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Helen:

He thinks the cause is the ankylosing spondylitis. Rob had an echo 10

years ago that was completely normal, so this is new.

We'll follow up yearly with an echo, and he is to take antibiotics before

any dental or surgical procedures.

He can hardly walk tonight with his knee. Physical therapy starts on

Wednesday.

I hope that Nick continues to do well.

and Rob 17 Spondy

On Tue, 12 Sep 2006 02:22:06 -0000 " hburger64 " <hburger64@...>

writes:

--,

Nicks echo shows a dilation of the Aortic root, so the opposite of

Robs problem? as a subaortic stenosis is a narrowing of the left

ventricle just below the aortic value ( i just read what it meant)

We will find out if theres been any further dilation Oct/nov when I

set up his yearly follow up.

Did the doctor say anymore about it, follow up, cause etc??

hugs Helen and (9,systemic)

- In , snooksmama@... wrote:

>

> Thanks Helen! We think he's pretty special...

> Finally got the written report from the cardiologist...he didn't

tell me

> that Rob also has the beginnings of subaortic stenosis in addition

to the

> mitral regurgitation. This is commonly seen in older ankylosing

> spondylitis patients.

> Can you tell me again about what they found on Nick's echo? Was it

aortic

> stenosis??

> and Rob 17 Spondy

>

> On Tue, 12 Sep 2006 00:22:34 -0000 " hburger64 " <hburger64@...>

> writes:

> -Those are awesome pictures ....I'm sure you are very happy

with

> them.

>

> hugs Helen and (9,systemic)

>

> -- In , snooksmama@ wrote:

> >

> > There are 2 more of Rob's senior pictures now on the photo page

> (under

> > Schulz' album).

> > Thanks Georgina for approving them!

> > and Rob 17 Spondy

> >

>

>

>

>

>

>

>

>

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Thanks, I doubt that we will be doing anything... The girls will be here as it will be a Sat. so that in itself will be happy for us... (But maybe he'll take me to Loma 's, I really like their Mexican food!:o) )

((( Happy Hugs )))Helen

Congratulations! that is a long time

are you doing anything special to celebrate?

melissa

We will be married 39 years the end of this month! :o)

((( Supporting Hugs )))Helen

"When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate."

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I think both Helen and Steph have highlighted the profound, negative

psychological aspect of treating this disease. It's not like many of us don't

know what to do, but temptation is always around the corner in the shape of a

piece of candy or (for me) a slice of bread.

Personally, I used to go out to eat quite a bit with friends and now that is

almost non-existant. It was more than just food and was also a great social

experience. However, like Steph, I'm trying to take a positive outlook on what

I will be gaining and not what I will be losing. For me it means changing

lifelong habits and not being apologetic about them. In AA one of the ideas to

help people with their sobriety is changing the people, places, and things that

are not supportive of sobriety. I know this is harder with candidiasis because

food is everywhere, but it is something to consider.

Helen, obviously I don't know that much about you or your experiences, but it

looks like you might benefit from some more support to help you cope with all of

the negativity that you are experiencing. Personally, I have been involved in

psychotherapy at times when all that I have on my plate is more than I can

handle alone and it has helped me immensely. I don't know if you have any

interest in that, but it is an option.

This is more than just a physical disease and certainly beyond a minor problem

for most people in this group. Psychological factors play such an important

role in wellness and should also be considered as a part of one's treatment

protocal.

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Steph,

I like what you are saying about the sweets. Just wondering... do you mean

carbs as well? What about fruits?

I often treat myself to cakes made with almond flour and fruits. [sCD

compliant]

[i allow myself to eat according to the SCD (except honey)]

Do you think that this is bad?

I never eat any refined sugar products.

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HI steph,

This is too true. Cheating on this diet is not an option, you cheat

and you can go back to square one. That is my ongoing experience and

when will I learn? perhaps when most of my life has been wasted on

cheating and trying to recover over and over again.

None of these great tasting tantalising foods that remain in the

mouth for only a few seconds is worth long term misery. once

swallowed, they're gone. Then what?

Adam.

> Helen, I understand how you feel about the dieting. But I MUST

TELL

> YOU, that if you do not obtain the mind set that you can no longer

have

> chocolate and all of these sugar and starch type foods for the REST

OF

> YOUR LIFE, then you are now defeated. You MUST make a descision

in

> your heart and know that sugar is POISON for you and everyone

else. It

> is NOT something that we are supposed to be eating even if we are

> healthy and for you it is a much faster poison because of your

> condition.

> Steph

>

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You know Adam, there should be a special group for people who cannot

make the diet. Actually, it would not hurt to address the subject a

bit more on this group as most of us don't have a lot of time to spare.

A support group addressing the psychological issues might save a lot of

people. Had I had that kind of help from the start, instead of some

dummy health care worker that encouraged me to " expand " my diet right

away (which I was anxious to do), I would not probably be in the

situation I am in now with totally resistant candida. There is more

to resisting the foods we should not have, than just trying desperately

to stay away from them. One must consider it a fight for life or a life

and death situation if you have a bad case of this stuff. Sometimes it

is easier to keep the diet if you fix other emotional issues in your

life first, and we all have them. Maybe it is a bad marriage,

loneliness, unhappiness, dire poverty, abusive relationships, or some

bondage we are in to drugs, addiction to pain meds., cigarettes,

alchohol or what ever. All of these things make it more difficult to

beat candida and some of them make it much harder to keep the diet,

especially if your life is such that food is one of your main comforts.

I had thought of starting a telephone support group, but since I don't

have any time from 6 AM until bed except the weekend and sometimes not

that, maybe someone else might want to consider it. I am convinced

people get yeast in the first place, mostly from emotional and spiritual

issues that are not resolved, and then poor diet and stress pulls the

trigger.

Steph

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I must disagree with you. It is true that sugar is very bad for you.

However, if you are healthy, the occasional sweet treat (better if

organic) is not that bad for you. Especially if you buy things that

have been sweetened with raw honey instead of sugar.

Eating fruit (when you are able to) also helps to get rid of the sugar

craving as your body is most likely wanting fruit and not cake and

sweets when it craves something sweet.

All things in moderation, including moderation.

And Helen - you should try not to cheat for your first 6 months.

Thereafter, the occasional cheat will not kill you, although it makes

your disease last longer, of course. But you are only human and beating

yourself up over cheating will only depress you and lead to more

cheating. You are not a sugarholic, just that your taste buds have been

programmed to eat very sweet things for a long time, probably most of

your life. You will relearn tastes that do not include sugar, but if

you have a little bit of chocolate, you will not die.

Keen

HELEN

Helen, I understand how you feel about the dieting. But I MUST TELL

YOU, that if you do not obtain the mind set that you can no longer have

chocolate and all of these sugar and starch type foods for the REST OF

YOUR LIFE, then you are now defeated. You MUST make a descision in

your heart and know that sugar is POISON for you and everyone else. It

is NOT something that we are supposed to be eating even if we are

healthy and for you it is a much faster poison because of your

condition. We taught and trained up that all of the cakes and pies and

pasteries we see when we first walk in the door of a Walmart is OK. IT

IS NOT. There ARE OTHER THINGS in life that we can enjoy other than

sweet foods and not feel sorry for ourselves because we cannot have it.

The easist way out for you is to STOP completely all sugars and starchy

foods that are empty calories and NEVER touch them again. Like myself,

if you have a taste for it, it is like being an alchoholic. You take

that first bite and you are GONE. I don't ever ever touch that stuff

as of three years ago and I am still having a battle with my health, but

I would be DEAD if I had not stopped and changed my diet. Also you will

not crave that stuff anymore after you have been off of it for six

months and longer. You have to break the addiction once and for all and

don't think of it as so bad because once you have done that, you won't

even want it anymore. E-mail me privately and I can tell you where to

go to get more help. Just click onto ectopistes@... I am

going to be gone most of today but will get back to you soon as I can.

I can see you are not going to make it on your own. I have been there.

Steph

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I'm finding that if I take the attitude of cutting down significantly, and then

try to gradually improve on that, then I do a lot better than if think I musnt

have all the things Ive been used to - ever. Becasue I just collapse that way

and binge (a bit like a starvation diet I guess). But as my dentist said to me -

" you've forgotten how bad you were " . She wanted me to write down everything I

had done, and she saw a huge imporvement orally when I last visited her.

Keen Venables <kvenables@...> wrote: I must disagree with

you. It is true that sugar is very bad for you.

However, if you are healthy, the occasional sweet treat (better if

organic) is not that bad for you. Especially if you buy things that

have been sweetened with raw honey instead of sugar.

Eating fruit (when you are able to) also helps to get rid of the sugar

craving as your body is most likely wanting fruit and not cake and

sweets when it craves something sweet.

All things in moderation, including moderation.

And Helen - you should try not to cheat for your first 6 months.

Thereafter, the occasional cheat will not kill you, although it makes

your disease last longer, of course. But you are only human and beating

yourself up over cheating will only depress you and lead to more

cheating. You are not a sugarholic, just that your taste buds have been

programmed to eat very sweet things for a long time, probably most of

your life. You will relearn tastes that do not include sugar, but if

you have a little bit of chocolate, you will not die.

Keen

HELEN

Helen, I understand how you feel about the dieting. But I MUST TELL

YOU, that if you do not obtain the mind set that you can no longer have

chocolate and all of these sugar and starch type foods for the REST OF

YOUR LIFE, then you are now defeated. You MUST make a descision in

your heart and know that sugar is POISON for you and everyone else. It

is NOT something that we are supposed to be eating even if we are

healthy and for you it is a much faster poison because of your

condition. We taught and trained up that all of the cakes and pies and

pasteries we see when we first walk in the door of a Walmart is OK. IT

IS NOT. There ARE OTHER THINGS in life that we can enjoy other than

sweet foods and not feel sorry for ourselves because we cannot have it.

The easist way out for you is to STOP completely all sugars and starchy

foods that are empty calories and NEVER touch them again. Like myself,

if you have a taste for it, it is like being an alchoholic. You take

that first bite and you are GONE. I don't ever ever touch that stuff

as of three years ago and I am still having a battle with my health, but

I would be DEAD if I had not stopped and changed my diet. Also you will

not crave that stuff anymore after you have been off of it for six

months and longer. You have to break the addiction once and for all and

don't think of it as so bad because once you have done that, you won't

even want it anymore. E-mail me privately and I can tell you where to

go to get more help. Just click onto ectopistes@... I am

going to be gone most of today but will get back to you soon as I can.

I can see you are not going to make it on your own. I have been there.

Steph

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-Hi,

Nick has Systemic onset JRA. It is one of the 3 main forms of JRA, it

usually manifests itself with HIGH fevers ( 103+, Nick's got to 105)

and a salmon colored rash over the body. It can also involve the

internal organs such as the lining of the heart, the liver and spleen.

Nick was dx when he was 5 1/2. He is currently doing well, he is on

remicade infusions every 4 weeks ( just had surgery to put in a port-a-

cath as his veins couldnt handle the IV starts anymore) he is also on

Methotrexate shots every Saturday (25mg) relafen 1x a day(750mg) folic

acid 1x a day (2mg) prilosec 1 x a day( 20mg) and multi-vitimins. He

also has rx medications for nausea whch happens periodically.

As well as the systemic Onset JRA, Nick likely has a connective tissue

disorder ( likely Elhers Danlos) the connective tissue disorder has

caused an enlargement of the aortic root in his heart so he is also

under the care of a cardiologist.

More than you wanted to know huh!!!

I take it you are a new family, welcome to the board, although as

everyone else, sad that another child joins our ranks.

hugs Helen and (10, systemic)

-- In , " Posey family " <wearehis@...> wrote:

>

> Helen, in your signature it says , systemic.

> Please explain.

>

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Thanks - have printed them off. Please read my former entry which has offered me

real hope.

nieema <nieema0@...> wrote: Good Health to you Today

Helen, below is a link to some very good resources.

Libby is who you want to find as a road to healing. Tell her that NieeMA spoke

with (her husband) and that is how you come to want to get in touch.

The products are great...the Tega tea has been proven to be great for what is

going on inside of you.

http://www.glnau.com

Peace

PS for all of you that are in the down under, this link might be good for you as

well.

Our Health is Our Responsibility

Take a look & learn what so many are discovering

about our bodies ability to heal it self with Adult Stem Cells.

http://ahealingvillage.stemtechbiz.com

Below, See more videos that answer many of your questions.

http://www.stemenhanceteam.com

http://ahealingvillage.biz

Helping the Body Help It Self...Totally Halal!!!

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Nick came home and collapsed on the sofa with a fever of 101.6 and fell asleep. His temp is now 103.3 :o(

Great start to school.

Thanks for asking, hopefully he's just wore out.Hugs..Helen and (10,systemic)

From: yohnkmom@...Date: Tue, 4 Sep 2007 16:06:47 -0700Subject: Helen

Helen:

I've been thinking about Nick all day. How was the first day?

Sending prayers & happy thoughts,

Beth :-)

Explore the seven wonders of the world Learn more!

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Oh, Helen

I am so sorry to hear this.

WHen is his next Remicade due? Do you think its arthur or an infection?

I'll keep him in prayer tonight...

and Rob 18 Spondy Helen> > > > > > > > Helen: > I've been thinking about Nick all day. How was the first > day? > > > > > > Sending prayers & happy thoughts,> Beth :-)> > > > > > > > > _________________________________________________________________> Explore the seven wonders of the world> http://search.msn.com/results.aspx?q=7+wonders+world & mkt=en-US & form=QBRE

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Helen:

What a way to start school! Poor guy. Let's hope its short lived. Keep us posted and give him a gentle hug from us.

Beth & Hannah, 10, unspec arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Helen

Helen:

I've been thinking about Nick all day. How was the first day?

Sending prayers & happy thoughts,

Beth :-)

Explore the seven wonders of the world Learn more!

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-hey ,

Remicade is this friday. I don't know what to think. I don't think

its an infection as hes not hurting anywhere. hes just so tired and

wiped out. It was very hot today, Nick does not do well in heat. He

said he had a headache( from the heat).

I gave him a tylenol with codine and he is feeling a little better,

his fever is down to 101. He's not eating either which doesnt help.

He even passed on ice cream birthday cake ( Matt is 18 today)

Hopefully after a good nights sleep he will feel better in the AM. So

much for all tonights homework.

hugs Helen and (10,systemic)

-- In , snooksmama@... wrote:

>

> Oh, Helen

> I am so sorry to hear this.

> WHen is his next Remicade due? Do you think its arthur or an

infection?

> I'll keep him in prayer tonight...

> and Rob 18 Spondy

>

> Helen

> >

> >

> >

> >

> >

> >

> >

> > Helen:

> > I've been thinking about Nick all day. How was the first

> > day?

> >

> >

> >

> >

> >

> > Sending prayers & happy thoughts,

> > Beth :-)

> >

> >

> >

> >

> >

> >

> >

> >

> > _________________________________________________________________

> > Explore the seven wonders of the world

> > http://search.msn.com/results.aspx?q=7+wonders+world & mkt=en-

US & form=QBRE

>

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Helen,

I am so sorry that Nick came home feeling so bad after his first day. I hope he is feeling better today!

Val

Rob's Mom (9, systemic)

Helen

Helen:

I've been thinking about Nick all day. How was the first day?

Sending prayers & happy thoughts,

Beth :-)

Explore the seven wonders of the world Learn more!

Email and AIM finally together. You've gotta check out free AOL Mail!

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Helen - I hope today was a little bit better for Nick. I am sorry to hear that he was so fatigued!

Alia and Caroline, ae 5, poly and uveitis

Helen

Helen:

I've been thinking about Nick all day. How was the first day?

Sending prayers & happy thoughts,

Beth :-)

Explore the seven wonders of the world Learn more!

Email and AIM finally together. You've gotta check out free AOL Mail!

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-While doing ok in school, albeit fatigued. He still spiked another

temperature again tonight.

It's a rough start to the school year, his body is just beat this

week. Im praying the remicade on friday will top up his tanks, so to

speak. I am concerned that his Hemagolbin might have dropped even

lower. I think it was around 10.8 last month. I don't think the 90+

degree days we are having are helping either, especially in a school

with no air.

Hopefully tonorrow will be a better day.

hugs Helen and (9,systemic)

-- In , aliaalan@... wrote:

>

>

> Helen - I hope today was a little bit better for Nick. I am sorry

to hear that he was so fatigued!

>

>

>

> Alia and Caroline, ae 5, poly and uveitis

>

>

> Helen

>

>

>

>

>

>

>

>

> Helen:

>

> I've been thinking about Nick all day.? How was the first day?

> ?

>

>

>

>

>

>

> Sending prayers & happy thoughts,

>

> Beth :-)

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Explore the seven wonders of the world Learn more!

>

>

>

>

>

______________________________________________________________________

__

> Email and AIM finally together. You've gotta check out free AOL

Mail! - http://mail.aol.com

>

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God love him, I hope that the remicade kicks arthur's butt this weekend...

and Rob 18 Spondy Helen> > > > > > > > > > > > > > > > > > Helen: > > > > I've been thinking about Nick all day.? How was the first day?> > ?> > > > > > > > > > > > > > Sending prayers & happy thoughts,> > > > Beth :-)> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Explore the seven wonders of the world Learn more! > > > > > > > > > > > ______________________________________________________________________> __> > Email and AIM finally together. You've gotta check out free > AOL > Mail! - http://mail.aol.com> >> > >

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Helen:Thanks for the suggestion. Hubbie has been 'caffeine-free' for years!!

I'm so sorry that Dan is still having chest pain. Has he had a recheck lately?? doesn't even notice the irregular rhythm. However, we have been told if he has any symptoms to get checked right away.

Thanks for your care and concern! and Rob 18 JAS Re: OT Update on my family > -,> > Dan had PAC's a few years ago and was told they are caused by > stress > and caffiene. Since he cut out his caffiene they stopped.> > Now he has PVC's, which he is not suppose to feel, but can, he > keeps > having chest pain and it worries me to death.> > Try having Jessie cut out caffiene totally and see if that helps.> > hugs Helen and (10,systemic)> > -- In , snooksmama@... wrote:> >> > Hello all> > (my husband) had a Holter 24 hour monitor this week, and > also > an echo and stress treadmill, as well as a stress cardiolyte test.> > The doctor finally called us tonight with results.> > is having PAC's, which means the upper parts of his > heart > (the atria) are beating 'out of turn', so to speak. Luckily, he > is > not in a potentially dangerous rhythm called atrial > fibrillation. > However, the doctor did warn us that if he begins having > symptoms of > that he should immediately call the cardiologists' office. He > did say > that it is likely will eventually go into atrial > fibrillation. > This can be dangerous; it can cause strokes. People who are in > atrial > fib are usually placed on blood thinners to make sure that the > erratic beats of the atria do not cause clots to form and thus > cause > a stroke due to emboli.> > What led to all this testing, is that has severe sleep > apnea. > He has been on bi-pap at night for almost a year, but his > sinuses are > continuing to give him trouble and he is having difficulty > wearing > the bipap. He saw an ENT and got scheduled for surgery next > week, but > at a pre-surgical screening, including an EKG, the PAC's were > discovered. Thus, the cardiac workup this week. His mother has a > history of atrial fib, and his brother, , who passed away > at age > 45, died of cardiomyopathy. The first symptoms of this for > was > atrial fib.> > The stress tests had were completely normal, as well as > the > echo. This was very, very good news! So, although the PAC's are > something to keep an eye on, all in all we are quite relieved.> > Now on to Rob. I found out that he could be part time this > semester, which will allow him to drop one class. However, he > must be > full time next semester (or, in his case, by April 25, the night > before his 19th birthday). If he is not full time when he turns > 19, > he will lose his insurance.> > I had gotten a letter from Senator Evan Bayh's office last > week, > and they had Rob sign a HIPPA release form so they could pursue > assistance on his behalf. Rob signed it and we mailed it with a > letter. Yesterday, I got a phone call from Senator Bayh's aide > in > Washington, and he encouraged me that Rob needed to apply for > Medicaid, and that they would personally rush his application > through. He also said that they were interested in getting > us 'relief', and fully understood our plight. THE BEST PART? > They > want to try to introduce a bill/legislation that would require > these > insurers to cover kids with medical issues who are trying to > attend > college. Isn't that awesome! It won't happen in time to help > Rob, but > think of the difference we could make with future kids! > > I would like to know who of you would be willing to sign a > petition > letting Senator Bayh know about our kids and their needs, and > how > many of us support such legislation.> > Another thing that happened: 's cousin is a lawyer. I ran > all > this by him, and he thought of another angle. When/if Rob gets > dropped by insurance, he thinks we may be able to sue the > insurance > company claiming that they discrimated against a person with a > disability! He said it would be a long shot, probably would > involve > years of battle, but what a great victory for teens everywhere > it > would be if it set a precedent? It is an awesome thought!> > So, there you have it, our update. I am waiting to get in > writing > from the insurance company their exact policy so we can know for > sure > if Rob could be less than full time this semester. Of course, we > will > have another go at him going full time in the spring, but > hopefully, > his Medicaid application will go through by then and he will > have > some coverage.> > Thanks for reading this ridiculously long email!> > Thanks for all the support and prayers!!> > and Rob 18 JAS> >> > >

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Helen:

First let me say how sorry I am that Nickynoodle is still suffering. I think

the idea of a laptop is a great idea. We are going to pursue that for Hannah

for middle school. She too uses the alpha smart and does not like that she can

only see three or four lines at a time. She then hooks it up to our home

computer, but can't save it back to the alpha smart after she edits. Anyway, I

hope the new dose helps today.

I would love information on the doctor you mentioned when you have time. We are

not doing anymore til after the holidays. I really want Hannah to have a nice

holiday she has so many special things coming up, I don't want to stress her out

with more appts right how. Traveling to MN is no problem for us, Mike's brother

lives in Burnsville so we've been there numerous times. It's about a 6 hour

drive for us, so not too bad. I think someone who focuses on research would be

a great match.

Glad you were able to check with us, we miss you around here!

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Re: All Done - Beth> > Beth,> Wait a

Minute young lady. Your not going to

give up on anything. All Done > NO WAY girl. You and Hannah are fighters and

your fighting a Battle right > now. The battle of Doctors for a Diagnoses. It is

not a time to give up. > and I was fighting the same Battle many years

ago. It took 8 Yrs to FINALLY > get a Diagnoses. > So you are not going to just

give up. Keep on fighting. > I know right now it seems like the end of the road

but there is light at > the end . seen every Specialist there was and

still no right > Diagnoses. Until she could not walk. THEN something was done. >

I want you to RELAX for a day or 2 and think over what all have said. I > want

you to get into those Lab records and see all the levels. Go over the > Journal

you should have been keeping up with. > With this group you and Hannah will find

a Diagnoses. Hannah is like > a Out of the Box Case. > You and Hannah

are not going to ! give up. Just relax get your thoughts > together. It is a

fight for

Diagnoses. > Fight to get relief for your child. A fight some have to fight

longer than > others. JA is not always a text book case. > I was not going to

stop when was 3 yrs old. Even after she was > diagnosed at 12 yrs old

The battle was only half won. Then it went to Battling > for a Cure to make her

life better to live with this Disease. > Your not done and never will be done

until you find out a Diagnoses. It will > be a thorn in your side. I want you to

be a Thorn in those Dr's side. Until > they find a Diagnoses. > Robbin> >

************ ********* ********* ********Check out AOL's list of 2007's hottest

> products.> (http://money. aol.com/special/ hot-products- 2007?NCID=

aoltop0003000000 0001)> >

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Beth,

Here ya go. Might be worth while dropping him an email. I was very

impressed with him when I met him. I asked a question at our meeting

that he didn't know the answer to and he actually took the time to

find out and email one of the gals at the arthritis foundation to

forward the infomation to me. For such a busy man to take the time to

find my answer and then get the infomation to me impressed me. he is

very aproachable and easy to talk to.

During our meeting Alia was talking about all the medications that

Caroline has failed and he stopped her mid sentence and said Caroline

didn't fail the medications, the medications failed her!! I thought

that was a pretty profound statement.

http://www.med.umn.edu/peds/rheum/faculty/binstadtbryce/home.html

Good luck and hugs Helen and (10,systemic)

>>

> First thank you as always for all the support and listening to my

rant.> > Secondly, let me clear this up. I never, ever intended to

imply that I was giving up on Hannah or finding a diagnosis. That

will never, ever happen! I simply meant I am done with the doctors at

our children's hospital. We will now have to see what is our next

step. I know there are good doctors out there and I know there is a

doctor out there who would jump at the chance to take on a case like

Hannah's. I just have to find him....any ideas??? I'm also curious if

now more than ever a conference is a good idea. Do you get a chance

to speak to doctor's at the conference?> > Hannah is very excited for

opening night tomorrow. Last night was a very long rehearsal and at

one point her ankle wanted to roll. So I guess she'll have to wear

her brace. I can say that the doctor we saw yesterday actually told

us the braces we are great ideas. Usually t! hey tell us they do more

harm than

> good, but he said its good to rest the joints as long as she's not

wearing them 24/7.> > Beth & Hannah, 11, unspecified arthritis;

asthma; gerd; migraines> > Sending prayers & happy thoughts,> Beth :-)

> > > > Re: All Done - Beth> > Beth,> Wait a Minute young

lady. Your not going to

> give up on anything. All Done > NO WAY girl. You and Hannah are

fighters and your fighting a Battle right > now. The battle of

Doctors for a Diagnoses. It is not a time to give up. > and I

was fighting the same Battle many years ago. It took 8 Yrs to FINALLY

> get a Diagnoses. > So you are not going to just give up. Keep on

fighting. > I know right now it seems like the end of the road but

there is light at > the end . seen every Specialist there was

and still no right > Diagnoses. Until she could not walk. THEN

something was done. > I want you to RELAX for a day or 2 and think

over what all have said. I > want you to get into those Lab records

and see all the levels. Go over the > Journal you should have been

keeping up with. > With this group you and Hannah will find a

Diagnoses. Hannah is like > a Out of the Box Case. > You and

Hannah are not going to ! give up. Just relax get your thoughts >

together. It is a fight for

> Diagnoses. > Fight to get relief for your child. A fight some have

to fight longer than > others. JA is not always a text book case. > I

was not going to stop when was 3 yrs old. Even after she was

> diagnosed at 12 yrs old The battle was only half won. Then it went

to Battling > for a Cure to make her life better to live with this

Disease. > Your not done and never will be done until you find out a

Diagnoses. It will > be a thorn in your side. I want you to be a

Thorn in those Dr's side. Until > they find a Diagnoses. > Robbin> >

************ ********* ********* ********Check out AOL's list of

2007's hottest > products.> (http://money. aol.com/special/ hot-

products- 2007?NCID= aoltop0003000000 0001)> > [Non-text portions of

this message have been removed]> > ____________ _________ _________

_________ _________ _________ _> More new features than ever. Check

out the new AOL Mail ! - http://o.aolcdn. com/cdn.webmail.

aol.com/mailtour /aol/en-us/

> text.htm? ncid=aolcmp00050 000000003> > [Non-text portions of this

message have been removed]> > > > > [Non-text portions of this

message have been removed]>[Non- text portions of this message have

been removed]

>

> ____________ _________ _________ _________ _________ _________ _

> Connect and share in new ways with Windows Live.

> http://www.windowsl ive.com/connect. html?ocid= TXT_TAGLM_

Wave2_newways_ 112007

>

>

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Guest guest

Hi,

I thought I'd chime in for a quick second...

First....NICK...feel better! We really hope your new dose of

Remicade works well for you!

Second...Dr. Bindstadt...we know that guy! He's amazing!! He did

his fellowship under Dr. Sundel in Boston...my kiddo was one

of his first I think, jeeze we've known him since 2002! He is very

knowlegable, and such an eager beaver! I loved that he embraced

email...you can (could) shoot him a message any time day/night and

15min later he'd be back to you. He called us to check in from time

to time, he was such a breathe of fresh air in our early diagnosis

days. I've lost track of him since he moved to MN, but even 4 yrs

later when he was in Boston, he would still answer an email from us.

We are in AZ now and travel to Boston every now and again to check

in, but if we ever come to a cross roads in my childs care, I'm sure

we'd get in to see him. Good luck to you Beth & Hannah!

Alice

(Dagny 8 poly)

>>

> First thank you as always for all the support and listening to my

rant.> > Secondly, let me clear this up. I never, ever intended to

imply that I was giving up on Hannah or finding a diagnosis. That

will never, ever happen! I simply meant I am done with the doctors at

our children's hospital. We will now have to see what is our next

step. I know there are good doctors out there and I know there is a

doctor out there who would jump at the chance to take on a case like

Hannah's. I just have to find him....any ideas??? I'm also curious if

now more than ever a conference is a good idea. Do you get a chance

to speak to doctor's at the conference?> > Hannah is very excited for

opening night tomorrow. Last night was a very long rehearsal and at

one point her ankle wanted to roll. So I guess she'll have to wear

her brace. I can say that the doctor we saw yesterday actually told

us the braces we are great ideas. Usually t! hey tell us they do more

harm than

> good, but he said its good to rest the joints as long as she's not

wearing them 24/7.> > Beth & Hannah, 11, unspecified arthritis;

asthma; gerd; migraines> > Sending prayers & happy thoughts,> Beth :-)

> > > > Re: All Done - Beth> > Beth,> Wait a Minute young

lady. Your not going to

> give up on anything. All Done > NO WAY girl. You and Hannah are

fighters and your fighting a Battle right > now. The battle of

Doctors for a Diagnoses. It is not a time to give up. > and I

was fighting the same Battle many years ago. It took 8 Yrs to FINALLY

> get a Diagnoses. > So you are not going to just give up. Keep on

fighting. > I know right now it seems like the end of the road but

there is light at > the end . seen every Specialist there was

and still no right > Diagnoses. Until she could not walk. THEN

something was done. > I want you to RELAX for a day or 2 and think

over what all have said. I > want you to get into those Lab records

and see all the levels. Go over the > Journal you should have been

keeping up with. > With this group you and Hannah will find a

Diagnoses. Hannah is like > a Out of the Box Case. > You and

Hannah are not going to ! give up. Just relax get your thoughts >

together. It is a fight for

> Diagnoses. > Fight to get relief for your child. A fight some have

to fight longer than > others. JA is not always a text book case. > I

was not going to stop when was 3 yrs old. Even after she was

> diagnosed at 12 yrs old The battle was only half won. Then it went

to Battling > for a Cure to make her life better to live with this

Disease. > Your not done and never will be done until you find out a

Diagnoses. It will > be a thorn in your side. I want you to be a

Thorn in those Dr's side. Until > they find a Diagnoses. > Robbin> >

************ ********* ********* ********Check out AOL's list of

2007's hottest > products.> (http://money. aol.com/special/ hot-

products- 2007?NCID= aoltop0003000000 0001)> > [Non-text portions of

this message have been removed]> > ____________ _________ _________

_________ _________ _________ _> More new features than ever. Check

out the new AOL Mail ! - http://o.aolcdn. com/cdn.webmail.

aol.com/mailtour /aol/en-us/

> text.htm? ncid=aolcmp00050 000000003> > [Non-text portions of this

message have been removed]> > > > > [Non-text portions of this

message have been removed]>[Non- text portions of this message have

been removed]

>

> ____________ _________ _________ _________ _________ _________ _

> Connect and share in new ways with Windows Live.

> http://www.windowsl ive.com/connect. html?ocid= TXT_TAGLM_

Wave2_newways_ 112007

>

>

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Guest guest

I'm in Australia. I get it from the health food shop and the pharmacy also sells

it.

 

Helen

From: RenoGin@... <RenoGin@...>

Subject: Helen

candidiasis

Received: Monday, 15 September, 2008, 10:13 AM

Where do you get sage tea-- or do you use sage from the spice department of

the store?

Ginny

************ **Psssst. ..Have you heard the news? There's a new fashion blog,

plus the latest fall trends and hair styles at StyleList.com.

(http://www.stylelis t.com/trends? ncid=aolsty00050 000000014)

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Thanks so much Jacky.. your story is very inspiring.

Luv,

Debby in San , CA

147 pounds lost! 100% of health issues reversed!

Currently studying for Nutrition license and PhD in Psychology

Group: curingcandida/

Website: http://www.naturallythriving.com

----- Original Message ----

> From: " nightjarjacky

>

> I now eat protein and veg but boy do I know it when I slip and eat sugary

> foods. I use Benotite clay regularly and often stick to food on Debby's

list,

> thanks Debby. Gradually my health is coming right up there and that ain't

> bad for now at 50, I feel better than I ever have.

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