Re: Re: DAN Snippets (1)

[Guest guest]

This has been running through my mind ever since you wrote it. Did Dr. give anymore info that might be of use here? How did they choose these kids? Is it reasonable to think that pretty much anyone who uses oral DMSA might have stabilized glutathione levels???? That seems too easy and GOOD to be true? Shouldn't DANs be all over this?

>>>Well I could make some sarcastic remark about oral DMSA not being so profitable as IV's but I won't LOL.

Yes the Parents and the DANs were impressed by this. Apparently the levels held for couple of months, maybe more, they have finite resources for the study so couldn't follow up more and they are still analysing the heaps of data

I have heard DMSA referred to as an antioxidant in the past but I forget by whom.

The study used the DAN protocol dosing, so it is in effect confirming the use of oral as recommmended by DAN!

Mandi x

[Guest guest]

Any word out when the new chelator is coming out?? I hear it may be available by this summer. I think i will hold off and wait till then.

>>It won't be that early, later this year before trials even. You won't hear anything about it for while now, got to keep quiet and let it get past FDA for 75 days - so sussssh we were told by a man who knows..............

Mandi x

[Guest guest]

I think i will hold off and wait till then.

>>>What about Lead and other stuff not so compatible with Lipoic acid? The new chelator is for Mercury.............my only regret with chelation was not starting sooner FWIW

Mandi x

[Guest guest]

Although my dream is a chelator, preferably a patch, that lasts for 24 hours, I can't see how it would be possible to have any drug cleared by the CDC let alone have the drug trials over with by this summer. For a drug developed today you are looking at a minimum of 5-10 years.

>>the trick is this isn't a drug - its a supplement, just fancy ALA with a specialised delivery system and as long as the FDA don;t get wind thats its more than that we'll get it sooner rather than later sushhhhhhhhhhhhh

Mandi x

[Guest guest]

Mandi, are you a fan of Ca EDTA? Sara

>>Nope.........helps with Lead, no good for Mercury, some say contraidicated in someone with Hg toxicity which I am guessing most of our kids have.

Mandi x

[Guest guest]

But are you a fan of it for lead? and sorry, I’m so dim I don’t know what contraindicated in someone with hg toxicity means!!! None of it! Please explain for someone with no brains. said that British kids with autism are far more likely to be lead toxic than American kids.

>>>If you have Lead and Mercury, I wouldn't use EDTA, Andy Cutler says don't use EDTA if you are Mercury toxic, so does Boyd Haley I think.

I did try it for a couple of rounds because everybody raved about it, it stripped Sam's essential minerals very low. They had been unaffected by years of DMSA.

Amy Yasko says EDTA has antioxidant properties, its an integral part of her protocol but she isn't using it like DAN!'s use it, her programme is about supporting the individual childs methylation cycle so the body starts detoxing itself - many of these kids are pouring out metals with no chelator at all - cool eh?

Mandi x

[Guest guest]

I think Dr Osman said rude things about it at the conference? Anyone remember?

>>No - Dr Usman uses CaEDTA extensively, mostly IV

Mandi x

[Guest guest]

I think Dr Osman said rude things about it at the conference? Anyone remember?

>>No - Dr Usman uses CaEDTA extensively, mostly IV

>>But she was cool when I told her in our consultation we wern't going there, in any form I love practtioners that truely do work in partnership with parents

Mandi x

[Guest guest]

Although my dream is a chelator, preferably a patch, that lasts for 24 hours, I can't see how it would be possible to have any drug cleared by the CDC let alone have the drug trials over with by this summer. For a drug developed today you are looking at a minimum of 5-10 years.

Re: DAN Snippets (1)

Any word out when the new chelator is coming out?? I hear it may be available by this summer. I think i will hold off and wait till then. >> > > > This has been running through my mind ever since you wrote it. Did > Dr. give anymore info that might be of use here? How did they > choose these kids? Is it reasonable to think that pretty much anyone > who uses oral DMSA might have stabilized glutathione levels???? That > seems too easy and GOOD to be true? Shouldn't DANs be all over this?> > > > >>>Well I could make some sarcastic remark about oral DMSA not being so > profitable as IV's but I won't LOL. > > Yes the Parents and the DANs were impressed by this. Apparently the levels > held for couple of months, maybe more, they have finite resources for the > study so couldn't follow up more and they are still analysing the heaps of data> > I have heard DMSA referred to as an antioxidant in the past but I forget by > whom.> > The study used the DAN protocol dosing, so it is in effect confirming the > use of oral as recommmended by DAN!> > Mandi x>

[Guest guest]

Mandi,

are you a fan of Ca EDTA? Sara

Re:

Re: DAN Snippets (1)

In a

message dated 27/04/2007 09:22:19 GMT Standard Time, bbrowne123

writes:

I

think i will hold off and wait till

then.

>>>What about Lead and other stuff not

so compatible with Lipoic acid? The new chelator is for Mercury.............my

only regret with chelation was not starting sooner FWIW

Mandi x

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[Guest guest]

But are

you a fan of it for lead? and sorry, I’m so dim I don’t know what

contraindicated in someone with hg toxicity means!!! None of it! Please explain

for someone with no brains. said that British kids with autism are far

more likely to be lead toxic than American kids.

SARA

Re:

Re: DAN Snippets (1)

In a

message dated 27/04/2007 13:08:20 GMT Standard Time, Moroza-Tiscali (DOT) co.uk

writes:

Mandi,

are you a fan of Ca EDTA? Sara

>>Nope.........helps

with Lead, no good for Mercury, some say contraidicated in someone with Hg

toxicity which I am guessing most of our kids have.

Mandi x

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[Guest guest]

I think Dr Osman said rude things about it at the conference? Anyone

remember?

Sally

Mum231ASD@... wrote:

>

> In a message dated 27/04/2007 13:08:20 GMT Standard Time,

> Moroza-@ Tiscali.co. uk writes:

>

> Mandi, are you a fan of Ca EDTA? Sara

>

> >>Nope........ .helps with Lead, no good for Mercury, some say

> contraidicated in someone with Hg toxicity which I am guessing most of

> our kids have.

>

> Mandi x

>

>

>

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

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.463 / Virus Database: 269.6.1/777 - Release Date: 26/04/2007

15:23

>

[Guest guest]

I'm sure I remember hearing someone/ reading something saying CaEDTA was

dangerous -- I remember being surprised because so many people use it.

I'm just very confused I expect

Sally

Mum231ASD@... wrote:

>

> In a message dated 27/04/2007 14:15:17 GMT Standard Time,

> Mum231ASDaol (DOT) com writes:

>

> I think Dr Osman said rude things about it at the conference?

> Anyone

> remember?

>

> >>No - Dr Usman uses CaEDTA extensively, mostly IV

>

>

> >>But she was cool when I told her in our consultation we wern't going

> there, in any form I love practtioners that truely do work in

> partnership with parents

>

> Mandi x

>

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

>

> No virus found in this incoming message.

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15:23

>

[Guest guest]

She

said she didn’t like TTFD but didn’t say why.

I’m so worried now, giving Tom EDTA, he

did well during the first round and is not good this second round. This is all

so hard it’s doing my head in. I only want to help him. This is a ridiculous,

expensive minefield. It’s so unfair. Just been called back to tribunal too as

the LEA want the amounts to be paid clarified.

Sara

Re:

Re: DAN Snippets (1)

In a

message dated 27/04/2007 14:15:17 GMT Standard Time, Mum231ASDaol

writes:

I

think Dr Osman said rude things about it at the conference? Anyone

remember?

>>No

- Dr Usman uses CaEDTA extensively, mostly IV

>>But

she was cool when I told her in our consultation we wern't going there, in any

form I love practtioners that truely do work in partnership with parents

Mandi x

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[Guest guest]

Do you

know how she uses it? If it’s simple that is, if it’s complicated I’ll go away

and look it up.

Sara

Re:

Re: DAN Snippets (1)

In a

message dated 27/04/2007 13:28:22 GMT Standard Time, Moroza-Tiscali (DOT) co.uk

writes:

But are

you a fan of it for lead? and sorry, I’m so dim I don’t know what

contraindicated in someone with hg toxicity means!!! None of it! Please explain

for someone with no brains. said that British kids with autism are far

more likely to be lead toxic than American kids.

>>>If

you have Lead and Mercury, I wouldn't use EDTA, Andy Cutler says don't use EDTA

if you are Mercury toxic, so does Boyd Haley I think.

I did

try it for a couple of rounds because everybody raved about it, it stripped

Sam's essential minerals very low. They had been unaffected by

years of DMSA.

Amy

Yasko says EDTA has antioxidant properties, its an integral part of her

protocol but she isn't using it like DAN!'s use it, her programme is about

supporting the individual childs methylation cycle so the body starts detoxing

itself - many of these kids are pouring out metals with no chelator at all -

cool eh?

Mandi x

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[Guest guest]

I’m so worried now, giving Tom EDTA, he did well during the first round and is not good this second round.

>>this is common with protocols that don't dose to the half life of the chelator - which of course suppositories do not unless in the case of EDTA you are going to be giving them 6-8 hourly for 3 days. The reason this isn't done with suppositories I think is that many anal insertions over 3 days would be likely considered 'abusive' maybe. Sure as hell know I wouldn't want to be doing it, neither would Sam like me too.

Couple of presenters at DAN did say that if there is ANY resistance from the child AT ALL you should not be doing suppositories.

We sure had mega resistance from Sam when we were trying to use this route for paracetamol - not a good idea in itself I know but he had been at a temp of 104 for 10 days by then, nothing was touching it - he was silent, very scarey and spooky too. It went on for 13 days in the end and resolved itself. They never found a focus of infection so its still a mystery.

Don't beat yourself up Sara - folks that do full on home programmes and full on biomed like you are my hero's - I have only ever managed the biomed

Mandi x

[Guest guest]

Do you know how she uses it? If it’s simple that is, if it’s complicated I’ll go away and look it up.

>>Looking it up is complicated LOL -NOT!

She uses it in low daily doses like she uses everything else - her programme is about lots of supps, in tiny amounts (compared with DAN) which mimic the way the body would get nutrients naturally.

I cut the supps schedule down as much as I could for while I was away and it was still 32 different ones - he did supps by numbers, said I had to put them on the lids and then say which ones went at which time of day - he did good!

Mandi x

[Guest guest]

Thank you

so much Mandi for your kind words. I’m not actually beating myself up for once

but I just want him to be BETTER!!!!! Ha ha of course none of you will have the

foggiest how that feels…. SARA

Re:

Re: DAN Snippets (1)

In a

message dated 27/04/2007 14:45:29 GMT Standard Time, Moroza-Tiscali (DOT) co.uk

writes:

I’m so

worried now, giving Tom EDTA, he did well during the first round and is not

good this second round.

>>this

is common with protocols that don't dose to the half life of the chelator -

which of course suppositories do not unless in the case of EDTA you are going

to be giving them 6-8 hourly for 3 days. The reason this isn't done with

suppositories I think is that many anal insertions over 3 days would be likely

considered 'abusive' maybe. Sure as hell know I wouldn't want to be doing it,

neither would Sam like me too.

Couple

of presenters at DAN did say that if there is ANY resistance from the child AT

ALL you should not be doing suppositories.

We sure

had mega resistance from Sam when we were trying to use this route for

paracetamol - not a good idea in itself I know but he had been at a temp of 104

for 10 days by then, nothing was touching it - he was silent, very scarey and

spooky too. It went on for 13 days in the end and resolved itself. They never

found a focus of infection so its still a mystery.

Don't

beat yourself up Sara - folks that do full on home programmes and full on

biomed like you are my hero's - I have only ever managed the biomed

Mandi x

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[Guest guest]

I wish it were all about profit though. I think though that a big part of the rush to IV before trying anything other option is something else. Part of what makes me think that is reading a post where a child's DMSA dosage was 1000mg each week! In one dose! My first thought was omg that poor child. The second thought was the some doctors are now trying to give the IV dosage orally. The poor kid had blisters in his mouth from it. I think that some of the chelation protocols are just about being utterly careless of what might happen to the child combined with a macho, "I'm going to make my own mark" sort of attitude. It defies reason.

>>Absolutely - the prize for the most bizzre of the week must go to 800mg of DMSA in one dose once per week - whatever is THAT about?????

Confused in Dorset!

[Guest guest]

I heard the same thing, 850 mgs of dmps, one dose. This is for well known dan!

Re: Re: DAN Snippets (1)

In a message dated 28/04/2007 03:17:17 GMT Standard Time, mysuperteachhotmail writes:

I wish it were all about profit though. I think though that a big part of the rush to IV before trying anything other option is something else. Part of what makes me think that is reading a post where a child's DMSA dosage was 1000mg each week! In one dose! My first thought was omg that poor child. The second thought was the some doctors are now trying to give the IV dosage orally. The poor kid had blisters in his mouth from it. I think that some of the chelation protocols are just about being utterly careless of what might happen to the child combined with a macho, "I'm going to make my own mark" sort of attitude. It defies reason.

>>Absolutely - the prize for the most bizzre of the week must go to 800mg of DMSA in one dose once per week - whatever is THAT about?????

Confused in Dorset!

[Guest guest]

Sorry, coming to this late, but I've been thinking - does this perhaps explain why some kids do so very well on their first round of chelation, when presumably very little Hg, etc., has been excreted? I know that the explanation often given is that some kids are responding favourably to a little extra sulphur...

>>Thats making more sense to me now, the most you can be doing on the first round is decresing body burden, free floating type stuff. Been a while since we did a round of DMSA/ALA, I feel one coming on for next weekend Sam tested in normal range for Glutathione BTW............Hmmmmmmmm

Mandi x

[Guest guest]

Kirby said that the porphyrin results for kids with ASD or Pdd-nos differ significantly from the Asperger kids who have the same amount of metals as the control or NT kids. I can't quite understand this or maybe like Andy has said that for the majority of Aspie kids, antimony is the big issue and I don't think the porphyrin test measures that, does it?

>>I think thats what they found in the Nataf study - I must have the PDF somewhere if you haven't got it, I'll search it out

Mandi x

[Guest guest]

But the bottom line Bock says although it is rare there are kids who recover on dmsa without ever excreting much of anything or them catching them excreting anything that is.

>>Yes key point here is catching it.............

Mandi x

[Guest guest]

Rene,

Sorry to butt in, not Anita but I just read Bock's new book and he had a case just like this where the child responded immediately to dmsa. Bock said it was clear and like we have always thought it was not enough time at all for any metals to be excreted so that did not account for it.

He goes on to say that for some kids who recover and never excrete any appreciable amounts of mercury and react very positively to dmsa that sometimes things don't always work as they are intended. Some of the possible reasons he gives for this phenomenon are; dmsa serves as an anti inflammatory for children who have huge amounts of inflammation due to viral issues; dmsa helps some children excrete plastics and other toxins not measured; dmsa serves as an immunomodulator for children whose immune system got messed up by vaccines.

But the bottom line Bock says although it is rare there are kids who recover on dmsa without ever excreting much of anything or them catching them excreting anything that is.

Ours was the same, the third day of the first round ours astounded us by have a 5 minute totally appropriate back and forth conversation with us...something that hadn't happened for awhile.

Hope this helps.

Re: DAN Snippets (1)

Sorry, coming to this late, but I've been thinking - does this perhaps explain why some kids do so very well on their first round of chelation, when presumably very little Hg, etc., has been excreted? I know that the explanation often given is that some kids are responding favourably to a little extra sulphur...On the very first round of Andy's protocol we had some amazing results.Rene> > > > > Dr report of the initial data from the double blind placebo > controlled DMSA study - findings about kids with low blood > glutathione OR high blood glutathione. After ONE round of DMSA - > levels normalised in ALL the kids - spooky and exciting huh? DMSA > does not pull essential minerals. (study was oral BTW)>

[Guest guest]

Also maybe related, maybe not I happened to catch a debate between Kirby and some other guy on an obscure cable channel concerning vaccines and mercury poisoning.

Kirby said that the porphyrin results for kids with ASD or Pdd-nos differ significantly from the Asperger kids who have the same amount of metals as the control or NT kids. I can't quite understand this or maybe like Andy has said that for the majority of Aspie kids, antimony is the big issue and I don't think the porphyrin test measures that, does it?

Getting way off the topic here but wanted to mention this.

Re: DAN Snippets (1)

Sorry, coming to this late, but I've been thinking - does this perhaps explain why some kids do so very well on their first round of chelation, when presumably very little Hg, etc., has been excreted? I know that the explanation often given is that some kids are responding favourably to a little extra sulphur...On the very first round of Andy's protocol we had some amazing results.Rene> > > > > Dr report of the initial data from the double blind placebo > controlled DMSA study - findings about kids with low blood > glutathione OR high blood glutathione. After ONE round of DMSA - > levels normalised in ALL the kids - spooky and exciting huh? DMSA > does not pull essential minerals. (study was oral BTW)>