RE: LET'S Think About this...

[Guest guest]

In a message dated 5/17/2006 1:39:50 PM Central Standard Time, isoaa@...

writes:

<<The sad truth is that parent's are becoming more desperate each day.

Autism is such a messed up situation- BLUNTLY speaking. >>

<<Parents are NOT well informed by the general INFO OUT THERE on this screwed

up situation we are all going to effected in one way or another. Let's get

real here, people !!>>

Pre-warning before I launch into my tirade: I'm coming off of a very

challenging few months dodging attacks from well-meaning family members who

believe

we are harming our son by following in the protocol " out of desperation " .

This is despite clear lab testing that shows improvement and progress in

numerous areas that is crystal clear to everyone except these particular people

who have their own agenda that all kids will whither away without milk.

Now my tirade: Having worked with and communicated with many, many parents

of autistic kids over the years, and being a parent of one myself, I am very

offended by comments like this. True, there are some parents out there that are

desperate, and not well informed, but the vast majority I encounter are

extremely thoughtful, well-read, intelligent people that don't rush into

dangerous

therapies or treatments for their kids. Bluntly speaking, until those wanting

to promote the protocol stop bashing other research in the field and

parents as moronic lemmings stupidly following the wrong theory, is not

going to be well-accepted as a treatment worth considering. Since I truly

believe

in this approach, I find it very sad that egos and dramatics continue to get

in the way of really helping all the kids.

<<Any protocol that involves possible death is reason enough to avoid it.>>

So, I guess you will be avoiding the protocol since more deaths have

been linked to SSRIs than to any chelation drug. Rather than over-dramatizing

reports of deaths due to drug mix-ups, (which are only semi-related at best to

this " competing " treatment), why don't we focus on how beneficial is for

kids and talk up the science behind it and its success stories? Sure, we

could scare a few parents away from the other doctors and possibly help their

kids

in the long run, but wouldn't it be better to share the real science and

success of and ultimately help more parents and doctors to want to use this

treatment because it works?

Ok, I'm done now. Think I need some chocolate, and maybe a vacation.

Gaylen

[Guest guest]

With all due respect, I'm not sure that you understood the significance of the

original posting. Accidentally chelating with a deadly drug (in its IV form)

instead of chelating with a safe one is medical mal-practice. It has nothing to

do with chelation, it has to do with human error being potentially deadly.

If someone accidentally put epinephrine in your IV instead of an antibiotic

that you were supposed to receive, would you conclude that IV antibiotic therapy

killed you?

-

isoaa@... wrote:

hope people realize that EDTA chelation with the correct medication (CaEDTA)

has an impressive safety record with no deaths!

-

elyse14 <elyse-g@...> wrote:

Deaths Associated With Hypocalcemia From Chelation Therapy—Texas,

Pennsylvania, and Oregon, 2003-2005

,

The sad truth is that parent's are becoming more desperate each day.

Autism is such a messed up situation- BLUNTLY speaking. Do the

math... you can't go from 1 in 10,000 births early 70's, late 60's to 1 in

100... IT IS NOT POSSIBLE !!

Parents are NOT well informed by the general INFO OUT THERE on this screwed

up situation we are all going to effected in one way or another. Let's get

real here, people !!

Any protocol that involves possible death is reason enough to avoid it.

Something isn't making sense here. Think about it. Chelation Therapy and

information regarding this must be carefully looked through and I bet anything

that all the information on it is not readily available to the general

population. We are looked upon as FOOLS, DESPERATE PEOPLE and they are taking

our $$$

and laughing at us.

Michele Cerruto

Mauldin, SC

ps- THANKS MRS. GOLDBERG for always keeping us in the loop !!

[Guest guest]

Thank you, Gaylen

Re: LET'S Think About this...

In a message dated 5/17/2006 1:39:50 PM Central Standard Time, isoaa@...

writes:

<<The sad truth is that parent's are becoming more desperate each day.

Autism is such a messed up situation- BLUNTLY speaking. >>

<<Parents are NOT well informed by the general INFO OUT THERE on this screwed

up situation we are all going to effected in one way or another. Let's get

real here, people !!>>

Pre-warning before I launch into my tirade: I'm coming off of a very

challenging few months dodging attacks from well-meaning family members who

believe

we are harming our son by following in the protocol " out of desperation " .

This is despite clear lab testing that shows improvement and progress in

numerous areas that is crystal clear to everyone except these particular

people

who have their own agenda that all kids will whither away without milk.

Now my tirade: Having worked with and communicated with many, many parents

of autistic kids over the years, and being a parent of one myself, I am very

offended by comments like this. True, there are some parents out there that

are

desperate, and not well informed, but the vast majority I encounter are

extremely thoughtful, well-read, intelligent people that don't rush into

dangerous

therapies or treatments for their kids. Bluntly speaking, until those wanting

to promote the protocol stop bashing other research in the field and

parents as moronic lemmings stupidly following the wrong theory, is not

going to be well-accepted as a treatment worth considering. Since I truly

believe

in this approach, I find it very sad that egos and dramatics continue to get

in the way of really helping all the kids.

<<Any protocol that involves possible death is reason enough to avoid it.>>

So, I guess you will be avoiding the protocol since more deaths have

been linked to SSRIs than to any chelation drug. Rather than

over-dramatizing

reports of deaths due to drug mix-ups, (which are only semi-related at best to

this " competing " treatment), why don't we focus on how beneficial is for

kids and talk up the science behind it and its success stories? Sure, we

could scare a few parents away from the other doctors and possibly help their

kids

in the long run, but wouldn't it be better to share the real science and

success of and ultimately help more parents and doctors to want to use

this

treatment because it works?

Ok, I'm done now. Think I need some chocolate, and maybe a vacation.

Gaylen

[Guest guest]

Gaylen,

I agree with you completely. I always appreciate your contributions to this

list.

Let's all remember that we did not get here without questioning our doctors

and the medical establishment. does not provide all the anwers. I,

for one, will not stop asking questions.

Unfortunately, there is no forum to discuss the integration of with

other beliefs about autism causes and treatment. That kind of discussion

has not been welcome on this list. I think it's a shame.

>From: " Cochran " <Ladyshrink111@...>

>Reply-

>< >

>Subject: Re: LET'S Think About this...

>Date: Thu, 18 May 2006 07:24:11 -0400

>

>Thank you, Gaylen

>

>

> Re: LET'S Think About this...

>

>

> In a message dated 5/17/2006 1:39:50 PM Central Standard Time,

>isoaa@...

> writes:

> <<The sad truth is that parent's are becoming more desperate each day.

> Autism is such a messed up situation- BLUNTLY speaking. >>

> <<Parents are NOT well informed by the general INFO OUT THERE on this

>screwed

> up situation we are all going to effected in one way or another. Let's

>get

> real here, people !!>>

>

> Pre-warning before I launch into my tirade: I'm coming off of a very

> challenging few months dodging attacks from well-meaning family members

>who believe

> we are harming our son by following in the protocol " out of

>desperation " .

> This is despite clear lab testing that shows improvement and progress in

> numerous areas that is crystal clear to everyone except these particular

>people

> who have their own agenda that all kids will whither away without milk.

>

> Now my tirade: Having worked with and communicated with many, many

>parents

> of autistic kids over the years, and being a parent of one myself, I am

>very

> offended by comments like this. True, there are some parents out there

>that are

> desperate, and not well informed, but the vast majority I encounter are

> extremely thoughtful, well-read, intelligent people that don't rush into

>dangerous

> therapies or treatments for their kids. Bluntly speaking, until those

>wanting

> to promote the protocol stop bashing other research in the field

>and

> parents as moronic lemmings stupidly following the wrong theory, is

>not

> going to be well-accepted as a treatment worth considering. Since I

>truly believe

> in this approach, I find it very sad that egos and dramatics continue to

>get

> in the way of really helping all the kids.

>

> <<Any protocol that involves possible death is reason enough to avoid

>it.>>

>

> So, I guess you will be avoiding the protocol since more deaths

>have

> been linked to SSRIs than to any chelation drug. Rather than

>over-dramatizing

> reports of deaths due to drug mix-ups, (which are only semi-related at

>best to

> this " competing " treatment), why don't we focus on how beneficial

>is for

> kids and talk up the science behind it and its success stories? Sure,

>we

> could scare a few parents away from the other doctors and possibly help

>their kids

> in the long run, but wouldn't it be better to share the real science and

> success of and ultimately help more parents and doctors to want to

>use this

> treatment because it works?

>

> Ok, I'm done now. Think I need some chocolate, and maybe a vacation.

> Gaylen

>

>

>

[Guest guest]

Nice post, thanks, ray

Re: LET'S Think About this...

In a message dated 5/17/2006 1:39:50 PM Central Standard Time, isoaa@...

writes:

<<The sad truth is that parent's are becoming more desperate each day.

Autism is such a messed up situation- BLUNTLY speaking. >>

<<Parents are NOT well informed by the general INFO OUT THERE on this screwed

up situation we are all going to effected in one way or another. Let's get

real here, people !!>>

Pre-warning before I launch into my tirade: I'm coming off of a very

challenging few months dodging attacks from well-meaning family members who

believe

we are harming our son by following in the protocol " out of desperation " .

This is despite clear lab testing that shows improvement and progress in

numerous areas that is crystal clear to everyone except these particular people

who have their own agenda that all kids will whither away without milk.

Now my tirade: Having worked with and communicated with many, many parents

of autistic kids over the years, and being a parent of one myself, I am very

offended by comments like this. True, there are some parents out there that are

desperate, and not well informed, but the vast majority I encounter are

extremely thoughtful, well-read, intelligent people that don't rush into

dangerous

therapies or treatments for their kids. Bluntly speaking, until those wanting

to promote the protocol stop bashing other research in the field and

parents as moronic lemmings stupidly following the wrong theory, is not

going to be well-accepted as a treatment worth considering. Since I truly

believe

in this approach, I find it very sad that egos and dramatics continue to get

in the way of really helping all the kids.

<<Any protocol that involves possible death is reason enough to avoid it.>>

So, I guess you will be avoiding the protocol since more deaths have

been linked to SSRIs than to any chelation drug. Rather than over-dramatizing

reports of deaths due to drug mix-ups, (which are only semi-related at best to

this " competing " treatment), why don't we focus on how beneficial is for

kids and talk up the science behind it and its success stories? Sure, we

could scare a few parents away from the other doctors and possibly help their

kids

in the long run, but wouldn't it be better to share the real science and

success of and ultimately help more parents and doctors to want to use this

treatment because it works?

Ok, I'm done now. Think I need some chocolate, and maybe a vacation.

Gaylen

[Guest guest]

In a message dated 5/18/2006 8:26:29 PM Central Standard Time,

elyse-g@... writes:

<<Dr. Goldberg is working with BrainMatters inc, to publish the research and

open trial clinics. >>

Wonderful! Any idea on the timing of when it will be published and where?

It was extremely encouraging to see that the Time article mentioned immune

dysfunction and brain inflamation. It would be great to see more research done

and published in this area.

Gaylen

[Guest guest]

That is what is finally happening, Dr. Goldberg is working with

BrainMatters inc, to publish the research and open trial clinics. The

goal is to teach other doctors in other states with Spect and

treatment options being available. This has been such an up hill

battle because many say they are doing but add their own twist

on it and real researchers have heart failure if you mention heavy

metals. The point being the time has finally come that you will be

proud to say you are doing and how ahead of your time you were

for your child.

Elyse

>

> Nice post, thanks, ray

>

> Re: LET'S Think About this...

>

> In a message dated 5/17/2006 1:39:50 PM Central Standard Time,

isoaa@...

> writes:

> <<The sad truth is that parent's are becoming more desperate each

day.

> Autism is such a messed up situation- BLUNTLY speaking. >>

> <<Parents are NOT well informed by the general INFO OUT THERE on

this screwed

> up situation we are all going to effected in one way or another.

Let's get

> real here, people !!>>

>

> Pre-warning before I launch into my tirade: I'm coming off of a

very

> challenging few months dodging attacks from well-meaning family

members who believe

> we are harming our son by following in the protocol " out of

desperation " .

> This is despite clear lab testing that shows improvement and

progress in

> numerous areas that is crystal clear to everyone except these

particular people

> who have their own agenda that all kids will whither away without

milk.

>

> Now my tirade: Having worked with and communicated with many, many

parents

> of autistic kids over the years, and being a parent of one myself,

I am very

> offended by comments like this. True, there are some parents out

there that are

> desperate, and not well informed, but the vast majority I encounter

are

> extremely thoughtful, well-read, intelligent people that don't rush

into dangerous

> therapies or treatments for their kids. Bluntly speaking, until

those wanting

> to promote the protocol stop bashing other research in the

field and

> parents as moronic lemmings stupidly following the wrong theory,

is not

> going to be well-accepted as a treatment worth considering. Since

I truly believe

> in this approach, I find it very sad that egos and dramatics

continue to get

> in the way of really helping all the kids.

>

> <<Any protocol that involves possible death is reason enough to

avoid it.>>

>

> So, I guess you will be avoiding the protocol since more

deaths have

> been linked to SSRIs than to any chelation drug. Rather than over-

dramatizing

> reports of deaths due to drug mix-ups, (which are only semi-related

at best to

> this " competing " treatment), why don't we focus on how beneficial

is for

> kids and talk up the science behind it and its success stories?

Sure, we

> could scare a few parents away from the other doctors and possibly

help their kids

> in the long run, but wouldn't it be better to share the real

science and

> success of and ultimately help more parents and doctors to

want to use this

> treatment because it works?

>

> Ok, I'm done now. Think I need some chocolate, and maybe a

vacation.

> Gaylen

>

>

>

[Guest guest]

elyse14 <elyse-g@...> wrote: real researchers have heart failure if

you mention heavy

metals.

You are not kidding!!! I had a hospital physician/friend ask a few

toxicologist about this because I have caught a few episodes of mystery

diagnosis on Discovery Health Channel where the hospital's diagnosis ended up

being " heavy metal poisoning " confirmed by hair analysis. I watched 2 separate

cases of this, had the friend contact the toxicologists at the 2 different

hospitals where the 2 different people were tested and ask them -- you diagnose

people with heavy metal poisoning by hair analysis at your hospital? Answer --

of course we do. And then they are chelated? -- Of course. Next question --

do your test children with autism for heavy metal poisoning? Answer -- um, er,

ah, well, (heart failure) no that's not something we would do.

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

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