Re: irish needing help

[Guest guest]

Hello in Scotland! (I'm in Dorset)

> a)Andy knows this subject inside out but seems a bit sceptical

> in tone about DAN doctors. Should I be ?

>

>>>His worry is the protocol they use - Andy was involved in the original DAN

think tank - every 4 hours for DMSA every 3 hours for ALA is Andy protocol at

1/8 - 1/2 mg per pound of child per dose. Many DAN's Rx 8 hourly dosing and

way higher doses though not all.

> b)Dominic had his HTaP jags but no MMR jag and never noticably

> regressed into autistic behaviour. He just has it in a mild form.

> All the successfull chelation testimonys I seem to read about are

> with children who regressed in their second year.

> Is there anyone in the same boat as me and has been successful with

> chelation.

>

>>>My son is severe and regressed between 14-18 months so I'm not a good

comparison, he also has very high Lead

> c)Has anyone successfully used the metalathionein process used by Amy

> Holmes and the Pfeiffer Institute ?

>

>>>Again no help here, no dosh for trips to USA

> d)A DAN doctor in England recently said that there was a 25% chance

> of permanently making the autism worse with chelation. I find this

> statistic horrifying.

>

>>>When your kid is high metals what is the risk of doing nothing? Low, slow

and frequent dosing reduces your risk considerably. If that DAN dr had been

using 8 hourly dosing or IV then he was probably right. To my knowledge there a

few DAN's in UK who been at this a while.............

Other than Amy Holmes statistics I cant find any figures to prove or

> dismiss this statistic. Andy says that regression can occur until the

> second phase of mercury chelation happens. I would happily settle for

> that but am terrified of gambling my son on a 4/1 chance.

>

>>>>I read Andy's comment as having intital improvement then maybe going

backwards for a while then picking up again. I don't think he meant regression

from the get go.

HTH and hope I got it right, I know its frustrating to ask Q's when all in US

are asleep so I'd thought I'd give it a shot!

MAndi in UK

PS There is UK group with some members at Pfeiffer here is the link

Autism-Chelation-UK/

[Guest guest]

Hello,

> I live in Scotland and my son Dominic is 3 1/2 years old and has been

> diagnosed as autistic.

> I'm getting a private practice in Edinburgh to chelate him using the

> DAN protocal.

>

> a)Andy knows this subject inside out but seems a bit sceptical

> in tone about DAN doctors. Should I be ?

your choice, of course. Personally, I would suggest focusing

on the things Andy disagrees about, and spending as much or

as little energy as you wish on understanding those things.

I do not think there are any relevant issues regarding

things like personality/kindness/intent/intellegence/etc.

I think all the relevant issues are about treatment

methods. This is just my personal opinion.

For example, there are a few (and only a few) significant

differences between what Andy recommends and the DAN mercury

detox protocol. The ones I can think of (and I may miss one)

are:

1. dose (DAN uses much higher doses)

2. timing (DAN gives oral chelators farther apart, e.g.

three times a day verses every 3 to 4 hours including at night)

3. DAN includes use of sulfury supplements for all kids (where

Andy recommends this only for kids who are low sulfur)

I don't recall what DAN says about supplements, but I think

the 3 above are the BIG differences. There are other more

minor points of disagreement. One way you can follow up

on these areas, if you want to, is to read ANDY_INDEX on the

topics I just stated.

/files/ANDY_INDEX

ANDY_INDEX also has a couple of posts that have fairly long

commentaries on the differences between DAN and Andy's protocols:

/message/52843 development

(history) of the DAN protocol

/message/53055 his

protocol vs. the DAN protocol -- comparisons, explanation of

differences; also some history of DAN protocol; also danger of IV

gluatathione

>

> b)Dominic had his HTaP jags but no MMR jag and never noticably

> regressed into autistic behaviour. He just has it in a mild form.

> All the successfull chelation testimonys I seem to read about are

> with children who regressed in their second year.

> Is there anyone in the same boat as me and has been successful with

> chelation.

You can read Dana's, her son was autistic from birth (and unlike

your child was severely autistic). Personally, I think there is

a wide range of situations where the kids have been helped,

including MANY different kinds/levels of conditions (e.g. high

functioning, low functioning, and " non autism " diagnoses)....

You can try reading LOVE_LETTERS:

/files/LOVE_LETTERS

(there is also a link here to Dana's site, in the " Dana " section.)

The range of results varies, but bear in mind most of the

people in LOVE LETTERS are " in progress " rather than " finished "

with chelation.

>

> c)Has anyone successfully used the metalathionein process used by Amy

> Holmes and the Pfeiffer Institute ?

Probably, depending on what is counted as success and who you

ask. You can find parents who are using this protocol at:

pfeifferautispatients/

more than here. I would ask for comments or look for comments

from people who have used the protocol for a long while.

I believe I have read posts from parents whose kids have

improved on this protocol.

>

> d)A DAN doctor in England recently said that there was a 25% chance

> of permanently making the autism worse with chelation. I find this

> statistic horrifying.

I find this very interesting, and I would love to know who the

doctor is. One of the biggest problems with doctors and anyone

else (parents, me, books, etc) promoting a " method " is the

strong tendency to minimize/ignore/hide " bad " results.

The fact that this doctor is NOT doing this makes this doctor

exceptionally interesting, IMO. It doesn't necessarily make

him " right " , although 25% sounds quite plausible to me.

I would, of course, add that this 25% is probably using the

DAN protocol (poor dose timing. This matters in creating

bad effects.) Or maybe this is using the (even worse)

DMPS injection method?

> Other than Amy Holmes statistics I cant find any figures to prove or

> dismiss this statistic. Andy says that regression can occur until the

> second phase of mercury chelation happens.

I see you have not read what Andy says about " bad " protocols

and how improper dose timing often leads to mercury redistribution

(which means you can get more mercury poisoned.)

Read the whole section in ANDY_INDEX about " keeping a steady

bloodstream level of chelation agents and " bad " protocols " .

You are missing something basic about Andy's idea.

> I would happily settle for

> that but am terrified of gambling my son on a 4/1 chance.

>

I hope you will not settle for anything until you have had

time to digest these issues, and also to read more about

real people's results. LOVE_LETTERS has only a FEW negative

results cases in it--- I wish there were more. You can look

for them if you want. (Search for the words " negative " and

" neutral " on the page.) I consider negative results to be

especially important, and would particularly love to get

more negative results in the form of " the chelation survey "

/files/Survey_directions

/files/Survey_form

best wishes,

Moria

[Guest guest]

--- In , " cathal_brennan " <cathal@c...>

wrote:

> a)Andy knows this subject inside out but seems a bit sceptical

> in tone about DAN doctors. Should I be ?

I just read this comment again, and heard it a whole different

way this time.

I think (this is MY opinion) that DAN doctors are among the

very best possible doctors you will find for helping with

mercury poisoning and ASD issues.

HOWEVER, that does not make them wonderful, it merely

makes many of them far better than other practitioners.

I think there is a " long way to go " to get to excellence.

There are also a LOT of different topics that a parent

or doctor (or anyone else interested) needs to master.

There are also SOME non-DAN-doctors who I think may be

very good at helping.

In every case, I am comparing to other available choices,

which are generally dismal. Given the widespread beliefs

that ASD is genetic, cannot be significantly changed, and

mercury poisoning doesn't exist, DAN doctors are generally

far better---- they generally, at least, think

that ASD can be helped, and mercury posioning may be a

factor, and is treatable, and they intend to take useful

actions about all this. This does not mean they have

the best possible advice or methods necessarily, but it IS a

whole LOT better than, say, hearing that vaccines have

nothing to do with autism, and mercury poisoning is

a worthelss fraudulent idea promoted by some nutty people.

best,

Moria

[Guest guest]

Thanks Mandy in Dorset

[Guest guest]

> > I'm getting a private practice in Edinburgh to chelate him using

the

> > DAN protocal.

> >

> > a)Andy knows this subject inside out but seems a bit sceptical

> > in tone about DAN doctors. Should I be ?

>

> your choice, of course. Personally, I would suggest focusing

> on the things Andy disagrees about, and spending as much or

> as little energy as you wish on understanding those things.

> I do not think there are any relevant issues regarding

> things like personality/kindness/intent/intellegence/etc.

> I think all the relevant issues are about treatment

> methods. This is just my personal opinion.

>

> For example, there are a few (and only a few) significant

> differences between what Andy recommends and the DAN mercury

> detox protocol. The ones I can think of (and I may miss one)

> are:

> 1. dose (DAN uses much higher doses)

> 2. timing (DAN gives oral chelators farther apart, e.g.

> three times a day verses every 3 to 4 hours including at night)

> 3. DAN includes use of sulfury supplements for all kids (where

> Andy recommends this only for kids who are low sulfur)

>

> I don't recall what DAN says about supplements, but I think

> the 3 above are the BIG differences. There are other more

> minor points of disagreement.

A fairly accurate portrayal of the situation. Most of the doc's are

decent people trying to help the best way they know how. I simply

don't think they have the best recipe yet and suggest some

modifications to how they do it. Moria hit on the big ones. Others

relevant are:

never use allithiamine or glutathione injections,

prefer nystatin or natural agents to Rx yeast treatments because these

work better and can be used continuiously,

dont' be afraid to use enough vitamin A to help,

chelate early and aggressively if your child is toxic,

actually use the test results to get a good diagnosis, and tailor

therapy to it.

> One way you can follow up

> on these areas, if you want to, is to read ANDY_INDEX on the

> topics I just stated.

> /files/ANDY_INDEX

>

> ANDY_INDEX also has a couple of posts that have fairly long

> commentaries on the differences between DAN and Andy's protocols:

> /message/52843

development

> (history) of the DAN protocol

> /message/53055 his

> protocol vs. the DAN protocol -- comparisons, explanation of

> differences; also some history of DAN protocol; also danger of IV

> gluatathione

>

> >

> > b)Dominic had his HTaP jags but no MMR jag and never noticably

> > regressed into autistic behaviour. He just has it in a mild form.

> > All the successfull chelation testimonys I seem to read about are

> > with children who regressed in their second year.

> > Is there anyone in the same boat as me and has been successful

with

> > chelation.

>

> You can read Dana's, her son was autistic from birth (and unlike

> your child was severely autistic). Personally, I think there is

> a wide range of situations where the kids have been helped,

> including MANY different kinds/levels of conditions (e.g. high

> functioning, low functioning, and " non autism " diagnoses)....

> You can try reading LOVE_LETTERS:

> /files/LOVE_LETTERS

> (there is also a link here to Dana's site, in the " Dana " section.)

> The range of results varies, but bear in mind most of the

> people in LOVE LETTERS are " in progress " rather than " finished "

> with chelation.

>

> >

> > c)Has anyone successfully used the metalathionein process used by

Amy

> > Holmes and the Pfeiffer Institute ?

There are a very limited number of reports of this on the list. Very

limited.

In his talk at the AutismOne conference, Bill Walsh of Pfeiffer said

that the metallothionein process works better if the kids are also

chelated (I think he said first but am not sure) so there doesn't seem

to be any disagreement that leads to a choice - chelate, use MT

promoter if you want. I don't think MT promoter does anything useful

for most people, but I also don't think it has any real risk of long

term harm so you might as well give it a try if you want to. Just

don't skip chelation in favor of it.

> Probably, depending on what is counted as success and who you

> ask. You can find parents who are using this protocol at:

> pfeifferautispatients/

> more than here. I would ask for comments or look for comments

> from people who have used the protocol for a long while.

> I believe I have read posts from parents whose kids have

> improved on this protocol.

>

> >

> > d)A DAN doctor in England recently said that there was a 25%

chance

> > of permanently making the autism worse with chelation. I find this

> > statistic horrifying.

This is true if you use the harmful and inappropriate chelation

protocol that DAN! has promulgated in the recipe book they send to

doctors. It is not true if you chelate properly.

Actually this is a good doctor since unlike most of the DAN! doc's he

clearly has been noticing what happens to his patients. He just

hasn't put 2 and 2 together and realized that means he needs a better

protocol.

> I find this very interesting, and I would love to know who the

> doctor is. One of the biggest problems with doctors and anyone

> else (parents, me, books, etc) promoting a " method " is the

> strong tendency to minimize/ignore/hide " bad " results.

Yes. A VERY big problem. A good reason to talk to lots of other

parents.

Also, please note that while I am often highly critical of doctors on

this issue, it actually isn't that easy to get a good estimate even if

they ARE trying to do so.

> The fact that this doctor is NOT doing this makes this doctor

> exceptionally interesting, IMO. It doesn't necessarily make

> him " right " , although 25% sounds quite plausible to me.

Me, too.

> I would, of course, add that this 25% is probably using the

> DAN protocol (poor dose timing. This matters in creating

> bad effects.) Or maybe this is using the (even worse)

> DMPS injection method?

>

> > Other than Amy Holmes statistics I cant find any figures to prove

or

> > dismiss this statistic. Andy says that regression can occur until

the

> > second phase of mercury chelation happens.

>

> I see you have not read what Andy says about " bad " protocols

> and how improper dose timing often leads to mercury redistribution

> (which means you can get more mercury poisoned.)

> Read the whole section in ANDY_INDEX about " keeping a steady

> bloodstream level of chelation agents and " bad " protocols " .

> You are missing something basic about Andy's idea.

>

> > I would happily settle for

> > that but am terrified of gambling my son on a 4/1 chance.

Don't gamble. Understand what the protocols are and stay away from

the ones where he might not get better if you stop right away when

there are problems. E. g. DMPS injections. And don't get talked into

continuing to chelate if he is getting worse and worse unless you

CLEARLY understand why that is happening and it is CLEARLY something

that is going to resolve. Chelation is an allopathic treatment and

there is no inherent healing crisis. When done properly you should

see improvements all along the way.

> >

>

> I hope you will not settle for anything until you have had

> time to digest these issues, and also to read more about

> real people's results. LOVE_LETTERS has only a FEW negative

> results cases in it--- I wish there were more. You can look

> for them if you want. (Search for the words " negative " and

> " neutral " on the page.) I consider negative results to be

> especially important, and would particularly love to get

> more negative results in the form of " the chelation survey "

> /files/Survey_directions

> /files/Survey_

[Guest guest]

--- In , " cathal_brennan " <cathal@c...>

wrote:

> b)Dominic had his HTaP jags but no MMR jag and never noticably

> regressed into autistic behaviour. He just has it in a mild form.

> All the successfull chelation testimonys I seem to read about are

> with children who regressed in their second year.

> Is there anyone in the same boat as me and has been successful with

> chelation.

My son never regressed, he was " born this way " , but he is MUCH BETTER

with chelation. Now he no longer qualifies as autistic, altho still

severely language delayed. You can read his story here, if you are

interested.

http://www.danasview.net/myson.htm

> d)A DAN doctor in England recently said that there was a 25% chance

> of permanently making the autism worse with chelation. I find this

> statistic horrifying.

My son has his regressive periods, but I have found that I just need

to modify my approach, the supplements I give, treat for yeast,

whatever. It is always something " fixable " tho, at least so far.

Dana

[Guest guest]

Hi Dana

We live in England and we see a DAN doctor in Dublin .( Dr )

www.chelation_Ireland.com. We are chelating under his guidance and the

statistic you

from a DAN doctor in England concerns me .Could you tell me the name of this

doctor as we could not find anyone here.

kind regards Darren Moult

[Guest guest]

> Hi Dana

> We live in England and we see a DAN doctor in Dublin .( Dr )

> www.chelation_Ireland.com. We are chelating under his guidance and

the statistic you

> from a DAN doctor in England concerns me .Could you tell me the name

of this

> doctor as we could not find anyone here.

I don't recall giving you any statistic, you must be thinking of

someone else.

Dana