question for

[Guest guest]

Hello Anne

I don't think it's anything like being moderated. has been

really weird lately and I wasn't getting any of the mail group mail for

a few days even though they were clearly some posted according to the

website.

Regards,

anniecoldtoes@... wrote:

>Hi ,

>

>I would write to you offlist, except that I am not at my own computer, and

therefore do not have anyones addresses other than through the group

address.

>

>I am just wondering if I am on moderated for some reason, because when I send

mail to the list lately, it takes so long for it to reach the list. Even though

I send the same messages at the exact same time to other groups that I am

on.

>

>Just curious!

>The IV nurse should be here soon to draw the Vancomycin levels & change my

dressing site... I have actually been a good little patient because I didn't

take the dressing off on my own yet... although I have really wanted to!!

>

>Hope you are doing better with your diabetes!!

>Love Always,

>Anne

>

>

>...

>

>

[Guest guest]

Anne,

is weird sometimes, and I call it constipation. All

messages will go through, just takes time sometimes.

Question for

Hi ,

I would write to you offlist, except that I am not at my own computer,

and therefore do not have anyones addresses other than through the

group address.

I am just wondering if I am on moderated for some reason, because when I

send mail to the list lately, it takes so long for it to reach the list.

Even though I send the same messages at the exact same time to other

groups that I am on.

Just curious!

The IV nurse should be here soon to draw the Vancomycin levels & change

my dressing site... I have actually been a good little patient because I

didn't take the dressing off on my own yet... although I have really

wanted to!!

Hope you are doing better with your diabetes!!

Love Always,

Anne

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[Guest guest]

Hi ,

You may have already told me, but how old were you

when you were diagnosed with achalasia? Also, you

mentioned that your doctor suggested a g-tube. What

is that???? I can understand why you do not want

botox. Just from reading all the posts from people who

have had it, it seems like it does not work.

--- C Mimms <julieathome2@...> wrote:

> Bev,

> I too could be facing this.. I had an endoscopy and

> strech done on

> tuesday. It didn't really help. My dr said he thinks

> my motility is in

> reverse and the muscles (spitcher) doesn't work at

> all. They are

> suggesting botox..but as i told Kari i don't want

> that stuff injected and

> dr said it may not work at all. He is suggesting a

> reconstruction sugery

> to try to make the best of what i have. But told me

> that since i am so

> young and that i have this far advanced A that i

> could face removal at an

> older age. Like in about 10yrs. If nothing works. Or

> he said i could opt

> to have a G tube placed for my main nutrition. Well

> thats down the

> road..hopefully the next surgery will work.

>

>

__________________________________________________

[Guest guest]

Kari

I'm 31..the g tube was only if there were no alternatives. That was like

the last resort thing. Wants to try to reconstruct it first.

julie

[Guest guest]

, do you know what a G-Tube is?? I have never

heard of one. I am curious, because I am wondering if

it may be an alternative to having the entire

esophagus removed. Let me know if you can explain what

a G Tube is. Thanks! Kari

--- C Mimms <julieathome2@...> wrote:

> Kari

> I'm 31..the g tube was only if there were no

> alternatives. That was like

> the last resort thing. Wants to try to reconstruct

> it first.

> julie

>

__________________________________________________

[Guest guest]

Kari,

A G tube is a tube that is placed in the stomach from the outside. You

feed yourself through this....you don't swallow food anymore. You feed

yourself liquid food only. That would only be if i didn't opt for the

surgery to reconstruct my esophogus. I think i might opt for the

reconstruction first though. I want to be able to eat food. Has your dr

called you back? I go on tuesday for another monomerty. YEAH i get to gag

again. This is being done...cause dr thinks the bottom of my E has no

motility left to it. And that will determine if they want to do the

reconstruction. Oh if you want to do searches on the subject of

achalasia...use another search engine. Like Google.com I found alot more

info there then on Juno or aol. Hope to talk to you soon. Oh dr put me on

Procardia...it is heart medication..it has helped with the spasms...but

things this want to come up and i'm not likeing the side effects that

medication has, headache, up and down pulse and blood pressure, dizzy,

and a feeling of being stupid (can't concentrate). But it does help a

lot i have ate more in the last 3 days then i have in 2 weeks. Talk to

you soon.

[Guest guest]

Hi ,

Sorry for barging in on your question to , but I wondered, is Benefiber

something for constipation? I only ask because most of the kids with autism

I know of have the opposite and we have been struggling with major

constipation issues in three of our kids. One, our 7 year old daughter with

autism, has had surgery for it, but I am always looking for answers for the

other two. We have used Lactulose with some degree of success, but now what

I'd like to see and the kids hate it. If this is your struggle, let me know

if you find something that works! :-)

Thank you,

na

Question for

Hi ,

In a message a while back you mentioned using the Benefiber on your

daughter. What I wanted to know is how often did you start off using

it & how long did it take to get results? I am seriously considering

getting some for my daughter, but I wanted to ask you these

questions first.

Take Care,

[Guest guest]

Hi ,

Sorry for barging in on your question to , but I wondered, is Benefiber

something for constipation? I only ask because most of the kids with autism

I know of have the opposite and we have been struggling with major

constipation issues in three of our kids. One, our 7 year old daughter with

autism, has had surgery for it, but I am always looking for answers for the

other two. We have used Lactulose with some degree of success, but now what

I'd like to see and the kids hate it. If this is your struggle, let me know

if you find something that works! :-)

Thank you,

na

Question for

Hi ,

In a message a while back you mentioned using the Benefiber on your

daughter. What I wanted to know is how often did you start off using

it & how long did it take to get results? I am seriously considering

getting some for my daughter, but I wanted to ask you these

questions first.

Take Care,

[Guest guest]

Amber

Sorry Dr. Rice and he is at the Cleveland Clinic in Ohio.

Indiana

[Guest guest]

, I have ordered some products from the author's website (sorry, I

didn't know about your site then). If the directions say take one 1-3

times per day, how do you know what would be good on products like

Catechol, DGL Licorice, Fucus Plus. I thought I saw somewhere about this,

but can't find it now. Thanks, Debra

< END >

---------------------------------NOTE-----------------------------------------

The information contained in this email message is intended only for use of the

individual or entity named above. If the reader of this message is not the

intended recipient, or the employee or agent responsible to deliver it to the

intended recipient, you are hereby notified that any dissemination, distribution

or copying of this communication is strictly prohibited. If you have received

this communication in error, please immediately notify us by email

(postmaster@...), and destroy the original message. Thank you

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

[Guest guest]

HI Cher.I hve been off treatment now seven months.After six months of stopping

treatment I had my pcr,it was negative(undetectable).I had two tx.s and some

trials before all with standard treatment,not the PEG.Everytime after stopping

tx I became positive again.Being 1a I thought I never make it.My nxt pcr will be

in 5 months time,that will be the real test.Sorry the last tx was with the

PEG,and Ribavarine.The worst side-effect was the brainfog,including short-memory

los..No 2 on the list was sleeplesness and after that some other unpleasanties I

could cope with,including depression.My doc never gave me medicines to combat

the side-effects.Although I got sometimes sleeping-pills from the

" blackmarket " .No sleep will kill you sooner then the Hep-virus.The first thing I

noticed was that the brainfog was getting less,after some weeks,but I also took

MSM and I.am sure it helped me clearing that fog.Very slowly normal sleep

returned,instead of two or one hour in the early morning it came back to now

almost normal.My energy came back fairly quickly.Did.nt need more afternoon

laydowns.Now 7 months later I start feeling my normal self again,which is.nt

normal by the way,.I still hve bouts of depression has to do with what I.am

going to do with the rest of my life etc. You.re only three weeks after

tx,don.t expect miracles overnight,it.s also very individualisticly,oh

English,.I think the depression will be the last effect to disappear,if

ever...In Holland more and more people are using anti-depressant,prozac etc.I

think it has to do with our lifestyle and the state of the world.Oh yes my hair

never falled out.You.re out of the tunnel now and you.re beginning to see the

light..

question for

Forgive me, as I am a little behind, not to mention the

forgetfullness from the sides of treatment, but how long have you

been off treatment? And you are non-detectable, right? Just somethin

I read in one of your posts that made me want ask. I know you have

been in the group for quite some time but as I said I am behind and

my memory has not been too good. I have been off treatment now for 2

weeks and 4 days from shots. Yes, I CAN already tell a difference.

They are slight, but are differences that tell me I am on my way up.

Depression is still there (doc changed paxil to controlled release

paxil) and I could already tell a difference immeadiately. I still

can't start and finish tasks-everything is still so over-whelming.

Still drinking distilled water and taking my vitamins. Hair is still

falling out-when does it stop?? Also, a question for the group, yes,

I know that even what is on our skin is absorbed, but I wonder if the

new patches regarding the paxil would be easier on our livers to

absorb rather than taking the medication by mouth. Any feedback on

that would be apprecitated. Would there be that much of a difference.

Loosing my ins in Dec and am REALLY worried about that, but hve found

a way to get some free bloodwork results done and I will be put on a

program that will pay for my paxil and my psch worked with me to

negotiate an affordable price for me, so all is not lost. Anyway,

thanks to everyone for being there for me. Any comments always

welcome. cher

[Guest guest]

HI Cher.I hve been off treatment now seven months.After six months of stopping

treatment I had my pcr,it was negative(undetectable).I had two tx.s and some

trials before all with standard treatment,not the PEG.Everytime after stopping

tx I became positive again.Being 1a I thought I never make it.My nxt pcr will be

in 5 months time,that will be the real test.Sorry the last tx was with the

PEG,and Ribavarine.The worst side-effect was the brainfog,including short-memory

los..No 2 on the list was sleeplesness and after that some other unpleasanties I

could cope with,including depression.My doc never gave me medicines to combat

the side-effects.Although I got sometimes sleeping-pills from the

" blackmarket " .No sleep will kill you sooner then the Hep-virus.The first thing I

noticed was that the brainfog was getting less,after some weeks,but I also took

MSM and I.am sure it helped me clearing that fog.Very slowly normal sleep

returned,instead of two or one hour in the early morning it came back to now

almost normal.My energy came back fairly quickly.Did.nt need more afternoon

laydowns.Now 7 months later I start feeling my normal self again,which is.nt

normal by the way,.I still hve bouts of depression has to do with what I.am

going to do with the rest of my life etc. You.re only three weeks after

tx,don.t expect miracles overnight,it.s also very individualisticly,oh

English,.I think the depression will be the last effect to disappear,if

ever...In Holland more and more people are using anti-depressant,prozac etc.I

think it has to do with our lifestyle and the state of the world.Oh yes my hair

never falled out.You.re out of the tunnel now and you.re beginning to see the

light..

question for

Forgive me, as I am a little behind, not to mention the

forgetfullness from the sides of treatment, but how long have you

been off treatment? And you are non-detectable, right? Just somethin

I read in one of your posts that made me want ask. I know you have

been in the group for quite some time but as I said I am behind and

my memory has not been too good. I have been off treatment now for 2

weeks and 4 days from shots. Yes, I CAN already tell a difference.

They are slight, but are differences that tell me I am on my way up.

Depression is still there (doc changed paxil to controlled release

paxil) and I could already tell a difference immeadiately. I still

can't start and finish tasks-everything is still so over-whelming.

Still drinking distilled water and taking my vitamins. Hair is still

falling out-when does it stop?? Also, a question for the group, yes,

I know that even what is on our skin is absorbed, but I wonder if the

new patches regarding the paxil would be easier on our livers to

absorb rather than taking the medication by mouth. Any feedback on

that would be apprecitated. Would there be that much of a difference.

Loosing my ins in Dec and am REALLY worried about that, but hve found

a way to get some free bloodwork results done and I will be put on a

program that will pay for my paxil and my psch worked with me to

negotiate an affordable price for me, so all is not lost. Anyway,

thanks to everyone for being there for me. Any comments always

welcome. cher

[Guest guest]

What condition are you in?

RE: Question for

, I have ordered some products from the author's website (sorry, I

didn't know about your site then). If the directions say take one 1-3

times per day, how do you know what would be good on products like

Catechol, DGL Licorice, Fucus Plus. I thought I saw somewhere about

this,

but can't find it now. Thanks, Debra

< END >

---------------------------------NOTE-----------------------------------

------

The information contained in this email message is intended only for use

of the individual or entity named above. If the reader of this message

is not the intended recipient, or the employee or agent responsible to

deliver it to the intended recipient, you are hereby notified that any

dissemination, distribution or copying of this communication is strictly

prohibited. If you have received this communication in error, please

immediately notify us by email (postmaster@...), and destroy the

original message. Thank you

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

======

[Guest guest]

Mostly just overweight (317). I am 46. Do not take any medications, a

touch of acid reflux, blood pressure is good, cholestrol is around 200.

Thanks, Debra

" Dekany "

<info@foodforyour

blood.com> cc:

Subject: RE: Question

for

11/14/2002 04:52

PM

Please respond to

What condition are you in?

RE: Question for

, I have ordered some products from the author's website (sorry, I

didn't know about your site then).  If the directions say take one 1-3

times per day, how do you know what would be good on products like

Catechol, DGL Licorice, Fucus Plus.  I thought I saw somewhere about

this,

but can't find it now.  Thanks, Debra

< END >

---------------------------------NOTE-----------------------------------

------

The information contained in this email message is intended only for use

of the individual or entity named above. If the reader of this message

is not the intended recipient, or the employee or agent responsible to

deliver it to the intended recipient, you are hereby notified that any

dissemination, distribution or copying of this communication is strictly

prohibited. If you have received this communication in error, please

immediately notify us by email (postmaster@...), and destroy the

original message. Thank you

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

======

[Guest guest]

Debra - take the high dose.

Love

RE: Question for

, I have ordered some products from the author's website (sorry, I

didn't know about your site then). If the directions say take one 1-3

times per day, how do you know what would be good on products like

Catechol, DGL Licorice, Fucus Plus. I thought I saw somewhere about

this,

but can't find it now. Thanks, Debra

< END >

---------------------------------NOTE-----------------------------------

------

The information contained in this email message is intended only for use

of the individual or entity named above. If the reader of this message

is not the intended recipient, or the employee or agent responsible to

deliver it to the intended recipient, you are hereby notified that any

dissemination, distribution or copying of this communication is strictly

prohibited. If you have received this communication in error, please

immediately notify us by email (postmaster@...), and destroy the

original message. Thank you

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

======

[Guest guest]

In a message dated 11/15/2002 11:31:40 AM Eastern Standard Time,

debra.wallin@... writes:

<< Does

wheat tend to make us Typo O's down in the dumps?? >>

Eating wheat makes me sleepy, bloated, uncomfortable, grouchy, earpy...that's

depressing enough.

Max

[Guest guest]

> In a message dated 11/15/2002 11:31:40 AM Eastern Standard Time,

> debra.wallin@w... writes:

>

> << Does

> wheat tend to make us Typo O's down in the dumps?? >>

> Eating wheat makes me sleepy, bloated, uncomfortable, grouchy,

earpy...that's

> depressing enough.

> Max

C'mon, yes, it's true. But i find that a 6 day (almost 100 percent

ADHERENCe) DIET wITH a one day wheat-ok " SPLURGE " is all good. Your

body would just incinerate through that food. Maybe i'm wrong

though.

Anyways, I believe that when you do eat wheat based foods, find

something INTERESTINg to do. Get your mind off your sin there!!

Especially, as an O, do something intense.......hobbies are good here.

Also, maybe you''re eating the wheat-based foods to really convince

yourself that your life is not " as it should be " whether it be the

job, family, situations etc etc..... I know that when i was a

depressed-leaning teen i helped continue that mindset by having

rolls, fries & cookies for lunch everyday. Ugh, i'll stop lecturing

[Guest guest]

Dodie,

Yes it is a long drive between Portland and Medford. I had my

surgery at OHSU and figure on going there again for a 2nd CI. But

then its less than a n hour by transit. LOL Sure it would be nice to

have a local clinic but consider the fact that OHSU has a lot of

experience and serves oh I don't know how many CI'ers up this way.

You want that experience. I don't have an ENT here. Here is Don

Plapinger's email address if you would like to contact him, he is my

audie.

plapinge@...

*---* *---* *---* *---* *---*

" If you feel you have no faults ... there's another one. "

--unknown

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.attbi.com/~rlclark77/

[Guest guest]

Dodie and ,

Hi! I was implanted at OHSU as well! Don is actually the audi that did my

evaluation he is a great guy! My implant doctor or ent was Dr.

Schleuning. He is great! The staff there are very sweet and courtious!

Just thought I would put my two cents worth.

Bridget

implanted 03/25/03

Nuked with the nucleus 24 04/22/03

[Guest guest]

Bridget,

How did I miss you? LOL Well hey, there will be a CI picnic

probably in September again so we can meet then if not sooner. Unless

you fancy some Italian pastry, then meet for coffee there. Its in

north Portland. Bring the kids! I start baking there tonight.

*---* *---* *---* *---* *---*

Growing Old is Mandatory. Growing Wise is Optional.

--sign in a counselor's office

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.attbi.com/~rlclark77/

[Guest guest]

,

Thanks for Don's e-mail address. He responded right away. He said

the first step is to have an evaluation of my hearing to see if I am

a candidate. Unfortunately, that means travelling to Portland.

I guess it isn't in the cards at this time. At least I know it is an

option for the future.

Thanks again for the information.

Dodie

> Dodie,

> Yes it is a long drive between Portland and Medford. I had my

> surgery at OHSU and figure on going there again for a 2nd CI. But

> then its less than a n hour by transit. LOL Sure it would be nice

to

> have a local clinic but consider the fact that OHSU has a lot of

> experience and serves oh I don't know how many CI'ers up this way.

> You want that experience. I don't have an ENT here. Here is Don

> Plapinger's email address if you would like to contact him, he is my

> audie.

>

> plapinge@o...

>

> *---* *---* *---* *---* *---*

> " If you feel you have no faults ... there's another one. "

> --unknown

> & Gimlet (Guide Dawggie)

> Portland, Oregon

> N24C 3G 8/2000 Hookup

> rlclark77@a...

> http://home.attbi.com/~rlclark77/

[Guest guest]

Dodie,

Might I suggest this. If you think you can benefit from a CI, get

an evaluation. You can do that in one trip. If the evaluation shows

you do not qualify at this time, then at least you know where you are.

Yes Portland is a long trip but if Portland is the nearest center that

is reputable, then go for it. Put your mind at ease and do it. An

evaluation does not mean you have to commit any further, I don't know

anything about the CI clinic in Eugene. Portland is just a couple

hours past Eugene.

*---* *---* *---* *---* *---*

Ambivalent? Well yes and no.

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.attbi.com/~rlclark77/

[Guest guest]

I'm not , but this is the best pie crust recipe I've ever done--I got

it off the Unschooling List (I use spelt flour, of course):

ANGELA'S PIE CRUST

5 cups white spelt flour (or you can mix some whole-grain spelt flour in)

1 Tbsp salt

1 Tbsp sugar

2 cups butter-flavored Crisco (don't use store brand) (I don't know if this

is okay

for Os--it's made of part. hyd. soybean & cottonseed oils)

1 large egg (put into a 1 cup measure, add 1 T. apple cider vinegar & fill

with

cold water to the top)

Put flour, salt, sugar and Crisco into mixer. Mix on low speed until the

Crisco is broken up throughout the flour, but DO NOT over mix. Add the cup

of water with the egg in it and mix until most of the flour is incorporated.

Again, do not over mix. If there is still some dry ingredients in the bottom

of your mixer, dump it on the counter and mix it in by hand. You may need to

add a Tbsp or so more water. Knead about 10 times, break into 5 balls. This

freezes well. Thaw in microwave, takes less than a minute to thaw. I roll my

pie crust out on a pastry cloth with flour on it. I also cover my rolling

pin with a pastry sleeve. It isn't necessary, but it comes up easily off the

cloth without tearing. Use as little flour added as possible when rolling it

out; it will toughen it up. It is a very favorful flakey crust.

Jerilyn's note: I love this recipe because it makes 5 balls, which I can

either freeze for later or sometimes I just make 2-4 pies all at once. I

don't have a mixer so I use my Cuisenart with the dough blade for this.

Jerilyn in CO

[Guest guest]

I think if you used butter or ghee instead of the crisco you'd be better off.

Crisco is defenitely NOT ok.

Re: Question for

I'm not , but this is the best pie crust recipe I've ever done--I got

it off the Unschooling List (I use spelt flour, of course):

ANGELA'S PIE CRUST

5 cups white spelt flour (or you can mix some whole-grain spelt flour in)

1 Tbsp salt

1 Tbsp sugar

2 cups butter-flavored Crisco (don't use store brand) (I don't know if this

is okay

for Os--it's made of part. hyd. soybean & cottonseed oils)

1 large egg (put into a 1 cup measure, add 1 T. apple cider vinegar & fill

with

cold water to the top)

Put flour, salt, sugar and Crisco into mixer. Mix on low speed until the

Crisco is broken up throughout the flour, but DO NOT over mix. Add the cup

of water with the egg in it and mix until most of the flour is incorporated.

Again, do not over mix. If there is still some dry ingredients in the bottom

of your mixer, dump it on the counter and mix it in by hand. You may need to

add a Tbsp or so more water. Knead about 10 times, break into 5 balls. This

freezes well. Thaw in microwave, takes less than a minute to thaw. I roll my

pie crust out on a pastry cloth with flour on it. I also cover my rolling

pin with a pastry sleeve. It isn't necessary, but it comes up easily off the

cloth without tearing. Use as little flour added as possible when rolling it

out; it will toughen it up. It is a very favorful flakey crust.

Jerilyn's note: I love this recipe because it makes 5 balls, which I can

either freeze for later or sometimes I just make 2-4 pies all at once. I

don't have a mixer so I use my Cuisenart with the dough blade for this.

Jerilyn in CO

[Guest guest]

Thank you Jerilyn. I'd just been making pies without the crust. I'm not very

good with pastry.

Re: Question for

> I'm not , but this is the best pie crust recipe I've ever done--I got

> it off the Unschooling List (I use spelt flour, of course):

>

> ANGELA'S PIE CRUST

>

> 5 cups white spelt flour (or you can mix some whole-grain spelt flour in)

> 1 Tbsp salt

> 1 Tbsp sugar

> 2 cups butter-flavored Crisco (don't use store brand) (I don't know if

this

> is okay

> for Os--it's made of part. hyd. soybean & cottonseed oils)

> 1 large egg (put into a 1 cup measure, add 1 T. apple cider vinegar & fill

> with

> cold water to the top)

>

> Put flour, salt, sugar and Crisco into mixer. Mix on low speed until the

> Crisco is broken up throughout the flour, but DO NOT over mix. Add the cup

> of water with the egg in it and mix until most of the flour is

incorporated.

> Again, do not over mix. If there is still some dry ingredients in the

bottom

> of your mixer, dump it on the counter and mix it in by hand. You may need

to

> add a Tbsp or so more water. Knead about 10 times, break into 5 balls.

This

> freezes well. Thaw in microwave, takes less than a minute to thaw. I roll

my

> pie crust out on a pastry cloth with flour on it. I also cover my rolling

> pin with a pastry sleeve. It isn't necessary, but it comes up easily off

the

> cloth without tearing. Use as little flour added as possible when rolling

it

> out; it will toughen it up. It is a very favorful flakey crust.

>

> Jerilyn's note: I love this recipe because it makes 5 balls, which I can

> either freeze for later or sometimes I just make 2-4 pies all at once. I

> don't have a mixer so I use my Cuisenart with the dough blade for this.

>

> Jerilyn in CO

>

>

>

>

>