More Evidence Needed Pt. 2

May 28, 2002

Hello Dave--

Have you had your child tested for metals? I don't know if it was in

this thread or some other thread but if your child is testing out as

being high in metals, then doesn't it make sense to look at chelation

as not necessarily treating the autism, but treating the metal

toxicity issue? I mean, if you test your child for diabetes,

wouldn't you treat the diabetes? If you test your child for metal

toxicity, wouldn't you treat the metal toxicity? Maybe try thinking

of it this way-- instead of going into it expecting to have dramatic

changes in the autistic condition itself, look at it as treating a

condition that your child has, and if you see benefits, great, if

not, then at least the metals are gone from the child's body.

My son has sensory integration dysfunction, not autism... and while

he's undergone the SI treatments, his scores on motor testing is not

that vastly different. However, the quality of life is SO much

better for him...how do you measure things like: can tolerate socks

covering his ankles, can sit in a regular chair to eat dinner, can

feed himself... Things like that don't change your score on a

standardized test, but they make a difference in quality of life.

Please don't make decisions based solely on empirical evidence that

something works or doesn't work. Treat whatever condition your child

has.

W

May 28, 2002

Hi again Dave-- I also wanted to mention that in regard to studies,

and using standardized testing measures-- that is one of those

problems that crops up with autistic kids-- there really are not

many " good " tests that measure the things that parents are looking

for with their autistic kids-- for example: eye contact. How do you

measure eye contact? Some people think, well, you simply time it--

if they increase from fleeting eye contact to being able to maintain

10 seconds of eye contact-- and then you throw that into a

standardized test measure-- that's proof! Well, actually, I would

prefer parent or teacher reports over something like this. Because

eye contact is not " staring " at someone. You can teach an autistic

child to stare at someone for ten seconds, however, I would much

rather take a chelated child who is able to use " natural " eye contact

that varies from situation to situation. In some situations, making

fleeting eye contact is socially acceptable... in other situations,

you want more sustained eye contact. My point is, the areas that

parents are seeking to improve REGARDLESS of whatever " treatment "

they are using-- ABA, enzymes, chelation, etc., in my opinion are

BEST measured by not only parent report, but therapist report,

grandparent report, neighbor report-- anyone who sees the child and

can tell you what behaviors were not there before, and what is there

now. Those to me are more valuable than any Peabody test, or WISC

test, or whatever test. I can understand what you are saying about

parent reports being questionable, and that is why I think that

whatever you treat your child with, you always want to see if other

people can " see it " , too. But to rely solely on studies to make your

decisions... time is a wastin'.

W

> Hello again everyone.

>

> First of all I want to thank everyone who has responded to my

inquiry.

> I appreciated everyone relating their own personal experience.

>

> Unfortunately I'm still quite unsatisfied.

> Thanks again,

>

> Dave

May 28, 2002

> Unfortunately I'm still quite unsatisfied.

> What I am hearing is that there is no good evidence that chelation

of

> Hg works as a treatment for autism outside of anectodal perental

> reports!

>

> I find this surprising. When I initially posed this request I fully

> expected that there would be results from studies and literature out

> there.

Ummm... we're not QuackWatch worshippers here. We think for

ourselves.

There are no published studies because of two factors:

this is relatively new, and

medline indexed journals reject studies that are controversial.

Unfortunately they also accept a lot of studies that are innacurate,

or where the doc's report something other than what the patients

experienced, etc.

It is also an unfortunate reality that it takes 6 months or a year's

work (at least) to get a paper together well enough to publish it.

This is time that IMPORTANT DOCTORS get hundreds of thousands of

federal research dollars to spend filling the literature up with what

they think, while the doctors actually making all the discoveries of

new ways to help sick people have to take time away from their clinic

and lose money preparing papers on their own if they want to see

studies published. For most doctors this is not a financial

possibility. Of course, those who operate clinics doing things not

yet covered in the literature don't qualify for federal grant money to

write papers.

So on this list we are SCIENTIFIC and pay attention to empirical

evidence rather than to the " received wisdom " of medline indexed

medical journals.

Unfortunately, many people don't find real evidence convincing, they

would rather have important doctors write down what they should think

in medical journals.

BTW, most of what these important doctors actually do in their

practices is no more proven than chelation as a treatment for autism.

Find me any controlled trial of general anesthesia for the alleviation

of surgical pain, of the effectiveness of abdominal palpitation in

arriving at a diagnosis, or on gall bladder or appendix surgery for

treating the relevant conditions. These studies do not exist. Yet

when asked to volunteer for double blind, placebo controlled crossover

studies of general anesthesia to control surgical pain, all the same

doc's who insist on such trials for other things refuse in horror.

After all, they know the stuff THEY do works, they don't think they

should have to prove it. It is the stuff OTHER doctors do that

shouldn't be done until the IMPORTANT DOCTORS decide it is proven

enough to start publishing papers on it.

So if you want legitimate science - lots of real data, lots of

discussion of the simplest theories that might explain all of it -

this board is a good place for you.

If you want politically correct stuff from medical journals, you

aren't going to find it here, or find us discussing much that falls

under that umbrella.

May 28, 2002

Avril:

I find myself, once again, in the postion to thank all of you parents for

sharing your incredible stories! It wasn't the " stories " that got me off the

road of pure (and only) ABA therapies for my son...but it sure has kept me

going on the chelation track! While he is " older " than most of the kids who

have recovered (should I put that in the " quotes " !? OMG!), everyone who has

met my son and tried to help him tells me he is " RIGHT THERE!!!! " How

frustrating to be " right there " and not find that thing that " puts him over

the edge " so-to-speak! With the lead dumping out of him right now...I have a

renewed hope that we may have found " that thing " !

And Hope brings about patience...and with patience, perserverance...(or

something along those lines! LOL!)

All My Best,

May 28, 2002

I WILL RESPOND TO YOUR WELL THOUGHT OUT LETTER IN CAPS SO IT IS EASY

TO SEE WHAT YOU WROTE, AND MY REPONSE. ROBERT

> Hello again everyone.

>

> First of all I want to thank everyone who has responded to my

inquiry.

> I appreciated everyone relating their own personal experience.

>

> Unfortunately I'm still quite unsatisfied.

> What I am hearing is that there is no good evidence that chelation

of

> Hg works as a treatment for autism outside of anectodal perental

> reports!

> THIS IS TRUE, MEDICAL PROFESSIONALS HAVE KNOWN THAT LEAD AND

MERCURY IS BAD FOR CHILDREN AND OTHER LIVING THINGS FOR ABOUT 2000

YEARS. THEY ARE JUST NOW STARTING TO TAKE TOXIC METALS SERIOUSLY.

> I find this surprising. When I initially posed this request I fully

> expected that there would be results from studies and literature out

> there. I have seen the work by Dr. Amy Holmes earlier but did not

> find it incredibly convincing because the effectiveness of the

> treatment is totally gleaned from parental reports. Despite what an

> earlier poster said, parental reports are very unreliable and would

> not be considered more accurate than clinical evaluations. After

all,

> if the rest of the world doesn't see my son improve then it doesn't

> really help him.

> There have been lots of studies where parents report great gains but

> before-and-after evaluations have shown no measurable change (of

> course none of these tests had to do with Hg chelation but usually

> other disabilities). One example of this is a recent one regarding

> secretin treatment of autistic children where before-and-after

> evaluations showed no increase in the childrens measurable

> performance... but parents stated that there was significant

improvement. I HAVE NEVER BELIEVED IN SECRETIN TREATMENTS, I THINK

IT IS BETTER TO LOOK FOR CAUSE AND CURE, NOT TREATMENT.

>

> Now, for all of you who told your own stories regarding this

> therapy... please don't take this as a statement that I think you're

> lying or anything. It's just that I don't make a habit of choosing

> medical treatments based on anectodal reports of people I don't know

> over the internet. I'm just looking for something a little more

> substantial and from what you're all saying it appears there is

> nothing substantial on the subject. YES THERE IS A LOT OF

SUBSTANTIAL INFORMATION ON THE SUBJECT. GO TO MY POST ABOUT MAINE

LEAD PROJECT, AND START READING.

>

> Don't get me wrong... I want this to be true. I would love nothing

> better than to hear that " Hg chelation with ABA therapy will cure

> autism " . Or even that my son will certainly improve with chelation

> therapy. I really want this to be true!

> I'm just trying to control myself so I don't go rushing in to

unproven

> treatments because of my desperation... and it's hard.

> YOU DO NOT HAVE TO RUSH IN, THERE IS SOOO MUCH INFORMATION OUT

THERE. START WITH THE MAINE SITE, WHEN YOU RUN OUT OF THAT I CAN

GIVE YOU MORE.

> I'm a bit of a hypocrite when I say all this because we've gone gfcf

> for four months now (ever since we found out) based entirely on

> parental anectdotal reports. However, going gfcf just means

reading a

> little and changing the way we cook and eat... easy stuff.

> Hg chelation a pretty serious procedure though, and I was hoping for

> some strong indicators that I can hang my hat on.

> In my reading I've seen to many treatments-du-jour come and go to

run

> into chelation without truly compelling evidence that it works.

>

> As I said, I'm hoping that it's true... we're sending off some hair

> samples to see what the results are. But outside of a clear

indicator

> that Hg poisoning is present we're going to hold off.

>THE MAINE RESEARCHERS MAINTAN THAT A PARTICLE OF LEAD THE SIZE OF

ONE GRAIN OF SAND IS ENOUGH TO MAKE A CHILD TOXIC. MERCURY IS MANY

TIMES MORE TOXIC THAN LEAD. ALSO SINCE doctors HAVE INJECTED YOUR

CHILD WITH MERCURY (thimerosal) VACCINES, I ASSUME THAT MERCURY IS

PRESENT IN YOUR CHILD. IT HAS TO BE SOMEWHERE. ALSO IN THE LAST 3

YEARS THE FEDERAL U.S. GOVERNMENT HAS SPENT ALMOST 500 MILLION IN

MERCURY RESEARCH, AS WELL AS REMOVING MOST OF THE MERCURY

(thimerosal) FROM THE VACCINES (shots). THERE MUST BE A REASON?

> If anyone ever comes across some well controlled studies with

> non-parental evaluations then I would love to hear. Please post as

> soon as you discover some. I myself am going to try to directly

> contact some of the researchers in this area... hopefully they will

> have some more recent results that just aren't published yet. If I

> hear anything interesting I'll post. IF YOU WISH TO READ THE

LATEST RESEARCH ON TOXIC METALS, GO TO THE SEARCH FUNCTION OF THIS

SITE AND TYPE IN LTL IN SMALL CASE. THAT WILL BRING UP MY POSTS.

THE INFORMATION THAT I READ IS USUALLY A YEAR OLD TO A FEW WEEKS.

ALSO THE UNIV. CALIF. SANTA CRUZ SITE AS WELL AS UC DAVIS ARE GOOD

SITES FOR THE MOST CURRENT RESEARCH. ROBERT

>

> Thanks again,

>

> Dave

May 28, 2002

Dear Dave,

Sorry to say if you are looking for a tried and true treatment/cure

for autism you are in the wrong era. Maybe in 20 years they will

have a handle on it but I am not holding my breath. Our children are

poisoned by the very system that you are looking to for a sure

thing. The poison has affected them all in different ways and their

bodies heal at different rates and to different extents.

I am feeling that you don't want to waste time on something that

won't work. Even if there was a study saying that of all the

children that met Andy's counting rules were chelated with Andy's

protocol for a year, and 95% of these children improved an average

of 50% on an IQ test your child (or mine for that matter) could

still be in the 5% that didn't improve at all!

The reading I have done seems to support the idea that children who

are getting well are being raised by people who try many different

things and hit upon the ones that help their child the most.

Sharing ideas is what this board and others like it are all about.

There is no ONE cure for all autistic children. Good luck in the

search for what works for your family, best wishes, Maddie

> Hello again everyone.

>

> First of all I want to thank everyone who has responded to my

inquiry.

> I appreciated everyone relating their own personal experience.

>

> Unfortunately I'm still quite unsatisfied.

> What I am hearing is that there is no good evidence that chelation

of

> Hg works as a treatment for autism outside of anectodal perental

> reports!

>

> I find this surprising. When I initially posed this request I

fully

> expected that there would be results from studies and literature

out

> there. I have seen the work by Dr. Amy Holmes earlier but did not

> find it incredibly convincing because the effectiveness of the

> treatment is totally gleaned from parental reports. Despite what

an

> earlier poster said, parental reports are very unreliable and would

> not be considered more accurate than clinical evaluations. After

all,

> if the rest of the world doesn't see my son improve then it doesn't

> really help him.

> There have been lots of studies where parents report great gains

but

> before-and-after evaluations have shown no measurable change (of

> course none of these tests had to do with Hg chelation but usually

> other disabilities). One example of this is a recent one regarding

> secretin treatment of autistic children where before-and-after

> evaluations showed no increase in the childrens measurable

> performance... but parents stated that there was significant

improvement.

>

> Now, for all of you who told your own stories regarding this

> therapy... please don't take this as a statement that I think

you're

> lying or anything. It's just that I don't make a habit of choosing

> medical treatments based on anectodal reports of people I don't

know

> over the internet. I'm just looking for something a little more

> substantial and from what you're all saying it appears there is

> nothing substantial on the subject.

>

> Don't get me wrong... I want this to be true. I would love nothing

> better than to hear that " Hg chelation with ABA therapy will cure

> autism " . Or even that my son will certainly improve with chelation

> therapy. I really want this to be true!

> I'm just trying to control myself so I don't go rushing in to

unproven

> treatments because of my desperation... and it's hard.

>

> I'm a bit of a hypocrite when I say all this because we've gone

gfcf

> for four months now (ever since we found out) based entirely on

> parental anectdotal reports. However, going gfcf just means

reading a

> little and changing the way we cook and eat... easy stuff.

> Hg chelation a pretty serious procedure though, and I was hoping

for

> some strong indicators that I can hang my hat on.

> In my reading I've seen to many treatments-du-jour come and go to

run

> into chelation without truly compelling evidence that it works.

>

> As I said, I'm hoping that it's true... we're sending off some hair

> samples to see what the results are. But outside of a clear

indicator

> that Hg poisoning is present we're going to hold off.

>

> If anyone ever comes across some well controlled studies with

> non-parental evaluations then I would love to hear. Please post as

> soon as you discover some. I myself am going to try to directly

> contact some of the researchers in this area... hopefully they will

> have some more recent results that just aren't published yet. If I

> hear anything interesting I'll post.

>

> Thanks again,

>

> Dave

May 28, 2002

Great post

I think best to get testing and make decisions from there. I'm not happy

about doing this alone (gave up after Dr number 11 - we are UK ) but when you

understand the damage Lead and Mercury and other stuff is doing to your

childs brain, you have to try and get it out. I'm more scared of leaving it

there.

I want a healthy kid

Mandi in UK

> Hello Dave--

>

> Have you had your child tested for metals? I don't know if it was in

> this thread or some other thread but if your child is testing out as

> being high in metals, then doesn't it make sense to look at chelation

> as not necessarily treating the autism, but treating the metal

> toxicity issue? I mean, if you test your child for diabetes,

> wouldn't you treat the diabetes? If you test your child for metal

> toxicity, wouldn't you treat the metal toxicity? Maybe try thinking

> of it this way-- instead of going into it expecting to have dramatic

> changes in the autistic condition itself, look at it as treating a

> condition that your child has, and if you see benefits, great, if

> not, then at least the metals are gone from the child's body.

>

> My son has sensory integration dysfunction, not autism... and while

> he's undergone the SI treatments, his scores on motor testing is not

> that vastly different. However, the quality of life is SO much

> better for him...how do you measure things like: can tolerate socks

> covering his ankles, can sit in a regular chair to eat dinner, can

> feed himself... Things like that don't change your score on a

> standardized test, but they make a difference in quality of life.

> Please don't make decisions based solely on empirical evidence that

> something works or doesn't work. Treat whatever condition your child

> has.

>

> W

>

May 28, 2002

Gee Dave if you smell smoke will you wait to see the fire to know it is

real? Is your child a mercury kid or not. If not don't chelate if so do, it

is that simple. Personally I don't trust the people writing the sutdies and

the cdc and so forth, after all they tell expecting Moms to avoid fish due

to mercury then shoot our kids up with the stuff........Do you want them

telling you if you should chelate or not? Not me! PS mercury poisoned

childern are not autistic, they just act in a way that wins them that lable.

[ ] More Evidence Needed Pt. 2

> Hello again everyone.

>

> First of all I want to thank everyone who has responded to my inquiry.

> I appreciated everyone relating their own personal experience.

>

> Unfortunately I'm still quite unsatisfied.

> What I am hearing is that there is no good evidence that chelation of

> Hg works as a treatment for autism outside of anectodal perental

> reports!

>

> I find this surprising. When I initially posed this request I fully

> expected that there would be results from studies and literature out

> there. I have seen the work by Dr. Amy Holmes earlier but did not

> find it incredibly convincing because the effectiveness of the

> treatment is totally gleaned from parental reports. Despite what an

> earlier poster said, parental reports are very unreliable and would

> not be considered more accurate than clinical evaluations. After all,

> if the rest of the world doesn't see my son improve then it doesn't

> really help him.

> There have been lots of studies where parents report great gains but

> before-and-after evaluations have shown no measurable change (of

> course none of these tests had to do with Hg chelation but usually

> other disabilities). One example of this is a recent one regarding

> secretin treatment of autistic children where before-and-after

> evaluations showed no increase in the childrens measurable

> performance... but parents stated that there was significant improvement.

>

> Now, for all of you who told your own stories regarding this

> therapy... please don't take this as a statement that I think you're

> lying or anything. It's just that I don't make a habit of choosing

> medical treatments based on anectodal reports of people I don't know

> over the internet. I'm just looking for something a little more

> substantial and from what you're all saying it appears there is

> nothing substantial on the subject.

>

> Don't get me wrong... I want this to be true. I would love nothing

> better than to hear that " Hg chelation with ABA therapy will cure

> autism " . Or even that my son will certainly improve with chelation

> therapy. I really want this to be true!

> I'm just trying to control myself so I don't go rushing in to unproven

> treatments because of my desperation... and it's hard.

>

> I'm a bit of a hypocrite when I say all this because we've gone gfcf

> for four months now (ever since we found out) based entirely on

> parental anectdotal reports. However, going gfcf just means reading a

> little and changing the way we cook and eat... easy stuff.

> Hg chelation a pretty serious procedure though, and I was hoping for

> some strong indicators that I can hang my hat on.

> In my reading I've seen to many treatments-du-jour come and go to run

> into chelation without truly compelling evidence that it works.

>

> As I said, I'm hoping that it's true... we're sending off some hair

> samples to see what the results are. But outside of a clear indicator

> that Hg poisoning is present we're going to hold off.

>

> If anyone ever comes across some well controlled studies with

> non-parental evaluations then I would love to hear. Please post as

> soon as you discover some. I myself am going to try to directly

> contact some of the researchers in this area... hopefully they will

> have some more recent results that just aren't published yet. If I

> hear anything interesting I'll post.

>

> Thanks again,

>

> Dave

>

> =======================================================

>

May 28, 2002

Hi Dave,

I hope someone here says something that will help you change your mind. If

I relied on studies, my son would still be staring into space and banging

his head. My son was a responder to *secretin*, and to the gf/cf diet and

to enzymes. We are currently chelating because in doing research I read

Binstock's paper, *Autism: a novel form of mercury poisoning* and I

realized that the thimerosol in the vaccines had started my son down the

road to regressive autism. Though NT now, his bowels are still very bad

and so are his allergies. Testing shows very high metals including lead,

so out they come. I researched chelation for two years before we made the

decision to chelate. We had that luxury because the other therapies, none

of them mainstream, had done their job.

For me, it was like a detective novel where all the pieces just came

together, esp. my son's response to enzymes. That was the final piece of

the puzzle for me, realizing that his body was no longer producing enzymes

and hadn't been for a long while. Mercury does that to a person's

body. And when your body can't digest food or receive nutrients from it,

well, it gets sick.

I don't expect you to believe me. But I do hope that you will start doing

your own detective work. Like someone said here on the board, please don't

sit around expecting that mainstream medicine is going to own up to what

they did to us. They are fighting it tooth and nail. And thank the

heavens for men like Sen. Dan Burton. Even though I'm a Democrat, we can

sure use some more men like him, and the others who are so courageously

sticking out their necks.

And hugs to you Theresa Binstock, (and Andy, Devin, , Dana and

so many others I can't even list them all.) It's because of all of you and

the DAN protocol that we got our son back. Gerry does so really well

now. You can't tell him from the other kids, and that is just the greatest

feeling. I wish I could get to the Parent's Choice conference; just so I

could thank some people from these boards in person.

All the best,

Avril, mom to Gerry (2/19/97)

May 28, 2002

Hi Dave,

I see your post is getting lots of responses. Hopefully not

making you feel " bullied " !

> First of all I want to thank everyone who has responded to my

inquiry.

> I appreciated everyone relating their own personal experience.

>

> Unfortunately I'm still quite unsatisfied.

> What I am hearing is that there is no good evidence that chelation

of

> Hg works as a treatment for autism outside of anectodal perental

> reports!

yep, I think you are getting the correct picture

> I find this surprising.

1. this is very new

2. this is very controversial

I think the issues as to getting research done and " accepted " are

also pretty daunting, although I don't know much about such things.

For example, I don't think there are similar studies of adults

doing amalgam replacement and chelation either, and people have

been doing that much longer....

> When I initially posed this request I fully

> expected that there would be results from studies and literature out

> there. I have seen the work by Dr. Amy Holmes earlier but did not

> find it incredibly convincing because the effectiveness of the

> treatment is totally gleaned from parental reports. Despite what an

> earlier poster said, parental reports are very unreliable and would

> not be considered more accurate than clinical evaluations. After

all,

> if the rest of the world doesn't see my son improve then it doesn't

> really help him.

sorry to beat what may be a dead horse here, but I think there

are quite a number of LOVE_LETTERS entries where OTHER people

(not the parents) are noticing improvements. But this is still

" anecdotal " and not measured or quantified.

> There have been lots of studies where parents report great gains but

> before-and-after evaluations have shown no measurable change (of

> course none of these tests had to do with Hg chelation but usually

> other disabilities). One example of this is a recent one regarding

> secretin treatment of autistic children where before-and-after

> evaluations showed no increase in the childrens measurable

> performance... but parents stated that there was significant

improvement.

I actually think your point is interesting and valid. At the same

time I CANNOT IMAGINE that a parent would think their child is

(for example) talking when they are not really talking, or going

from 2 word phrases to sentences when they are really still using

2 word phrases. I cannot fathom someone imagining that!

Just my opinion.

> Now, for all of you who told your own stories regarding this

> therapy... please don't take this as a statement that I think you're

> lying or anything. It's just that I don't make a habit of choosing

> medical treatments based on anectodal reports of people I don't know

> over the internet. I'm just looking for something a little more

> substantial and from what you're all saying it appears there is

> nothing substantial on the subject.

right. there is not. so now you are in the same boat with all of

us, where you have the situation of getting to decide what to do

(or not) IN SPITE OF non-optimum data. This one is a different

challenge/decision than what you were hoping for. Granted. Very

much granted. How you decide in the face of non-optimum data

is up to you. I would add that I OFTEN think the data available

is not optimum, so this situation seems " not perfect " to me,

but also not really so unique.

as several people pointed out, though, there IS tons and tons

of evidence that mercury and lead (etc) are VERY toxic. If

you want to read studies about that, I think there are several

hundred here: http://home.earthlink.net/~berniew1

> Don't get me wrong... I want this to be true. I would love nothing

> better than to hear that " Hg chelation with ABA therapy will cure

> autism " . Or even that my son will certainly improve with chelation

> therapy. I really want this to be true!

I am with you-- I also want it to be true.

> I'm just trying to control myself so I don't go rushing in to

unproven

> treatments because of my desperation... and it's hard.

well, hang around a while. you don't have to rush into it.

you can consider it as much as you please. you just have to

do it under the EXISTING conditions rather than other conditions

that would make it easier for you to assess.

I am sincere when I say that I think the time and effort you

expend in hanging around and thinking it all over are worth it.

There are few things I've encountered which I think change lives

the way chelation does. I'm sorry if that sounds a bit corny,

I am very much serious. And I do NOT mean it changes " every "

child's life--- but it does change things a lot for MANY kids.

> I'm a bit of a hypocrite when I say all this because we've gone gfcf

> for four months now (ever since we found out) based entirely on

> parental anectdotal reports. However, going gfcf just means reading

a

> little and changing the way we cook and eat... easy stuff.

Well, what you just said makes perfect sense to me, and I don't

think you are a hypocrite. In the face of non-optimum information,

you assessed the risks/costs and potential benefits of GFCF and

decided it was worth

trying out. Exactly the process that many people use in

deciding to try chelation or anything else.

I would add that although chelation MAY sound very hard and

very serious to you right at this point in time, this is not

a fixed opinion that everyone shares. I think I take the

risks seriously, but I do NOT think chelation is overly

difficult. Quite the contrary, I think LEARNING about it

is very challenging, and doing it is much easier than learning

about it! LOL. Since it is a very long slow process, there is

lots of time to consider things. We tend to discuss the details

a lot around here...... there are always questions as you go

along....

> Hg chelation a pretty serious procedure though, and I was hoping for

> some strong indicators that I can hang my hat on.

> In my reading I've seen to many treatments-du-jour come and go to

run

> into chelation without truly compelling evidence that it works.

okay, well, now I'm REALLY beating a dead horse, but, personally,

I find the stuff in LOVE_LETTERS ***extremely*** compelling.

(Some stuff more than other stuff.)

I'm a " true beliver " though, so don't go by me LOL--- read it

yourself. Also read the file called

KennysProgressReportsFrom (or something like that). Long

but very compelling. And definately anecdotal.

As for whether " it works " I think it is only fair to look at

that as meaning whether it removes mercury from the

body. It does not " cure " autism in my book, it " just " removes

heavy metals. If you want some studies on whether " it works "

in this sense, Andy can refer you to some. There ARE studies

of the effectiveness of DMSA, for example. A number are

cited in ANDY_INDEX.... Probably still not PERFECT, but hey,

there are studies anyhow! And Andy can banter all about what

the studies do or do not prove......

> As I said, I'm hoping that it's true... we're sending off some hair

> samples to see what the results are. But outside of a clear

indicator

> that Hg poisoning is present we're going to hold off.

this seems like a very good step. you may find mercury or you

may find other metals. I hope you read HOW_TO_hair_test ?

> If anyone ever comes across some well controlled studies with

> non-parental evaluations then I would love to hear. Please post as

> soon as you discover some. I myself am going to try to directly

> contact some of the researchers in this area... hopefully they will

> have some more recent results that just aren't published yet. If I

> hear anything interesting I'll post.

very good.

best wishes,

Moria

May 28, 2002

I'm sure your reading all the replys that are coming your way. What

suprises me is that you sound as if you want what's best for your

child, but for whatever of your own reasons, you are unwilling to try

chelating. Don't chelate, wait for the REAL research, and when your

poor son is still not improved the way that us " parents " tell you that

ours have, you have only to live with yourself. I can tell you that I

was terrified that I would cause more harm to my son. Then I thought,

the mercury (and other metals) is still causing problems and if I

don't try to excrete it then I am allowing it to continue to do harm.

So, what choice was there. Day 3, Round 1, my son was talking and I

mean sentences! And, when he went pee and it smelled horrible, I

jumped for joy. I hope for your childs sake, that you decide to help

him/her via chelating while you can get the support of the rare

people like Andy, who are not paid for all his time that he gives

everyone here on a daily basis. I am so glad that I didn't pass up

this opportunity.

Debbie

> Hello again everyone.

>

> First of all I want to thank everyone who has responded to my

inquiry.

> I appreciated everyone relating their own personal experience.

>

> Unfortunately I'm still quite unsatisfied.

> What I am hearing is that there is no good evidence that chelation

of

> Hg works as a treatment for autism outside of anectodal perental

> reports!

>

> I find this surprising. When I initially posed this request I fully

> expected that there would be results from studies and literature out

> there. I have seen the work by Dr. Amy Holmes earlier but did not

> find it incredibly convincing because the effectiveness of the

> treatment is totally gleaned from parental reports. Despite what an

> earlier poster said, parental reports are very unreliable and would

> not be considered more accurate than clinical evaluations. After

all,

> if the rest of the world doesn't see my son improve then it doesn't

> really help him.

> There have been lots of studies where parents report great gains but

> before-and-after evaluations have shown no measurable change (of

> course none of these tests had to do with Hg chelation but usually

> other disabilities). One example of this is a recent one regarding

> secretin treatment of autistic children where before-and-after

> evaluations showed no increase in the childrens measurable

> performance... but parents stated that there was significant

improvement.

>

> Now, for all of you who told your own stories regarding this

> therapy... please don't take this as a statement that I think you're

> lying or anything. It's just that I don't make a habit of choosing

> medical treatments based on anectodal reports of people I don't know

> over the internet. I'm just looking for something a little more

> substantial and from what you're all saying it appears there is

> nothing substantial on the subject.

>

> Don't get me wrong... I want this to be true. I would love nothing

> better than to hear that " Hg chelation with ABA therapy will cure

> autism " . Or even that my son will certainly improve with chelation

> therapy. I really want this to be true!

> I'm just trying to control myself so I don't go rushing in to

unproven

> treatments because of my desperation... and it's hard.

>

> I'm a bit of a hypocrite when I say all this because we've gone gfcf

> for four months now (ever since we found out) based entirely on

> parental anectdotal reports. However, going gfcf just means reading

a

> little and changing the way we cook and eat... easy stuff.

> Hg chelation a pretty serious procedure though, and I was hoping for

> some strong indicators that I can hang my hat on.

> In my reading I've seen to many treatments-du-jour come and go to

run

> into chelation without truly compelling evidence that it works.

>

> As I said, I'm hoping that it's true... we're sending off some hair

> samples to see what the results are. But outside of a clear

indicator

> that Hg poisoning is present we're going to hold off.

>

> If anyone ever comes across some well controlled studies with

> non-parental evaluations then I would love to hear. Please post as

> soon as you discover some. I myself am going to try to directly

> contact some of the researchers in this area... hopefully they will

> have some more recent results that just aren't published yet. If I

> hear anything interesting I'll post.

>

> Thanks again,

>

> Dave

May 28, 2002

Avril,

how long have you been chelating ? what are you using? Congratulations to

you and your son. myson was born 2 months after yours and is doing

well.....not quite as well as yurs maybe, but getting there. thank you for

sharing and congrats, tracy

Re: [ ] More Evidence Needed Pt. 2