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If you have trouble unsubscribing go directly to www.onelist.com and click

help and you will get specific instructions. I'm writing this because some

members have sent numerous emails like yours and seem to get so frustrated

because it doesn't seem to work.

sincerely lee

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  • 8 months later...
Guest guest

Irishladi

Im only getting off the list because I havent been posting to it and i am

recouping from my liver transplant 2 months ago and have lots to do and it is

just adding mail right now.. I will be back im sure.. thanks for the

encouragement though:) Janis

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Guest guest

In a message dated 6/24/00 12:39:11 PM Eastern Daylight Time, jandog7@...

writes:

<<

Irishladi

Im only getting off the list because I havent been posting to it and i am

recouping from my liver transplant 2 months ago and have lots to do and it

is

just adding mail right now.. >>

I wish you well......and am so happy you did well. i`d sure like to hear

about the transplant, when you feel well enough to tell us.

debmc

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  • 7 months later...
  • 2 months later...
  • 5 months later...

PLEASE REMOVE MY ADDRESS FROM YOUR LISTING..

--- mmztcass@... wrote:

> Can anyone tell me if the flushing from the niacin

> will pass through

> the breast milk and cause the baby to flush as well?

> I'm thinking of

> starting the lowest dose possible and work up to

> maybe 100 mgs. per

> day. I don't want the baby to start having the

> flushes. I still have

> not gotten the individual B bottles yet, just

> sticking with the

> B-Complex which has Niacinamide in it instead of

> niacin. I do know

> niacin is the better to go with the copper than the

> niacinamide. I

> didn't see anything to answer my question when I was

> searching through

> the archive for this list.

>

> Thanks,

>

>

>

__________________________________________________

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Did you sent e-mail here requesting to be unsubscribed?

hyperthyroidism-unsubscribeegroups

It that is not working, go to " Edit My Membership " and change

settings to " no e-mail. " Then you will never know you are a member.

> > > Can anyone tell me if the flushing from the niacin

> > > will pass through

> > > the breast milk and cause the baby to flush as well?

> > > I'm thinking of

> > > starting the lowest dose possible and work up to

> > > maybe 100 mgs. per

> > > day. I don't want the baby to start having the

> > > flushes. I still have

> > > not gotten the individual B bottles yet, just

> > > sticking with the

> > > B-Complex which has Niacinamide in it instead of

> > > niacin. I do know

> > > niacin is the better to go with the copper than the

> > > niacinamide. I

> > > didn't see anything to answer my question when I was

> > > searching through

> > > the archive for this list.

> > >

> > > Thanks,

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

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  • 10 months later...
  • 4 years later...

Please take me out of this group.

Actually i'm going out of town for a long vacation where i cannot check my

mails frequently.

Thanks

Rama

" claudia.morris " <claudia.morris@...> wrote:

If you find someone...PLEASE LET ME KNOW! This IS uncharted waters,

and very few MDs will know what to do with this. I'm having a heck

of a time. Even the nutritionalists will look at you oddly re:

supplements of vit E and omega 3.

There are actually reference ranges for everything. So you will know

if there are deficiencies etc. If any of the vit ADEK are low (even

low- normal), you will want to supplement. If the celiac panel is

positive, you will need a referral to a gastrointestinal specialist

for further evaluation of celiac disease...and genetic HLA testing

could also be helpful. If it is determined that it is not " celiac

disease " (biopsy negative) but there are antibodies to gliadin

(wheat/gluten) in a child with a neurological condition like

apraxia...going gluten'casein free is worth a try. There is a DQ1

HLA gluten-sensitivity gene (determined on a blood or buccal swab

test) that is associated with neurological complications...I am

wondering if this is a marker in some of our kids? There are a few

apraxic families out there with pending HLA panels, and if all these

kids have DQ1 - it would be too much of a coincidence, and this may

turn out to be something with overlapping symptoms of celiac

disease, but a different condition altogether. Already there are way

too many apraxic and apraxic/PDD children that I know personally,

with positive anti-gliadin IgG and gut issues and/or gluten

sensitivity. Such a marker would be great for screening if it

reflected kids who will respond to gluten-free diet, carnitine, high-

dose omega 3 and vit E (ph's oil). I don't think there is any

vit E level in blood that would dissuade me from trying vitamin E

since vitamin E is so safe, and our kids may need higher doses...we

just don't know. Unfortunately plasma vitamin E levels do not well

reflect vitamin E in the red blood cell or in the nervous system and

other organs, where it needs to be.

Low carnitine levels (even low normal), if identified...should be

treated with carnitine supplements. (Prescription and not over the

counter).

But since I am particularly interested in understanding how all

these parameters tie into apraxia...I can help you with

interpretations. So far I've heard about a handful of apraxic kids

with a variety of fat soluable vitamin deficiencies (including

rickets), positive celiac panels and apraxic kids with significant

carnitine deficiencies. This is telling me that our kids REALLY

deserve a medical work-up in addition to the intensive 1:1 ST and OT.

-

> Hi all -

> Pedi thought blood tests that listed were a great idea and

as

> he said " you guys are charting unknown territory " so he was all

for it.

> He had to look some up, etc. and luckily for us admitted that,

although

> he could read the results, he wouldn't be able to interpret the

results

> correctly or see non-obvious things.

>

> So what type of doc am I looking for now? Nutrionist? Most of the

> metabolic people at boston children's are diabetes related, etc. I

> don't need a referral and can go almost anywhere. I just want to

ID the

> right kind of doctor to look at this.

>

> Any ideas?

> Thanking in advance....

>

>

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Please take me out of this group.

Actually i'm going out of town for a long vacation where i cannot check my

mails frequently.

Thanks

Rama

" claudia.morris " <claudia.morris@...> wrote:

If you find someone...PLEASE LET ME KNOW! This IS uncharted waters,

and very few MDs will know what to do with this. I'm having a heck

of a time. Even the nutritionalists will look at you oddly re:

supplements of vit E and omega 3.

There are actually reference ranges for everything. So you will know

if there are deficiencies etc. If any of the vit ADEK are low (even

low- normal), you will want to supplement. If the celiac panel is

positive, you will need a referral to a gastrointestinal specialist

for further evaluation of celiac disease...and genetic HLA testing

could also be helpful. If it is determined that it is not " celiac

disease " (biopsy negative) but there are antibodies to gliadin

(wheat/gluten) in a child with a neurological condition like

apraxia...going gluten'casein free is worth a try. There is a DQ1

HLA gluten-sensitivity gene (determined on a blood or buccal swab

test) that is associated with neurological complications...I am

wondering if this is a marker in some of our kids? There are a few

apraxic families out there with pending HLA panels, and if all these

kids have DQ1 - it would be too much of a coincidence, and this may

turn out to be something with overlapping symptoms of celiac

disease, but a different condition altogether. Already there are way

too many apraxic and apraxic/PDD children that I know personally,

with positive anti-gliadin IgG and gut issues and/or gluten

sensitivity. Such a marker would be great for screening if it

reflected kids who will respond to gluten-free diet, carnitine, high-

dose omega 3 and vit E (ph's oil). I don't think there is any

vit E level in blood that would dissuade me from trying vitamin E

since vitamin E is so safe, and our kids may need higher doses...we

just don't know. Unfortunately plasma vitamin E levels do not well

reflect vitamin E in the red blood cell or in the nervous system and

other organs, where it needs to be.

Low carnitine levels (even low normal), if identified...should be

treated with carnitine supplements. (Prescription and not over the

counter).

But since I am particularly interested in understanding how all

these parameters tie into apraxia...I can help you with

interpretations. So far I've heard about a handful of apraxic kids

with a variety of fat soluable vitamin deficiencies (including

rickets), positive celiac panels and apraxic kids with significant

carnitine deficiencies. This is telling me that our kids REALLY

deserve a medical work-up in addition to the intensive 1:1 ST and OT.

-

> Hi all -

> Pedi thought blood tests that listed were a great idea and

as

> he said " you guys are charting unknown territory " so he was all

for it.

> He had to look some up, etc. and luckily for us admitted that,

although

> he could read the results, he wouldn't be able to interpret the

results

> correctly or see non-obvious things.

>

> So what type of doc am I looking for now? Nutrionist? Most of the

> metabolic people at boston children's are diabetes related, etc. I

> don't need a referral and can go almost anywhere. I just want to

ID the

> right kind of doctor to look at this.

>

> Any ideas?

> Thanking in advance....

>

>

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  • 8 months later...
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Click unsubscribe at the bottom of this e-mail message.

In a message dated 6/18/2007 9:51:31 A.M. Eastern Daylight Time,

dragonfly371@... writes:

Hi

Could you please remove my email address from your list? Thank you!

_dragonfly371@dragonf_ (mailto:dragonfly371@...)

__________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from

AOL at AOL.com.

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

************************************** See what's free at http://www.aol.com.

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  • 8 months later...

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