Thanks

[Guest guest]

You're welcome, Dawn. Good luck on finding a new therapy that works for you.

Have you given any thought to Rituxan (rituximab) or Orencia (abatacept)?

Not an MD

[ ] thanks

> ,

>

> Thanks so much!

>

> All these research articles have been a life saver and very informative to

> us !

>

> Blessings

>

>

> Dawn

[Guest guest]

Hi Geri,

Nice to meet you.

Jeannie

[Guest guest]

Thank you, Ruth

Jeannie

[Guest guest]

Dear Michele, You are very welcome! That's such good news to hear you are on

your way to feeling better. Keep us in touch and don't hesitate to ask

questions.~~~~~Dolores

smoosh215 <smoosh215@...> wrote: Just wanted to say thanks to

Dolores and Lynn for the input. I have

noticed such a difference since the celiac diagnosis and dietary

changes. My skin has cleared up almost completely and my dry, cracked

fingers are about 80% better. My energy has increased tremendously as

well. I still have joint pain and nodules but the swelling has gone

down some in my fingers and wrists.

Thanks to all for all your help and concern.

---------------------------------

Pinpoint customers who are looking for what you sell.

[Guest guest]

Hey Michou;

That is the French nick name for and since there are

several with your same name between several sites that I read,I have

just rebaptised you hehehe.Sounds like you have dermatitis herpetiformis

which is secondary to celiac.I have it also.Because celiac causes so

many problems with nutrient absorbtion you MUST take Tri Salts or you

will have a totally acid system that just causes so much pain you want

to crawl in a hole and die.Test your saliva with the same kind of litmus

paper you would use for a swimming pool.Reading should be 7. For anyone

with dry or wrinkled skin....you should get Jojoba oil.It is the only

one that has a molecule small enough to even penetrate your finger nails

and libricate the nail bed.Consumer reports say that the best " anti

aging " products on the market are made by Olay bur this stuff is way

better.After the best part of a year using it 50% of my wrinkles are

gone and the rest is much better ,even the crepy neck skin one gets

after 55.Sure is a lot cheaper also.My nails that were constantly

peeling are now so hard I could scrub a pot with them. Lynne G./SD

P.S. forgot to mention that as little as an eighth of sugar cube is the

maximum gluten you can take without a problem

smoosh215 wrote:

> Just wanted to say thanks to Dolores and Lynn for the input. I have

> noticed such a difference since the celiac diagnosis and dietary

> changes. My skin has cleared up almost completely and my dry, cracked

> fingers are about 80% better. My energy has increased tremendously as

> well. I still have joint pain and nodules but the swelling has gone

> down some in my fingers and wrists.

>

> Thanks to all for all your help and concern.

>

>

>

>

[Guest guest]

Lynne,

You are just plethera of information!!!! So Tri-salts and jojoba

can be purchased at the grocery store? Any particular brand?

Thankfully, I don't have wrinkles yet (I'm only 31 and had pretty

good skin beforehand) but I have noticed dry skin on my nose and

forehead. I'd like very much to prevent them!!! And I know this

sound stupid, but I need to eliminate ALL sugar. What about Stevia?

Thanks so much for your help.

Michou ()

>

> > Just wanted to say thanks to Dolores and Lynn for the input. I

have

> > noticed such a difference since the celiac diagnosis and dietary

> > changes. My skin has cleared up almost completely and my dry,

cracked

> > fingers are about 80% better. My energy has increased

tremendously as

> > well. I still have joint pain and nodules but the swelling has

gone

> > down some in my fingers and wrists.

> >

> > Thanks to all for all your help and concern.

> >

> >

> >

> >

>

>

>

>

>

[Guest guest]

Hi Michou, This is Dolores. Lynne dubbed me Dodo a long time ago and it stuck.

So, I guess you are Michou from now on. She's funny. She turns us all into

French women. I think it's a cute endearment and I like it. It shows she cares

about you. And she is truly a plethera of information. I don't know what

brands of jojoba or tri-salts she uses, but I'm sure she will tell you. Do you

live near a Whole Foods Store? They have everything organic and lots of

choices. I do know about sugar though as I am a diabetic and I know that all

artificial sweeteners are bad. However, if you must, and can tolerate honey,

that can be used as it is a natural product. If you can't as a celiac, then

Stevia, of all the brands would be your best bet. I buy it at Whole Foods. The

restaurants and cafe's don't offer it, so I keep it in my purse. Sometimes I

use spenda, but only if I have not choice whatsoever. The ultimate thing to do

is to train your taste buds. Taste is acquired and

I notice that the less salt or sugar or whatever we use, the less we want and

eventually, we come to dislike it. In my house, because of hypertension, we

stopped using salt years ago and now we never cook with salt and read all

packages for the sodium content. When we go to a restaurant, we ask for no salt

added and if the food tastes salty, we return it and never go back to that

restaurant again. If we have guests, we put the salt & pepper shakers out for

their convenience.

BTW, I have great news for everybody. You all know that I plan on doing the

Marshall Protocol in the fall. Plus you all know that I reached remission on

A/P after only 18 months of therapy. Well yesterday, I had my appointment with

my PCP. I spent two hours in her office. She was thrilled with all the

materials that I brought and wants to know more about it and she said yes, she

would take me on and will talk with Trevor Marshall. She was so open, no eager

is the word, to learn and absorb new ideas in medicine. When I told her about

the book I am planning to write, she was so glad and is behind me all the way.

In fact, she is going to help with the research on autoimmune diseases, their

causes and their cures. She says, it's time. We do need a breakthrough. I

finally got an M.D. who is a true ally. Now I need to get a likeminded Rheumy

on board. I am so happy. I hope Dr. Whitman is that Rheumy. If not, I will

keep on searching. She loves the idea that my

book will portray your stories, actually our stories, accomplishments,

disappointments, anger and frustrations in our daily lives and how we cope. Keep

sending me those stories and photos. For those on any type of therapy who have

succeeded on to remission. Have before and after photos and who would like their

story in the book, please submit them to my other e-mail address. If you want

your story to be told but want to remain anonymous, that can be done also.

Anybody who has just been diagnosed or in the process, please send those stories

too. Anybody who has had stem cell plant replacement or photophoresis or

anyother type of treatment whether it was successful or failed, is also a

welcomed story. We want to present all sides of the story. This book will be a

true story about real people with real names. I have chosen Lynne to be my

co-author for the book as she is the angel who introduced me to all the

materials I needed and today I am in remission because of her

notes. I saved them all even when I was in brain fog and couldn't understand

them. Yes, celiac's, I want your imput also. People who thought about death or

suicide, I want those desperate stories too. We need to show the upside and the

downside of living with these Rheumatic type diseases. We want to say there is

hope and you are not alone. Hope this e-mail gets around. It will take me

about two years to get the book written and published, so your updates will be

important also. I plan to do this while I'm hiding from the sun during my

therapy on the Marshall Plan. Love and success to all of you. BTW, I am already

a published writer, but have never taken on a project of this magnitude. So,

wish me luck, Dolores AKA Dodo E:mail martysfolks@.... or if you

want them to be private, mail them to me: Dolores P. Rosner, 200 E. 5th. St. #

10 C, New York, NY 10003.

smoosh215 <smoosh215@...> wrote:

Lynne,

You are just plethera of information!!!! So Tri-salts and jojoba

can be purchased at the grocery store? Any particular brand?

Thankfully, I don't have wrinkles yet (I'm only 31 and had pretty

good skin beforehand) but I have noticed dry skin on my nose and

forehead. I'd like very much to prevent them!!! And I know this

sound stupid, but I need to eliminate ALL sugar. What about Stevia?

Thanks so much for your help.

Michou ()

>

> > Just wanted to say thanks to Dolores and Lynn for the input. I

have

> > noticed such a difference since the celiac diagnosis and dietary

> > changes. My skin has cleared up almost completely and my dry,

cracked

> > fingers are about 80% better. My energy has increased

tremendously as

> > well. I still have joint pain and nodules but the swelling has

gone

> > down some in my fingers and wrists.

> >

> > Thanks to all for all your help and concern.

> >

> >

> >

> >

>

>

>

>

>

[Guest guest]

Dodo,

I like the name too. I have lots of nick names like smoosh in my

screen name. That evolved from Mish to Mush to Smoosh and even

Smooshy sometimes. My older sister only calls me smoosh - you can

imagine the looks when we're out in public. I always thought your

posts were so well-written. I should've known you were a writer. I

used to teach writing to 3rd, 4th, & 5th graders before I had my

kids and went on leave.

I'm fortunate enough to have a great natual food store right down

the road. I shop there a lot lately and they seem to have

everything. I'm sure I'll find what I need there.

Congrats with your PCP being so receptive and good luck with the

book. I'd love to help out any way I can.

Take care,

Michou

> >

> > > Just wanted to say thanks to Dolores and Lynn for the input. I

> have

> > > noticed such a difference since the celiac diagnosis and

dietary

> > > changes. My skin has cleared up almost completely and my dry,

> cracked

> > > fingers are about 80% better. My energy has increased

> tremendously as

> > > well. I still have joint pain and nodules but the swelling has

> gone

> > > down some in my fingers and wrists.

> > >

> > > Thanks to all for all your help and concern.

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

Hi Kids;

Yes I am a real pain,no?Just scroll down for a couple of answers.

mike rosner wrote:

> Hi Michou, This is Dolores. Lynne dubbed me Dodo a long time ago and

> it stuck. So, I guess you are Michou from now on. She's funny. She

> turns us all into French women. I think it's a cute endearment and I

> like it. It shows she cares about you.

>

Of course I do or I would not be on any bulletin board.Dodo will

tell you I am out to save the world,no doubt

> And she is truly a plethera of information. I don't know what brands

> of jojoba or tri-salts she uses, but I'm sure she will tell you. Do

> you live near a Whole Foods Store? They have everything organic and

> lots of choices. I do know about sugar though as I am a diabetic and I

> know that all artificial sweeteners are bad. However, if you must, and

> can tolerate honey, that can be used as it is a natural product. If

> you can't as a celiac,

>

When you are celiac you often have a severe sensitivity to anything from

sugar cane.Honey,maple syrup,corn syrup are o.kStevia is o.k. if you can

take the taste.I hate it.Splenda is bad for anyone.I use it to kill ants

in the greenhouse so I sure won't touch it.I am sure Dr. Mercola would

have something to say about it google www.mercola.com and use the

" search " Any jojoba oil is great to rub into your skin and nails.Must run

,someone at the door.Finish later

> then Stevia, of all the brands would be your best bet. I buy it at

> Whole Foods. The restaurants and cafe's don't offer it, so I keep it

> in my purse. Sometimes I use spenda, but only if I have not choice

> whatsoever. The ultimate thing to do is to train your taste buds.

> Taste is! acquired and

> I notice that the less salt or sugar or whatever we use, the less we

> want and eventually, we come to dislike it. In my house, because of

> hypertension, we stopped using salt years ago and now we never cook

> with salt and read all packages for the sodium content. When we go to

> a restaurant, we ask for no salt added and if the food tastes salty,

> we return it and never go back to that restaurant again. If we have

> guests, we put the salt & pepper shakers out for their convenience.

>

> BTW, I have great news for everybody. You all know that I plan on

> doing the Marshall Protocol in the fall. Plus you all know that I

> reached remission on A/P after only 18 months of therapy. Well

> yesterday, I had my appointment with my PCP. I spent two hours in her

> office. She was thrilled with all the materials that I brought and

> wants to know more about it and she said yes, she would take me on and

> will talk with Trevor Marshall. She was so open, no eager is the word,

> to learn and absorb new ideas in medicine. When I told her about the

> book I am planning to write, she was so glad and is behind me all the

> way. In fact, she is going to help with the research on autoimmune

> diseases, their causes and their cures. She says, it's time. We do

> need a breakthrough. I finally got an M.D. who is a true ally. Now I

> need to get a likeminded Rheumy on board. I am so happy. I hope Dr.

> Whitman is that Rheumy. If not, I will keep on searching. She loves

> the idea that my

> book will portray your stories, actually our stories, accomplishments,

> disappointments, anger and frustrations in our daily lives and how we

> cope. Keep sending me those stories and photos. For those on any type

> of therapy who have succeeded on to remission. Have before and after

> photos and who would like their story in the book, please submit them

> to my other e-mail address. If you want your story to be told but want

> to remain anonymous, that can be done also. Anybody who has just been

> diagnosed or in the process, please send those stories too. Anybody

> who has had stem cell plant replacement or photophoresis or anyother

> type of treatment whether it was successful or failed, is also a

> welcomed story. We want to present all sides of the story. This book

> will be a true story about real people with real names. I have chosen

> Lynne to be my co-author for the book as she is the angel who

> introduced me to all the materials I needed and today I am in

> remission because of her notes. I saved them all even when I was in

> brain fog and couldn't understand them. Yes, celiac's, I want your

> imput also. People who thought about death or suicide, I want those

> desperate stories too. We need to show the upside and the downside of

> living with these Rheumatic type diseases. We want to say there is

> hope and you are not alone. Hope this e-mail gets around. It will take

> me about two years to get the book written and published, so your

> updates will be important also. I plan to do this while I'm hiding

> from the sun during my therapy on the Marshall Plan. Love and success

> to all of you. BTW, I am already a published writer, but have never

> taken on a project of this magnitude. So, wish me luck, Dolores AKA

> Dodo E:mail martysfolks@...

> <mailto:martysfolks%40hotmail.com>. or if you want them to be private,

> mail them to me: Dolores P. Rosner, 200 E. 5th. St. # 10 C, New York,

> NY 10003.

>

> smoosh215 <smoosh215@... <mailto:smoosh215%40>> wrote:

> Lynne,

>

> You are just plethera of information!!!! So Tri-salts and jojoba

> can be purchased at the grocery store? Any particular brand?

> Thankfully, I don't have wrinkles yet (I'm only 31 and had pretty

> good skin beforehand) but I have noticed dry skin on my nose and

> forehead. I'd like very much to prevent them!!! And I know this

> sound stupid, but I need to eliminate ALL sugar. What about Stevia?

>

> Thanks so much for your help.

>

> Michou ()

>

>

> >

> > > Just wanted to say thanks to Dolores and Lynn for the input. I

> have

> > > noticed such a difference since the celiac diagnosis and dietary

> > > changes. My skin has cleared up almost completely and my dry,

> cracked

> > > fingers are about 80% better. My energy has increased

> tremendously as

> > > well. I still have joint pain and nodules but the swelling has

> gone

> > > down some in my fingers and wrists.

> > >

> > > Thanks to all for all your help and concern.

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

michelle

that's great you are doing better. what dietary changes have you made?

monique

[Guest guest]

OH OH I am in trouble ...a writer and a teacher,YIKES. I never learned

English so forgive my mistakes. Lynne

smoosh215 wrote:

> Dodo,

>

> I like the name too. I have lots of nick names like smoosh in my

> screen name. That evolved from Mish to Mush to Smoosh and even

> Smooshy sometimes. My older sister only calls me smoosh - you can

> imagine the looks when we're out in public. I always thought your

> posts were so well-written. I should've known you were a writer. I

> used to teach writing to 3rd, 4th, & 5th graders before I had my

> kids and went on leave.

>

> I'm fortunate enough to have a great natual food store right down

> the road. I shop there a lot lately and they seem to have

> everything. I'm sure I'll find what I need there.

>

> Congrats with your PCP being so receptive and good luck with the

> book. I'd love to help out any way I can.

>

> Take care,

> Michou

>

>

> > >

> > > > Just wanted to say thanks to Dolores and Lynn for the input. I

> > have

> > > > noticed such a difference since the celiac diagnosis and

> dietary

> > > > changes. My skin has cleared up almost completely and my dry,

> > cracked

> > > > fingers are about 80% better. My energy has increased

> > tremendously as

> > > > well. I still have joint pain and nodules but the swelling has

> > gone

> > > > down some in my fingers and wrists.

> > > >

> > > > Thanks to all for all your help and concern.

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

,

I eliminated wheat/gluten. I asked my Dr. to test for celiac disease

and I got a weak positive. I've come to realize any questions

regarding celiac could be best answered by Lynne. Although she says

she never learned English, she " speaks " /writes perfectly She's

helped me even with my silly questions - she's very knowledgable!

What are you experiencing?

>

> michelle

>

> that's great you are doing better. what dietary changes have you

made?

>

> monique

>

[Guest guest]

hi

thanks for the info. i find just avoiding gluten is not enough. i h ave

to avoid all cooked starches to get relief which is hard. i have RA and

took minocin 200 mg a day for 3 years and did well then got such bad

vertigo and fatigue i had to stop mino and RA came raging back. now am

scared to use drugs since i reacted so badly before. now trying to just

eat meat, fish, vegs, eggs, and good fats. very hard but it definitely

helps. i have met 1 with RA and two with AS who keep their dddddsymptoms

at bay just doing this.

monique

[Guest guest]

Sauve <moniquesauve@...> wrote: hi

thanks for the info. i find just avoiding gluten is not enough. i h ave

to avoid all cooked starches to get relief which is hard. i have RA and

took minocin 200 mg a day for 3 years and did well then got such bad

vertigo and fatigue i had to stop mino and RA came raging back. now am

scared to use drugs since i reacted so badly before. now trying to just

eat meat, fish, vegs, eggs, and good fats. very hard but it definitely

helps. i have met 1 with RA and two with AS who keep their dddddsymptoms

at bay just doing this.

monique

---------------------------------

Be a better Heartthrob. Get better relationship answers from someone who knows.

Answers - Check it out.

[Guest guest]

,

Thank you for the welcome. It is nice to meet someone that was once in PA with

CMT. There is a few that I have come across that live in PA. It is really nice.

The CMT got passed on to me from my Mom. Hope to hear from you soon.

Christa

[Guest guest]

Thank you for your email Gretchen. And thank you for your wonderful support to

this group. I am very impressed with all the helpful information I am getting.

[Guest guest]

Leonie,Kathy I can get your 2 messages answered in one

mail.Leonie,last night I meant to tell you that these disease and takin

immune suppressants and antidepressants can relly damage the hair and

nails.Try taking biotin(a B vitamin) 500mcg along with 1 teaspoon of MSM

a day after stopping the toxic drugs.It will take the best part of a

year to see the changes but it does work especally for those of us who

have a lot of damage ddue to SD. Lynne

leonie cent wrote:

> Thanks

>

> Re: rheumatic diet and RA

> >

> > Hi Leonie;

> > Believe me,AP works very well but you often have to fiddle with the

> > dosage and the different antiiotics.Anything you need to know about food

> > I can tell you.The thing about antibiotics id that they kill all

> > bugs,the good and the bad so that is why you have to take a good

> > probiotic a couple of hours after the antibiotic.Make sure you get the

> > enteric coated ones.Those that are not disolve in the stomack and the

> > acid will kill just about all of them.Only H Pylori and a couple other

> > bugs can survive stomack acid.You need the coated ones that disolve in

> > the small intestine.Even though you take probiotics you can still have a

> > yeast problem so the lower the dose of antibiotic the better.You can

> > usually use more antibiotic if you avoid all sugars that feed yeast.The

> > foods that cause inflamation are grains,other than rice, nightshade

> > vegetables and of course SUGAR the all time trouble maker.

> > I am a scientist by education,archeolog ist/paleoanthrop ologist and

> > because of this I had to take Pre-Med.I found food so interesting that

> > dietetics became my Minor.Many supplements are not of much help.If you

> > get yeast ALA and Milk Thistle in combination can help and so does

> > grapefruit seed extract but since you are on Celebrex grapefuit is not a

> > wise decision as it will intensify many drugs to the point they can be

> > toxic.NAC is good as it is one of the precursors to glutathion which is

> > the master detoxifyers of the body.Take it along with niacinamine. ..not

> > niacin.Vitamin C will help prevent the bruise like marks you can get

> > from minocin if used at high dosage for a long time.Low dose of 100mg 3

> > times a week probably will not cause a problem.If you are on mino for a

> > couple of years it is a good idea to rotate to a different antibiotic.

> > etc,etc,etc. If you have questions,just whistle.I am in remission from

> > SD and am super busy with my orchid greenhouse andpreparing for

> > severalupcoming shows,so I don't get to the computer for more than a few

> > minutes now and then.Eventually I will answer you.Oops,forgot to mention

> > that if you are over 40-45 you are most likely to be low on stomack acid

> > so make sure to take digestive enzymes with your meals to prevent more

> > gut problems.All of us with these crazy diseases have gut issues

> > wheather you know itor not. Lynne

> >

> > leonie cent wrote:

> >

> > > Hi everyone,

> > > I'm going to indulge myself and rabbit on about my situation for a few

> > > minutes... hope you don't mind.

> > >

> > > I know I've mentioned this before, but the reason I got sidetracked

> > > from doing the AP much sooner, was that I went down the road of

> > > thinking I could cure my disease by eliminating certain foods which

> > > were triggering the symptoms (the Leaky Gut thing) and taking

> > > supplements (funnily enough someone on this list told me about the

> > > diet thing, however I was previously a vitamin junkie anyway .

> > > Also, I was paranoid about antibiotics, as I've read that they cause

> > > illness in the first place by mucking up the body's eco system. I

> > > guess the AP can help Leaky Gut by killing the bugs that cause it in

> > > the first place ?

> > >

> > > I'm sure that some foods trigger pain, but I don't know which ones and

> > > couldn't be bothered finding out, since it's too hard to go on

> > > elimination diets etc. I just try to keep things down to a dull roar

> > > by not eating the main offenders like wheat and dairy, but it's hard.

> > > When the pain gets bad, I go on a fast for a few days and that usually

> > > gets me back on track. I also found some natural remedies that are

> > > great anti-inflammatories , and have managed to keep off the drugs

> like

> > > Methotrexate etc, just taking Celebrex. I think all this will hold me

> > > in good stead for taking on the AP in a few weeks.

> > >

> > > Is anyone else on the list into the supplement " thing " ? I guess I

> > > still feel a bit anxious about taking antibiotics, and want to make

> > > sure I do the right things re diet and pro-biotics/ supplements

> etc. Be

> > > good to swap notes with others.

> > >

> > > All the best,

> > >

> > > ~Leonie (Canberra, Australia)

> > > leoniecentbigpond (DOT) com <mailto:leoniecent%40bigpond.com>

> > <mailto:leoniecent% 40bigpond. com>

> > >

> > >

[Guest guest]

>

> Just wanted to say hi, first new to the group. I just read the

> postings and wanted to thank all of u for posting. Though I suffer

1st

> and for most with fibro, and most of u rheumo. You have given me a

> positive step today just for being avail. to read your post. I have

> been in pain 24/7 since Nov. now after another med failed due to side

> effects. I am glad to see so many of u have been sucessfull with MX

as

> I had to d/c that also. I also have arthritis, but it is not rhuemo.

> which I feel for each and every one of you and again thank u for

> posting, I have been going nuts stuck at home day after day now since

> out of work, and don't like whining to anyone.

>

[Guest guest]

Don't ever feel like you are whinning. This group is here to allow us to

discuss or problems, venting is a part og that.I take MTX and have had some

success with it. Nothing seems to help my hands though. Welcome to the group

Heidi M

On Feb 5, 2008 10:07 AM, seescallop <seescallop@...> wrote:

>

> >

> > Just wanted to say hi, first new to the group. I just read the

> > postings and wanted to thank all of u for posting. Though I suffer

> 1st

> > and for most with fibro, and most of u rheumo. You have given me a

> > positive step today just for being avail. to read your post. I have

> > been in pain 24/7 since Nov. now after another med failed due to side

> > effects. I am glad to see so many of u have been sucessfull with MX

> as

> > I had to d/c that also. I also have arthritis, but it is not rhuemo.

> > which I feel for each and every one of you and again thank u for

> > posting, I have been going nuts stuck at home day after day now since

> > out of work, and don't like whining to anyone.

> >

>

>

>

[Guest guest]

Hiya, its Clare, Herts UK. I have BPES and so does my daughter Emy (12) I have found talking about it is good, just arming them with knowledge is a good thing. However we never make a big thing out of it, everyone is individual and has to be happy with that. My daughter doesnt really notice the teasing, but she knows exacly what to do when it happens. The other day we were talking about, older kids hanging around school with cigarettes and other stuff, and I asked her what she would do. She said mum I would do what I always do when there is a group of kids making comments about my eyes, I just keep walking. She wasnt bothered by this as she said its a part of life. I have BPES and have grown up with the comments and stares too, its ok, its how we deal with them that actually makes the difference. So to answer

your question I would also say its up to you, only you and him know your situation. If you feel you need to talk to him, do it, but take the lead from him, and how he feels about it. It could be that he just doesnt notice to much, or he doesnt let it bother him. We dont make a big thing out of having BPES in our house, because it really isnt a big thing to us. I have a 16 year old boy too, (is hasnt got BPES), and I know if there is something he doesnt want to discuss, I kinda find out quite quickly, like he has walked off, leaving me to to talk to myself in the kitchen Love this site. Clare Teale, Herts, UK readjoanread <sweeney_joan@...> wrote: Thanks to all who replied to my post. I appreciate it very much. I'm so pleased to have come across this group. 16 years ago it was very difficult for me to get information about ptosis and bleph. The first doctor we went to told us our son had blepharophimosus (in a waiting room) we had been there for 3 hours with a 1 month old baby-when I asked him to please spell it for me- he said- "Why are you going to look it up" in a very sarcastic manner. Needless to say we found another doctor. It would of been nice to have people who had gone through the process to talk to. I see the pictures of your

little bundles, toddlers, big kids, and it makes me smile-they too are beautiful. You know I have never seen another child, person with bleph..To hear the responses of you with bleph I appreciate your honesty. I have another question, though..we don't talk alot about my son's eyes- to us it is just part of the package that is him. He doesn't really talk about it- only very occasionally...but as a kid do you think he would like to talk more about his feelings around it..but in someway are protecting us from some of the teasing I am sure he has received.

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

You're welcome. The best of luck to you!

Not an MD

> [ ] Thanks

>

> Thanks for doing some research for me. I have been researching myself

> also. I was hoping to hear from someone who has experienced this

> procedure first hand. My surgeon seems very optimistic about recovery

> time, but everything I am finding is that the recovery is going to be

> lengthy. I wish they could do it arthoscopically, but it is in too

> bad of shape. There is much less recovery with the arthoscopic

> procedure, but it is also less thorough. I guess I will just have to

> see how it goes, and I'll fill you all in!

[Guest guest]

Zazzy-

I continue to be impressed and in awe of the warrior

spirit of those who post. I am in the presence of

grace and greatness.

Did the Gleevec cause your congestive heart failure or

was it your enlarged heart? I know that was an issue

for a few people during clincal trials.

CML and breast cancer- I can't even imagine.

My sister you hold on to 54 for as long as you want

to- you deserve some good years to make up for the

bad.

Chi

--- zazzy48 <chanson@...> wrote:

> Thank you to all who welcomed me to the list.

>

> A bit more about me: I am soon to be 55 (I'm hanging

> on to 54 for as

> long as I can); married for 29 years with two sons,

> 27 and 25. I'm

> now mom to my Jack terrier, Gimli; Monkey,

> my 17 year old

> cat; China, my cockatiel; and FISH, my betta.

>

> After years of being blessedly healthy things just

> went downhill. I

> had known about my heart condition (an enlarged

> hearts from bacterial

> endocarditis) for 10 years before needing surgery.

> The bottom fell

> out then. I was in the hospital for 2 weeks prior to

> the surgery

> while they tried to figure out why my white count

> was so high. Since

> testing revealed nothing (a test for leuk was

> included lol) surgery

> was performed. I almost bled out on the operating

> table. I was back

> in the hospital soon after coming home with

> pericarditis (fluid in

> the sac surrounding the hear) and then again for

> pleural effusion,

> which collapsed my lung. This was all in October -

> December. In

> January of 2001 I was diagnosed with CML and in

> February congestive

> heart failure. In April of that year it was the

> breast cancer...

> mastectomy in the following month after a platelet

> transfusion. In

> June I was again hospitalized with a staph infection

> in the wound of

> the mastectomy.

>

> I've had far more sugeries than I care to remember.

> I've also been

> dxed with both rheumatoid and osteoarthritis and

> peripheral

> neuropathy. I've also fought clinical depression for

> most of my life.

>

> I'm doing well now, I garden, mow the lawn, pretty

> much do whatever I

> set my mind to... even things I'm not supposed to do

> LOL. It's the

> arthritis that gets me down the most. I'm decidedly

> not a sit still

> person, who doesn't know when enough is enough.

>

> I tend not to dwell on CML too much. To me it is

> something that I

> have to live with, as with all the other diagnoses.

>

> Again, thanks to all for the warm welcome.

>

> Take care,

> Zazzy

>

>

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Chi,

My CHF was caused from the enlarged heart. It was the size of a softball at the

time of my surgery. They just couldn't wait any longer to do the surgery, so

figured that I just naturally had a high white count. It was afterwards that it

kept inching up and up.

My onc had a tizzy for a while over the CHF and its relation to Gleevec. I had a

high BNP level which indicates CHF. Well guess what doc? I already have CHF. He

insisted on an echo and sent me on my way to the cardio. Cardio said that my BNP

level was no big deal and that he monitors annually. He wasn't too happy with

the onc messing in his business I guess LOL. He wrote a letter to the onc

stating all of the above and we've not mentioned it since. Guess the onc got the

message.

Take care,

Zazzy

Re: [ ] thanks

Zazzy-

I continue to be impressed and in awe of the warrior

spirit of those who post. I am in the presence of

grace and greatness.

Did the Gleevec cause your congestive heart failure or

was it your enlarged heart? I know that was an issue

for a few people during clincal trials.

CML and breast cancer- I can't even imagine.

My sister you hold on to 54 for as long as you want

to- you deserve some good years to make up for the

bad.

Chi

--- zazzy48 <chanson@...> wrote:

> Thank you to all who welcomed me to the list.

>

> A bit more about me: I am soon to be 55 (I'm hanging

> on to 54 for as

> long as I can); married for 29 years with two sons,

> 27 and 25. I'm

> now mom to my Jack terrier, Gimli; Monkey,

> my 17 year old

> cat; China, my cockatiel; and FISH, my betta.

>

> After years of being blessedly healthy things just

> went downhill. I

> had known about my heart condition (an enlarged

> hearts from bacterial

> endocarditis) for 10 years before needing surgery.

> The bottom fell

> out then. I was in the hospital for 2 weeks prior to

> the surgery

> while they tried to figure out why my white count

> was so high. Since

> testing revealed nothing (a test for leuk was

> included lol) surgery

> was performed. I almost bled out on the operating

> table. I was back

> in the hospital soon after coming home with

> pericarditis (fluid in

> the sac surrounding the hear) and then again for

> pleural effusion,

> which collapsed my lung. This was all in October -

> December. In

> January of 2001 I was diagnosed with CML and in

> February congestive

> heart failure. In April of that year it was the

> breast cancer...

> mastectomy in the following month after a platelet

> transfusion. In

> June I was again hospitalized with a staph infection

> in the wound of

> the mastectomy.

>

> I've had far more sugeries than I care to remember.

> I've also been

> dxed with both rheumatoid and osteoarthritis and

> peripheral

> neuropathy. I've also fought clinical depression for

> most of my life.

>

> I'm doing well now, I garden, mow the lawn, pretty

> much do whatever I

> set my mind to... even things I'm not supposed to do

> LOL. It's the

> arthritis that gets me down the most. I'm decidedly

> not a sit still

> person, who doesn't know when enough is enough.

>

> I tend not to dwell on CML too much. To me it is

> something that I

> have to live with, as with all the other diagnoses.

>

> Again, thanks to all for the warm welcome.

>

> Take care,

> Zazzy

>

>

__________________________________________________________

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Hi ,

Welcome to the group. We do have lots of information in the file section of the group.

I am the co-owner of this group, and Joy, who is solving some computer issues now, (so she is off line for a bit), she is the owner, and Marty is the moderator.

Feel free to ask if you had any questions.

Blessings,

Michele

From: <tohidv2@...>Subject: [ ] Thanks Date: Wednesday, August 27, 2008, 1:38 PM

THanks for accepting me to the group. The info looks so interesting. Blessings,

[Guest guest]

Charlotte and group;

WElcome hon. If I miss welcoming someone please forgive me. I don't

remember welcoming you. I heard a doctor tell a colligue in a

workmans comp meeting that there is nothing wrong with me. He fail

to realize that the room was built to carry sound. I felt like

crying.

AT the time I had a back injury and joined a comp group to get

better. When they ask me questions about all my pain they must of

thought I was looking for another claim. I never told them any lies

I just wanted to get better.

I did win my claim for my back sprain. I caught a patient falling

and sprained my back and couldnt work for months. My job fought it

tooth and nail. It was a pain managment group I voluntarry joined

from workmanscomp. Also they said Grin and bare it haaaaaaaaaaa.

Oh I sued the group for how they treated me. I won that too. They

agreed that I may have become teany tiny depresed some being there.

But that I must of come there depressed. BAM the judge hit the

gavel. I said what happened. MY lawyer said I won. I said how. HE

said even if the hurt you that much they are in the wrong. He show

his hand like he was measuring a marble for how much they cause my

depression.

That doctor dont even know I sued for what he said. That broke my

heart. I was going to jump off the top of the atrium from

depression. And that doctor almost pushed me over the edge.

Litterally.

gentle hugs

Clora

> Thanks for the warm welcome everyone.  I guess I don't have enough

experience to know if I am satisfied with this doctor or not.  I

feel very confused, like I am being tossed around.  I did receive a

letter saying that my bloodwork is normal, but he did say that is

not a definitive test.  I can't take the anti inflamatory he gave me

as it causes bad stomach pain.  So I am on no meds at all.  I

definetly do not like the pain management clinic doctor.  He pretty

much told me nothing is wrong and to get someone else to care for my

guide dog if it hurts too much, and that is simply not an option for

me.  I am thinking of calling the rheum. doc back and ask for a

sooner appointment.  I have some questions, but was too overwhelmed

to remember them at the time.  If anyone has any suggestions for