Re: was Nell/Viral Issues Surfaced - HELP - What To Do Now?

[Guest guest]

We started with 25 mgs of P5P and increased to 50 mgs with a good amount of

improvement. The Baker/Pangborn book mentions that P5P is 10 times more powerful

than B6, so I wouldn't go higher as they had some research that said 500 mgs of

B6 has been tested in people for 10 Years and no reports of problems. We gave

that amount for about 5 months, now are back down to about 10 mgs of P5P.

Also, make sure to give a dose of B2 in at least 1/2 the amount of the B6 as if

you give an excess of B6 it will deplete the B2. Also give some consideration

to the magnesium, as B6 increases the need for magnesium and we get bedwetting

accidents here when we forget that rule, only time she has ever wet the bed at

night after being potty trained at 2.10 years. I think 350-500 mgs of magnesium

are adequate, depending on the kid and their constipation/diarrhea issues. Ours

tends more toward constipation so, hence the higher amount.

Good luck,

[ ] was Nell/Viral Issues Surfaced - HELP - What

To Do Now?

Interesting, . Asher certainly did worse on the citrate form

of supplements and did better when we added P5P in addition to the

coenzyme form of B vitamins we give. From observation, I would say

that ammonia decreased. I think ammonia has been a big, in fact

very big, problem here. I shudder to think about it, in fact. And,

obviously, we have a bacteria problem.

Thank you for that post. I was not keen on going LOD. As far as

penis pain goes, should I keep trying to up that to see if I am just

undersupplementing for oxalate purposes? It persists despite at

least partial resolution of other possibly associated problems....

Anne

>

> > I hate the diet part of all this, really. Coming from the camp

of

> > texture aversion, I am still thrilled that Asher eats real

food, and

> > real food only.

>

> Yes. If n ever ate more than 5 foods at once I think I would

> explode from happiness.

>

> > I do think that LOD might be good for him in the

> > short term and have implemented some of their stuff around

here -

> > calcium, VSL, etc., but hate to take out some of the stuff he

eats.

>

> Did you notice any difference with those changes? One thing I

meant to

> say was that once I got the LOD food list I saw there was no way

I

> could rally enough enthusiasm to try it during the summer, not

when so

> much wonderful food would be forbidden. I couldn't go without

> homegrown tomatoes, garlic, and parsley. And blueberries! So I

was

> thinking maybe I would give it a 2-3 week trial in the fall when

the

> garden is over.

>

> > I think he is reasonably back.

>

> Good. Let us know how tomorrow goes.

>

> Nell

>

>

[Guest guest]

I have been using a supplement that contains:

17 mgs B-2

33 mgs b-6 (from 50 mgs P5P) WHAT DOES THAT MEAN?

100 mgs Magnesium

I give 1/2 of a cap with each meal. Does this sound right? We

total out at about 450-500 mgs magnesium (not considering food

sources), some oxide (from P5P supp), some taurinate (from P5P

supp), some glycinate, and some citrate.

Thanks.

Anne

> >

> > > I hate the diet part of all this, really. Coming from the

camp

> of

> > > texture aversion, I am still thrilled that Asher eats real

> food, and

> > > real food only.

> >

> > Yes. If n ever ate more than 5 foods at once I think I

would

> > explode from happiness.

> >

> > > I do think that LOD might be good for him in the

> > > short term and have implemented some of their stuff around

> here -

> > > calcium, VSL, etc., but hate to take out some of the stuff

he

> eats.

> >

> > Did you notice any difference with those changes? One thing I

> meant to

> > say was that once I got the LOD food list I saw there was no

way

> I

> > could rally enough enthusiasm to try it during the summer, not

> when so

> > much wonderful food would be forbidden. I couldn't go without

> > homegrown tomatoes, garlic, and parsley. And blueberries! So I

> was

> > thinking maybe I would give it a 2-3 week trial in the fall

when

> the

> > garden is over.

> >

> > > I think he is reasonably back.

> >

> > Good. Let us know how tomorrow goes.

> >

> > Nell

> >

> >

[Guest guest]

Ammonia can be a problem and you usually get big improvements when you get rid

of it, but Andy told me it does not cause any lasting harm, regardless of what I

have read. ASD kids normally have low to mid levels of ammonia problems, not the

sky high amounts you read about with regard to Reyes Syndrome that produces

brain damage. Hope that eases your mind.

If it helps, ours was uncharacteristically quiet and low energy when the ammonia

increased, but returned to her completely ornery self within 3 days of

increasing the B6, magnesium and adding AKG.

[ ] was Nell/Viral Issues Surfaced - HELP - What

To Do Now?

Interesting, . Asher certainly did worse on the citrate form

of supplements and did better when we added P5P in addition to the

coenzyme form of B vitamins we give. From observation, I would say

that ammonia decreased. I think ammonia has been a big, in fact

very big, problem here. I shudder to think about it, in fact. And,

obviously, we have a bacteria problem.

Thank you for that post. I was not keen on going LOD. As far as

penis pain goes, should I keep trying to up that to see if I am just

undersupplementing for oxalate purposes? It persists despite at

least partial resolution of other possibly associated problems....

Anne

>

> > I hate the diet part of all this, really. Coming from the camp

of

> > texture aversion, I am still thrilled that Asher eats real

food, and

> > real food only.

>

> Yes. If n ever ate more than 5 foods at once I think I would

> explode from happiness.

>

> > I do think that LOD might be good for him in the

> > short term and have implemented some of their stuff around

here -

> > calcium, VSL, etc., but hate to take out some of the stuff he

eats.

>

> Did you notice any difference with those changes? One thing I

meant to

> say was that once I got the LOD food list I saw there was no way

I

> could rally enough enthusiasm to try it during the summer, not

when so

> much wonderful food would be forbidden. I couldn't go without

> homegrown tomatoes, garlic, and parsley. And blueberries! So I

was

> thinking maybe I would give it a 2-3 week trial in the fall when

the

> garden is over.

>

> > I think he is reasonably back.

>

> Good. Let us know how tomorrow goes.

>

> Nell

>

>

[Guest guest]

> >

> > > I hate the diet part of all this, really. Coming from the

camp

> of

> > > texture aversion, I am still thrilled that Asher eats real

> food, and

> > > real food only.

> >

> > Yes. If n ever ate more than 5 foods at once I think I

would

> > explode from happiness.

> >

> > > I do think that LOD might be good for him in the

> > > short term and have implemented some of their stuff around

> here -

> > > calcium, VSL, etc., but hate to take out some of the stuff

he

> eats.

> >

> > Did you notice any difference with those changes? One thing I

> meant to

> > say was that once I got the LOD food list I saw there was no

way

> I

> > could rally enough enthusiasm to try it during the summer, not

> when so

> > much wonderful food would be forbidden. I couldn't go without

> > homegrown tomatoes, garlic, and parsley. And blueberries! So I

> was

> > thinking maybe I would give it a 2-3 week trial in the fall

when

> the

> > garden is over.

> >

> > > I think he is reasonably back.

> >

> > Good. Let us know how tomorrow goes.

> >

> > Nell

> >

> >

[Guest guest]

More precisely, it says:

Coenzyme Vitamin B-6, 33 mg (from 50 mg Pyridoxal-5-Phosphate).

Sounds to me like Coenzyme B-6 + something else = P5P.

Anne

> > >

> > > > I hate the diet part of all this, really. Coming from the

> camp

> > of

> > > > texture aversion, I am still thrilled that Asher eats real

> > food, and

> > > > real food only.

> > >

> > > Yes. If n ever ate more than 5 foods at once I think I

> would

> > > explode from happiness.

> > >

> > > > I do think that LOD might be good for him in the

> > > > short term and have implemented some of their stuff around

> > here -

> > > > calcium, VSL, etc., but hate to take out some of the stuff

> he

> > eats.

> > >

> > > Did you notice any difference with those changes? One thing

I

> > meant to

> > > say was that once I got the LOD food list I saw there was no

> way

> > I

> > > could rally enough enthusiasm to try it during the summer,

not

> > when so

> > > much wonderful food would be forbidden. I couldn't go without

> > > homegrown tomatoes, garlic, and parsley. And blueberries! So

I

> > was

> > > thinking maybe I would give it a 2-3 week trial in the fall

> when

> > the

> > > garden is over.

> > >

> > > > I think he is reasonably back.

> > >

> > > Good. Let us know how tomorrow goes.

> > >

> > > Nell

> > >

> > >

[Guest guest]

How did you know the ammonia " cleared up " ?

I think maybe it takes an ornery person to love an ornery kid... :-)

Anne

> > >

> > > > I hate the diet part of all this, really. Coming from the

> camp

> > of

> > > > texture aversion, I am still thrilled that Asher eats real

> > food, and

> > > > real food only.

> > >

> > > Yes. If n ever ate more than 5 foods at once I think I

> would

> > > explode from happiness.

> > >

> > > > I do think that LOD might be good for him in the

> > > > short term and have implemented some of their stuff around

> > here -

> > > > calcium, VSL, etc., but hate to take out some of the stuff

> he

> > eats.

> > >

> > > Did you notice any difference with those changes? One thing

I

> > meant to

> > > say was that once I got the LOD food list I saw there was no

> way

> > I

> > > could rally enough enthusiasm to try it during the summer,

not

> > when so

> > > much wonderful food would be forbidden. I couldn't go without

> > > homegrown tomatoes, garlic, and parsley. And blueberries! So

I

> > was

> > > thinking maybe I would give it a 2-3 week trial in the fall

> when

> > the

> > > garden is over.

> > >

> > > > I think he is reasonably back.

> > >

> > > Good. Let us know how tomorrow goes.

> > >

> > > Nell

> > >

> > >

[Guest guest]

> > > >

> > > > > I hate the diet part of all this, really. Coming from

the

> > camp

> > > of

> > > > > texture aversion, I am still thrilled that Asher eats

real

> > > food, and

> > > > > real food only.

> > > >

> > > > Yes. If n ever ate more than 5 foods at once I think

I

> > would

> > > > explode from happiness.

> > > >

> > > > > I do think that LOD might be good for him in the

> > > > > short term and have implemented some of their stuff

around

> > > here -

> > > > > calcium, VSL, etc., but hate to take out some of the

stuff

> > he

> > > eats.

> > > >

> > > > Did you notice any difference with those changes? One

thing

> I

> > > meant to

> > > > say was that once I got the LOD food list I saw there was

no

> > way

> > > I

> > > > could rally enough enthusiasm to try it during the summer,

> not

> > > when so

> > > > much wonderful food would be forbidden. I couldn't go

without

> > > > homegrown tomatoes, garlic, and parsley. And blueberries!

So

> I

> > > was

> > > > thinking maybe I would give it a 2-3 week trial in the

fall

> > when

> > > the

> > > > garden is over.

> > > >

> > > > > I think he is reasonably back.

> > > >

> > > > Good. Let us know how tomorrow goes.

> > > >

> > > > Nell

> > > >

> > > >

[Guest guest]

> > > > >

> > > > > > I hate the diet part of all this, really. Coming from

> the

> > > camp

> > > > of

> > > > > > texture aversion, I am still thrilled that Asher eats

> real

> > > > food, and

> > > > > > real food only.

> > > > >

> > > > > Yes. If n ever ate more than 5 foods at once I

think

> I

> > > would

> > > > > explode from happiness.

> > > > >

> > > > > > I do think that LOD might be good for him in the

> > > > > > short term and have implemented some of their stuff

> around

> > > > here -

> > > > > > calcium, VSL, etc., but hate to take out some of the

> stuff

> > > he

> > > > eats.

> > > > >

> > > > > Did you notice any difference with those changes? One

> thing

> > I

> > > > meant to

> > > > > say was that once I got the LOD food list I saw there

was

> no

> > > way

> > > > I

> > > > > could rally enough enthusiasm to try it during the

summer,

> > not

> > > > when so

> > > > > much wonderful food would be forbidden. I couldn't go

> without

> > > > > homegrown tomatoes, garlic, and parsley. And

blueberries!

> So

> > I

> > > > was

> > > > > thinking maybe I would give it a 2-3 week trial in the

> fall

> > > when

> > > > the

> > > > > garden is over.

> > > > >

> > > > > > I think he is reasonably back.

> > > > >

> > > > > Good. Let us know how tomorrow goes.

> > > > >

> > > > > Nell

> > > > >

> > > > >

[Guest guest]

Letting a little cat out

> of the bag here, although you and Rene both know already, but we saw

> some major improvements when I put Asher on NCD/Liver life that were

> probably related to ammonia reduction. Was hesitant to go public

> about this since I don't know what did what, but something did

> something.....

LOL the secret NCD subculture...bring on the reports! Now where is

that little vial of brandy...

Nell

[Guest guest]

> I do wonder about the bacteria thing, though. What things are given

for bacteria?

I use olive leaf extract when bad bacteria is really bad. Otherwise I

just increase probiotics.

Dana

[Guest guest]

Dana,

I know you wrote somewhere that you had a time when the OLE didn't

work for your son's bacteria. Do you remember if you used uva ursi

then? Our bacteria has not responded to OLE at all.

Thanks,

Anne

> > I do wonder about the bacteria thing, though. What things are given

> for bacteria?

>

>

> I use olive leaf extract when bad bacteria is really bad. Otherwise

I

> just increase probiotics.

>

> Dana

>

[Guest guest]

> LOL the secret NCD subculture...bring on the reports! Now where is

> that little vial of brandy...

>

> Nell

>

Yup, Nell, we've got secret handshakes and rings and the whole works.

I personally have an NCD tattoo, only not where anyone can see it. ;-)

MMM. Gotta get me... um, I mean MY SON some of that Liver Life.

Since the brandy is hard to come by here these days, being the

responsible parent of a special needs kid and all.

ta...

René

[Guest guest]

> Dana,

> I know you wrote somewhere that you had a time when the OLE didn't

> work for your son's bacteria. Do you remember if you used uva ursi

> then? Our bacteria has not responded to OLE at all.

I remember when his yeast from Lauricidin did not respond to GSE. I

don't remember if/when OLE did not address bacteria.

I did try to use uva ursi when the GSE was not effective for the

yeast, but that did not work either.

Virastop enzyme also works on bacteria, so you can try that along with

OLE, see if the combination is helpful.

Dana