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Congratulations on pin pointing the gluten and casein. I remember those early

days. What to do next depends largely on what particular gut/immune system/

neurological/behavioral issues your son has. If you feel that food is what you

would like to address only, then I would say that if I had it to do over again,

rather than go gfcf then gfcfsf then gfcfsfpf etc. I would have introduced the

enzymes for each food I felt was an issue. For us the peptides with casein were

more of an issue than gluten. So I would have started with the AFP Peptzyde. The

research I have done suggests remaining on whatever particular diet you are

currently implementing while you introduce each necessary enzyme. Waiting a

couple of months after all needed enzymes are in play and then challenging with

foods you know used to offend. So for us that would have meant next introducing

the Pryme Zyme ( for gluten) and finally the No-Fenol(Phenolic foods like

oranges and bananas). We knew the No-Fenol was needed because the Zp and Pep

covered the gluten and casein and yet orange juice/tomatoes set him off with

similar reactions, hence the No-Fenol was introduced. But here is a thought. Say

we would have started with enzymes in the beginning (2 years ago). Would

ph's tolerance to different foods have degenerated to the degree it did? Or

would he have never developed a problem with Phenols? Or was the Phenol problem

there at the same time and just hidden by the casein and gluten problem? I

apologize, didn't mean to ramble, but I didn't delete it because it's something

for others to contemplate. Did the diet help us? Yes. But I wish I would have

known then what I know now. If there are other issues like I mentioned above,

please post, I'm sure there is a parent out there who could name your tune, and

if not guide you then perhaps at least share what they have done.

Hi

Hi,

I'm new to the group and have an 8 year old boy with mild

Asperger's. He had obvious addictions to wheat and milk products,

and so when I began to read about the diet, I had to do it. He has

been off of casein for 8 days, with one minor infraction and one

major infraction. He has been off of gluten for 4 of the last 5 days.

We seem to see an improvement in conversational skills and

handwriting at school. Have had a couple of intense withdrawals (I

think), when he was on the verge of crying.

Tell me what my next steps should be, what I should be looking for,

etc.

Thanks,

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Terri,

I am glad to hear that you are safe.... I saw the news and it was a

horrific sight.

Hey Ms. !!! ;o Good to hear from you Girl..... You sound so

refreshed from your little getaway....

I was so glad to have all of you respond to me... Miss ya all... My

husbands eye isn't doing so good..... It looks like a bubble on it and

scratched looking. I will let you all know what is going on.

I also want to Welcome all the newcomers to the group........ Welcome

aboard!!!!

Waving atcha from

N.J.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

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Always great to hear from you too.

>From: diane214@... >Reply- > >Subject: Re: [ ] Hi >Date: Tue, 6 May 2003 06:58:25 -0400 (EDT) > MSN 8 helps ELIMINATE E-MAIL VIRUSES. Get 2 months FREE*.

Terri,

I am glad to hear that you are safe.... I saw the news and it was a

horrific sight.

Hey Ms. !!! ;o Good to hear from you Girl..... You sound so

refreshed from your little getaway....

I was so glad to have all of you respond to me... Miss ya all... My

husbands eye isn't doing so good..... It looks like a bubble on it and

scratched looking. I will let you all know what is going on.

I also want to Welcome all the newcomers to the group........ Welcome

aboard!!!!

Waving atcha from

N.J.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

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  • 1 month later...
Guest guest

<kindanice_99@y...> wrote:

<< Hi my name is Kerri, im 36 in a couple of weeks. I have PA,

fibromyalgia,lumbago and depression. I've been putting up with it

for years and it took the doctors ages for them to tell me what i

have. I finally was told earlier this year that i have PA. Everyone just

thought i had rotton skin on my feet from wearing the wrong

shoes...But I don't. Anyway it would be really good to chat with

some of you. Take care for now...>>

Welcome Kerri. Can you tell us more about what you mean about the

rotten skin on your feet. Was it P or something else.

Debbie

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-Hi Kerri,

Welcome to the group! I have PA and fibromyalgia too. Do you find

when your PA flares your fibro does too? Hope you can get on a good

treatment program now that you have been diagnosed.

Marti

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Guest guest

Hello, Kerri. I guess being told you have " rotten skin on your feet. " Is no

worse than being told that the toenail problem was either psoriasis or syphylis

of the toes....He was joking wasn't he? I've always thought so. Sylvia

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  • 2 months later...

Welcome to the group! I have only been a member for a few weeks but have

found this group friendly, informative, well informed, suppotive, and

inquisitive. I was on methatrexate for a while, and it helped for a short

time. Hope you enjoy the group!

>From: " kitkat11252 " <kitkat10000@...>

>Reply-

>

>Subject: [ ] Hi

>Date: Sun, 07 Sep 2003 03:16:16 -0000

>

>I am new to the group. I was recently diagnosed with PA. I started

>methotrexate yesterday along with arthrotec twice a day. I hope to

>get feeling better soon. I am going to start on primerose oil and

>omega oils. If anyone has any input please let me know. I am very

>happy to have found this group.

>

>

>

_________________________________________________________________

Try MSN Messenger 6.0 with integrated webcam functionality!

http://www.msnmessenger-download.com/tracking/reach_webcam

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  • 4 weeks later...
  • 1 month later...

Good to see you again Andy!

most of us know " Overwhelmed " I know I certainly do

I hope everything comes together for you real soon

you are truly missed

A

[ ] Hi

I am still around. I am just overwhelmed with assorted things to do.

I will try to bop over to the list and do some hit and miss answering

every few days, but I may put in less time than usual at it for the

next few weeks.

right how, though, I am going to exterminate a few more tasks rather

than post more.

Andy . . .. . . . . . . . . . . . . .. . . . .

=======================================================

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Andy-

I received the flyers from you thanks. Do you have the others ready yet? If not

when do you think I can expect them?

Karyn

[ ] Hi

I am still around. I am just overwhelmed with assorted things to do.

I will try to bop over to the list and do some hit and miss answering

every few days, but I may put in less time than usual at it for the

next few weeks.

right how, though, I am going to exterminate a few more tasks rather

than post more.

Andy . . .. . . . . . . . . . . . . .. . . . .

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  • 2 months later...

Morning,

Well this would be the right place. I joined a short time ago and everyone

has been so helpful and understanding. I just started treatments, how long

were you on treatments for? Lynne

[ ] hi

well i joined here hopefully to talk to people. i have had treatment

and things turn out ok.but it is just when u have noone to talk to

about the virus. hope i can make new friends. i live in louisiana

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-

well first would like to say. stay positive w/the treatments.i stayed

on them for a year..it was long time but it was worth it in the end...

i did treatments like 4years ago....but so far i am still

good.....ythank god

-- In , " Lynne Dunham "

<lynne@l...> wrote:

> Morning,

> Well this would be the right place. I joined a short time ago and

everyone

> has been so helpful and understanding. I just started treatments,

how long

> were you on treatments for? Lynne

>

>

>

>

> [ ] hi

>

>

> well i joined here hopefully to talk to people. i have had treatment

> and things turn out ok.but it is just when u have noone to talk to

> about the virus. hope i can make new friends. i live in louisiana

>

>

>

>

>

>

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Oh I try to stay positive and luckily I have this group.

[ ] hi

>

>

> well i joined here hopefully to talk to people. i have had treatment

> and things turn out ok.but it is just when u have noone to talk to

> about the virus. hope i can make new friends. i live in louisiana

>

>

>

>

>

>

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I love making new friends, so I hope we can become friends.

I have just stopped treatment myself in Dec. so maybe you could help

me out with some questions as they arise?

I haven't been in this group long but this is a really good group of

people!!! Most have quite a few drawbacks in the way of

membership, but I've seen none of that here. Not once.....hmmm kind

of strange come to think of it. Maybe it's a " Stepford " support

group? j/k You'll love it here.

Kay

> well i joined here hopefully to talk to people. i have had

treatment

> and things turn out ok.but it is just when u have noone to talk to

> about the virus. hope i can make new friends. i live in louisiana

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Welcome. We have a couple of southerners in the group. I am from Green Bay, WI. rcajun85 <rcajun85@...> wrote:

well i joined here hopefully to talk to people. i have had treatment and things turn out ok.but it is just when u have noone to talk to about the virus. hope i can make new friends. i live in louisiana

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everyone,

This is not from Dr. Chiu - this is the Bagle virus - it sends emails to

people in the address book found on an infected system. Normally there

is an attachment - do NOT click on the attachment as it will infect your

system.

Regards,

Adlard wrote:

> You came through loud and clear Dr. Chiu :) Good to 'see' you again :)

> Chris.

>

> On 24/01/2004, at 12:06 PM, gchiu@... wrote:

>

> > Test =)

> > lilaydrjxcyjn

> > --

> > Test, yep.

> >

> >

> >

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Whoops - didn't recognise that one. I was so happy to see Dr. Chiu's

name (he used to be a member of this group) that I didn't recognise the

virus. Must have been really asleep last night.

Thanks ,

Chris.

>

> everyone,

>

> This is not from Dr. Chiu - this is the Bagle virus - it sends emails

> to

> people in the address book found on an infected system. Normally there

> is an attachment - do NOT click on the attachment as it will infect

> your

> system.

>

> Regards,

>

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  • 2 months later...
Guest guest

So sorry to hear of your

pain, Eileen. We’re here for you

HCV is not necessarily a death sentence. Most people do survive it, though, I see from your post that it is affecting the

quality of your husbands life already. It is generally a very slow progressing

disease and there is a good chance your husband may outlive this virus. I don’t

know what the extent of liver damage your husband has suffered, but take heart, there is still a good chance he’ll be around to

see your daughters grow up. Meanwhile they are working on better treatments all

the time. I pray for you and your family that something comes up that will work

for your husband. I had hepatitis for about 20 years before I discovered it,

and had suffered minimal liver damage. I don’t want to paint a false

picture for you, people do die from this disease, but more people run out the

course of their lives before the dragon gets them. Tell us a little more about

his condition if you care to. Is there a medical or religious reason your

husband will not consider a transplant? Anyway welcome aboard and I hope we can

be of some comfort to you and your family -dz-

[ ] Hi

·

Hi my name is eileen and my husband was diagnosed in

1988 with HCV.

I have done ok with things till recently, his pain

levels have gone

through the roof and he has no energy.He's been on

the interferon

treatment and didn't work and he's decided not to

go for a

transplant. Whn someone talks about what their

teenagers are doing

all I can think about is that our 2 little girls

will not be able to

curl up with daddy and tell him how thier first

date went or walk

them down the isle when they get married or hold

their children. The

thought of being without him terrifies me and I

know that someday

that is going to happen. A lady I work with

suggested I find someone

to talk to who could relate with me, so if anyone

can I'd love to

hear how you got through.

Eileen

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Guest guest

Hi Eileen, I'm . My husband, Shane, was diagnosed with Hep

C in December of last year. He is on interferon/ribaviron combo and

will take his 3rd shot tomorrow. I'm sorry the treatment didn't

work for him. What stage is his liver in? I understand your fear.

When we first found out with Shane I was terrified, angry, and

bitter. We've overcome a lot of obstacles and all I could think was

why us and haven't we been through enough. It took me reading

postings here and everyone's awesome support to realize that I had

over researched...scared myself silly...and that the majority die

WITH Hep C not from it. There are new medicines developed all the

time...don't give up...you or your husband. Since he didn't respond

to the interferon have ya'll considered going the herbal route?

Shane is taking milk thistle along with doing the normal tx. There

is also another herbal remedy we've just become aware of that I am

researching. I'm working six days this week, but I am going to try

to drive to this biochemist's lab next week and talk to him. A

friend's mother swears by everything she's ever taken that he's

developed. I know, I sound a little hokey, but I believe that if

one thing doesn't work for you then try another. I don't think

there is ever enough you can do for your health. Since Shane has

lost his job due to the Hep C I've gone back to work with the

homebuilder I used to work for. I work in Sales and I come across

all kinds of people on a daily basis. Twice this week during

conversations with a couple of our homeowners I've had Psalms 91

quoted to me. It's worth reading and has only reinforced my faith

and my determination. You've come to the right place for support.

I was worried with my first post if anyone would respond since I

wasn't the one with Hep C, but my worries faded fast. Everyone here

is WONDERFUL and such great support. Make yourself at home, and if

you need anything don't hesitate to ask. My thoughts and prayers

for you and your family.

> Hi my name is eileen and my husband was diagnosed in 1988 with

HCV.

> I have done ok with things till recently, his pain levels have

gone

> through the roof and he has no energy.He's been on the interferon

> treatment and didn't work and he's decided not to go for a

> transplant. Whn someone talks about what their teenagers are doing

> all I can think about is that our 2 little girls will not be able

to

> curl up with daddy and tell him how thier first date went or walk

> them down the isle when they get married or hold their children.

The

> thought of being without him terrifies me and I know that someday

> that is going to happen. A lady I work with suggested I find

someone

> to talk to who could relate with me, so if anyone can I'd love to

> hear how you got through.

> Eileen

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Guest guest

thank you for responding to my email. Since Randy took the

treatment he's just steadly gotten worse he can't work anymore due

to the pain and hepatic encephalophy which means that the toxins

form his liver are poisioning his brain it causes memory loss,

falling and personality changes. They can't figure out why hes

having so much pain, his doctor keeps checking for cancer but hasn't

found anything yet.I work for hospice and have seen people die with

hcv and they don't have this much pain.Randy knows he won't see the

girls grow up and I believe people know these things. They don't

know exactly when but they have a sense.We've talked to his

hepatoligist about the herbal remadies and he said that there is no

medical proof that they work, and with the encephalophy I'd be

afraid that it his liver wouldn't flush it right and make things

worse. I hope it works for your husband. When Randy was on the

treatment he reacted as no other person ever had his alt shot over

200 and be became jaundice. The liver specialist at the VA called

all over trying to figure out why and nobody could figure it out, he

hasen't been a text book case this far, so he will probaly never

be.Thank you for listening hope to hear from you soon.Eileen

- In , " "

<jenjenintexas@y...> wrote:

> Hi Eileen, I'm . My husband, Shane, was diagnosed with

Hep

> C in December of last year. He is on interferon/ribaviron combo

and

> will take his 3rd shot tomorrow. I'm sorry the treatment didn't

> work for him. What stage is his liver in? I understand your

fear.

> When we first found out with Shane I was terrified, angry, and

> bitter. We've overcome a lot of obstacles and all I could think

was

> why us and haven't we been through enough. It took me reading

> postings here and everyone's awesome support to realize that I had

> over researched...scared myself silly...and that the majority die

> WITH Hep C not from it. There are new medicines developed all the

> time...don't give up...you or your husband. Since he didn't

respond

> to the interferon have ya'll considered going the herbal route?

> Shane is taking milk thistle along with doing the normal tx.

There

> is also another herbal remedy we've just become aware of that I am

> researching. I'm working six days this week, but I am going to

try

> to drive to this biochemist's lab next week and talk to him. A

> friend's mother swears by everything she's ever taken that he's

> developed. I know, I sound a little hokey, but I believe that if

> one thing doesn't work for you then try another. I don't think

> there is ever enough you can do for your health. Since Shane has

> lost his job due to the Hep C I've gone back to work with the

> homebuilder I used to work for. I work in Sales and I come across

> all kinds of people on a daily basis. Twice this week during

> conversations with a couple of our homeowners I've had Psalms 91

> quoted to me. It's worth reading and has only reinforced my faith

> and my determination. You've come to the right place for

support.

> I was worried with my first post if anyone would respond since I

> wasn't the one with Hep C, but my worries faded fast. Everyone

here

> is WONDERFUL and such great support. Make yourself at home, and

if

> you need anything don't hesitate to ask. My thoughts and prayers

> for you and your family.

>

>

>

>

> > Hi my name is eileen and my husband was diagnosed in 1988 with

> HCV.

> > I have done ok with things till recently, his pain levels have

> gone

> > through the roof and he has no energy.He's been on the

interferon

> > treatment and didn't work and he's decided not to go for a

> > transplant. Whn someone talks about what their teenagers are

doing

> > all I can think about is that our 2 little girls will not be

able

> to

> > curl up with daddy and tell him how thier first date went or

walk

> > them down the isle when they get married or hold their children.

> The

> > thought of being without him terrifies me and I know that

someday

> > that is going to happen. A lady I work with suggested I find

> someone

> > to talk to who could relate with me, so if anyone can I'd love

to

> > hear how you got through.

> > Eileen

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Guest guest

Eileen,

I am so sorry ya'll have to go through this. I wish there was

something I could do for ya'll. Don't give up hope...there are new

developments in medicine everyday. Please know that if you ever

need a friend to talk to that I am here. You, Randy, and the girls

are in my prayers.

> > > Hi my name is eileen and my husband was diagnosed in 1988 with

> > HCV.

> > > I have done ok with things till recently, his pain levels have

> > gone

> > > through the roof and he has no energy.He's been on the

> interferon

> > > treatment and didn't work and he's decided not to go for a

> > > transplant. Whn someone talks about what their teenagers are

> doing

> > > all I can think about is that our 2 little girls will not be

> able

> > to

> > > curl up with daddy and tell him how thier first date went or

> walk

> > > them down the isle when they get married or hold their

children.

> > The

> > > thought of being without him terrifies me and I know that

> someday

> > > that is going to happen. A lady I work with suggested I find

> > someone

> > > to talk to who could relate with me, so if anyone can I'd love

> to

> > > hear how you got through.

> > > Eileen

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