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Re: Another bizarre question or two

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On Jan 1, 2006, at 6:25 PM, netsukeme wrote:

> I was reading down the list on this Fibrofix website and stopped at

> no. 29, regarding sound and light. Some of this seems so related to

> migraine, I wondered if there IS connection between migraine and FM.

>

> And all this reminded me of when I was a child and I was so very

> sensitive to sound. Normal everyday sounds in the neighborhood, like

> the sounds of construction with a new house going up, would just

> drive me wild. The sound seemed to actually hurt my brain somehow

> and I remember covering my ears to try to keep out teh sound. But it

> was just normal noises of a house being constructed. Does anyone

> else remember this kind of thing or notice it today? Sensitivity to

> sound?

What you're describing is hypercusis, which is noted (IIRC) in the

Canadian criteria as one effect of the CNS damage done by ME. I'm a

bit more than slightly affected by it myself.

Basically, what happens is that most of us have developed

neurological filters that allow our brains to prioritize incoming

sound. You can sit in a restaurant, and zero in on the sound of your

lunch companion, while tuning out the voices of nearby diners, the

clink of china, the whooshing of the air conditioner, and other non-

important noise. If your filters are working right, you don't even

notice these distractions.

ME attacks the part of the middle and lower brain where these filters

live, and can erode the finely-tuned and well-adapted nerves that

serve this function. It is, however, not the only cause of hypercusis.

Some people are born with this problem (my son is among them); it can

be hereditary, so if you had it as a kid, odds are good you have a

parent or grandparent with it as well (my dad had it, too).

Hypercusis is the leading feature of central auditory processing

disorder (CAPD), which is one of the main causes of dyslexia. Not

everyone with hypercusis is dyslexic; but if you're dyslexic, there's

a close to even chance you've got CAPD. There are a number of other

cognitive processing problems that also go with it: CAPD sufferers

may also have problems with sequencing (remembering things in order,

or keeping track of a list), keeping their physical space organized,

and/or remembering cause and effect relationships. You can see where

these problems might get in the way of learning <g>.

It's also very common for people to acquire CAPD as they age. Women

undergoing menopause, in particular, may find themselves far more

irritated by noise and less able to filter. This condition often

responds to hormone replacement therapy (as do many ME-related issues

in women).

There are also auditory therapies that can help rebuild the filters.

Not all audiologists know how to work with hypercusis or CAPD; even

fewer offer auditory integration therapy. (My son's condition -- not

just his hearing, but also the cognitive issues surrounding his

dyslexia -- were greatly improved by AIT.) If this becomes a big

enough problem, it may be worth looking into.

Sara

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>

> > I was reading down the list on this Fibrofix website and stopped

at

> > no. 29, regarding sound and light. Some of this seems so related

to

> > migraine, I wondered if there IS connection between migraine and

FM.

> >

> > And all this reminded me of when I was a child and I was so very

> > sensitive to sound. Normal everyday sounds in the neighborhood,

like

> > the sounds of construction with a new house going up, would just

> > drive me wild. The sound seemed to actually hurt my brain somehow

> > and I remember covering my ears to try to keep out teh sound.

But it

> > was just normal noises of a house being constructed. Does anyone

> > else remember this kind of thing or notice it today? Sensitivity

to

> > sound?

>

> What you're describing is hypercusis, which is noted (IIRC) in the

> Canadian criteria as one effect of the CNS damage done by ME. I'm

a

> bit more than slightly affected by it myself.

>

> Basically, what happens is that most of us have developed

> neurological filters that allow our brains to prioritize incoming

> sound. You can sit in a restaurant, and zero in on the sound of

your

> lunch companion, while tuning out the voices of nearby diners, the

> clink of china, the whooshing of the air conditioner, and other non-

> important noise. If your filters are working right, you don't even

> notice these distractions.

>

> ME attacks the part of the middle and lower brain where these

filters

> live, and can erode the finely-tuned and well-adapted nerves that

> serve this function. It is, however, not the only cause of

hypercusis.

>

> Some people are born with this problem (my son is among them); it

can

> be hereditary, so if you had it as a kid, odds are good you have a

> parent or grandparent with it as well (my dad had it, too).

>

> Hypercusis is the leading feature of central auditory processing

> disorder (CAPD), which is one of the main causes of dyslexia. Not

> everyone with hypercusis is dyslexic; but if you're dyslexic,

there's

> a close to even chance you've got CAPD. There are a number of

other

> cognitive processing problems that also go with it: CAPD sufferers

> may also have problems with sequencing (remembering things in

order,

> or keeping track of a list), keeping their physical space

organized,

> and/or remembering cause and effect relationships. You can see

where

> these problems might get in the way of learning <g>.

>

> It's also very common for people to acquire CAPD as they age.

Women

> undergoing menopause, in particular, may find themselves far more

> irritated by noise and less able to filter. This condition often

> responds to hormone replacement therapy (as do many ME-related

issues

> in women).

>

> There are also auditory therapies that can help rebuild the

filters.

> Not all audiologists know how to work with hypercusis or CAPD;

even

> fewer offer auditory integration therapy. (My son's condition --

not

> just his hearing, but also the cognitive issues surrounding his

> dyslexia -- were greatly improved by AIT.) If this becomes a big

> enough problem, it may be worth looking into.

>

> Sara

<There are a number of other cognitive processing problems that also

go with it...>

This is fascinating, Sara. Thank you so much. I'm not dyslexic, but

I've always had what I called " comprehension problems " when reading.

Examples: All those nasty word problems in math classes; comparable

things in physical sciences. I always wondered what was up with me,

because they were my only pitfalls. Thank you again.

Champaign IL

>

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On Jan 1, 2006, at 9:42 PM, netsukeme wrote:

>

> <There are a number of other cognitive processing problems that also

> go with it...>

>

> This is fascinating, Sara. Thank you so much. I'm not dyslexic, but

> I've always had what I called " comprehension problems " when reading.

> Examples: All those nasty word problems in math classes; comparable

> things in physical sciences. I always wondered what was up with me,

> because they were my only pitfalls. Thank you again.

Word problems are often a biggie for people with CAPD. Translating

images to words and back again can be a glitchy process; and that

sequencing thing can get in the way of manipulating the data

effectively once you've gotten it into symbol form.

My brilliant, funny, charming, and incredibly inventive son had a

very extreme case -- so bad it made him almost non-functional,

despite his 140+ IQ. You couldn't tell him to go to his room and get

three things; he'd have forgotten them all by the time he hit the top

of the stairs. At eight, he only knew about a dozen letters of the

alphabet reliably. This year, at 12, after about $50K of remediation

(out of our own pocket -- like we needed *this* on top of my ME!),

he's finally starting to read with some fluency, and write a bit as

well...though there's still some confusion about the months of the

year (*sigh*). Until very recently, anything that required

memorizing facts in order was likely to stymie him.

It's been hell...but this year, I think we're finally starting to get

to the end of a very long tunnel. In fact, the kid who was too stupid

for kindergarten is now in Grade 7, and on track to earn an

International Baccalaureate diploma. Discovering and treating his

CAPD was the key to it all. (We still can't take him into noisy

restaurants, though.)

Here are a few links to get you started:

On hypercusis (sometimes also called hyperacusis) generally: <http://

www.hyperacusis.net/hyperacusis/home/default.asp>

On hypercusis, CAPD, and AIT: <http://www.judithpaton.com/>

(Full disclosure: this is my son's audiologist. She also happens to

be one of the country's top experts, and her site is a good one.)

Sara

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> >

> > <There are a number of other cognitive processing problems that

also

> > go with it...>

> >

> > This is fascinating, Sara. Thank you so much. I'm not dyslexic,

but

> > I've always had what I called " comprehension problems " when

reading.

> > Examples: All those nasty word problems in math classes;

comparable

> > things in physical sciences. I always wondered what was up with

me,

> > because they were my only pitfalls. Thank you again.

>

> Word problems are often a biggie for people with CAPD. Translating

> images to words and back again can be a glitchy process; and that

> sequencing thing can get in the way of manipulating the data

> effectively once you've gotten it into symbol form.

>

> My brilliant, funny, charming, and incredibly inventive son had a

> very extreme case -- so bad it made him almost non-functional,

> despite his 140+ IQ. You couldn't tell him to go to his room and

get

> three things; he'd have forgotten them all by the time he hit the

top

> of the stairs. At eight, he only knew about a dozen letters of the

> alphabet reliably. This year, at 12, after about $50K of

remediation

> (out of our own pocket -- like we needed *this* on top of my ME!),

> he's finally starting to read with some fluency, and write a bit

as

> well...though there's still some confusion about the months of the

> year (*sigh*). Until very recently, anything that required

> memorizing facts in order was likely to stymie him.

>

> It's been hell...but this year, I think we're finally starting to

get

> to the end of a very long tunnel. In fact, the kid who was too

stupid

> for kindergarten is now in Grade 7, and on track to earn an

> International Baccalaureate diploma. Discovering and treating his

> CAPD was the key to it all. (We still can't take him into noisy

> restaurants, though.)

>

> Here are a few links to get you started:

>

> On hypercusis (sometimes also called hyperacusis) generally:

<http://

> www.hyperacusis.net/hyperacusis/home/default.asp>

>

> On hypercusis, CAPD, and AIT: <http://www.judithpaton.com/>

> (Full disclosure: this is my son's audiologist. She also happens

to

> be one of the country's top experts, and her site is a good one.)

>

> Sara

>

Thank you. What you said about your son further stymies me a bit.

Someone else (off-list) had said she cried as a child at Fourth of

July fireworks, and that reminded me that MY son had done that only

worse. I took him one year--I think he was about 3--and he turned

beet red in the face and screamed such bloody murder, at the sound of

the first display going off, I had to get him out of the stadium as

fast as possible, and everyone around us stared at me like I was

torturing him or something. It was most strange--his response was so

extreme. This started me thinking that maybe my son inherited

a " sound thing " from me.

And then I read your post above about your son. But my son didn't

have those problems at all. He was even far ahead of everyone in his

age group. In fact, by the time he was 6 or so, he read much faster

than I. (Of course, I have the " reading comprehension " problem.)

But how could he excel so much (and he did, all through school, when

he decided to do it--a whiz, just brilliant), if there was this sound

sensitivity there from the beginning? There seems to be more in the

mix. Or maybe his " sound thing " wasn't the same as my " sound

thing. " Or something!....

Champaign IL

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Sara

THanks for giving a recognized name to my " Scrambled Brain Syndrome "

mjh

In a message dated 1/2/2006 12:43:44 PM Eastern Standard Time,

mercuria@... writes:

A CAPD-knowledgeable audiologist is your best bet here if you're

trying to get to the bottom of all the various " sound things " people

have. Certainly, if your son starts losing track of or scrambling

data -- facts, comprehension, objects, and so on -- it's something

you'll want to look into. More to the point, though, as an ME

patient, this is something you need to monitor in yourself, since ME

and aging are likely to make it worse over time.

Sara

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

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p5p is considered the active form of vitamin B6

_http://search.store./cgi-bin/nsearch?follow-pro=1 & vwcatalog=iherb & ca

talog=iherb & query=p5p_

(http://search.store./cgi-bin/nsearch?follow-pro=1 & vwcatalog=iherb & cata\

log=iherb & query=p5p)

In a message dated 1/2/2006 1:43:21 PM Eastern Standard Time,

netsuke@... writes:

What is " p5p " ? Thanks, Nil.

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

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For some people, B6 does not work but it's active form, p5p, does. Depends

on your body.

In a message dated 1/2/2006 2:38:38 PM Eastern Standard Time,

netsuke@... writes:

Is it different than taking some B6?

>

>

>

>

> p5p is considered the active form of vitamin B6

>

> _http://search.store./cgi-bin/nsearch?follow-

pro=1 & vwcatalog=iherb & ca

> talog=iherb & query=p5p_

> (http://search.store./cgi-bin/nsearch?follow-

pro=1 & vwcatalog=iherb & catalog=iherb & query=p5p)

>

>

> In a message dated 1/2/2006 1:43:21 PM Eastern Standard Time,

> netsuke@a... writes:

>

> What is " p5p " ? Thanks, Nil.

>

>

>

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

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Here's a label info. It includes the necessary cofactors, cost is $7.79

P-5-P, Now Foods, 50 mg., 60 Tablets

• Coenzym B6

• Enteric Coated with Magnesium and B2 Cofactors

• A Dietary Supplement

Vitamin B6 (pyridoxine) acts primarily as an enzyme catalyst in many body

functions including energy metabolism, neurotransmitter functions. Before it

can be used for this purpose it must be converted into its coenzyme form from

the liver. P-5-P eliminates this step by providing B6 in its converted form,

allowing for greater bioavailability. This product is enterically coated to

avoid potency loss during digestion.

Supplement Facts

Serving Size 1 Tablet

Amount Per Serving %DV

Riboflavin (Vitamin B-2) 17 mg

1000%

Coenzyme Vitamin B-6 33 mg

1650%

(from 50 mg Pyridoxal-5-Phosphate)

Magnesium 100 mg

25%

(as 75% Magnesium Oxide and

25% Magnesium Taurinate)

-----------------------------------------

B6 is much, much cheaper, but useless to you if you are missing or deficient

in the enzyme needed for its conversion to p5p

In a message dated 1/2/2006 3:08:16 PM Eastern Standard Time,

netsuke@... writes:

Is it something you just have to try, to figure out? Or is it the

case that p5p works all the time for everyone, but B6 doesn't, so p5p

is the better bet if you're just starting out? I bet there's a cost

difference, right?

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

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In a message dated 1/2/2006 3:40:03 PM Eastern Standard Time,

netsuke@... writes:

Okay. That's not so bad in cost. I'm still confused by the " from "

in this...

<<

Coenzyme Vitamin B-6 33 mg

1650%

(from 50 mg Pyridoxal-5-Phosphate)

>>

That sounds like it's not p5p, but vitamin B6 derived FROM p5p, so

it's still vitamin B6 and not p5p. Understand...or is this one of

those picayune things I should just shut up about?

What we are after here is further along the pathway

B^ >> p5p >>> Co B6

this is a p5p product that will yield a specific amount of the coenzyme.

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

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yes,me too.I never liked bright light in the mornings and it took some time

for me to adopt myself to light in the mornings.I also did not wish to hear

any noises. That is why I thought I was probably zinc deficient most of my

life.Pyroluia?No migranes.My light an sound sensitivity went crazy over the

last years as my illness progressed. I started taking zinc and p5p this year

and my noise and sound sensitivities decreased. I am much better. zinc

and/or p5p must be helping.

best wishes.

nil

Another bizarre question or two

>I was reading down the list on this Fibrofix website and stopped at

> no. 29, regarding sound and light. Some of this seems so related to

> migraine, I wondered if there IS connection between migraine and FM.

>

> And all this reminded me of when I was a child and I was so very

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On Jan 1, 2006, at 11:56 PM, netsukeme wrote:

> Thank you. What you said about your son further stymies me a bit.

> Someone else (off-list) had said she cried as a child at Fourth of

> July fireworks, and that reminded me that MY son had done that only

> worse. I took him one year--I think he was about 3--and he turned

> beet red in the face and screamed such bloody murder, at the sound of

> the first display going off, I had to get him out of the stadium as

> fast as possible, and everyone around us stared at me like I was

> torturing him or something. It was most strange--his response was so

> extreme. This started me thinking that maybe my son inherited

> a " sound thing " from me.

>

> And then I read your post above about your son. But my son didn't

> have those problems at all. He was even far ahead of everyone in his

> age group. In fact, by the time he was 6 or so, he read much faster

> than I. (Of course, I have the " reading comprehension " problem.)

> But how could he excel so much (and he did, all through school, when

> he decided to do it--a whiz, just brilliant), if there was this sound

> sensitivity there from the beginning? There seems to be more in the

> mix. Or maybe his " sound thing " wasn't the same as my " sound

> thing. " Or something!....

Hypercusis manifests in a lot of different ways, not all of which are

CAPD. And CAPD also has a lot of permutations, not all of which

include dyslexia. (There are a lot of people in my family with

hypercusis, and quite a few with strong symptoms of CAPD. But my son

is the only dyslexic in the bunch.)

A CAPD-knowledgeable audiologist is your best bet here if you're

trying to get to the bottom of all the various " sound things " people

have. Certainly, if your son starts losing track of or scrambling

data -- facts, comprehension, objects, and so on -- it's something

you'll want to look into. More to the point, though, as an ME

patient, this is something you need to monitor in yourself, since ME

and aging are likely to make it worse over time.

Sara

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What is " p5p " ? Thanks, Nil.

>

> yes,me too.I never liked bright light in the mornings and it took

some time

> for me to adopt myself to light in the mornings.I also did not wish

to hear

> any noises. That is why I thought I was probably zinc deficient

most of my

> life.Pyroluia?No migranes.My light an sound sensitivity went crazy

over the

> last years as my illness progressed. I started taking zinc and p5p

this year

> and my noise and sound sensitivities decreased. I am much better.

zinc

> and/or p5p must be helping.

> best wishes.

> nil

> Another bizarre question or two

>

>

> >I was reading down the list on this Fibrofix website and stopped at

> > no. 29, regarding sound and light. Some of this seems so related

to

> > migraine, I wondered if there IS connection between migraine and

FM.

> >

> > And all this reminded me of when I was a child and I was so very

>

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< More to the point, though, as an ME patient, this is something you

need to monitor in yourself, since ME and aging are likely to make it

worse over time. >

Yes, well, most days I feel like I'm about 112, but I know what you

mean, so thank you.

>

> > Thank you. What you said about your son further stymies me a bit.

> > Someone else (off-list) had said she cried as a child at Fourth of

> > July fireworks, and that reminded me that MY son had done that

only

> > worse. I took him one year--I think he was about 3--and he

turned

> > beet red in the face and screamed such bloody murder, at the

sound of

> > the first display going off, I had to get him out of the stadium

as

> > fast as possible, and everyone around us stared at me like I was

> > torturing him or something. It was most strange--his response

was so

> > extreme. This started me thinking that maybe my son inherited

> > a " sound thing " from me.

> >

> > And then I read your post above about your son. But my son didn't

> > have those problems at all. He was even far ahead of everyone in

his

> > age group. In fact, by the time he was 6 or so, he read much

faster

> > than I. (Of course, I have the " reading comprehension " problem.)

> > But how could he excel so much (and he did, all through school,

when

> > he decided to do it--a whiz, just brilliant), if there was this

sound

> > sensitivity there from the beginning? There seems to be more in

the

> > mix. Or maybe his " sound thing " wasn't the same as my " sound

> > thing. " Or something!....

>

> Hypercusis manifests in a lot of different ways, not all of which

are

> CAPD. And CAPD also has a lot of permutations, not all of which

> include dyslexia. (There are a lot of people in my family with

> hypercusis, and quite a few with strong symptoms of CAPD. But my

son

> is the only dyslexic in the bunch.)

>

> A CAPD-knowledgeable audiologist is your best bet here if you're

> trying to get to the bottom of all the various " sound things "

people

> have. Certainly, if your son starts losing track of or scrambling

> data -- facts, comprehension, objects, and so on -- it's something

> you'll want to look into. More to the point, though, as an ME

> patient, this is something you need to monitor in yourself, since

ME

> and aging are likely to make it worse over time.

>

> Sara

>

>

>

>

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Is it different than taking some B6?

>

>

>

>

> p5p is considered the active form of vitamin B6

>

> _http://search.store./cgi-bin/nsearch?follow-

pro=1 & vwcatalog=iherb & ca

> talog=iherb & query=p5p_

> (http://search.store./cgi-bin/nsearch?follow-

pro=1 & vwcatalog=iherb & catalog=iherb & query=p5p)

>

>

> In a message dated 1/2/2006 1:43:21 PM Eastern Standard Time,

> netsuke@a... writes:

>

> What is " p5p " ? Thanks, Nil.

>

>

>

>

>

>

>

> mjh

> " The Basil Book "

> http://foxhillfarm.us/FireBasil/

>

>

>

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50 mg p5p has much more positive effect for me than 100 mg B6. It is said

that some people have problems converting b6 to p5p. Enzyme missing or

something.I have mal absorption problems and poor digestion.

best wishes

nil

Re: Another bizarre question or two

> Is it different than taking some B6?

>

>

>

>

>>

>>

>>

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Is it something you just have to try, to figure out? Or is it the

case that p5p works all the time for everyone, but B6 doesn't, so p5p

is the better bet if you're just starting out? I bet there's a cost

difference, right?

> >

> >

> >

> >

> > p5p is considered the active form of vitamin B6

> >

> > _http://search.store./cgi-bin/nsearch?follow-

> pro=1 & vwcatalog=iherb & ca

> > talog=iherb & query=p5p_

> > (http://search.store./cgi-bin/nsearch?follow-

> pro=1 & vwcatalog=iherb & catalog=iherb & query=p5p)

> >

> >

> > In a message dated 1/2/2006 1:43:21 PM Eastern Standard Time,

> > netsuke@a... writes:

> >

> > What is " p5p " ? Thanks, Nil.

> >

> >

> >

>

>

>

>

> mjh

> " The Basil Book "

> http://foxhillfarm.us/FireBasil/

>

>

>

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Share on other sites

Okay. That's not so bad in cost. I'm still confused by the " from "

in this...

<<

Coenzyme Vitamin B-6 33 mg

1650%

(from 50 mg Pyridoxal-5-Phosphate)

>>

That sounds like it's not p5p, but vitamin B6 derived FROM p5p, so

it's still vitamin B6 and not p5p. Understand...or is this one of

those picayune things I should just shut up about?

>

>

>

>

>

> Here's a label info. It includes the necessary cofactors, cost is

$7.79

> P-5-P, Now Foods, 50 mg., 60 Tablets

> • Coenzym B6

> • Enteric Coated with Magnesium and B2 Cofactors

> • A Dietary Supplement

> Vitamin B6 (pyridoxine) acts primarily as an enzyme catalyst in

many body

> functions including energy metabolism, neurotransmitter

functions. Before it

> can be used for this purpose it must be converted into its

coenzyme form from

> the liver. P-5-P eliminates this step by providing B6 in its

converted form,

> allowing for greater bioavailability. This product is enterically

coated to

> avoid potency loss during digestion.

> Supplement Facts

> Serving Size 1 Tablet

> Amount Per Serving %DV

> Riboflavin (Vitamin B-2) 17

mg

> 1000%

> Coenzyme Vitamin B-6 33

mg

> 1650%

> (from 50 mg Pyridoxal-5-Phosphate)

> Magnesium

100 mg

> 25%

> (as 75% Magnesium Oxide and

> 25% Magnesium Taurinate)

> -----------------------------------------

> B6 is much, much cheaper, but useless to you if you are missing or

deficient

> in the enzyme needed for its conversion to p5p

>

>

> In a message dated 1/2/2006 3:08:16 PM Eastern Standard Time,

> netsuke@a... writes:

>

> Is it something you just have to try, to figure out? Or is it the

> case that p5p works all the time for everyone, but B6 doesn't, so

p5p

> is the better bet if you're just starting out? I bet there's a

cost

> difference, right?

>

>

>

>

>

>

> mjh

> " The Basil Book "

> http://foxhillfarm.us/FireBasil/

>

>

>

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I would think there would be tests for testing related enzyme deficiency

but if you can not take them than you might try.

best wishes

nil

Re: Another bizarre question or two

> Is it something you just have to try, to figure out? Or is it the

> case that p5p works all the time for everyone, but B6 doesn't, so p5p

> is the better bet if you're just starting out? I bet there's a cost

> difference, right?

>

>

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Share on other sites

>

>

>

> In a message dated 1/2/2006 3:40:03 PM Eastern Standard Time,

> netsuke@a... writes:

>

> Okay. That's not so bad in cost. I'm still confused by

the " from "

> in this...

>

> <<

> Coenzyme Vitamin B-6 33 mg

> 1650%

> (from 50 mg Pyridoxal-5-Phosphate)

> >>

>

> That sounds like it's not p5p, but vitamin B6 derived FROM p5p, so

> it's still vitamin B6 and not p5p. Understand...or is this one of

> those picayune things I should just shut up about?

>

>

>

>

> What we are after here is further along the pathway

>

> B^ >> p5p >>> Co B6

>

> this is a p5p product that will yield a specific amount of the

coenzyme.

>

> mjh

> " The Basil Book "

> http://foxhillfarm.us/FireBasil/

>

Okay. Thank you, mjh. I need to mull coenzymes more.

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