Good News!

[Guest guest]

Yipppeeee Franz!!!!! Way to go.

I'm catching up with some email, sorry this is late.

I had been feeling so good lately, yesterday was tired again and it

frustrated me to no end! I am so impatient, I know. I guess the best I can

hope for is more good days than bad days

Keep up the good work Franz! How ya feeling?

/ alley

Grand Prairie, Tx, USA, Earth

" To endure is greater than to dare; to tire out hostile fortune;

to be daunted by no difficulty; to keep heart when all have lost it -- who

can say this is not greatness? "

~ Makepeace Thackeray ~ (1811 - 1863)

http://communities.msn.com/TheMagog

http://clubs./clubs/writingandpublishing

http://www.alleypat.com

http://community.dallasnews.com/dmn/dfwliver

http://alleypat.livejournal.com

[Guest guest]

Yipppeeee Franz!!!!! Way to go.

I'm catching up with some email, sorry this is late.

I had been feeling so good lately, yesterday was tired again and it

frustrated me to no end! I am so impatient, I know. I guess the best I can

hope for is more good days than bad days

Keep up the good work Franz! How ya feeling?

/ alley

Grand Prairie, Tx, USA, Earth

" To endure is greater than to dare; to tire out hostile fortune;

to be daunted by no difficulty; to keep heart when all have lost it -- who

can say this is not greatness? "

~ Makepeace Thackeray ~ (1811 - 1863)

http://communities.msn.com/TheMagog

http://clubs./clubs/writingandpublishing

http://www.alleypat.com

http://community.dallasnews.com/dmn/dfwliver

http://alleypat.livejournal.com

[Guest guest]

Yipppeeee Franz!!!!! Way to go.

I'm catching up with some email, sorry this is late.

I had been feeling so good lately, yesterday was tired again and it

frustrated me to no end! I am so impatient, I know. I guess the best I can

hope for is more good days than bad days

Keep up the good work Franz! How ya feeling?

/ alley

Grand Prairie, Tx, USA, Earth

" To endure is greater than to dare; to tire out hostile fortune;

to be daunted by no difficulty; to keep heart when all have lost it -- who

can say this is not greatness? "

~ Makepeace Thackeray ~ (1811 - 1863)

http://communities.msn.com/TheMagog

http://clubs./clubs/writingandpublishing

http://www.alleypat.com

http://community.dallasnews.com/dmn/dfwliver

http://alleypat.livejournal.com

[Guest guest]

Well it is a long haul from when I started antibiotics in 1997 for the Scleroderma.Some of you may remember I was active with the group when I was so sick and needed so much support. Of late, I have been lurking, but know that there are others who are bringing so much good support to the newcomers.

Well, I just got the good news: now my ANA is down to 40! It has never been so low. It has taken 4 years for my ANA to reach this point. Those creepy little antibodies are virtually gone. HooRay! I am certain the antibiotics has helped. (I also get gamma globulin for my immune deficiency and photopheresis. Neither is immune suppressing). I think it is time to update my story on the www.rheumatic board... I will send you an update soon.

Ethel, I hope you read this. You sent me the list of docs, and I chose the one who had experience using antibiotics. I thank you again for sending me to such a wonderful doctor!

I thank all of you who has helped me along the way, and encourage you newcomers to not give up the antibiotics too quickly. You may need other treatments as well, but do shun those that hurt your immune system.

Scleroderma is a difficult disease, but not incurable.

Take care of yourself, & be well.

http://hometown.aol.com//lindartc/index.htm

[Guest guest]

Dear ,

So nice to hear she's doing so good--hope it continues!

and Kate (6 1/2--poly)

[Guest guest]

Hi :

It's great Halie is responding so well already. I just wanted to mention,

although I think I was the one who mentioned early use of DMARD's is

supposed to head off later problems... Since Halie is already responding so

well, maybe they really aren't necessary. When Mickey was finally diagnosed,

she was put only on Naprosyn for 3 months... and did not improve at all.

Started having stomach problems, from the naprosyn. So then they added oral

prednisone, switched anti-inflammatories, and added cytotec to protect her

stomach. She did improve somewhat with the addition of prednisone, but the

biggest difference at that time was from steroid injections directly into

her knees and ankles - which were the main affected joints at that time.

Still - she was on really high doses of prednisone, and it barely kept the

symptoms under control. She still had painful stiffness every morning, still

had fevers every evening, still had little energy or zest for life. She

would have better periods of time, but was never really pain or stiffness

free.

So, I guess what I'm saying is, if the stuff Halie is on is giving her such

complete control of symptoms, I'd trust your doc's opinion on it for now.

Why poison your child with methotrexate if it isn't serving a clear purpose?

Just my thoughts...

Lynn

From: mbvanert@...

Reply-

Date: Sat, 01 Sep 2001 02:46:14 -0000

Subject: good news!

Hi everyone!

I have been " gone " for awhile due to computer probs; it only works

when it feels the need and I've just been too busy these days to take

care of it. Hoping to catch up on my emails this week - a lot going

on with school starting and still many Dr.s appt.s for Halie. We

found out last week that her Xrays showed no bone damage whatsoever

and her Rheumy believes that she is already improving remarkably

well. Yeah!! We have been experimenting with her doses of Salsalate

as it tends to upset her tummy and kill her appetite, but now she is

taking just one tablet (although made the size to treat an elephant!)

twice a day. She seems to be responding to this, along with daily

physical therapy exercise, really well - no complaints of foot or

neck pain. At this point, it does'nt look like we will need to

progress into DMARDs, although I still wonder if it is'nt better to

treat really aggressively now instead of later??

Just wanted to share some good news and let you all know that you

are in my prayers. Keeping fingers crossed, but thankful for small

miracles!!

God Bless -

, mom to Halie, 6, Poly dxd 8/1/01

[Guest guest]

,

That's great news. Glad to hear Halie is doing well!

Teri

[Guest guest]

BRENDA

GREAT NEWS TO HEAR HALIE IS DOING BETTER! KEEP UP THE GOOD WORK HALIE! THAT

IS A PLUS SHE WILL DO HER EXERCISES..THAT IS ONE THING TABITHA HAS ALWAYS

BEEN LAZY ON..EVEN NOW AT THE AGE OF SIXTEEN. BUT SHE DOES MOVE AROUND MORE

THAN SHE USE TO. YALL ARE IN OUR THOUGHTS AND PRAYERS!

KAREN(TABITHAS MOM..POLY JRA)

From: mbvanert@...

Reply-

Subject: good news!

Date: Sat, 01 Sep 2001 02:46:14 -0000

Hi everyone!

I have been " gone " for awhile due to computer probs; it only works

when it feels the need and I've just been too busy these days to take

care of it. Hoping to catch up on my emails this week - a lot going

on with school starting and still many Dr.s appt.s for Halie. We

found out last week that her Xrays showed no bone damage whatsoever

and her Rheumy believes that she is already improving remarkably

well. Yeah!! We have been experimenting with her doses of Salsalate

as it tends to upset her tummy and kill her appetite, but now she is

taking just one tablet (although made the size to treat an elephant!)

twice a day. She seems to be responding to this, along with daily

physical therapy exercise, really well - no complaints of foot or

neck pain. At this point, it does'nt look like we will need to

progress into DMARDs, although I still wonder if it is'nt better to

treat really aggressively now instead of later??

Just wanted to share some good news and let you all know that you

are in my prayers. Keeping fingers crossed, but thankful for small

miracles!!

God Bless -

, mom to Halie, 6, Poly dxd 8/1/01

_________________________________________________________________

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

[Guest guest]

Hi ,

So good to hear that Halie is continuing to do well. Thanks for sharing

the news I'd also tend to agree with what Lynn said. If your daughter

is getting good control of symptoms with her current meds, might not be

a need to step up to anything stronger.

Take Care,

Georgina

mbvanert@... wrote:

>

> Hi everyone!

> I have been " gone " for awhile due to computer probs; it only works

> when it feels the need and I've just been too busy these days to take

> care of it. Hoping to catch up on my emails this week - a lot going

> on with school starting and still many Dr.s appt.s for Halie. We

> found out last week that her Xrays showed no bone damage whatsoever

> and her Rheumy believes that she is already improving remarkably

> well. Yeah!! We have been experimenting with her doses of Salsalate

> as it tends to upset her tummy and kill her appetite, but now she is

> taking just one tablet (although made the size to treat an elephant!)

> twice a day. She seems to be responding to this, along with daily

> physical therapy exercise, really well - no complaints of foot or

> neck pain. At this point, it does'nt look like we will need to

> progress into DMARDs, although I still wonder if it is'nt better to

> treat really aggressively now instead of later??

> Just wanted to share some good news and let you all know that you

> are in my prayers. Keeping fingers crossed, but thankful for small

> miracles!!

> God Bless -

> , mom to Halie, 6, Poly dxd 8/1/01

[Guest guest]

Dear Lis:

That was a beautiful story to hear about your son. Nobody will ever know

just how wonderful it is to see your son interact with other children like

that -- that's the best present in the world!

Kris

[Guest guest]

> I just have to share this! My 6 yr old has always been overly shy,

never leaving my side, even at the library. Anytime I tell him to go

somewhere, he insists I come, too. Even with friends, he's been much

more of an observer than a participant, perhaps following the group

around, but not really relating to others in the group. He is not

diagnosed autistic, but when I filled out the ATEC questionnaire on

him, he scored a 60 (mostly due to his violent and aggressive

behavior). He's been cow milk free most of his life due to asthma,

and went to a " reduced " gluten diet when his brother needed it since

last January. He's been gfcf since September, when we glutened him up

for the peptide testing and we saw his awful and out-of-control

behaviors (which we had assumed he had simply grown out of) return.

>

> Yesterday, at the library, he started out as usual, wanting me to

be right by his side as he looked at the books. I had to keep leaving

him, because I had to keep and eye on our 15 mo. old, who was

exploring. Eventually, I noticed in a group of little girls, all

his age or thereabouts, playing and laughing. He was regaling them

with imitations of the moles (who speak with a Cockney accent) of the

Redwall series dad is reading with the boys. The children all played

hide-n-seek in the stacks, or sat on the pony-shaped pillows joking,

or gathered around the puzzle table . . . with keeping up with

the fun and often being the center of attention.

>

> I hated calling him to leave, but we had to go do our laundry. It

was so beautiful watching him be so social with these girls he'd

never met before. I'm really hopeful this sort of friendly

socialization ability continues. He's the child I signed up for

gymnastics because it is an individual sport, and I figured he was

not going to be able to handle participating on a team, like soccer.

>

> Lis

Dear Liz,

What a lovely story! To socialise is something I dream of for my

daughter Rose. Is taking enzymes?

Kind regards

Debbie (UK)

[Guest guest]

By the way I also buy from Sainsbury the Orgran Corn Crispsbread.

They are lovely with houmous.

[Guest guest]

Ghislaine

What type of test did your Nutritionist perform on you 3

times? I take it this was a test that results could be

received immediately?

Lilly

enailish wrote:

> I got back from the Nutritionist yesterday and I was

> beaming .

> After 8 months on a very strict Candida diet: the result

> showed that

> I have defeated the beast!!! We took the tests 3 times: No

> sign of

> the Candida, no food intolerances detected, no more wheat

> intolerance, no more lactose intolerance. Over the last 2

> months all

> my symptoms had disapeared and I was feling great so I was

> expecting

> my level of Candida to have gone down a lot. I am happy.

> So now I can

> stop the anti-fungals. I am continuing with the diet and

> supplement

> to make sure that the Candida does not resurfaces. I am

> still

> planning on taking Pau D'arco tea and Aloe vera from time

> to time in

> order to make sure that it does not come back. What a

> relief!

>

>

>

> Ghislaine

>

[Guest guest]

What antifungals were you taking besides doing the diet?? Jean

________________________________________________________________

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[Guest guest]

He uses tubes containing extracts of many different types of foods,

of different vitaming and minerals, of different strains of Candida

and with each one he gives me, he makes me perform strenght resitance

exercises. If I can perform the exercise well then that means that

there is no reaction to the product. He does not tell me what is in

the tube before so I do not know what it is. He only shows me after

the strenght test has been performed. No idea how it works. I was

very sceptical at first and tried to resist when I could feel that my

strengh was weakening with a product but there was no way I could

perform the exercise. On tuesday when he saw that I was not reacting

to any strains of Candida anymore he made me take the tests several

time to be sure without showing me what the tubes contained. No

reaction was detected. I used to always have a strong reaction to

Candida and to wheat and a little big to lactose. I have always been

fine with rye, tomatoes and all the other things he tested me for.

I don't know how this tests work exactly. This nutritionist was

recommended to me by a guy from work who is the most rational person

I know. He did warm me that the test would chanlenge me scepticism.

All I know is that 10 months ago I could not leave home without

dreading it. I had terrible panic attacks, anxiety, baldder problems,

constant stomach upsets, stomach cramps, terrible reaction to certain

food, ring worm, terrible skin/spots, I was always tired. Finally

after 8 months on a very strict Candida diet, with the probiotics and

the supplements, I started feeling much better over the last 2

months. this months I have been completely symptoms free. However

just before that I had 2 weeks feeling really bad and know I believe

it was a last probably due to die-off.

>

> > I got back from the Nutritionist yesterday and I was

> > beaming .

> > After 8 months on a very strict Candida diet: the result

> > showed that

> > I have defeated the beast!!! We took the tests 3 times: No

> > sign of

> > the Candida, no food intolerances detected, no more wheat

> > intolerance, no more lactose intolerance. Over the last 2

> > months all

> > my symptoms had disapeared and I was feling great so I was

> > expecting

> > my level of Candida to have gone down a lot. I am happy.

> > So now I can

> > stop the anti-fungals. I am continuing with the diet and

> > supplement

> > to make sure that the Candida does not resurfaces. I am

> > still

> > planning on taking Pau D'arco tea and Aloe vera from time

> > to time in

> > order to make sure that it does not come back. What a

> > relief!

> >

> >

> >

> > Ghislaine

> >

>

>

>

[Guest guest]

In a message dated 3/14/02 3:12:24 AM, couvillat@... writes:

<< he makes me perform strenght resitance

exercises. If I can perform the exercise well then that means that

there is no reaction to the product. >>

A friend of mine that sells herbs has a test like this. She puts a sample of

the ingredient between two fingers and if your body needs it, another person

will not be able to pull your fingers apart., If your body does not need it,

they will be able to pull your fingers apart. I haven't done it myself, but

several people I know swear by it to figure out what they need to cut out or

put into their supplements or diets.

Chantelle

diagnosed with Candidiasis Jan. 28, 2001

Doing well avoiding carbs and sugars

Taking natural remedies and lots of fresh vegis and protiens

[Guest guest]

I'm SO HAPPY FOR YOU!!!

You've shown us

THERE IS HOPE to DEFEAT this UGLY BEAST!

WAHOOOOOO

[Guest guest]

Hi Amy,

That is such wonderful news.I was in your shoes Friday the 13 only for me it was actually having the form with s Enbrel number on it ,so I could get his script filled.I have goosebumps because I know exactly how you feal.While is no where near as bad off,he would be awful without the steroids hes been on for 15months.Wishing Alyssa a VERY fast responce.You go and celebrate,we sure did.

Hugs

Becki and 4systemic

[Guest guest]

Amy & Alyssa, CONGRADULATIONS!!!!! I'm so happy for you gals! You

didn't burden us, that's what we're all here for is to listen, & be

supportive whether it's good or bad. Glad to hear it's good news now

though!! I hope it gets even better for you & Alyssa from here on

out. Please keep us posted on how she's doing.

Hugs,

& Chey4 Poly

> Hello All,

> Great News! Alyssa qualified for the Enbrel program! It was a

brutal appt. 3 hrs for the exam and paperwork. This exam was the

most thourough she has ever had. We were shocked at the depth of

progression of the disease. Alyssa was so amazingly brave, she bit

a hole in her lip, the pain was so bad. After it was over it only

took about 10 mins. for them to make the decision. We were a little

shocked and didn't grasp that she had been approved right away. I

now have in my hot little hands the much coveted Enbrel

prescription. I feel like its the winning lotto ticket! A big

celebration dinner was in order.

> Thanks to all who emailed with thier support. I am sorry to

burden you all at such a low point for us. It was so good to know

that you all understand and have been there. It also helped Alyssa

to hear from all the little kids who take it and told her it was

helping. One little one told her to " be brave, the shots aren't so

bad " .....

> We feel like we have turned a new road and she will be walking it

on her own two feet.

> thanks to all,

> Amy and Alyssa

[Guest guest]

YEAH! Wonderful news!

[Guest guest]

Amy,

That is great news, so happy to hear of your improvement, will continue to pray for even more good news in regards to your health, yeah!!!

Love,

Ruth

holzboog@... wrote:

Hi Everyone, Well I had my appt. at the tx clinic yesterday and all my numbers looked good. In fact I am at the low end of the MELD score now. They said that things jump around a bit but it does show that I'm hanging in there! Hard to complain about that news! The other symptoms that put me there are being controlled pretty well with the meds - ascites, encephlopathy and varicies. Even my platelettes were up to 52K where they had been at 39 for quite awhile. Well I'm off to get my prescriptions and then rest... Hope you all have a happy moment and a bit of good news in your day!Love,Amy

[Guest guest]

Amy,

That is great news, so happy to hear of your improvement, will continue to pray for even more good news in regards to your health, yeah!!!

Love,

Ruth

holzboog@... wrote:

Hi Everyone, Well I had my appt. at the tx clinic yesterday and all my numbers looked good. In fact I am at the low end of the MELD score now. They said that things jump around a bit but it does show that I'm hanging in there! Hard to complain about that news! The other symptoms that put me there are being controlled pretty well with the meds - ascites, encephlopathy and varicies. Even my platelettes were up to 52K where they had been at 39 for quite awhile. Well I'm off to get my prescriptions and then rest... Hope you all have a happy moment and a bit of good news in your day!Love,Amy

[Guest guest]

Amy: What wonderful news. I am so happy for you. Just keep on keeping on, and we will send prayers your way.

Love -

gina

[Guest guest]

Amy.....that sounds promising.....glad to hear hopeful news for a

change....hang in there. My prayers.

love jerry

[Guest guest]

Amy!

How great! I am so excited for you. Is it possible for things to

become well enough they take you back off of that tx list?

Congratulations. I am really happy for you, and hope you are feeling

well. Nice to know you will feel good when we all get to meet you.

Love,

Carole K