new

[Guest guest]

Hi ,

Welcome to the group! Finding out that you have RP is

a very scary time in ones life. I know it was for me.

But, you are in the right place with this group. You

will learn so much, and no question is ever considered

dumb or unimportant. I learn daily from the group.

The problem is, that we are all different and there is

not a standard treatment. What works for one, does

not always work for another. I think this probably

even frustrates the doctors!

Do you see a rheumatologist? When I was on MTX, I was

told that it could take up to three months for it to

really take effect. How long have you been taking it?

As to you ever going back to work, I don't think

anyone can answer that for you at this point. Getting

on the right medications is often a matter of much

trial and error. There are some in the group who do

work full time, and they would know more about how

they manage than I.

Just hang in there and keep asking all the ??? that

you have.

Love, squeek

--- michelle12371106 wrote:

> I am very excited to learn about this support group,

> the more I read,

> the more I am hopeful that there are others out

> there that can offer

> me some answers, I have been having a terrible time

> with this RP.

> Since I was just officially diagnosed about 3 weeks

> ago, I have been

> living with this pain since November. I am hoping

> that the Pred.

> and Metho kicks in soon. As of today, I have a

> flare in my Right

> ear, both of my feet and they say something is in

> the bottom of my

> left lung. I am scheduled for a CT needle biopsy

> Monday.

> I just am hanging on to the hope that the pain will

> soon go away.

> Although I am on pain med, it still does not " male

> it go away " .

> I have read that with the right meds you can go into

> remisssion, does

> that mean I can go back to work? Am I going to be

> able to get back

> to my daily schedule, or is being on disability and

> trying to just

> have the strength to get up going to become a way of

> life for me?

> Gosh, I have so many questions-I hope that I don't

> overwhelm anyone.

> But I have been so confused for so long, I just want

> someone with

> some experience to shed some light on this disease.

> The docs here in

> Shreveport, Louisiana have never seen anything like

> this and they

> certainly don't want to admit itm they just want the

> almightly $$$$$$.

> Any info is appreciated-I am so glad we found you.

>

>

=====

__________________________________________________

[Guest guest]

i have two sons alex adhd scd 2 months we are having die off right

now and would like to know how long it last in general and when things

seem to be getting better fro him is it at that time I intro new food-

such as yogurt or almond butter?

My second carter has celiac(surprise:}= he has been on the diet for

only one week or so. At first we had a great stool. now back to the

dreaded D word. he only has meat vegs and 1/2 to 1 cup applesauce a

day fro supplememnt intake. he is also on candex. His tonsils sre very

swollen and have been most of his life. i know it is early but I had

hoped to see quicker improvement with carter. I tried to do chicken

soup with him and it was refusal all the way. I feel like i need to

give no other choice but the soup or just keep plugging away as I am.

both -no eggs, peanut , and no pork. has alot of immune

system problems and very bad yeast. Any advice would help

[Guest guest]

Welcome to the group jfogarty75,

> i have two sons alex adhd scd 2 months we are having die off

right

> now and would like to know how long it last in general and when

things

> seem to be getting better fro him is it at that time I intro new

food-

> such as yogurt or almond butter?

Do you mean that you have had 2 months of die off or that the die

off just started now? What is he eating? Did you start with the

intro and increase?

Have you tried epsom salt baths and/or activated charcoal for the

die off symptoms?

> My second carter has celiac(surprise:}= he has been on the diet

for

> only one week or so. At first we had a great stool. now back to

the

> dreaded D word.

Did you introduce anything new just before the diarrhea restarted?

Did you change the way you prepared foods? For example: were you

boiling amd pureeing carrots and now are only lightly steaming

carrots/ Where you broiling burgers and now they are pan fried?

etc...

> he only has meat vegs and 1/2 to 1 cup applesauce a

> day fro supplememnt intake.

What veggies?

> he is also on candex.

When did he start the candex? Have you increased the dose?

> His tonsils sre very

> swollen and have been most of his life. i know it is early but I

had

> hoped to see quicker improvement with carter. I tried to do

chicken

> soup with him and it was refusal all the way.

If he doesn't eat the chicken soup that's okay - the most important

thing is to start with easy to digest foods that are nutritious so

his body can take those nutrients and heal. I can't eat the broth,

so in the past I just ate the chicken and pureed the carrots with

some water or homemade veggie broth and salt.

Sheila, SCD 2/01, UC 22yrs

mom of and

[Guest guest]

Hi jfogarty75,

> > Have you tried epsom salt baths and/or activated charcoal for

the

> > die off symptoms? WE JUDT STARTED THE ACTIVATED CHARCOAL AND HE

IS

> DOING BETTER.

That's good

> > Did you introduce anything new just before the diarrhea

restarted?

> YES IT SEEMED TO BE FRUIT SO WE BACCKED UP TO JUST MEAT AND VEGS

FOR

> A FEW MORE DAYS. HE HAD FLU LIKE SYMPTOMS TODAY AND VOMITED AS

SOON

> AWS HE WOKE WWITH C/O TUMMY ACHE. ALKA SELTZER GOLD SEEMED TO HELP

These sound like die off symtoms, especially since he only started

last week. Hope he is feeling better soon.

These links may be helpful:

http://pecanbread.com/difficulties.html#initial

http://pecanbread.com/badreaction.html

Sheila, SCD 2/01, UC 22yrs

mom of and