answer-How many group members are there? In other words how many girls/ladies on this group are having/had problems with implants? How many members have had explants? I am still thinking well if I have problems I can get them taken out. Please do not think I am taking all of your advise or experiences lightly there is just still a big part of me that wants to go through with this. I am driving my family crazy with the back and forth.Thanks for you repleis,CJ

[Guest guest]

CJ . . .

I know you're going to do what you're going to do . . . But . . . if you'll listen to the ladies here, I can promise you that you'll never look back on your decision and say it was the worst decision you EVER made in your life. There are plenty of women here to feel that way . .

As to size of the support group . .. I've been active in implants support for about ten years . . . There are many thousands of women who have passed through . . . Some support meetings drew literally hundreds of women. . . We are the exception only in the fact that we've made the connection between our implants and our illness and are willing to do something about it. Many, many more women are suffering without knowing the reason . . . The suicide rate among implanted women is several times the norm

[Guest guest]

CJ,

At this time there are 283 members on this particular group. However, we have had hundreds that have been here and left, and Ilena's group was in the thousands before she left the country. There are thousands worldwide. There is absolutely no way to quantify the numbers of ill women out there. We have had info from the manufacturer's when they presented their data before the FDA about the numbers of re-do's and those that had problems, but if you are looking for some kind of numbers to justify your position, I am afraid I can't give you anything that is meaningful. When I tell people a number, whenver I am asked what percentage of women get sick, I throw out 10-15% probably at the least, but I always say that there is no way to know for sure, and even 10-15% is most likely low.

But that is not the real issue. The issue is once you are ill, can you get your health back? If you have the attitude that you will try the implants and if you have problems you can just get them taken out, that is true, but the real question is, "Can I recover?" It is not like pulling a bad tooth!

I may say I am recovered and have my life back, which is true, but only in a relative sense--I have actually been permanently damaged....I have an autoimmune disease. I still get some brain fog (as in lately, after my dental cleaning...I am still fighting it!) and I don't have the stamina that I used to have. I was like the Energizer bunny before implants...I stayed up till 2 or 3 in the morning almost every night, and got up the next day early to take care of 4 kids. Now I fall asleep at 9 pm most nights and there is no way I can be a night owl anymore. On occasion I will stay up till 11 or so, but I pay for it the next day being a little more lethargic. I miss the old me so much. I was alive, I was invincible! ha ha ha

CJ, if you get implants, you will never see the old you again. Ever. She will be gone.

You may be able to get implants out if you become ill, and you may recover, but you will never be the same.

Patty

----- Original Message -----

From: cjvon666

Sent: Sunday, July 13, 2003 3:58 PM

Subject: (unknown)

Hello everybody. Thanks for all the comments. I hope I do not annoy anybody but I am back with the attitude of "well, I will just take the risk and see what happens" I have a question though- probably Patty can answer-How many group members are there? In other words how many girls/ladies on this group are having/had problems with implants? How many members have had explants? I am still thinking well if I have problems I can get them taken out. Please do not think I am taking all of your advise or experiences lightly there is just still a big part of me that wants to go through with this. I am driving my family crazy with the back and forth.Thanks for you repleis,CJ

[Guest guest]

Rogene,

I have not heard from in such a long time.... you can't be talking about that is expected to die, are you???? I am so upset over that!

Please keep me posted!

Patty

----- Original Message -----

From: Rogene S

Sent: Sunday, July 13, 2003 10:38 PM

Subject: Re: (unknown)

CJ . . .

I know you're going to do what you're going to do . . . But . . . if you'll listen to the ladies here, I can promise you that you'll never look back on your decision and say it was the worst decision you EVER made in your life. There are plenty of women here to feel that way . .

As to size of the support group . .. I've been active in implants support for about ten years . . . There are many thousands of women who have passed through . . . Some support meetings drew literally hundreds of women. . . We are the exception only in the fact that we've made the connection between our implants and our illness and are willing to do something about it. Many, many more women are suffering without knowing the reason . . . The suicide rate among implanted women is several times the norm

[Guest guest]

Thank you Rogene. I will write her.

----- Original Message -----

From: Rogene S

Sent: Monday, July 14, 2003 6:45 PM

Subject: Re: (unknown)

I'm not sure how old is . . . my guess is that she's about ten.

You might drop a line . . . she'll be glad to hear from you.

fuchsmorrissey@...

Rogene

[Guest guest]

Tears here too...You've made out a winner CJ. smiles.

[Guest guest]

The bands and helmets are fitted but not tight. There is no growth or development restriction.

Natashaejw_p <ejw_p@...> wrote:

P.S. I am just not sure, I guess, how it works: I would go crazy, if I had to wear a tight hat 23 hours a day for several months! How does the blood through the baby's head cerculate? Do they have headackes from this? I was reading in one of the places, how woman thought that a helmet kind of slowed down her baby's development. Also: what is cranio? SO many questions! :)Hanna

[Guest guest]

> hi everybody!

>

> I have done two flushes within 4 months and still have some pain in the GB

area. I intend to do more but recently found out i am pregnant.

> has anybody done flushes while pregnant? can it somehow be harmful to the

baby? i really want to continue flushing and hope that olive oil and

grapefruit juice can't make any bad damage but still would like somebody

else's opinion.

> thank you

If you are pregnant, don't attempt to do a flush.

Dr. s-Louis Friedli, PgDip., MSc., CHt., R.H., RB., Ph.D.

Herbalist, Scientist & Hypnotherapist

[Guest guest]

I have no words of wisdom, but did want to welcome you. Your story made me so sad, sad that there are medical professionals leading people out there astray. I would definitely 2nd what others have said about suing. There is just no excuse for the lack of service you have received for your babies. I wish you the best of luck. *hugs*

Jen- TXTrentyn- 16 mo. DocBand 06/12/03 & 09/17/03

(unknown)

might i just start all over so you all will understand. my boys were born almost 2 months early. before taking them home i noticed their heads were lopsided. i talked to the dr, and she refered me to a nuro dr. mancuso, she took ct scans to see if the boys were fused and they were not. from there we went to get the star band at 7 months old,they both were in the star band w/out correction for 5 months, i took the helments and demanded to be fitted once more. we recived the other starbands about a month later. the boys had them on 23 hours a day 7 days a week w/out any correction for another 3 to 4 months. we were going back and forth between the pts,the dr. and the comp. who made the star bands for another 5 to 6 months without anything being do to correct the twins. i gave up and accepted the boys for who they are. a few months later we had a check up w/ their nuro she took more ct scans and noticed that both of their brains were under pressure. so this is where we are now, the only way to correct the boys now is w/ sugery. i know this is unheard of but what should i do. i live in san antonio texas and i am seeing the best nuro and plastic surg in the state. i thought i was doing the best for my kids untill i started on this web site. if you out there have any thouhghts i would love to here them. please held. For more plagio info

[Guest guest]

I guess I was in denial at about 4 months , hoping that it would reshape on its own like my 3 year old child's head did...Unfortunately, at his 6 month appt., my ped said to wait until his 9 month appt. to see if there was any improvement! My husband took him in for a sick appt. at 7 months and he was seen by a nurse practitioner who gave us a script for an evaluation. Well, thank God she did because he has what looks like severe brachycephaly (sp?) at 3 standard deviations from the mean!!! He will now be banded at 8.5 months. If only the pediatrician had been more educated about this whole thing. I actually saw her ( the pediatrician that said to wait) yesterday for a well appt. for my 3year old and tried to educated her on the importance of banding at an early age. It looks like its up to us to do it since this is so foreign a concept to the pediatric medical community.

Whitney--Mom to Doc Band 11/24/03

-----Original Message-----From: dustiejones [mailto:dustiejones@...]Sent: Friday, November 07, 2003 10:52 AMPlagiocephaly Subject: (unknown)Risa, my daughter was diagnosed at her 4 month check-up and she didn't get her band until she was 8.5 months. I literally took that long with insurance, appts, etc.Dustie> hope this is not to insensitive a question. i see that most babies are banded around 7-8months. is it that long of a process. did it happen later? i am guessing it is a long process, as i spoke to my pediatrician at his 4 month apt, and i dont get to see the ns until the middle of december-risaFor more plagio info

[Guest guest]

Sorry I put the wrong place down Cranial is the one that wouldnt take our insurance the place where we are going is called C.P.O. consulting.

(unknown)

Hi Kelli,I too have a , and I too am in NY! Debbie is right, there is no Cranial Tech in Manhattan. If there were, I would have used them instead of traveling to Paramus, NJ. Don't get me wrong, the people in the Paramus office are awesome. I just would have loved a shorter trip. You can check out this link for decorating tips:http://www.plagiocephaly.org/support/decorate.htm--- In Plagiocephaly , "kelli mitchetti" <kmitchetti@h...> wrote:> Hi everyone! We're going tomorrow to get s head cast for her band. Does anyone know how long it usually takes after being cast to get the band. I would also like tips for decorating it when we do get it. > > The place we are going is Cranial Technologies, in Manhatten has anyone elese been there?> > thanks> > Kelli mom to For more plagio info

[Guest guest]

It depends upon the individual. Some people have found that time is

critical for them and others seem to be able to take it at anytime between

9:00 PM to 3:00 AM.

Noland

----- Original Message -----

From: <spexl@...>

<low dose naltrexone >

Sent: Monday, December 29, 2003 12:46 PM

Subject: [low dose naltrexone] (unknown)

> DOES ANYONE KNOW IF IT MATTERS WHAT TIME YOU TAKE YOUR PILL AS LONG AS

> ITS BEFORE 3a.m.?

>

>

>

>

>

>

[Guest guest]

Hi (spexl), Noland, I am one of the unlucky few that time is sooo critical if I want to have a good day tomorrow I take my ldn at 10:00 to 10:30 otherwise the results are less than satisfactory, now that is not a very good placibo effect is it? I have also taken my ninety- fifth dose last night and seem to have reached a plateau, nothing more is improving but now I will watch my vitamin d better and see what that will bring. My brother continues to improve to the point now that the personal care aids and nurses in the hospital have asked for all the info we can give them on this" wonder drug".He also is given this between 10:00 and 10:30. Reg.

O.K. I trimmed this message for everyone benefit!

-------Original Message-------

From: Noland R. Durnell, P.E.

Date: Thursday, January 15, 2004 9:59:42 AM

low dose naltrexone

Subject: Re: [low dose naltrexone] (unknown)

It depends upon the individual. Some people have found that time iscritical for them and others seem to be able to take it at anytime between9:00 PM to 3:00 AM.Noland----- Original Message ----- From: <spexl@...><low dose naltrexone >> DOES ANYONE KNOW IF IT MATTERS WHAT TIME YOU TAKE YOUR PILL AS LONG AS> ITS BEFORE 3a.m.?>>>

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Reg:

That is great news about your brother. Also, it is outstanding that the hospital personnel want to learn about LDN. One more mark for us and LDN.

In regards to yourself, I would be surprised if you were not improving but in such a way that you can't notice, yet. I know I haven't seen any improvement sent November 8, 2003, however, my blood tests are showing improvements or progression stoppage. That's good enough for me.

Noland

----- Original Message -----

From: Reg Kreil

low dose naltrexone

Sent: Thursday, January 15, 2004 11:14 AM

Subject: Re: [low dose naltrexone] (unknown)

Hi (spexl), Noland, I am one of the unlucky few that time is sooo critical if I want to have a good day tomorrow I take my ldn at 10:00 to 10:30 otherwise the results are less than satisfactory, now that is not a very good placibo effect is it? I have also taken my ninety- fifth dose last night and seem to have reached a plateau, nothing more is improving but now I will watch my vitamin d better and see what that will bring. My brother continues to improve to the point now that the personal care aids and nurses in the hospital have asked for all the info we can give them on this" wonder drug".He also is given this between 10:00 and 10:30. Reg.

O.K. I trimmed this message for everyone benefit!

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Also, as I understand, you need Vitamin D to help with the absorption of

calcium. Also, in accordance with the propaganda, coral calcium that is

actually coral calcium is supposed to be the best calcium to take.

Noland

----- Original Message -----

From: <spexl@...>

<low dose naltrexone >

Sent: Thursday, January 15, 2004 5:55 PM

Subject: [low dose naltrexone] (unknown)

> HI

> I GET MY CALCIUM FROM YOGURT AND MULTI -VITAMIN ALONG WITH A CALTRATE

> 600 PLUS VITAMIN D. BUT I NEVER HEARD OF VITAMIN D-3.

> DOES ANYONE KNOW WHAT THAT IS?

> YA KNOW YOU SHOULD HAVE MAGNESIUM WHEN YOU TAKE CALCIUM.......

>

>

>

>

>

[Guest guest]

Hi

Can I ask you what the nurontin is used for.

Thanks

Marie

----- Original Message -----

From: <spexl@...>

<low dose naltrexone >

Sent: Saturday, January 24, 2004 3:28 PM

Subject: [low dose naltrexone] (unknown)

> LINDA MAE

> YOU'RE RIGHT . MY NEURO. PUT ME ON NOVANTRONE, LOOKS LIKE BLUE INK,

> WITH NO PROBLEM AT ALL. BUT WHEN I MENTIONED LDN TO HIM HE SAID NO.

> IT'S A GOOD THING THERE ARE DR.'S OUT THERE THAT WILL PRESCRIBE LDN OVER

> THE PHONE. SINCE I HAVE DISCONTINUED THE NOVANTRONE AND AM JUST TAKING

> THE LDN. ABOUT THE NURONTIN, I AM STILL TAKING THAT. I DIDN'T ONE DAY

> AND WAS SORRY.

>

>

>

>

>

>

[Guest guest]

Hi Marie,

" one " of the uses for neurontin is as an anti-seizure drug,(if my rememberer

is correct)

and my neuro gave it to me for the pain from the burning/scalded feeling on

my face and

right side. It kinda worked ok, but made me somewhat, more, dizzy, and

since I was

driving a 4-5ton rig on the road each day, decided to quit it and put up

with the pain

instead of running over someone. Some people tolerate it quite well after

they/their

body becomes accustomed to it. A little euphoria at first is what I

experienced and

maybe it was a combination of other things I was taking as well. Hope that

helps.

Have a Great Day!

Jim

----- Original Message -----

From: " Marie Deady " <Mardea@...>

<low dose naltrexone >

Sent: Sunday, January 25, 2004 6:16 AM

Subject: Re: [low dose naltrexone] (unknown)

> Hi

> Can I ask you what the nurontin is used for.

> Thanks

> Marie

> ----- Original Message -----

> From: <spexl@...>

> <low dose naltrexone >

> Sent: Saturday, January 24, 2004 3:28 PM

> Subject: [low dose naltrexone] (unknown)

>

>

> > LINDA MAE

> > YOU'RE RIGHT . MY NEURO. PUT ME ON NOVANTRONE, LOOKS LIKE BLUE INK,

> > WITH NO PROBLEM AT ALL. BUT WHEN I MENTIONED LDN TO HIM HE SAID NO.

> > IT'S A GOOD THING THERE ARE DR.'S OUT THERE THAT WILL PRESCRIBE LDN

OVER

> > THE PHONE. SINCE I HAVE DISCONTINUED THE NOVANTRONE AND AM JUST

TAKING

> > THE LDN. ABOUT THE NURONTIN, I AM STILL TAKING THAT. I DIDN'T ONE

DAY

> > AND WAS SORRY.

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi, Marie. I also take Neurontin, in my case, for neurogenic pain. It was

recently FDA-approved for pain as well as for seizure control. Some people

also say that it helps relieve spasticity.

I'm one who has no problems with side effects, thank heaven. I developed

neurogenic pain in a relatively small area of my body, but I thought I would

go insane without relief. Neurontin has provided that.

Galoux

[Guest guest]

You know it is sugested that food be taken with ldn.but after my 9:30 snack I don't really have an empty stomach anyway. I have tried both with and without and have found no diff. Reg.

-------Original Message-------

From: low dose naltrexone

Date: 01/25/04 12:20:26

low dose naltrexone

Subject: [low dose naltrexone] (unknown)

HII TAKE LDN AND I TAKE IT AT ABOUT 10:00P.M. THE OTHER NIGHT I ATESOMETHING BEFORE GOING TO BED.ARE YOU SUPPOSED TO TAKE LDN ON AN EMPTY STOMACH OR DOES IT REALLYMATTER.

[Guest guest]

Interesting because if I take it after say 11:00 then the next day is not as good as the 10:00 dose and the best results I find for me are around 9:30 but what the hey there are no sure parameters to follow I guess we all have to find what is best for our individual circumstances. This is what a study on this will find, that unlike aspirin for instance( I use that because everyone knows how it works) one aspirin will work well two better three your an addict etc. Whereas with ldn. there is no" written in stone" formula, just reading all the letters for the last four months have shown me that we all have a different formula for success and only if you are willing to experiment can the results you wish to achieve be realised. Or that's my read on this! Reg.

-------Original Message-------

From: low dose naltrexone

Date: 01/25/04 12:56:54

low dose naltrexone

Subject: [low dose naltrexone] (unknown)

I wonder;if allmost all (!) endorphines are produced between 2-4 am, howcome I react better if I take LDN early? Howcome I feel so terrible if I take LDN before bedtime.I'm just new, 3 weeks on LDN. Is there anyone who has the same xp's? Or anyone who can explain?Btw, who wouldn't like to bade in such a fountain?;o)))Thanks,Chey> HI> I TAKE LDN AND I TAKE IT AT ABOUT 10:00P.M. THE OTHER NIGHT I ATE> SOMETHING BEFORE GOING TO BED.> ARE YOU SUPPOSED TO TAKE LDN ON AN EMPTY STOMACH OR DOES IT REALLY> MATTER.

[Guest guest]

One other thought on this.... maybe your system dispels ( gets rid of )the naltrexone at a different rate than mine, does this mean if I dispel quicker should I take a larger dose or earlier? To take this farther maybe what we are giving our bodies to work with is the biggest factor, I had better take my multivitamins then.- Boy there are a lot of questions. Reg.------Original Message-------

> HI> I TAKE LDN AND I TAKE IT AT ABOUT 10:00P.M. THE OTHER NIGHT I ATE> SOMETHING BEFORE GOING TO BED.> ARE YOU SUPPOSED TO TAKE LDN ON AN EMPTY STOMACH OR DOES IT REALLY> MATTER.

[Guest guest]

See that explains a lot, Right now it's -32 celcius snow is falling and I don't feel good I am also not going outside ( Reg.

-------Original Message-------

From: low dose naltrexone

Date: 01/26/04 14:23:15

low dose naltrexone

Subject: [low dose naltrexone] (unknown)

STEVEI HAVE SPMS AND FIND MYSELF WORSE IN THE WINTER THESE PAST 2 YEARS. IUSED TO BE HEAT SENSATIVE.........BUT NOT ANYMORE. I EVEN HAD TO QUITCHURCH A/C THE COLD CRIPPLED ME AND I'M IN CALIFORNIA! EVEN IN NOVEMVERWHEN I STARTED LDN I WAS GOOD THEN THE COLD STARTED. I LOOK TO BEBETTER ONCE IT WARMS UP. SOME I GUESS ARE COLD SENSATIVE TOO.

[Guest guest]

beth, i went to dr stelnicki's office in coral springs, he is fabulous, and

his whole office staff is great-risa

(unknown)

> We are just beginning the process with my 8 month old daughter

> Madelyne. She had torticollis and that has been corrected through

> physical therapy, but she has been recommended for the band. We're a

> little stressed out with all of this and what I am wondering is if

> anyone out there has heard anything about or had any experience with

> Dr. Stelnicki in Hollywood, Fl?

>

> Beth

>

>

> For more plagio info

[Guest guest]

I don't think anyone can give a scientific answer to that. I do bee stings for my MS, and I believe they help me. i GET AN ENERGY BOOST THAT i NEED BADLY! tHERE IS HISTAMINE IN BEE VENOM AS WELL AS MANY OTHER PROPERTIES. Oops! Can't type like I used to! I do 20 - 30 stings 3 times per week. I'm not going to stop any time soon. I have NO problems with them. I do LDN also. I thank God for both!!

Marcie