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Kati:

Even with my new heart problem, yes I feel really good. I haven't felt

this good in years. As much as I hate prednisone, I guess I can't live

without it.

-Clyde

kathiruud@... wrote:

>

> Clyde:

>

> That's great! It's wonderful to hear that you are doing better. Do

> you feel better as well? Keep up the good work.

>

> Kathi

>

> eGroups Sponsor

>

>

>

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Sue:

Yes, the cardiologist said he would be doing the procedure along with

his partner. If I were you I'd be watching your BP real close, those

numbers are really high. You may want to ask your Docs why is it so

high.

-Clyde

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Hi Clyde;

I thought I might get my regular doctor to monitor my anemia either

every other month or every third month.

But on the BP - they (the gastro, the onco/hema docs) have noted my BP

but never have 'done' anything. It's like they don't want to even

approach the subject. I've had my pulse clocked at 149 at Swedish

Hospital and ... nothing.

I'm glad to see you will have a doctor right there on the stress test.

Sue AIH

Colorado

C C McPherson wrote:

> Sue:

> Yes, the cardiologist said he would be doing the procedure along with

> his partner. If I were you I'd be watching your BP real close, those

> numbers are really high. You may want to ask your Docs why is it so

> high.

>

> -Clyde

>

>

>

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  • 3 months later...

Trishia Morse wrote:

> I just got back from the dr. He said my tests were

> even better than my last visit. Even my platlets and

> hemoglobin were coming up. My cirrohsis isnt bad

> enough to have to worry about having problems in the

> future, and as long as I keep responding this well I

> wont have to worry about a transplant.

>

> Im so excited...he said I can resume most of my

> activities again.

>

> I just wanted to let everyone know, this is hard to

> keep to myself.

>

> I hope everyone well.

>

> Trish AIH Dec. 00

>

> __________________________________________________

>

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-What good news! What are your labs like? My platelets are " low " but

I don't know if it is really low. Are you on any medication? Debbie

-- In @y..., Trishia Morse <dducksgirl@y...> wrote:

> I just got back from the dr. He said my tests were

> even better than my last visit. Even my platlets and

> hemoglobin were coming up. My cirrohsis isnt bad

> enough to have to worry about having problems in the

> future, and as long as I keep responding this well I

> wont have to worry about a transplant.

>

> Im so excited...he said I can resume most of my

> activities again.

>

> I just wanted to let everyone know, this is hard to

> keep to myself.

>

> I hope everyone well.

>

> Trish AIH Dec. 00

>

> __________________________________________________

>

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There is a wonderful place for information on hepatitis c. goto your browser

and put in

hepatitis central. they have the best info and a wonder ful delphi forum of

people with this.

My labs are always kinda all over the place. Alts and asts are high, protein

high, sometimes glubulin is high,albumin is ok though. indirect bili is high

, direct is normal. having problems with low sodium and co2 and have no clue

as to what causes that. Rite now my alts are around 95, ast 50. I see my

gasrto today, will let you know how it goes.

Myplatelets are around 345, so I gues thats normal.

Ama

[ ] Re: GOOD NEWS

>-What good news! What are your labs like? My platelets are " low " but

>I don't know if it is really low. Are you on any medication? Debbie

>

>-- In @y..., Trishia Morse <dducksgirl@y...> wrote:

>> I just got back from the dr. He said my tests were

>> even better than my last visit. Even my platlets and

>> hemoglobin were coming up. My cirrohsis isnt bad

>> enough to have to worry about having problems in the

>> future, and as long as I keep responding this well I

>> wont have to worry about a transplant.

>>

>> Im so excited...he said I can resume most of my

>> activities again.

>>

>> I just wanted to let everyone know, this is hard to

>> keep to myself.

>>

>> I hope everyone well.

>>

>> Trish AIH Dec. 00

>>

>> __________________________________________________

>>

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  • 3 weeks later...
Guest guest

That IS good news!! How wonderful for Ariyah and you. Prayers and good

thoughts to all of you. Michele

good news

Hi all.

This is Marissa once again - after a long absence. Sorry I haven't written

or read for a while - but things have been pretty hectic for us.

BBBUUUUTTT the great news is - my little Ariyah has been diagnosed into

remission for the moment - after a very hard long year of JRA and all that

goes with it. We are absolutely over the moon. The Doc himself can hardly

believe it - and says that " He up there " is the only one who could have made

it happen. Well we have now got a happy little 2 and a half year old . For

the first time ever - this past month - she has started talking to her

nursery school teacher - suddenly found her appetite, and is bouncing around

like she should. Of course she is still on her medication, and will be for

at least 6 months b4 weaning her off.

Funnily - little things , that other people regard as bad - I am only too

pleased with. Up until now - Ariyah would never wet her nappy or as they

say in the USA , her diaper, at night. She was up so often at night with

pain - that she would - as part of the waking routine - go wee every few

hours. Well - for security - we just left her with a diaper on. A few

weeks ago - she didn't wake as usual - every 2 hrs . In the morning her

diaper was soaked through. Once I had gotten over the initial panic as to

why she hadn't woken as usual - I was delighted that she had slept so deeply

- that she had wet. We mothers of JRA kids have to see the bright side of

every situation - no matter how topsy turvy it seems.

Anyway - must go . Thank you for all your care and support - and I wish you

may be as lucky as we are.

Kind Regards Marissa.

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Guest guest

Marissa-

That's such great news about Ariyah. How immensely relieving it is to have

your little girl pain-free and happy. I hope it never comes back.

Diane

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Guest guest

Great news, Marissa! I hope things continue going as well as they have been of

late. I'm so happy to hear the good news about Ariyah.

Aloha,

Georgina

Hi all.

This is Marissa once again - after a long absence. Sorry I haven't written or

read for a while - but things have been pretty hectic for us.

BBBUUUUTTT the great news is - my little Ariyah has been diagnosed into

remission for the moment - after a very hard long year of JRA and all that goes

with it. We are absolutely over the moon. The Doc himself can hardly believe

it - and says that " He up there " is the only one who could have made it happen.

Well we have now got a happy little 2 and a half year old . For the first time

ever - this past month - she has started talking to her nursery school teacher -

suddenly found her appetite, and is bouncing around like she should. Of course

she is still on her medication, and will be for at least 6 months b4 weaning her

off.

Funnily - little things , that other people regard as bad - I am only too

pleased with. Up until now - Ariyah would never wet her nappy or as they say

in the USA , her diaper, at night. She was up so often at night with pain -

that she would - as part of the waking routine - go wee every few hours. Well -

for security - we just left her with a diaper on. A few weeks ago - she didn't

wake as usual - every 2 hrs . In the morning her diaper was soaked through.

Once I had gotten over the initial panic as to why she hadn't woken as usual - I

was delighted that she had slept so deeply - that she had wet. We mothers of

JRA kids have to see the bright side of every situation - no matter how topsy

turvy it seems.

Anyway - must go . Thank you for all your care and support - and I wish you

may be as lucky as we are.

Kind Regards Marissa.

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Guest guest

Hi Feather,

Me too! I decided on a mixture of golden flax and hemp seeds. Actually, I've

taken to eating hemp seeds a lot by themselves. They are actually 35% protein,

too. I mix them with my Caproil

sometimes, in the hopes that the oil will go farther through my system before

the liver gets it. The golden flax is higher in GLAs, I believe (than regular

flax).

Sure makes a diff for my regularity, anyway.

Jonah :)

feathermist@... wrote:

> Hi Group,

>

> I'm doing better, been regular for a week, thanks to the flax seed

> oil and psyllium husks. I will be starting the cleansing remedies I

> ordered as soon as cleanser#2 gets here. My herbal Dr. says it's ok

> to use the superfood. I'm so happy!

>

> Also:

>

> Happy Spring and Equinox everyone!

> However you celebrate this day, may it be the beginning of wonderful

> things to come.

>

> In Health and Happiness,

>

> Sincerely,

>

> Feather :)

>

>

> Subscription email:

> mailto:bowel cleanse-subscribeegroups

>

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  • 4 months later...
Guest guest

--- dfisher4140@... wrote:

> Hi all,

> I thought I would share my good news with you. I

> got my lab results

> back Friday and they're great! AST 15, ALT 19, WBC

> and RBC normal,

> platelets normal, everything normal except Lyphocyte

> a little low,

> MCH and MPV a little high. Very little. :?) Now

> if I just felt as

> good as my blood work I would be better the

> terrific. My blood work

> is the only thing normal about me! Go figure.

>

> Debbie/FL

>

>

Yes Debbie, very good news about your labs. Maybe

mine will be as good when I go back in aug.

Be well, Ann

__________________________________________________

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Guest guest

Hello Debbie,

Congrats on your labs! How come you don,t feel as good as your labs?

Shouldn,t you feel better? What do the doc.s say about it?

Perhaps it takes some time. Lets hope you feel better soon.

With love Loes

The Netherlands

[ ] Good News

> Hi all,

> I thought I would share my good news with you. I got my lab results

> back Friday and they're great! AST 15, ALT 19, WBC and RBC normal,

> platelets normal, everything normal except Lyphocyte a little low,

> MCH and MPV a little high. Very little. :?) Now if I just felt as

> good as my blood work I would be better the terrific. My blood work

> is the only thing normal about me! Go figure.

>

> Debbie/FL

>

>

>

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Guest guest

Thanks Loes and I'm really glad to hear everything is going well with

your pregnancy. Keep up the good work :?)

Debbie/FL

> Hello Debbie,

>

> Congrats on your labs! How come you don,t feel as good as your labs?

> Shouldn,t you feel better? What do the doc.s say about it?

> Perhaps it takes some time. Lets hope you feel better soon.

>

> With love Loes

> The Netherlands

> [ ] Good News

>

>

> > Hi all,

> > I thought I would share my good news with you. I got my lab

results

> > back Friday and they're great! AST 15, ALT 19, WBC and RBC

normal,

> > platelets normal, everything normal except Lyphocyte a little low,

> > MCH and MPV a little high. Very little. :?) Now if I just felt

as

> > good as my blood work I would be better the terrific. My blood

work

> > is the only thing normal about me! Go figure.

> >

> > Debbie/FL

> >

> >

> >

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  • 4 weeks later...

mimigrits@... wrote: Hi Everyone My enzymes are normal and Doc lowered the pred to 20mg. I am so thankful. I wanted to share my very good news and thank you all for your prayers, info,and support.Im glad to have a place to come to when I need it. Ann AIH - 4/1/01- pred 20mg -imuran 100mg

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Dear Debbie and Ann,

What great news from you two! I loved hearing it.

Sue (Oregon)

AIH 12/96,1/01

[ ] good news

Hi Everyone

My enzymes are normal and Doc lowered the pred to 20mg. I am so

thankful. I wanted to share my very good news and thank you all for

your prayers, info,and support.Im glad to have a place to come to

when I need it.

Ann AIH - 4/1/01- pred 20mg -imuran 100mg

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That's great news!! Really happy for you.

nne

> Hi Everyone

> My enzymes are normal and Doc lowered the pred to 20mg. I am so

> thankful. I wanted to share my very good news and thank you all for

> your prayers, info,and support.Im glad to have a place to come to

> when I need it.

>

>

> Ann AIH - 4/1/01- pred 20mg -imuran 100mg

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  • 2 months later...

Tonya,

Wow, you guys have been through the ringer!!!! Good luck with the new

treatment.

Out of curiousity, what doctor did you see at Texas Children's???

Angie

good news

>My daughter Terah was diagnosed with systemic JRA in June

>of this year.Of course this was devastating to us and

>changed our lives. I always complained and voiced my concerns

>that despite all the medication she has been taking she was

>not improving at all but actually getting worse. I often told

>her doctors that after her doses of MTX and her Enbrel shots

>she would actually get worse but they kept telling me it was

>the disease. After 6 weeks of IV solymedrol treatments 2x a week

>I could no longer agree with her doctor on her treatment.

>She would only feel good for about a day after her treatments

>and then she would be very ill again. She has not hardly been

>able to walk or get off the couch since June and due to the

>solymedrol she has gained alot of weight. She also had a IV port

>surgically placed in her chest so that we would not have to

>find new places for IV's. To make a long painful story short

>I consulted a new doctor who ran some in depth blood tests and

>sent them to some labs in California and this whole time

>she has been suffering from a strep infection that got out of

>control since it has not been treated. Her WBC was 26,000 and due to

>the MTX her hemoglobin was 8.3 I cringe to think what would

>of happened if I would of stayed with her doctor at Texas

>Childrens Hospital. I just can't imagine how so many doctors

>missed a strep infection and diagnosed her with JRA. When she

>first became ill it took them almost 10 days before they tested

>her for strep by a throat culture and she was already on antibiotics

>when they tested her I guess that is why it was negative, but they

>never did a blood test to test for strep. I hope no damage has been

>done for her with all the unnecessary medications but only time will

>tell. I want to thank the group for always being there for us.

>Tonya

>

>

>

>

>For links to websites about arthritis and JRA, visit:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

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We saw Dr and I hate to say it but I did

not like her and we did not get along very well!!

The doctor who referred us to her was DR Schmalsteig at

UTMB and we loved him but he was the one that missed the boat and

started this viscous cycle.

Tonya

________________________________________________________________

Sent via the EV1 webmail system at mail.ev1.net

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Tonya..that is good news..that she doesn't have jra. But i find it strange

that Strep infection gave the same signs of jra. I hope also Terah is

alright from the drugs..good luck

karen(tabitha16..poly)

p.s. I know if somehow Tabitha was misdiagnosed that bad..somebody would pay

for the torture she went through.

From: tonyal@...

Reply-

Subject: good news

Date: Thu, 18 Oct 2001 02:55:38 -0000

My daughter Terah was diagnosed with systemic JRA in June

of this year.Of course this was devastating to us and

changed our lives. I always complained and voiced my concerns

that despite all the medication she has been taking she was

not improving at all but actually getting worse. I often told

her doctors that after her doses of MTX and her Enbrel shots

she would actually get worse but they kept telling me it was

the disease. After 6 weeks of IV solymedrol treatments 2x a week

I could no longer agree with her doctor on her treatment.

She would only feel good for about a day after her treatments

and then she would be very ill again. She has not hardly been

able to walk or get off the couch since June and due to the

solymedrol she has gained alot of weight. She also had a IV port

surgically placed in her chest so that we would not have to

find new places for IV's. To make a long painful story short

I consulted a new doctor who ran some in depth blood tests and

sent them to some labs in California and this whole time

she has been suffering from a strep infection that got out of

control since it has not been treated. Her WBC was 26,000 and due to

the MTX her hemoglobin was 8.3 I cringe to think what would

of happened if I would of stayed with her doctor at Texas

Childrens Hospital. I just can't imagine how so many doctors

missed a strep infection and diagnosed her with JRA. When she

first became ill it took them almost 10 days before they tested

her for strep by a throat culture and she was already on antibiotics

when they tested her I guess that is why it was negative, but they

never did a blood test to test for strep. I hope no damage has been

done for her with all the unnecessary medications but only time will

tell. I want to thank the group for always being there for us.

Tonya

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

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When Robbie was first ill they did several blood cultures - wanting to make sure

that they ruled out an infection (like strep)induced arthritis - initially they

even told me that it was probably a viral arthritis when the blood cultures

revealed nothing - so even some viral illnesses which can't be identified by

labwork can cause arthritic symptoms - but if it was viral it would go away

after the virus runs it's course. Rob's White count exceeded 50,000 for a long

time, and he never had any strep or other infectious disease show up in the

blood cultures - so the white count isn't always an indicator - a high white

count is common in JRA. I am surprised that they didn't do blood cultures in

the beginning - even when they started talking JRA, they kept telling me that we

had to rule out everything else before coming to that conclusion. I hope all

goes well for you and Tonya.

Val

Rob's Mom (4, systemic)

In a message dated Thu, 18 Oct 2001 11:30:32 AM Eastern Daylight Time, " Tonya

Lasagna " <tonyal@...> writes:

> ,

>

> I have learned alot this summer about different diseases

> and infections because I wanted to make sure I would know

> what the doctors were talking about. Strep if left untreated

> can get into the joints and cause arthritis induced by bacteria.

> Our new doctor has told me on several occassions that we need to

> get Terah well and then make sure the doctors are fully aware

> of the mistake they made.

> Tonya

>

> ________________________________________________________________

> Sent via the EV1 webmail system at mail.ev1.net

>

>

>

>

>

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

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When Robbie was first ill they did several blood cultures - wanting to make sure

that they ruled out an infection (like strep)induced arthritis - initially they

even told me that it was probably a viral arthritis when the blood cultures

revealed nothing - so even some viral illnesses which can't be identified by

labwork can cause arthritic symptoms - but if it was viral it would go away

after the virus runs it's course. Rob's White count exceeded 50,000 for a long

time, and he never had any strep or other infectious disease show up in the

blood cultures - so the white count isn't always an indicator - a high white

count is common in JRA. I am surprised that they didn't do blood cultures in

the beginning - even when they started talking JRA, they kept telling me that we

had to rule out everything else before coming to that conclusion. I hope all

goes well for you and Tonya.

Val

Rob's Mom (4, systemic)

In a message dated Thu, 18 Oct 2001 11:30:32 AM Eastern Daylight Time, " Tonya

Lasagna " <tonyal@...> writes:

> ,

>

> I have learned alot this summer about different diseases

> and infections because I wanted to make sure I would know

> what the doctors were talking about. Strep if left untreated

> can get into the joints and cause arthritis induced by bacteria.

> Our new doctor has told me on several occassions that we need to

> get Terah well and then make sure the doctors are fully aware

> of the mistake they made.

> Tonya

>

> ________________________________________________________________

> Sent via the EV1 webmail system at mail.ev1.net

>

>

>

>

>

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

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Sorry Tonya, I meant Terah. I don't know how I sent that twice - yesterday I

sent a message that never went through. Must be operator error! Ha! Take

care.

Val

Rob's Mom (4,systemic)

In a message dated Thu, 18 Oct 2001 12:19:46 PM Eastern Daylight Time,

carneyval@... writes:

> When Robbie was first ill they did several blood cultures - wanting to make

sure that they ruled out an infection (like strep)induced arthritis - initially

they even told me that it was probably a viral arthritis when the blood cultures

revealed nothing - so even some viral illnesses which can't be identified by

labwork can cause arthritic symptoms - but if it was viral it would go away

after the virus runs it's course. Rob's White count exceeded 50,000 for a long

time, and he never had any strep or other infectious disease show up in the

blood cultures - so the white count isn't always an indicator - a high white

count is common in JRA. I am surprised that they didn't do blood cultures in

the beginning - even when they started talking JRA, they kept telling me that we

had to rule out everything else before coming to that conclusion. I hope all

goes well for you and Tonya.

>

> Val

> Rob's Mom (4, systemic)

> In a message dated Thu, 18 Oct 2001 11:30:32 AM Eastern Daylight Time, " Tonya

Lasagna " <tonyal@...> writes:

>

> > ,

> >

> > I have learned alot this summer about different diseases

> > and infections because I wanted to make sure I would know

> > what the doctors were talking about. Strep if left untreated

> > can get into the joints and cause arthritis induced by bacteria.

> > Our new doctor has told me on several occassions that we need to

> > get Terah well and then make sure the doctors are fully aware

> > of the mistake they made.

> > Tonya

> >

> > ________________________________________________________________

> > Sent via the EV1 webmail system at mail.ev1.net

> >

> >

> >

> >

> >

> >

> > For links to websites about arthritis and JRA, visit:

> > http://www.geocities.com/Heartland/Village/8414/Links.html

> >

> >

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