Re: Very Confused about Chelation issue

June 25, 2004

There is so much information out there and potential treatments for this

cluster of things we call " autism " that parents do need to be active researchers

and make the decisions for themselves on what is best for their individual

child.

This is a great list to learn more specifics about the approach, the

various medications used, things avoided, etc. You can also learn more at the

www.neuroimmunedr.com site. Take that information, research and read up on the

medications used to fully inform yourself of the positives, as well as

potential dangers, in following the protocol (some the same side effects

listed

as possible side effects of DMSA are also potential side effects of some of

the meds -- though rare for both).

There is also quite a bit of information and research on chelation that is

easily obtainable so you can make an informed decision based on a wide variety

of data. This list will offer mostly negative information on chelation because

the folks do not feel it is safe or effective. You can find other lists

as well as other research that conflicts with this opinion. It's really up

to each individual parent to take both sets of info and make a personal

decision.

I have researched both and my son has done both with positive outcomes.

However, I try not to get too involved in the chelation threads on this

particular

list out of respect for Dr. Goldberg's clear desire to not have his patients

do chelation. I'd be happy to share our individual experience and knowledge

of the two offlist though if it would be helpful.

Gaylen

June 25, 2004

Hi, I reposted some info that may help explain some of this. Probably the

most important question is whether there's a real need for chelation.

We don't know if the immune suppression is the reason some are responding.

We also don't know why the children in that controlled study had some areas

like intelligence and behavior become a little worse when chelated. Was it

the chelator itself causing some type of damage...or was it possibly due to

increased metal deposits in the frontal part of the brain like a study I

found on chelated mice.

Chelation is not a benign procedure that should be tried because of

someone's theory. If testing at a major medical center shows real

poisoning, then depending on levels it might become necessary.

Unfortunately there are all kinds of different opinions and theories which

may or may not be backed by credible science or the proof that's needed.

Cheryl

----Original Message Follows----

From: " sunsetdancer2000 " <sunsetdancer.1@...>

Reply-

Subject: Very Confused about Chelation issue

Date: Fri, 25 Jun 2004 04:00:31 -0000

It seems that several DAN/Biomedical doctors websites claim that

Chelation should be done early...sooner the better for great

results. They list numbers of children in clinic who have done this

and ages and percentages healed. which, appear quite high in under 5

year old bracket. Are these stats true? Yet, doc's say no

don't do it! They won't take your child if you have done it. This

creates quite a double bind for parents who want to do what's right

for their child. Why does it slow things down to chelate? What if

the child would have been healed at 2 by chelating? Then what if you

are not doing it because say no? What are the percentages of

treated kids who are actually overcoming autism? Where can we

see percentages? I'm very confused. Just want to do what's right

for my child and do it early. Any ideas?

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June 25, 2004

Yes, the situation can be confusing. Truth is know one knows what kind of

child will respond or respond poorly to any protocol - including . Both

are viable. Neither Dr G or DAN are the be all, and both are valid. We just

don't know before hand who will respond to all the various treatments. Use

sense (e.g. don't Chelate for Chelations sake), however with heavy metal

testing it could be appropriate under the proper supervision. Sorry we still

have no guarantees for anything (yet). This includes .

Very Confused about Chelation issue

It seems that several DAN/Biomedical doctors websites claim that

Chelation should be done early...sooner the better for great

results. They list numbers of children in clinic who have done this

and ages and percentages healed. which, appear quite high in under 5

year old bracket. Are these stats true? Yet, doc's say no

don't do it! They won't take your child if you have done it. This

creates quite a double bind for parents who want to do what's right

for their child. Why does it slow things down to chelate? What if

the child would have been healed at 2 by chelating? Then what if you

are not doing it because say no? What are the percentages of

treated kids who are actually overcoming autism? Where can we

see percentages? I'm very confused. Just want to do what's right

for my child and do it early. Any ideas?

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

July 1, 2004

Ask any pediatrician what they think about chelation particularly on an

outpatient basis. Kathy -NNY

August 1, 2004

I decided to pop in tonight just to see what is going on in NIDs

world after almost a year away from NIDs. We abandoned NIDs after a

year due to the fact that my daughter made virtually no progress

during this year. It seemed that we weren't doing enough for her an

antifungal, antiviral, ssri. That was it. I feel now that we lost

a precious year of critical time and she is now 4.5. Right before

leaving NIDs I posted and asked if there were any people out there

that didn't make progress or were in the same boat as us. No

responses. My point, keep in mind that the unsuccessful stories

will not respond like I have because they have gone elsewhere. In

our case we are going to try chelation. I feel that many of my

child's gut issues are seriously effecting her. After a year on

antifungals with Dr. G we still have gut issues. I have heard that

if you don't get the metals out you will never heal the gut. Also,

our DAN doc has said that her immune workup shows that her immune

issues show that they have been there a long time. How is that when

she was on antivirals for a year? I feel for you. It is the

hardest decision because if it's not the right one you will loose

time. Chelation is an equally hard decision because there are

people like Dr. G who will tell you there are risks and some who

regress. This is such an unfair situation isn't it. I wish you all

the best and some of you are very lucky to have had such success

with Dr. G. Sincerely, Terri

> It seems that several DAN/Biomedical doctors websites claim that

> Chelation should be done early...sooner the better for great

> results. They list numbers of children in clinic who have done

this

> and ages and percentages healed. which, appear quite high in under

5

> year old bracket. Are these stats true? Yet, doc's say no

> don't do it! They won't take your child if you have done it.

This

> creates quite a double bind for parents who want to do what's

right

> for their child. Why does it slow things down to chelate? What if

> the child would have been healed at 2 by chelating? Then what if

you

> are not doing it because say no? What are the percentages of

> treated kids who are actually overcoming autism? Where can

we

> see percentages? I'm very confused. Just want to do what's right

> for my child and do it early. Any ideas?

August 3, 2004

we've been on nids protocol two years now with some progress. i recently had

a comprehensive lab work up done on my son thru great plains labs (my son

underwent many tests with this lab when he was first diag at age 3. i just

wanted to see what this lab's results read----more curiousity if anything).

the results still showed metals and major yeast. as you know, these two

problem areas can cause major harm. these results were after being on the nids

protocol for almost two years (antifungals, antivirals and ssri's and other

misc meds).

i showed dr g the results, basically for the files in his office, and he

became angry and gave them back to me and said i waisted my money. he said

there

is no accurate way to measure levels like these. he said doing metal testing

on hair is not good and said that once, great plains labs analyzed hair from

an animal and said what they say to everyone: there are metals.

anyway, i feel there has to be SOME way of explaining if there is a problem

with yeast and metals. given my son's slow improvements after two years on the

protocol, i'm not exactly sure what to do. I believe in the nids protocol,

but, we dont see the striking improvements like i read on other posts.

recent labs from dr g's office show levels are pretty good (i'm happy). i

believe in the immune dysfunction theory, but, just wonder if there ever comes a

time when other avenues needs to be explored.....

vicki in los angeles

August 3, 2004

In a message dated 8/3/2004 12:43:04 PM Central Standard Time,

mhilton@... writes:

Is it true that Dr. G will not treat your child if you have tried chelation?

No. He is seeing my son who did chelation for three years to treat arsenic

poisoning from over-spraying on a golf course we lived on. He probably takes

it on a case by case basis though.

He is adamantly against chelation though so be prepared for a long lecture.

He's said he'd drop a patient if they started chelating while seeing him so we

did make a promise to him that we wouldn't chelate for as long as my son was

a patient of his.

Gaylen

August 3, 2004

In a message dated 8/3/2004 12:45:26 PM Central Standard Time,

vickila1@... writes:

<<the results still showed metals and major yeast. as you know, these two

problem areas can cause major harm. these results were after being on the

nids

protocol for almost two years (antifungals, antivirals and ssri's and other

misc meds).>>

I'm curious to know what specific tests showed that your son still has a

problem with yeast? Was this the urine metobolite test? That would be strange

after two years on antifungal treatment. Did Dr. Goldberg comment on the yeast

test specifically?

<<he said doing metal testing on hair is not good and said that once, great

plains labs analyzed hair from an animal and said what they say to everyone:

there are metals.>>

It is true that hair analysis could show false positives in some cases if the

hair is washed in something high in metals. Most of the docs who have done

this a long time, follow up this testing with a provocative urine test to

verify toxicity.

However, I don't think the arguement that it was found to be high in a dog

would make it not as reliable for human testing. A dog would have similar metal

exposures as the humans in the same environment or eating similar foods.

There was a strange pattern of weird skin disorders among numerous dogs in my

old

neighborhood where the company over-sprayed MSMA (arsenic). I imagine if the

owners had sent in samples of their fur, they would have found elevated

levels of arsenic.

I have looked at tons of results of toxic elements in hair and urine and can

tell you that they do not always show high levels of metals.

Gaylen

August 3, 2004

my son took the organic acid test (oat) from great plains labs. the results

showed my son still had a major yeast problem (although we have been on

antivirals and antifungals almost two years when the lab test was conducted in

2-04).

the oat focuses on detecting yeast and bacteria byproducts. this is a urine

test. the great plains labs holds a patent on this test.

also, as a result of the lab tests, results show he is very difficient in

glutathione; low zinc (which is important for immune function); not sufficient

selenium levels.

hair elements test show high in metals. this test was done in 8/01 with same

results.

so, after all this time on antifungal/antiviral, my son's labs are not really

reflecting that his immune system is getting better.

i told dr g that i want a test to determine if there is a yeast (candida)

problem and he said there are no reliable tests out there. (so, all i'm left

with is the great plains lab tests for this which shows still a big problem)

vicki in los angeles

August 3, 2004

Vicki-

This same thing happened to us as well. We live about 15 minutes

from Great Plains lab. Occasionally we are able to get some of their

testing done for free when they do R & D. I, like you, do it to monitor

results over time. I passed those tests on to Dr. G mainly for his

information. He reacted in a similar way and is pretty hostile in

his opinion of GPL. While I don't agree with him, I recognize his

strong reaction is because he feels families are getting ripped off

by treatments out there he sees as ineffective or unsafe.

Unfortunately, Dr. G doesn't believe in the science behind the tests

run at GPL. I know several of the employees at GPL and they are great

people who are also parents of children with autism. I can guarantee

that there are no intentions of ripping families off and they are

doing quality work.

We've been on the protocol with our son for two years also. We

started when he was 6. We don't see the striking improvements that

are somtimes reported either. Often it is just slow progress that is

hard to know what to attribute it to-natural progress or a result of

a medicine change. The only thing that I can say has made a definite

noticable difference has been the addition of BayGam/ IMGG to his

treatment. It took us almost two years before Dr. G added that. I

wish he would have started with it. Given how it has taken something

with that much " punch " to make a noticable impact, I can't help but

think that a touch case like my son is only going to get well with

the immune modulators. I only hope he's not an adult before they

become a reality.

I think Dr. G holds the biggest piece of the puzzle for my son's

treatment because I'm convinced his immune dysfunction is the biggest

problem. That doesn't mean that there aren't other smaller pieces out

there that could help. I don't think you are wrong to look at other

avenues. I think we are all looking for the right combination of

things that fit our children's unique problems.

-- In , vickila1@a... wrote:

> we've been on nids protocol two years now with some progress. i

recently had

> a comprehensive lab work up done on my son thru great plains labs

(my son

> underwent many tests with this lab when he was first diag at age

3. i just

> wanted to see what this lab's results read----more curiousity if

anything).

>

> the results still showed metals and major yeast. as you know,

these two

> problem areas can cause major harm. these results were after

being on the nids

> protocol for almost two years (antifungals, antivirals and ssri's

and other

> misc meds).

>

> i showed dr g the results, basically for the files in his office,

and he

> became angry and gave them back to me and said i waisted my money.

he said there

> is no accurate way to measure levels like these. he said doing

metal testing

> on hair is not good and said that once, great plains labs analyzed

hair from

> an animal and said what they say to everyone: there are metals.

>

> anyway, i feel there has to be SOME way of explaining if there is a

problem

> with yeast and metals. given my son's slow improvements after two

years on the

> protocol, i'm not exactly sure what to do. I believe in the nids

protocol,

> but, we dont see the striking improvements like i read on other

posts.

>

> recent labs from dr g's office show levels are pretty good (i'm

happy). i

> believe in the immune dysfunction theory, but, just wonder if there

ever comes a

> time when other avenues needs to be explored.....

> vicki in los angeles

>

August 3, 2004

tx timary for your two cents. it was worth a lot more! anyway, so, if the

tests at the great plains labs are not a true indication of what's going on,

then, where DOES one turn to for " accurate " testing?

from what i have learned from reading, a yeast problem can be seen in

behaviors. my son certainly has many behavior problems. not saying that all

the

cause of yeast, but, i do know a yeast overgrowth can affect the brain and wreak

havock in the body and make you feel bad.

as far as metals go, again, from what i have read over the years, i still

believe my son has a problem with this. he also had a blood test done which

also

said he had metals. i know if the immune system isnt functioning properly,

the body will not excrete the toxins the way it is supposed to.

all i know is that i am not seeing the improvements a lot mention on this

group. some improvements definitely noted however, i still firmly believe that

my son's internal system is suffering. i will continue to search for answers.

vicki

August 4, 2004

I discussed the yeast issue with Dr. G last week since my son has never

tested as having a yeast problem on any of the tests and hasn't had any obvious

beneficial effects from antifungals but is on one anyway. He said that low nk

cells almost always mean that the body cannot properly attack yeast overgrowth

issues.

You can read his beliefs about secretin in the conference area of the

www.neuroimmune.dr website.

Gaylen

August 4, 2004

Now I am really confused about chelation and yeast!! I understand that Dr. G

believes in treating with antifungals but if he doesn't believe in the tests

what does he base his belief that a child needs that treatment? We are not yet

patients of his so I am concerned that anything we do in the mean time (like

chelation) will make my son's treatment with Dr. G compromised. Since we will

have to what a long time to get in to see him I hate to wait and do nothing

while time is ticking (my son is already 9) and his DAN dr thinks that chelation

as well as treating yeast is the route to take. Any suggestions?

p.s. Where does he stand on Secretion?

Re: Re: Very Confused about Chelation issue

we've been on nids protocol two years now with some progress. i recently had

a comprehensive lab work up done on my son thru great plains labs (my son

underwent many tests with this lab when he was first diag at age 3. i just

wanted to see what this lab's results read----more curiousity if anything).

the results still showed metals and major yeast. as you know, these two

problem areas can cause major harm. these results were after being on the

nids

protocol for almost two years (antifungals, antivirals and ssri's and other

misc meds).

i showed dr g the results, basically for the files in his office, and he

became angry and gave them back to me and said i waisted my money. he said

there

is no accurate way to measure levels like these. he said doing metal testing

on hair is not good and said that once, great plains labs analyzed hair from

an animal and said what they say to everyone: there are metals.

anyway, i feel there has to be SOME way of explaining if there is a problem

with yeast and metals. given my son's slow improvements after two years on

the

protocol, i'm not exactly sure what to do. I believe in the nids protocol,

but, we dont see the striking improvements like i read on other posts.

recent labs from dr g's office show levels are pretty good (i'm happy). i

believe in the immune dysfunction theory, but, just wonder if there ever comes

a

time when other avenues needs to be explored.....

vicki in los angeles

August 4, 2004

I've heard Dr. G say he looks at NK cell results when considering

yeast. I think he said low NK cells would make yeast overgrowth

possible.

Just a comment about chelation and yeast....I've heard many parents

say that chelation is rough on the gut and the yeast goes to town

while chelating. Many I know have had to stop chelating to treat

it. I'm not up on the latest though and maybe they have fixed that

problem.

> Now I am really confused about chelation and yeast!! I understand

that Dr. G believes in treating with antifungals but if he doesn't

believe in the tests what does he base his belief that a child needs

that treatment? We are not yet patients of his so I am concerned

that anything we do in the mean time (like chelation) will make my

son's treatment with Dr. G compromised. Since we will have to what a

long time to get in to see him I hate to wait and do nothing while

time is ticking (my son is already 9) and his DAN dr thinks that

chelation as well as treating yeast is the route to take. Any

suggestions?

>

> p.s. Where does he stand on Secretion?

> Re: Re: Very Confused about Chelation issue

>

> we've been on nids protocol two years now with some progress. i

recently had

> a comprehensive lab work up done on my son thru great plains labs

(my son

> underwent many tests with this lab when he was first diag at age

3. i just

> wanted to see what this lab's results read----more curiousity if

anything).

>

> the results still showed metals and major yeast. as you know,

these two

> problem areas can cause major harm. these results were after

being on the nids

> protocol for almost two years (antifungals, antivirals and ssri's

and other

> misc meds).

>

> i showed dr g the results, basically for the files in his office,

and he

> became angry and gave them back to me and said i waisted my

money. he said there

> is no accurate way to measure levels like these. he said doing

metal testing

> on hair is not good and said that once, great plains labs

analyzed hair from

> an animal and said what they say to everyone: there are metals.

>

> anyway, i feel there has to be SOME way of explaining if there is

a problem

> with yeast and metals. given my son's slow improvements after

two years on the

> protocol, i'm not exactly sure what to do. I believe in the

nids protocol,

> but, we dont see the striking improvements like i read on other

posts.

>

> recent labs from dr g's office show levels are pretty good (i'm

happy). i

> believe in the immune dysfunction theory, but, just wonder if

there ever comes a

> time when other avenues needs to be explored.....

> vicki in los angeles

>

August 4, 2004

Dr G will not start ImGG unless regular anti-viral treatment isn't making

the headway hoped. (ie he doesn't want to unnecessarily give a fairly

ferocious injection) Agree, it does make a difference.