New here

[Guest guest]

Your message came through fine!

Chad

[Guest guest]

On 11 Jul 1999 10:35:55 -0000, roausili@... wrote:

>From: roausili@...

>

>Hi. I'm new. I posted one message from my mailer

>a while ago and got a message back that the message I sent didn't go through.

Does everyone see this message OK?

>

Came through here.

Steve

http://www.zoomnet.net/~steve

[Guest guest]

I got it.

--- roausili@... wrote:

> From: roausili@...

>

> Hi. I'm new. I posted one message from my mailer

> a while ago and got a message back that the message

> I sent didn't go through. Does everyone see this

> message OK?

>

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

[Guest guest]

Thanks, Steve.

The first time I tried to post, I got a message back from the

mailer Daemon. Looks like it's working OK now, though.

Re: [ ] New Here

> From: steve@... (Steve Ratliff)

>

> On 11 Jul 1999 10:35:55 -0000, roausili@... wrote:

>

> >From: roausili@...

> >

> >Hi. I'm new. I posted one message from my mailer

> >a while ago and got a message back that the message I sent didn't go

through. Does everyone see this message OK?

> >

>

> Came through here.

>

> Steve

>

> http://www.zoomnet.net/~steve

>

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

[Guest guest]

Hi Vicki,

I just wanted to tell you I have been on methotrexate over 10 years and up

til this year it has worked wonders for me. I was on 6 mg. MTX once a week,

20mg feldene once a day, and 1g folic acid once a day. THis year my dr. has

upped my mtx to 7.5 mg once a week. I have also learned (from this list) not

to take folic acid on the same day I take mtx.

I was feeling so good last summer that I went off the mtx - and I felt great

for 5 1/2 months. THen it came back with a vengeance. I have new swollen

fingers and toes. I also learned from this list that once you get off mtx,

sometimes your body rejects it when you try to get back on it. I think that

is my case right now, altho my dr. hasn't officially said that.

My biggest complaint is my hair has thinned considerably. There are no bald

spots but it is just a lot thinner than it used to be. I have never had an

abnormal liver test (luckily!).

I am sure there are others who haven't been as lucky but before I was put on

mtx, it took me 20 minutes to start moving every morning. At that time I was

a single mom with 2 kids .... I had to do something.

Good luck, hope this helps

Joanne

[Guest guest]

--- VLarson169@... wrote:

> I am going to be put on Mtx. I have been reading up

> on this medication and I'm not happy about this

> at all. I've been putting it off for years - going

> on it - but I think I've reached the end of my

> rope. Can I expect it to really do any good? Is

> there any end to all of this inflammation and pain?

> Any hope?

Hi Amy --welcome to the list. Is there any hope? Yes,

I think so. I have been on MTX for more than a year

now, and I credit it -- it even more than the Enbrel

--in toning down my rather substantial pain to a level

at which I can operate on a daily basis. My job also

calls for a good deal of typing, and thanks to MTX I

can! However, I am investing in voice recognition

software to help out. The one thing that may concern

you most about MTX is the fact that you can not have

children while using it. The fear was great enough

for my wife and I that I obtained a vasectomy after it

became apparent that I would be using MTX for the long

haul. I don't know where you are in your life, but if

you are considering having children any time in the

near future you don't want to be using MTX. If

children are not a question -- or risk? -- for you

right now I say go for it: you have only your pain to

lose.

Get better! Stay in touch!

, NJ Highlands

raharris@...

[Guest guest]

> Hi,

> My name is Vicki

if I'm not better,

> I am going to be put on

> Mtx. I have been reading up on this medication and

> I'm not happy about this

> at all.

Hi Vicki

I've been on MTX for almost two yrs now and it's

really helped. I know the side effects can sound scary

but remember that many people can take this drug for a

long time with no side effect. You will be getting

blood work done regularly, not much fun but great for

your peace of mind. I may not be the best case

scenario since I had fairly bad deformity of my hands

and feet before going on it but as for day to day pain

I'm so much better off. As said the main

drawback concerns your status as far as potential

parenthood is concerned. I'm sure your RD wouldn't be

suggesting MTX if you are thinking of getting pregnant

any time soon, but you will have to be extra careful.

As for me so far no liver damage showing in the blood

work, no side effect other than mouth sores and folic

acid took care of that. Good luck.

===

C McCullough

thelockhorns@...

[Guest guest]

Dear Vicki,

It sounds pretty standard what your doctors plans are for you. He gave you

the predisone to counteract the flare-up you had. Once it settled down some

you still had unresolved pain and inflammation it sounds like.

His plan to try increasing the Sulfalazine before going to Metho makes sense.

It may be confusing though because you are going to continue on the

Predisone for another month. You won't be able to tell if the increase on the

Sulfa is helping or the continued Predisone is helping. It is hard when we

change two meds at once in my experience.

For pain, some people on the list have tried Vioxx and Celebrex, both of

which are easier on the stomach than NSAIDS. Has your doctor mentioned

trying those? Perhaps they would be a better choice than the steroids.

We have discussed the use of Metho many times and you will find a lot in the

list archives about it. I can say that it worked well for several years for

me, although it has side effects, many times those can be alleviated by

taking supplements, etc. If you start on Metho, we will share all our

" insider tricks " with you on how we deal with the side effects.

Welcome, welcome to the group,

[Guest guest]

Joanne,

Thanks for the information on MTX. I have read a bit about it and I am

concerned about starting something that I will have problems with if I ever

have to go off of it temporarily and then go back on it. The side affects

seem bothersome and I wonder if it's worth it. The alternative seems to be

to live with swollen joints and pain. That isn't a favorable choice either.

Sigh. I wish they'd find a cure for this.

My Dr tells me there's someone in Canada who has been doing a study on

psoriatic arthritis. That's encouraging. Up until now, it doesn't seem

there's been much research done on it.

I'm sorry you had problems after feeling so good. I hope the mtx stables

things for you again.

Vicki

[Guest guest]

, and all...

My sons are grown and gone from home and I am a " young " grandmother (g) so

I hadn't even considered pregnancy as a problem of mtx. I had read that in

the information the Dr gave me and I brushed right over that one. I had

forgotten it entirely until you each brought it up. I guess I had always

that the mtx would be the last alternative... and now I'm faced with it. If

that doesn't work, then what? That's the concern to me right now.

Vicki

[Guest guest]

< You won't be able to tell if the increase on the Sulfa is helping or the

continued Predisone is helping. It is hard when we change two meds at once

in my experience. >

,

Well, so far neither one of them is helping. (g) I'm right back to where

I started before the prednizone. This disease has been active for months and

months. The Dr is really not happy either. Thanks for the info. It's good

to know his plans for me are pretty standard.

Vicki

[Guest guest]

Dear Liz, Welcome to the group. I just joined the group about 3 months

ago when our 11 year old was diagnosed with systemic JRA. She started off

on naprosyn, and now has changed to indomethacin. She gets headaches, but

the swelling and pain is a bit better. Her energy is finally starting to

return. The fevers have gone, but she gets a nightly rash. I have learned

lots from this forum, and it is a great place to get answers to questions.

New Here

>From: smithfamilyzoo@...

>

>Hi all. I've " spoken " to a few people on this list thru other avenues, but

just decided to join here. My 8 year old daughter was diagnosed with pauci

JRA over 5 years ago, and has since progressed to poly. We are now at the

tail end of what was a very difficult year. I'm pleased to say that things

are going pretty well now. There is active inflammation in only a few

joints, and the doctor even mentioned the possibility of trying to lower med

doses in the spring! I look forward to hearing from all of you--I think that

having networks like this for parents is great! Liz

>

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

[Guest guest]

Hi Liz,

Welcome to our group. I'm sorry to hear that this past year was not so

good for your daughter. Hopefully, things will continue improving and

you'll be able to start decreasing some of the meds with no accompanying

flare ups of disease activity. I know it's scary. When my son finally

starts doing well, we look forward to the tapering of his steroids.

Unfortunately it has often, in the past, brought about new flare ups and

defeated us in the tapering stages. I'm keeping my fingers crossed that

this time around things will go more smoothely. In May it will be 5

years since he first got JRA and he deserves a break from it all. So do

all of our kids! Nice meeting you

Take care,

Georgina

smithfamilyzoo@... wrote:

> Hi all. I've " spoken " to a few people on this list thru other avenues, but

just decided to join here. My 8 year old daughter was diagnosed with pauci JRA

over 5 years ago, and has since progressed to poly. We are now at the tail end

of what was a very difficult year. I'm pleased to say that things are going

pretty well now. There is active inflammation in only a few joints, and the

doctor even mentioned the possibility of trying to lower med doses in the

spring! I look forward to hearing from all of you--I think that having networks

like this for parents is great! Liz

[Guest guest]

Hello Sandy,

Thanks for your supporting words.

I know that I'm not alloud to falter the diet and medication. The hardest thing

abou it is that before I get healthy again, it should get worse first. Because

when killing the candidiasis, the candidiasis tries to live anyway and gets

stronger and makes you feel worse. It will be killed eventually, but it goes

really slow. I'm now in the stage where the sympthones get worse and I totally

feel like a trainwreck or something like that.

But I know that it'll go away that's what keeps me going.

Somewhere I'm happy that I'm not in this but on the other hand I hate not being

the only one in the world having it, because i know what a bad illnis it is, and

how you feel when having it, this I wouldn't even wish my worse enemy.

Samira

______________________________________________

FREE Personalized Email at Mail.com

Sign up at http://www.mail.com/?sr=signup

[Guest guest]

In a message dated 1/18/01 9:38:48 AM Pacific Standard Time, amatrine@... writes:

The doc I had is trying to say its in m head, yeah rite!!! I have an appoinment with a new doc next week who I hope will run the proper tests. Also wondering how people do on the steroid treatment.

Yup, it sounds like time to talk to another doctor. Prednisone has its side effects, but most people (for whom it's appropriate) find it well worth the negatives. Best wishes, and welcome to the group.

Harper

[Guest guest]

GOOD LUCK, I JUST AM GETTING TO WEEK 24 ON COMBO, AND IF YOU DO IT, MY ADVICE,

MAKE A WATER BOTTLE PART OF YOUR LIFE, DRINK DRINK DRINK...<br>GOOD LUCK<br>R

[Guest guest]

Welcome to the greatest support grp on the net. I have met the most awesome

people here. All survivors out to beat the odds.

[Guest guest]

Hi Angie and welcome here. My name is Judi and I am short-statured through a

rare birth defect called " Cystinosis " . I am proportioned and 4'2 " tall. I

have taken Levoxyl (Synthroid or levothyroxine, all 3 the same drug) for

over 31 years and it has caused me no ill effects.

Judi

New here

> Hi, my name is Angie, I am mom to 3 wonderful children. My

> youngest, Peyton, was just diagnosed with extremely low growth

> horomone level. She is 10 months old and really hasn't grown

> any since she was 4 months. She is only 14lbs 7oz and 25

> inches long (she was 7lbs and 19 3/4 inches at birth). We have

> been referred to an endocrinologist, who we will see on May

> 15th.

>

> Peyton's doctor has told me that she thinks it could be one of 2

> things, either a tumor near her pituitary gland or pituitary

> dwarfism. This has come as a very big shock to me. I just went

> through enough medical/health issues with my middle child(she

> has 2 congential heart defects) and thought we were done with

> specialist and doctors for a while. I have been told that Peyton

> may have to be on growth hormones for the rest of her life. This

> kind of scares me, I don't know much about them but am

> wondering if this can be good to be on for such a long period of

> time.

>

> If anyone has any experience with any of this, I would love to hear

> it. I am trying to find as much info on it as possible. I know that

> we will know more once we see the endocrinologist, but I would

> like to be prepared ahead of time.

>

> Angie

> Mom to Skylar(5), Caroline (2 1/2) and Peyton Lee (10 months)

>

>

>

> Looking to unsubscribe? Don't e-mail the list! Just send a blank e-mail to

dwarfism-unsubscribe

>

>

[Guest guest]

Hi LEI - nice to meet you

you really don't " have " to have a doc to lead you through candida recovery.

You really can do this on your own if you are committed and willing to

research and then APPLY to yourself what you have learned.

Through much trial and error many of us on this list have struggled through

much of what you have... it grieves me so much to read your story -

" knowing " it could have been different ... " if " ....

I do the " if's " all the time because I too was literally " brought up " on

antibiotics. In fact when I was 7 years old I had osteomylitis in my left

leg and the way they cured me was to put me in a hospital bed for 3 months

on penecillin drip. Well, it seemed to cure the osteomylitis, but of course

my flora/fauna was destroyed (i didn't know that for 20 years!) and my

immune system was slowly coming to a terrible place too. I spent years in

competitive sports, etc... (runnin' that adrenalin!) and finally a car

accident just put me literally on my back in bed. NO ONE knew what was

wrong with me - I literally went to 18 docs. I had two un-needed surgeries

(thinking they would " cure " me!) and many many sleepless nights... and

emotional years, feeling I would NEVER EVER get better.

You CAN get better - you WILL get better if you persevere and if you are

diligent. When we want other things in life we can be as persistent as

anything - but somehow with " this " particular battle - there is always a

DIVERSION coming in many forms tellling you that " its really NO big deal... "

yada yada....

you will either get down to business and treat it now or you will suffer

worse consequences down the road - I'm hoping you'll do this NOW ... and

make real changes.

I'm a broken record on the www.wholeapproach.com site - but they offer 3

ingredients that mixed together will constitute a 'purge' that you take a.m.

and p.m. on empty stomach. This is a phenomenal way you can rid yourself of

even systemic candida problems... it also cleanses the colon as well (where

the breeding grounds of the candida is).... these products can also be 'put

together' on your own - and you can get the ingred.'s cheaper than through

this website. You can go there though to the site and READ and see how it

works and why.

sincerely

wendy

candidiasis <candidiasis >

Date: Saturday, May 05, 2001 8:14 AM

Subject: New Here

Hi everyone,

I'm new to the list and am having lots of problems with the C-disease.

A couple of years ago I read " The Yeast Connection and the Woman " by

Dr. Crook, so I am familiar with many of the problems that yeast can

cause. A little about me:

Throughout my life I have taken many antibiotics, trying to fight off

upper respiratory infections, which I'm terribly prone to. I also had

some problems with Bacterial Vaginosis through the '90s and took

antibiotics for that. My main problems have been since 1998, when, in

the 3rd trimester of my pregnancy, I began getting vaginal yeast

infections that were next to impossible to cure. When the baby was

born I left the hospital with some kind of BV, which I didn't get

treated for till 5 months later... of course, with antibiotics. I went

on 3 rounds of that antibiotic until I came down with the vaginal yeast

infections and extreme fatigue. I gained weight like crazy, too.

The problems I'm having now are: Extreme bloating; Indigestion;

Heartburn; Lazy bowels; Low energy; Irritability; and of course,

vaginal yeast infections. None of the over- the- counter vaginal

treatments work for me anymore, so I resorted to using yogurt. (Not

even Diflucan worked.) The yogurt does help. But my main problems are

the digestive kind. I lack a gall bladder, that having been removed 15

years ago, which brought on immediate digestive problems. So what to

do, what to do. I must get rid of this yeast -- I must. I have

recently gained 10 pounds, and I'm not even eating more. The only time

I feel good is when I do water fasting for 2 days -- then I feel like a

whole new person. But that gets old, you know. I'm 40, and starvation

sucks. Oh, and I have no medical insurance, so don't know how I can

afford to go see anyone. I still owe for the lower abdominal/ pelvic

ultrasound of last year (which showed no abnormalities, thank

goodness).

Any ideas how to jump start some healing?

Thanks in advance... Lei

=====

__________________________________________________

[Guest guest]

Hello JoAnn

pleased to meet you!

I'm a knee person too except i have it in both knees>

major annoyance when it's bad isn't it. I'm only on

Naprosyn at the moment and i think the pa is going

through a good phase so i'm very grateful.

it's interesting that it took so long for your pa to

develop after you had psoriasis> my came on within 2

years unfortunately. i do try and enjoy the good days

too but it is very depressing when you have a really

bad flare up > any good day tends to be long

forgotten!

glad you found the site> i only stumbled across it

last week too. looking forward to reading more from

you.

take care

jacqui (UK)

--- jaldh2001@... wrote: > Hello! So glad I've

found this site!!! My name is

> JoAnn, live in

> southwest Ohio, and I'm 51. Married to VERY patient

> man, 2 children

> and 4 grandchildren.

> I've had psoriasis since I was about 30 and was

> diagnosed with PA in

> 1999. What a roller coaster ride this has been! I'm

> currently on

> enbrel twice weekly, methotrexate(15 mg.) every

> Tuesday, voltaren,

> folic acid, vicodan for pain, and serzone for

> depression. Feel like a

> walking pharmacy!! My biggest problem is in my left

> foot and knee. My

> hands and wrists usually are better as the morning

> moves along, but

> when I'm having a flare-up the foot and knee are a

> constant pain in

> the rear.

> Would love to hear from all of you, especially if

> you share some of

> my symptons. I realize I could be much worse, and

> I'm truly thankful

> for every good day I have.

> Looking forward to

> your mail!

> JoAnn

>

>

>

____________________________________________________________

[Guest guest]

hello my name is karen ...my daughter tabitha was diagnosed at the age of 4

1/2 years of age and now she is sixteen..my heart goes out to you and your

family. there is a medicine tabitha is now on called remicade..i don't know

exactly how old a child has to be in order to get this. tabitha has had both

knees and her hips replaced(when she was older). her fingers and wrists is

one of the many things that poly jra does do great damage to. please if your

daughter is given splints please make sure she wears them faithfully as told.

that is one thing i definitely failed at..i don't know who your doctor is but

one thing that did help tabitha is that she was put in a rehabilitation

center for 5 weeks when she was 5 years of age..constant therapy and plus

they set everything up for school...you make sure that you get a contract

with the school..i can't think of the name of this but i am sure someone on

the will know what i am talking about. this is where you, the

doctors, therapist, and teachers all come to an agreement on what is to be

expected of the school. i say this because i have had trouble with a couple

of school districts wanting to supply the things needed to make tabitha

comfortable in school. she has an aide while in school...to help her with her

tray at lunchtime...etc. i wish you the best of luck..if ever you have any

questions please feel free to email me at Srargem35@.... just hang in

there..karen & (tabitha)

[Guest guest]

Dear Kim,

Welcome! My name is and my daughter Katelyn (Kate) has a severe

case of polyarticular jra--affecting every joint in both sides . She is

badly affected in her wrists, fingers, ankle, knees , hips and

shoulders. She was dx. shortly after her third birthday and is now 6

1/2. She sleeps in hand splints, leg casts and has endured many hours

of physical therapies. She started out on Naprosyn then Methotrexate was

added. She went into remission but had to be taken off the Methotrexate

due to extremely high liver counts, then had to be pulled off Naprosyn

due to scarring and bruising. She currently is on Enbrel injections and

Ibuprofen. Also Prilosec for her stomach. Please don't let any of this

scare you as every child reacts differently to each med--what may work

for one doesn't neccesarily work for another. As far as the insurance

covering ot ,pt, and other things--go to your hospitals social worker

and ask if there are any programs there. Here in Indiana we have

Children With Special Health Care Needs--it supplements our insurance--

as we are that working middle class family that doesn't qualify for

state aid. They have been a Godsend picking up what our insurance won't

cover. Also don't get discouraged if meds don't seem to work

anymore--alot of it is basic trial and error to see what will. Kate does

have her bad days but on her good ones plays tee-ball and basketball.

She just finished kindergarten and actually was one of 2 kids who missed

the least amount of days! With this disease it's usually day to day and

even hour to hour but hang in there! I'm sorry so long but I hope I

could help some. Good luck!

and Kate

[Guest guest]

Hi Kim. my name is kellie, my daughter who is 6 also has polyarticular she

was diagnosed in oct. of 2000. she started on naprosyn and was just changed

to vioxx and plaquinel. she also has it in her knees, feet, toes, elbows,

hands, fingers and wrists. sence she has beeen put on the plaquinel she has

been alot better, there are side effects though. eye problems are one of

them and we see an eye doctor every 3 months to be safe.. she now runs,

plays and stuff like the other kids there is still bad days and some things

she still has a hard time doing but her doctor said she is looking alot

better.. hope this helps you if you need anyother info please feel free to

write me.. kellie

>From: a k <madrex2@...>

>Reply-

>

>Subject: new here

>Date: Sat, 2 Jun 2001 14:50:00 -0700 (PDT)

>

>Hi, I joined this group about 2 weeks ago and have

>just been reading the messages. I've found that many

>of your stories really hit home, making me feel like

>there actually are people out there that understand. I

>thought now would be a great time to introduce

>ourselves! My name is Kim, my 4 year old daughter,

>Alli, has polyarticular jra. I also have a 7 year old

>daughter, Sara, and a husband, Alli was

>diagnosed just after her 2nd birthday. Her affected

>joints are her knees, wrists and fingers. She has been

>taking Naprosyn since last Spring, and was on Motrin

>before that. The Naprosyn seems to help, however I'm

>not too pleased with it anymore. Alli has her good

>days, sometimes she even has good weeks at a time, but

>her wrists and fingers just won't get any better.

>She's had some rough days lately. Occupational

>therapy helped, but insurance stopped paying after a

>certain amount so we now just try to do exercises at

>home. She will see her doctor again in July, so

>hopefully she will be put on a different medicine.

>What is usually given to a child as young as Alli

>after Naprosyn, what are some common choices? I don't

>like the idea of these powerful medicines, but the

>idea of permanent joint damage is worse to me. She

>has been accepted into the public school's Early

>Childhood Special Education Program, which is

>preschool located at Sara's elementary school, and not

>only would that help the transition into kindergarten

>she will receive therapy there. I guess that's good

>news! Well, I've rambled on long enough, but just

>wanted to share a little and make my introduction!

>Thanks for listening,

>Kim & Alli

>

>__________________________________________________

>

[Guest guest]

Hi KK,

You might want to read up on colostrum, at www.immunetree.com Also, I have an audio tape on calcium, made by Dr. Barefoot and he talks about a person with MS who was wheel chair bound, who is now up and running daily, from his coral calcium alone. That is all I know.

Also have heard that colostrum has completely reversed MS in people. This has been written about in medical papers and isn't just anecdotal natural health gossip. Apparently pure colostrum has nerve growth factor in it, which I am sure you know has been shown to be remarkable for MS. And because pure colostrum is healing to the bowel, you get double benefits.

Hope that helps.

Donna

New hereI would like to take the time to introduce myself. I am over 50,haveMultiple Sclerosis and am wheelchair bound. Retiring soon. YEAH!! The MS has taken away the tone in my bowels so I am very irregular. It may come back but then again it may not. So I need education andhelp correcting the situation. Hoping to find both here.

[Guest guest]

Hi Jen,

Many people with postpartum GD have noticed a reduction in hyper symptoms after they stopped breastfeeding. Hopefully B will see this and tell you of her experience and also that of her sister in law. Best to you, Elaine