RE: Hi I am new

January 5, 2001

Hi Becki:

My heart goes out to you. You have so many physical problems that I can

certainly understand the distress you are under. I am glad you have applied

for disability. Where are you with the process? It took me a year to get

disability but I got it finally on my second try without a hearing but after

alot of crying to them and practically having nervous breakdowns over the

phone. The person handling my case was so resistent to pushing along my

file. She finally got it put through for depression first and then for RA

and Fibro as well. I went through many meds like you did and the inability

to walk much at a store. I never had the problem of having to use oxygen

though. But I was also diagnosed with sleep apnea around the same time and

have to sleep with a CPAP machine and mask on every night so I do not stop

breathing. That too seems to have improved. It has been a long haul but I

am off everything now except Prednisone which I am tapering off and am down

to 7mg. I would like to say I am in remission. I do need my darvocet though

every night. I am sure your diabetes is not helping matters at all for you.

My father has RA with diabetes although his RA is also in remission. He has

had a very hard time though. He has had a pace maker put in May, 1998, a

stroke Nov. 1999 and open heart surgery this past Nov. Anyway, yes you are

so very very young to have to live like you do. It can improve, I assure you

of that. I am living proof at age 51. Do not let your husband guilt you

into feeling inadequate for not being able to do things. Tell him to hire

somebody to help you out. When I started receiving disability, that is one

thing we did. I have a woman come in every two weeks to do floors and the

difficult kind of cleaning. Besides that, it is a mutual effort in keeping

the house clean and picked up. Do not lose faith Becky. There are meds that

can help you. If one thing does not work, something else can be tried. I am

surprised the Remicade is not working. Often it needs to be taken with MTX

to have a real affect. I am sure a/ will be along to tell you about

this and maybe some others. Stay with the group dear and we can help you get

through this. You will have good days......they are not all bad days. Lots

of us do alot of praying for eachother and you will be in my prayers. Take

care.

Love and Peace, Jeannette

January 5, 2001

Jeanette,

it amazes me that with all you have been through in the past few weeks that

you have the heart to write such wonderful letters to everyone. you are a

lovely person and iam so glad you are in this group. I know that i don't post

much usually to let you all know whats going on and how things are here at

home. with 5 boys, they don't give me much time for myself but i do read

everyones post not to mention that everyone is now getting the flu. looks

like i am coming down with it too. right now i have jared sitting in my lap

as i write this post. he is so hot and he gives me such a hard time with take

meds.

anyway, i want you to know that your letters show how big of a heart you have

even with all you troubles. you take of you too, ok!

shelly

January 5, 2001

Thanks . I hope is feeling better soon and that fever breaks.

Lovingly, Jeannette

January 5, 2001

Welcome, Becki!

I am so very sorry that you are having so many serious problems. I'm glad

you found us though. I really think we can help you. We have a marvelous

combination of personalities and experience here. This is the place for

solid information and truly compassionate support.

Even though you like your rheumatologist, would you consider going to get a

second opinion? I'm not sure where you live or what doctors or hospitals

are nearby, but since you are suffering so and your quality of life is

quite diminished at your young age, I would urge you to see someone else

just to make sure that other treatment options aren't being overlooked.

I'm getting to sound like a broken record in our group, but I do highly

recommend going somewhere such as the Mayo Clinic in Rochester or s

Hopkins to have a team of experts evaluate you and come up with or confirm

your diagnoses and then develop a safe and effective treatment plan for you.

Your husbands lack of understanding about your physical pain, fatigue, and

limitations is a big problem. Has he ever gone to any of your appointments

with the rheumatologist? It could be a good experience for him. Many people

close to us have a very difficult time grasping what it really means to

suffer from a rheumatic disease.

Looking forward to hearing more from you,

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

From: <Bradsditz@...>

< egroups>

Sent: Thursday, January 04, 2001 10:46 PM

Subject: [ ] Hi I am new

> Hi

> My name is Becki and I am 22.I have a multitude of medical problems

> involving my lungs and GI system and joints.I am trying Remicaid

> IV,am on celebrex,ultram,vicodin,percacet(for severe

> pain),Elavil,Imuran and Plaquenil.These don't count the other meds

> for my other problems.I think my body is confused and thinks its 82

> instead of 22.Nothing they have tried...and believe me they have

> tried tons of stuff has really helped.I am so sick of being in

> pain,stiff and unable to move.My worse joints are my knees,hips and

> back.But every joint is involved.I really cannot do much.I am

> miserable if I try to go to the mall or something b/c I cannot be on

> my feet for more than a few minutes.Plus I am supposed to be on

> oxygen for my breathing problems but its to exhausting to move and

> carry around the 02 at the same time.I don't think my husband

> understands how painful and exhausting it is.He always gets on my

> case about not having the cleanest house.But I just get to tired.I

> have filed for disability for both my lung and joint problems.

> Are there others like me????What can I do???Steroid shots actually

> make me worse and I am diabetic so it makes me sick too, and other

> DMARD haven't done anything. I don't like to take pain meds all day

> b/c then I am drowsy all day.What can I do???I go to a really great

> Rheumie but she is stumped to as to what to do.

>

> Huggies

> Becki

September 27, 2001

In a message dated 09/27/2001 2:17:15 AM Eastern Daylight Time,

jholder30125@... writes:

<< Hopefully this drug will work for me.

If anyone has any info on it please contact me and let me know how it

works. Janet >>

Hi Janet - MTX worked pretty well for me. The only problem is that now my

liver enzymes are elevated. It has some pretty nasty side effects, most of

which can be tolerated by taking folic acid, but protect your liver by not

drinking ANY alcohol and insist on monthly blood test for liver function. At

least we've caught mine before any real damage was done and now I'm going to

try Enbrel and wean off the MTX.

Good luck - make sure you talk about all the side effects and how to keep

them at a tolerable level with your rheumy.

September 27, 2001

Hi Janet...My situation paralleled yours to some extent. I had very minor

psoriasis, mostly in my scalp, and lots of aches and pains. Then, after 20 odd

years of it, my fingers started sausaging. This was very distressing because I

was a guitarist. I have had cortisone shots, directly to the joints, at least

twice in five joints. The problem with cortisone is that it weakens the tissue

and can cause joint deterioration. I'm a bit sorry I had the injections now.

Also I spent several months on Sulfasalasine which did little. After that they

added Methotrexate which really made me ill even when injected. I tried

Minocine for 10 months which helped the pain and stiffness but did not reverse

the progression. All through this I was taking Celebrex or Viox daily. About 3

months ago I started a severe flare involving more joints. My RD put me on

Enbrel. The change was immediate and stunning. My hands are nearly normal and

I have discontinued all other drugs but Klonopin (an anti-anxiety drug) and the

occasional Tylenol. But even on Enbrel the disease seems to be progressing to

my feet. I now have a receding nail on one toe and slightly swollen big toe

and, of course, the ache. But it's tolerable. It wasn't before and I can

imagine the condition I would be in without the Enbrel. I do not relish being

an Enbrel junky but the alternative is worse. I wish that I would have started

it earlier and saved some joint damage. That's my whole point. Be careful with

cortisone and if you are getting joint damage start something early. You are

probably in it for the long haul. MTX is quite effective for some people. But

if it doesn't work or you can't tolerate it, by all means, try something else.

RGDS Ronnie E.

[ ] Hi I am new

I have been searching to find a reason for my pain for 12 years. Many

trips to Emory University Hospital, tests of every kind, and have

been diagnosed with rider's disease, fibromyalgia and mostly just

been told it was all in my head. A wonderful dear Internal Med.

Doctor in Rome Ga. asked me if I had lisions on my body. I have had

psoriasis for years. He gave me a shot of cortisone and I have felt

like an 18 yr. again. I am going to start treatment with Methotrexate

beginnig Friday Sept. 28. I have pain in both hands and fingers,both

wrists, both elbows, both shoulders, my neck, spine, hips, both

knees, both feet and toes and ankles. I have chronic bouts of fatigue

and anxiety. Fortunately I have very little if any depression. I feel

like my miracle has happened. Hopefully this drug will work for me.

If anyone has any info on it please contact me and let me know how it

works. Janet

October 7, 2003

I have two boys who both have HFA. I always say that they are like

two sides of the same coin.

Roxanna

> Hello all my name is Kristal I am a mother of two Zachary(8) and

Karie Rose(6) both of which have AS. Karie has had her dx since age 4

(a week after her birthday) and Zachary got his last Friday 10-3-03.

I am at my wits end. My kids are soooo different. One of the

reasons it took so long to " spot " Zachary's is that I am so tuned

into how it presents in girls. Anyway I was just wondering if there

were other parents on the list with 2 kids, a son and daughter

maybe..with Asperger.

>

> Thanks,

> Kristal in SWVA

>

December 13, 2003

Welcome Leafy

While, I don't have any experience with residential therapy, I know other do.

Can you tell us how old your children are? We look forward to getting to

know you all.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with

Mitochondrial Disease, Gaige age 4 with Aspergers Syndrome and Bliss age 2 with

very very mild Cerebral Palsy.

www.HeartLiftersGallery.com

NurturingHeavensKids/

December 2, 2004

Hi -

Welcome! I am fairly new to this site as well. I had my explant surgery three weeks ago. I am still recovering a little...no heavy lifting...but other than that I feel great. I was really sick there for a while. The difference is amazing. Most people were surprised when I came out of six hours of surgery and said I feel better than when I went in

I'm sorry to hear about your contracture. I did not have any problems such as that but I was sick. Luckily...mine did not rupture before explant. After all...I had them for seven years. With the rupture rates that seems impossible anymore. Were you sick at all? How do you feel now? Everyone here knows what it is like to be glad to get rid of those things.

Christy

December 2, 2004

Welcome to the group ,

Congradulations on taking the first big step!

Have you been having any symptoms? Or, did you have

your implants removed for capsular contracture? Who

was your doctor? . . . did he/she remove your implants

en bloc? Are you happy with the cosmetic results?

If you're having symptoms, be sure to stick around for

some excellent detox information.

However, I hope you had your implants removed before

you got sick!

Hugs and prayers,

Rogene

December 2, 2004

Hi Christy,

Thank you for the welcome. I am not sick. I did have a few things

like weight gain, back aches,and the capsule contracture. I did not

know people really got ill from them until I found this site.

It surprised me. I hated the way they felt in side my body. It was

gross. They were like rocks.

I am glad to hear you got better after removal. I feel weak from the

surgery, very low on energy, otherwise I feel good. My breasts are

saggy but at least they do not hurt anymore.

In , SodaRene2@a... wrote:

> Hi -

>

> Welcome! I am fairly new to this site as well. I had my explant

surgery

> three weeks ago. I am still recovering a little...no heavy

lifting...but other

> than that I feel great. I was really sick there for a while. The

difference

> is amazing. Most people were surprised when I came out of six

hours of surgery

> and said I feel better than when I went in

>

> I'm sorry to hear about your contracture. I did not have any

problems such

> as that but I was sick. Luckily...mine did not rupture before

explant. After

> all...I had them for seven years. With the rupture rates that

seems

> impossible anymore. Were you sick at all? How do you feel now?

Everyone here knows

> what it is like to be glad to get rid of those things.

>

> Christy

December 2, 2004

Thank you Rogene! what a pretty name that is.

My Implants were hard as rocks, so I had them taken out. I had it

done by a local plastic surgeon, the same one who put them in. He did

the procedure for free, just charged me for the Operating Room, oh

and the anesthesiologist had his fee. It was easy compared to getting

them put in.

I'm not sure I understand what you mean by " en bloc " or " detoxing " ??

I feel tired, sluggish but doing fine otherwise. My breasts are saggy

and I did not get that fixed because I want more children.

In , Rogene S <saxony01@y...> wrote:

> Welcome to the group ,

>

> Congradulations on taking the first big step!

>

> Have you been having any symptoms? Or, did you have

> your implants removed for capsular contracture? Who

> was your doctor? . . . did he/she remove your implants

> en bloc? Are you happy with the cosmetic results?

>

> If you're having symptoms, be sure to stick around for

> some excellent detox information.

>

> However, I hope you had your implants removed before

> you got sick!

>

> Hugs and prayers,

>

> Rogene

December 3, 2004

Dearest :

I'm so glad that you have come to this wonderful group. We hope that you

will ask questions if you need help. Most of the women have been through

what you have been through; they have many years of experience. I think that

it helps to vent about how you feel, and then we can all give you the love

and support that you need.

Please do not overdo it; this is a good time to pamper yourself. You will

need weeks of rest before you start to feel better.

Good luck in your healing...much love....Lea

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~````

Hi i am new

>

> I had implants put in March of 2002 and just had them taken out a

> week ago last Monday.

>

> I had bad capsule contracture and it feels so good to have them gone.

> I am still sore from the surgery and weak.

> It is good to have a website where I can talk to others who have been

> through this.

>

December 3, 2004

,

En bloc is a method of removing implants. . . It means

removing the capsule with the implant still inside.

You may want to ask your doctor if he removed the

capsules completely. If they haven't been removed, and

if you continue to feel fatigued, it may be that you

will need to have the capsules removed.

Many of us who have had implants have had a large

number of illnesses. We've found that, if we get the

toxins from the implants out of our system, we feel

much better. It takes a long time to detox fully - if

" fully " is possible, considering today's environment.

There's a long list of detox programs listed in our

archives.

For the time being, you need to drink as much water as

possible . . . at least 1/2 ounce of water per pound

of body weight a day. That will help flush silicone

debris loosened by the surgery out of your body.

If you'll wear a snug sports bra 24/7 it will help

shape you up as you heal. You should fill out (we call

it fluffing) over the next six months or so.

Welcome to the " explant club " . . . we have some

wonderful ladies here!

Hugs,

Rogene

December 3, 2004

Thank you for answering my post Rogene. I will have to ask my Dr

tomorrow if he did the en bloc. I know he took everything out because

i had such hard tissue in side and it is all gone and very soft

again. I was never sick from the implants, in the way you are

describing, I did have problems with weight gain over the 2 years I

had them. I was 110 pounds and now I am 140 so that is pretty big for

two years, but then again, the implants were so heavy and

uncomfortable that I gave up my step aerobic and dance classes. I

will drink the water, but I am not sure what the archives are, or why

I need to do this detox. I am still not sure what it is.

thank you

jamie

In , Rogene S <saxony01@y...> wrote:

> ,

>

> En bloc is a method of removing implants. . . It means

> removing the capsule with the implant still inside.

> You may want to ask your doctor if he removed the

> capsules completely. If they haven't been removed, and

> if you continue to feel fatigued, it may be that you

> will need to have the capsules removed.

>

> Many of us who have had implants have had a large

> number of illnesses. We've found that, if we get the

> toxins from the implants out of our system, we feel

> much better. It takes a long time to detox fully - if

> " fully " is possible, considering today's environment.

> There's a long list of detox programs listed in our

> archives.

>

> For the time being, you need to drink as much water as

> possible . . . at least 1/2 ounce of water per pound

> of body weight a day. That will help flush silicone

> debris loosened by the surgery out of your body.

>

> If you'll wear a snug sports bra 24/7 it will help

> shape you up as you heal. You should fill out (we call

> it fluffing) over the next six months or so.

>

> Welcome to the " explant club " . . . we have some

> wonderful ladies here!

>

> Hugs,

>

> Rogene

December 3, 2004

Hi ,

Here is the link to the archives

/

You can find it at the bottom of this page, if your

page looks like mine.

Hopefully you are one of the lucky ones who got their

implants out and won't have any problems. It sounds as

though you are! . . . But it never hurts to be

informed so if things don't go exactly as planned,

you'll be prepared to handle it.

There are so many kinds of implants, it's hard to make

a blanket statement about what you may be dealing

with, if anything. To make the shell of implants

solid, they use platinum or tin (or maybe something

else) as a catalyst. Platinum is an especially potent

toxin. It can cause serious neurological damage. Some

saline implants are found to be contaminated with a

number of dangerous organisms. . . Some women send

their implants to a specialist to determine which

organisms are in their implants.

With gel implants, the gel that leaks out through the

shell gets distributed throughout the body. This

varies greatly from one implant to another, based on

the integrity of the shell, the thickness of the

shell, and how old the implant is. As implants age,

the shell weakens, is spread through the body, along

with the contents.

In addition to the implant itself, the human body will

try to reject anything foreign. The hardened capsule

you had was evidence of your body trying to wall off

self from non-self.

Eventually, the immune system wears down. Then it may

either attack itself (autoimmune disease), or fail to

protect one from infection. The body has a host of

positive as well as negative organisms that live

inside it. . . The positive organism help break down

our foods for digestion.

When we get sick, especially when we take antibiotics,

the positive organisms are suppressed. Unfortunately

the negative organisms are stronger. When the positive

organisms get suppressed, the negative organisms

flourish, resulting in an overgrowth commonly called

Candida, or yeast. There are many types of yeast!

It's really tough to get control Candida. Most of the

foods we love to eat, especially sugar and refined

grains, feed on Candida. We have to eliminate these

foods to get Candida under control. When Candida is

killed off via diet, supplements, or medication, there

is a die-off of Candida. This die-off produces toxins

that must be flushed from the body . . .

I could go on all night about this . . . If you're not

symptomatic, you may not have anything to worry about.

Did you have saline, or gel implants? . . . It would

be good to know if there was a spill of either saline

or gel during your explant. The doctor's report should

tell you. Do you know what your implants looked like

after they were removed? . . . Were they discolored?

For the time being, make every effort to take good

care of yourself. . . Eat well, drink plenty of water,

get a moderate amount of exercise like walking, get

plenty of sleep, and think positive thoughts!

As to getting pregnant, I would wait until you feel

fully recovered before attempting pregnancy. Because

of the toxins, some children have experienced ongoing

health problems after being born to implanted women. I

know you'll want to do everything possible to have a

healthy child.

Hugs and prayers,

Rogene

April 6, 2005

,

Where do you live??

Maybe you should look on the website to see a pharmacy near you that

can make it and has a reputation for making it well.

I did not have one of those pharmacys near me but I created a

realtionship with a pharmasist in a city near by that compounds.

She took all the info that I could get for her and has made the

capsules for me.

We did discuss using the liquid but I was not comfortable so she made

the capsules.

> Hi everyone I am new here and have been Dx with MS for 6 years.

>

> I'd like to know your thoughts about my doctor filling my LDN

prescription as

> a liquid suspension. It took the hospital pharmacy 3 weeks to get

it filled.

> Finally by a nearby privately owned pharmacy. And yes I feel I

progressed

> during that time.

>

> Can a liquid suspension work well? It is like cherry flavored

syrup. I am

> either too far progressed to feel much energy return or it is a bad

mixture. I

> have been taking it for about 3 weeks now.

>

> -

April 6, 2005

Thanks Jim / Thanks Jen,

I live in California, south of San Francisco.

I am calling the pharmacy today and will follow up with a call to my Neuro

-

April 6, 2005

> Hi everyone I am new here and have been Dx with MS for 6 years.

>

> I'd like to know your thoughts about my doctor filling my LDN prescription as

> a liquid suspension. It took the hospital pharmacy 3 weeks to get it filled.

> Finally by a nearby privately owned pharmacy. And yes I feel I progressed

> during that time.

>

> Can a liquid suspension work well? It is like cherry flavored syrup. I am

> either too far progressed to feel much energy return or it is a bad mixture. I

> have been taking it for about 3 weeks now.

>

> -

===========

Print off the instructions on how LDN needs to be prepared and take it to this

pharmacy. It sounds as though it's being done all wrong. Or have your script

switched to Skip's in Florida from the LDN site.

April 7, 2005

Re: [low dose naltrexone] Re: Hi I am new

Thanks Jim / Thanks Jen,

I live in California, south of San Francisco.

I am calling the pharmacy today and will follow up with a call to my Neuro

-

September 7, 2005

Hello and welcome,

Your story is the same as most of us here. Doctors are simply not

educated on the subject of plagiocephaly. This is the place to be right

now, you are not alone, and you will make tons of plagio friends to

lean on when you need to. This doctors name sounds familiar, but can't

think why that is, if I think of it I'll let you know. It is perfectly

normal for you to feel this way and second guess yourself, but you will

become more educated the more time you spend with us and then you will

feel better. Trust your parental instincts, they are usually right. Let

me know what Dr. Mottram says.

CAROLG

> Hello my son is 13 months old and are going to see steve mottram

> tomorrow,i only phoned yesterday and they are seeing him asap,,for a

> while now I have been thinking about this but all drs/health visitors

> jusy laughed at me when i asked about his head and said it was normal,

> yeah right???

> After reading in take a break etc i have finally decided to look into

> it,aint it expensive though(but worth it) wht the Nhs cant pay i dont

> no???they should be made to???

> Well i aint stopped crying yet,,is this normal i ask myself??

> Ricky's head is flat at the back,(poor thing)anyway i guess we will

> find ouy tom!!!

September 7, 2005