Hi Everyone

[Guest guest]

Hi ,

Thank you very much for the nice thoughts and the suggestion about

the hospitals. I really appreciate it.

Love and hugs,

Al

> Sorry to hear that you are still not doing very well, Al. I hope

next week's appointments are fruitful.

>

> If not, perhaps a visit to one of the university hospitals in the

Windy City is in order?

>

>

>

>

> [ ] Hi Everyone

>

> I probably won't be able to catch up on all the posts I missed the

> past few days but wanted to say hi to everyone. Debs, I hope that

you

> are doing better as well as everyone else having a rough time. You

> are all in my thoughts and prayers everyday.

>

> Although my tests results all came back normal, my sleeping is

still

> erratic and I am still losing weight. I see my rheumy again on

Monday

> and a pulmonologist on Thursday. Don't know what is going on in

the

> weight loss department but I have lost about 5-7 more pounds since

> seeing my rheumy a few weeks back. And here I thought prednisone

> would put weight on... Perhaps someone will have an answer.

>

> Take care everyone and I hope you all have as pain free a day as

> possible.

>

> Love and hugs,

>

> Al in IL

>

>

>

[Guest guest]

Hi Kathy,

Sorry to hear that you are having another flare. I hope you get some

relief soon. I saw today. She's wonderful. Hopefully we can

get to the bottom of this. It's the not knowing that's tough.

I hope you are doing better today. Good luck on Thursday.

Love and hugs,

Al

> <PRE>good luck al, i'll be in the building on thursday too. i go

see jennifer.

> hope they can figure out what is happening with you. i think this

last

> bought with altace has sent me into another flare. i did manage to

get out

> for awhile today. i had breakfast with my son. then i fought with

myself

> over my temp rising. i am just so tired of it. then i went to

vegatable stand

> and the dollar store. kathy in il

[Guest guest]

,

I am so happy to hear that did well with the surgery!!! GREAT NEWS!!!!

You can start breathing those sighs of relief!! Thanks for the update- I

love hearing such good news! Hugs and kisses to for being such a

trooper!

' Mom

[Guest guest]

!!!

Thank you SO much for that terrific update. I am glad you are all

back home & did so well. Hugs to you & yours.

Debbie Abby's mom DOCGrad

MI

>

> Hi all... I promised to let you guys know how things went. If you

guys dont

> remember me, im , s mom. was Dx with plagio for 2

years .

> about 2 months ago the Dx turned to Cranio. had surgery Sept.

4 and

> done great!! he only spent 3 days in the hospital! We were very

shocked how

> he bounced back so quick!

> We wanted to thank you guys for everything and wish you all the

best of luck

> with your little ones:-)

> God bless,

>

> mom to 3 years old, Lambdoid surgery 9-4-02

[Guest guest]

,

Thanks so much for giving us an update. It sounds like is such

a brave little man! I'm really happy to hear how great you all did,

and that you're all back in the comfort of your own home! Give

lots of hugs from me!

Niki

Kaylie & Danny (STAr grads)

Phila., PA

>

> Hi all... I promised to let you guys know how things went. If you

guys dont

> remember me, im , s mom. was Dx with plagio for 2

years .

> about 2 months ago the Dx turned to Cranio. had surgery Sept.

4 and

> done great!! he only spent 3 days in the hospital! We were very

shocked how

> he bounced back so quick!

> We wanted to thank you guys for everything and wish you all the

best of luck

> with your little ones:-)

> God bless,

>

> mom to 3 years old, Lambdoid surgery 9-4-02

[Guest guest]

Al,

I hope your doctor finds out what is going on soon. I know it is scary to

be loosing so much weight. Sure your joints won¹t mind the lighter burden,

but your overall health is very important. I hope it ends NOW.

Hugs,

a

> Hi a,

>

> Thanks for the links and writing back. I am sorry to hear you have

> trouble sleeping also. I know how it wears one down after a while. I

> guess when the CT scan is done on my abdomen they can give the spleen

> the once over. Although I know that weight loss happens, it's still

> pretty scary. Being 6-3 and weighing only 166 pounds isn't that

> great. Especially since I don't know where it will end. I'm sure it's

> helping with the wear and tear on my weight bearing joints, but it's

> purely unintentional.

>

> I hope you are having a good Monday.

>

> Love and hugs,

>

> Al

[Guest guest]

,

We certainly do remember you! I think several members put up posts about 's

surgery hoping to get an update. I'm so glad that you got on the board and let

us know. Sounds like did really well - I'm so glad that this experience is

behind you now. I hope you will let us know how he is doing in the weeks to

come.

Best of wishes to you, and your entire family.

Marci (mom to )

Oklahoma

[Guest guest]

Hi a,

Thank you. Have a great day.

Love and hugs,

Al

> Al,

> I hope your doctor finds out what is going on soon. I know it is

scary to

> be loosing so much weight. Sure your joints won¹t mind the lighter

burden,

> but your overall health is very important. I hope it ends NOW.

> Hugs,

> a

>

>

> > Hi a,

> >

> > Thanks for the links and writing back. I am sorry to hear you have

> > trouble sleeping also. I know how it wears one down after a

while. I

> > guess when the CT scan is done on my abdomen they can give the

spleen

> > the once over. Although I know that weight loss happens, it's

still

> > pretty scary. Being 6-3 and weighing only 166 pounds isn't that

> > great. Especially since I don't know where it will end. I'm sure

it's

> > helping with the wear and tear on my weight bearing joints, but

it's

> > purely unintentional.

> >

> > I hope you are having a good Monday.

> >

> > Love and hugs,

> >

> > Al

>

>

>

>

[Guest guest]

<PRE>hang in there neighbor, we are always here for you. please know my thoughts

and prayers are with you. i hope things go well for you and your family.

kathy in il

[Guest guest]

Sorry that you are still searching for answers and worrying a lot, Al.

Though I am happy to hear that your doctors are being so thorough, I'm

sure it's a terrible stress. I'm praying that you will receive a

relatively benign explanation of your problems.

I'm not sure I understand what being half Greek would do to protect you

from Celiac disease! What is the thinking there? Hmmmmm.

[ ] Hi Everyone

> Hi!

>

> I feel like the Prodigal Son lately because I have been so out of

> touch. I hope that everyone is doing well. I think and pray for all

> of you.

>

> I saw my rheumy and GI doctor yesterday and it seems there is a

> chance I have ulcerative colitis or cancer. I have two CTs scheduled

> tomorrow night and a colonoscopy and endoscopy scheduled in two

> weeks. During that time, they are going to biopsy me from top to

> bottom. I guess because I am half Greek the chance of having Celiac

> Disease is almost nil, although they will biopsy my small intestine

> also and check.

>

> I don't know if this has really sunk in yet. I am kind of numb, but

> staying as upbeat as possible. It would be nice to catch a break for

> a change. I guess we all say that though...

>

> If you want to say a few prayers on my behalf, I would appreciate it.

> Your support and love has always meant a lot to me. I'll certainly

> keep you updated on my progress.

>

> All my love,

>

> Al

>

> P.S. Carol, I actually gained a pound since last week.

[Guest guest]

Dear Al,

You certainly have my prayers. I am so sorry to hear this latest news. Try

to look on the positive side though. Many people have survived both of these

conditions and lead healthy normal lives. And just think of all those pretty

young nurses that you are going to meet. How is taking all of this? I

will add her to my prayers too, for she will need tons of strength in the

next few weeks too. If she ever wants to talk, she is more than welcome to

e-mail at any time. It sounds like it was a good idea to postpone our get

together until spring. Hopefully everyone will be feeling much better then.

Keep the faith, Al, and keep us informed. I do worry about you.

Love

Stacey in PA

[Guest guest]

Hi Kathi,

I am sorry to hear that you had to go through this also but glad that

you are okay. Thank you very much for your kind words.

You are absolutely right. There is this surreal aspect to being told

you may have cancer. It's like the brain shuts down for a second. The

heart and mind certainly does flip flops. I am getting to a point

where all I want is an answer and I will go from there. It's the

testing and not knowing stage that is so difficult to deal with.

I hope that you are doing good Kathi. Thanks again for your message.

Much love,

Al

[Guest guest]

Al, I will say several prayers for you. My main one will be for you

to catch a break. This has to be frustrating. They don't think any of

this is linked to the meds or the other illnesses you already have?

Hey, it's a thought (a wish?)! Always in my thoughts and prayers,

Keri

> Hi!

>

> I feel like the Prodigal Son lately because I have been so out of

> touch. I hope that everyone is doing well. I think and pray for all

> of you.

>

> I saw my rheumy and GI doctor yesterday and it seems there is a

> chance I have ulcerative colitis or cancer. I have two CTs

scheduled

> tomorrow night and a colonoscopy and endoscopy scheduled in two

> weeks. During that time, they are going to biopsy me from top to

> bottom. I guess because I am half Greek the chance of having Celiac

> Disease is almost nil, although they will biopsy my small intestine

> also and check.

>

> I don't know if this has really sunk in yet. I am kind of numb, but

> staying as upbeat as possible. It would be nice to catch a break

for

> a change. I guess we all say that though...

>

> If you want to say a few prayers on my behalf, I would appreciate

it.

> Your support and love has always meant a lot to me. I'll certainly

> keep you updated on my progress.

>

> All my love,

>

> Al

>

> P.S. Carol, I actually gained a pound since last week.

[Guest guest]

Welcome back Heidi,

It sounds like you had a lovely

time, I love the sea.

Glad you are feeling much better.

Take care, God bless,

Love,

Joy

Hi! I'm new to this Group.......

Hi There and welcome to the group! Sorry you've been in such pain for so

long. You'll find this a great place to come for information, friendship

and sharing. I'm looking forward to getting to know you better.

Vikki: So sorry you are having such a hard time right now, it's such a pity

that the Remicade is not helping you. Hopefully your Rheumy can come up

with a new action plan when you go to see him. You are in my prayers.

Lynn: All I can say about your insurance company is Aaaarrrrrrggggg!! Gosh

these people are absolute vermin! Give a girl a break! I'm so glad that

you are not letting it get to you - please try and take it easy you really

don't need the extra stress. You are in my prayers!

_________________________________________________________________

The new MSN 8: smart spam protection and 2 months FREE*

http://join.msn.com/?page=features/junkmail

[Guest guest]

Thank You Heidi. I just found out last night that in June my son and his wife

are having another little girl. They already have one. So in March we are

getting a little boy, in June a girl. I am so happy your pregnancy is going

well, enjoy this time. I had six children and it was the nicest time in my

life. Enjoy you trip.,

Lynn

Heidi Steppe-Hoareau wrote:

> Hi there everyone!

>

> I went to see my GP today for my monthly check up, she’s really sweet and is

> the one following up while my Rheumy is on maternity leave. She has a

> stethoscope with a microphone and we listened to the baby’s heart (just for

> fun!) it was so amazing, every time I hear it I get tears in my eyes. It’s

> fantastic how Arthur is just disappearing, I’ve dropped to only 2.5mg’s of

> prednisone and so far have dropped 0.5mg’s about every 4 weeks. It’s quiet

> weird, every time I drop I’ll be a bit stiff and sore in my hands and wrists

> in the mornings for a week and then whoosh – it just goes away and I feel

> like someone without RA – very cool! My doctor says the week’s adjustment

> is my body taking over and making up the deficit – has anyone else had a

> similar experience (when pregnant or not) – either way I’m not complaining

> lol!

>

> I’m still falling a little behind on my mail, things have been hectic at

> work and I’m preparing for my trip – I’m leaving on Friday!!! Whooopppeee!!!

> I’m so excited!! I’ve bunched some quick replies below but am trying to

> catch up on some of the longer ones so please bear with me.

>

> Sending you all ((((((((((Giant hugs))))))))))))) from me and the tadpole!

> Love,

> Heidi

>

> Lynn: Sorry you are having such a hard time right now with your injuries

> and insurance. You are in my prayers.

>

> Kathe: Hope that you can continue the Enbrel somehow, it would be such a

> pity if you had to stop when you’ve had such good results from it. None of

> the new meds are feasible for us here in Mauritius (even in South Africa for

> that matter), firstly they are unavailable and secondly the costs would be

> extraordinary for almost everyone with our dismal exchange rates – a years

> supply would cost more than a lot of people earn in a year (and that

> includes people with decent salaries lol!). I think it’s such a pity that

> those who could have access to these “miracle meds” are denied them. I

> cannot contemplate how the drug companies can make them so expensive, I

> realize theres R & D costs but really! You are in my prayers.

>

> Jeanine: Good luck with the Humria – let us know how it goes!

>

> & a: Thank’s so much for the articles on corticosteroids – I found

> them really interesting

>

> : I would think that the jitters at the dose of pred you’re on are

> normal. I’m still really freaked out at the dosage of pred you’re taking –

> maybe you should get a second opinion. Sorry for being so nosy but it

> really doesn’t sound right to me and I’m worried for you. I’ve been on Pred

> for nearly 2 years so do have some experience on the drug.

>

> L – Welcome to the group – I look forward to getting to know you.

>

> – Hi there, I hope that you find a good doctor for and that it

> turns out to be something other than RA. You must be really worried. Hugs

> and prayers!

>

> Judi: Prayers are being said for little , it must be very hard for

> your friend.

>

> Kathy: Your friend is in my prayers! (And so are you!!)

>

> ((((((((((((((((((((((Stacey))))))))))))))))))) Happy Birthday to you and

> Wyatt!! I’m so sorry you are having so much pain at the moment, but very

> glad that your Remicade infusion is offering you some relief. Sending you

> some special birthday (((((((((hugs!!!!!!!!)))))))))))

>

> Jane: Good luck with the Enbrel, I’m sure you’ll get a lot of feedback from

> the group. Don’t feel bad, I’m sure that Kathe will be happy for you and we

> are all here to listen to your questions whenever you want to ask anything.

>

> Anne: I’m so glad that your Rheumy doesn’t think you have RA but you must

> be so stressed and worried not knowing what’s causing your health problems.

> You are in my prayers, I hope that you find a diagnosis soon so that you can

> start on a treatment plan.

>

> Betsy: That’s great, I’ll be praying that your appointment goes well and

> that you get some relief from the treatment plan soon.

>

> Jan: I hope you are feeling better, I’ve missed you around here. I’m so

> sorry to hear about your job and your daughters accident – thank goodness

> her and the baby are alright. It’s great that you are keeping such a

> positive attitude about the changes in your company though.

> ((((((((((((Hugs)))))))))))))))

>

> Moving in: Hi there and Welcome to the group! I think it’s wonderful that

> you are trying to understand your partners disease and are willing to

> support her.

>

> Subject: NewBee here. RA/Lupus: Hi there and welcome to the group!

>

> _________________________________________________________________

> Protect your PC - get McAfee.com VirusScan Online

> http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

>

>

[Guest guest]

Good morning everyone....

Heidi... your rheumy's on maternity leave??? So is mine!!! ROFL

I wonder if we have the same one... LOL

Pami

-- NewBee here. RA/Lupus: Hi there and welcome to the group!

_________________________________________________________________

Protect your PC - get McAfee.com VirusScan Online

http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

[Guest guest]

<PRE>hang in there heidi and enjoy your trip!!! kathy in il

[Guest guest]

Welcome. You're in the right place at the right time, doing the right stuff. Easy does it, but do it.

Hugs

Suz

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

From: ddrmrkt

Sent: Tuesday, July 29, 2003 1:56 PM

Subject: [ ] Hi everyone

I'm new to the group. I'm an American, from the Midwest, and I've been overweight for my bodyframe size for about 10 years. Last year I started counting calories, and at the same time I started to read Dr. Walford's books. I'm 32 now, and trying to set myself down a long lifetime path of CRON eating. I'm 69.5" tall, and I currently weigh 160 lbs. My short-term goal is to get to 145, and work from there to see how much leaner I can tolerate. I'm currently eating 2200 calories daily, in an effort to work myself down slowly.I look forward to sharing & learning with you all.

[Guest guest]

,

I too felt as if I were at the end of my rope up until 6 months ago when I found this site. I was tossed around to 10 different Drs. and not one of them attributed any of my illness to the implants. When I asked some of my Drs. if it could be the implants they all assured me it was not them! Well, thank God I didn't listen to them and I went ahead and had them out. No wonder I am sick and have been sick my implants both had faulty valves and colonies of micro organisms! Let me know how your Dr. appt is on thursday. I hope you consider having the implants removed.Any questions we are here.

Barbara

[Guest guest]

-

I am so sorry that you are having all of these symptoms. I will keep

you in my prayers that you will be led to the way for you to get the

implants out and get better. Even while they are in, there are detox

protocols you can be doing to try and improve your health. You very

likely have problems with candida as most of us do. There is alot of

information on this site and www.curezone.com about getting candida

under control. There are herbal supplements that you can take to help

kill off other pathogens like olive leaf extract and oil of oregano to

name a couple. There is alot of good info on diet and health through

Dr. Mercola and his website. Also, the book The Maker's Diet by

Jordin Rubin has alot of good info on how to eat to help yourself get

better from autoimmune conditions---which most of us have from the

implants. Most of us have to address these issues even after explant,

so while you are getting that part figured out, you can still be

working on getting better. This is a great site and you will find all

kinds of support here. Take care and God bless.

Hugs,kathy

-- In , draw4u2day@y... wrote:

> Hello,

>

> I'm not sure if you remember me but my name is and I came

> here about 6 months ago. I am scheduled to see Dr. Feng at the end

> of this month. I have shooting pain down my arm, shortness of

> breath, swallowing problems, and skin boils. I have been ignored

by

> my doctors who attribute my problems to depression.

>

> I am praying and begging God for deliverance from this nightmare.

I

> don't really have the money to even go to Cleveland as I am on SSI

> and my income is so limited. People tell me to go get a job and it

> is all I can do to do the basics like bathing, eating, and getting

in

> a small walk everyday.

>

> I am blessed to have a place like this and I ask that you please

pray

> for me so that I may get wisdom and confirmation from God as to

what

> I need to do in my situation.

>

> I am currently taking a homeopathic Staph remedy as I know there is

a

> Staph infection around my implant. My allergies and asthma are

> worsening and I know it isn't because there is more dust and pollen

> in my house. I have been staying with my Mom because I am so sick

> and God bless her she is so supportive.

>

> Thank you for listening to me.

> -

[Guest guest]

Hi .

Welcome back. I e-mailed you.

-Mariedraw4u2day@... wrote:

Hello,I'm not sure if you remember me but my name is and I came here about 6 months ago. I am scheduled to see Dr. Feng at the end of this month. I have shooting pain down my arm, shortness of breath, swallowing problems, and skin boils. I have been ignored by my doctors who attribute my problems to depression.I am praying and begging God for deliverance from this nightmare. I don't really have the money to even go to Cleveland as I am on SSI and my income is so limited. People tell me to go get a job and it is all I can do to do the basics like bathing, eating, and getting in a small walk everyday.I am blessed to have a place like this and I ask that you please pray for me so that I may get wisdom and confirmation from God as to what I need to do in my situation.I am currently taking a homeopathic Staph

remedy as I know there is a Staph infection around my implant. My allergies and asthma are worsening and I know it isn't because there is more dust and pollen in my house. I have been staying with my Mom because I am so sick and God bless her she is so supportive.Thank you for listening to me.-

[Guest guest]

Dear I prayed that God deliver you and teach you the ways to heal yourself and he will. It's wrong for the medical communicty to treat you this way. Hang in there, abide in His will and He will deliver you. Love, Jane Doe <oceanlilly_csu@...> wrote:

Hi .

Welcome back. I e-mailed you.

-Mariedraw4u2day@... wrote:

Hello,I'm not sure if you remember me but my name is and I came here about 6 months ago. I am scheduled to see Dr. Feng at the end of this month. I have shooting pain down my arm, shortness of breath, swallowing problems, and skin boils. I have been ignored by my doctors who attribute my problems to depression.I am praying and begging God for deliverance from this nightmare. I don't really have the money to even go to Cleveland as I am on SSI and my income is so limited. People tell me to go get a job and it is all I can do to do the basics like bathing, eating, and getting in a small walk everyday.I am blessed to have a place like this and I ask that you please pray for me so that I may get wisdom and confirmation from God as to what I need to do in my situation.I am currently taking a homeopathic Staph

remedy as I know there is a Staph infection around my implant. My allergies and asthma are worsening and I know it isn't because there is more dust and pollen in my house. I have been staying with my Mom because I am so sick and God bless her she is so supportive.Thank you for listening to me.-

[Guest guest]

Amy,

Sorry you have been so sick.

My husband, , has not had an increase in kidney stones since diagnosis. He

did have a terrible kidney stone incident several years before being diagnosed

and had to have it removed through surgery.

Hope you feel better soon!

Dana, wife to , dx 4/4/03

" Amy B. " <aimesc31@...> wrote:

Hi Everyone! I haven't posted in a while, I've been working and sick

sick sick at the same time. I can't afford to lose my job so I had to

work till I couldn't. I was wondering if anyone has had an increase

in the production of Kidney stones since being diagnosed with CML or

starting Gleevec. I have had three <not fun> since December, and was

in the hospital Friday and Saturday with the last one. My urologist

said that sometimes people with Leukemias produce kidney stones due to

a change in their body chemistry. Hadn't heard that before. If

anyone might be able to shed some light on this I would be grateful.

I will try to be more active in the group if I can stay feeling well.

I'm glad everyone is here and pray for each of you and your families

daily.

Amy B

cml 4/03

gleevec 5/03

CCR 9/03

6/04 PCR 0.096

[Guest guest]

Hi Amy,

I can't say that I've ever heard a connection with Kidney stones and

leukemia but that of course doesn't mean that it isn't there.

Many years ago my mother had a problem with kidney stones and her

doctor told her that it was because she was taking in too much

calcium. Are you taking loads of calcium by chance? It can either

be in diet or supplements.

Hope you find some relief soon,

Tracey

>

> Hi Everyone! I haven't posted in a while, I've been working and

sick

> sick sick at the same time. I can't afford to lose my job so I

had to

> work till I couldn't. I was wondering if anyone has had an

increase

> in the production of Kidney stones since being diagnosed with CML

or

> starting Gleevec. I have had three <not fun> since December, and

was

> in the hospital Friday and Saturday with the last one. My

urologist

> said that sometimes people with Leukemias produce kidney stones

due to

> a change in their body chemistry. Hadn't heard that before. If

> anyone might be able to shed some light on this I would be

grateful.

> I will try to be more active in the group if I can stay feeling

well.

> I'm glad everyone is here and pray for each of you and your

families

> daily.

>

> Amy B

> cml 4/03

> gleevec 5/03

> CCR 9/03

> 6/04 PCR 0.096

[Guest guest]

Hi Amy,

I was away on a retreat all weekend and I am only getting around to

reading the posts here today.

Sorry you've had kidney stones, I can commiserate with you having

gone through an episode about a month ago - quite painful and no fun.

My guess is that you probably have increased your calcium, as I have,

and we are some of the " lucky " individuals prone to stones.

Hope you are able to get a stone analysis as suggested as you

are having such frequent bouts.

Please keep us posted and warm healing thoughts for your recovery.

Love,

Cheryl

I was wondering if anyone has had an increase

> in the production of Kidney stones since being diagnosed with CML

or

> starting Gleevec. I have had three <not fun> since December, and

was

> in the hospital Friday and Saturday with the last one. My

urologist

> said that sometimes people with Leukemias produce kidney stones due

to

> a change in their body chemistry. Hadn't heard that before. If

> anyone might be able to shed some light on this I would be

grateful.

> I will try to be more active in the group if I can stay feeling

well.

> I'm glad everyone is here and pray for each of you and your

families

> daily.

>

> Amy B

> cml 4/03

> gleevec 5/03

> CCR 9/03

> 6/04 PCR 0.096