Re: Where is best place to start research?

[Guest guest]

What's " everything? " . A good place to start would be Dr Cutlers books. Also

there is a great NP who has been through the DAN training but is an expert in AC

protocol, , based out of Seattle.

>

> I have a 7 year old little boy. He has been GF/CF for 4 years. We have done

everything but chelation and have only seen mild improvements. His DAN wanted

to do IV chelation but we feel there are too many risks. Where is the best

place to start researching this Andy Cutler protocol?

>

> I want to have all my facts down before we think about trying.

>

> Thank you,

> Abi

>

[Guest guest]

I second that; get the book(s) by Andy Cutler. Also, read the files here on

chelation, plus the Files on the ABMD and Recovery From Autism groups if you are

a member. You can also peruse Andy's website. http://noamalgam.com/

That's where I started researching in the messageboard Files and archives, and

Andy's books. We haven't started AC chelation yet. I start my chelation this

week, and our son's will be as soon as I receive his test results back. My

husband also wants me to find a doc to 'monitor' our son's chelation, so that

might postpone things.

Sheila

[Guest guest]

The Dr thing is a challenge for some as you really do not need one to do it but

many feel much more comfortable with one. However, there are only a handful in

all of the us who are knowledgable and do true AC chelation. Andy offers

private consultations which he works hand in hand with your dr, buy again you

have to find an open minded willing dr.

>

> I have a 7 year old little boy. He has been GF/CF for 4 years. We have done

everything but chelation and have only seen mild improvements. His DAN wanted

to do IV chelation but we feel there are too many risks. Where is the best

place to start researching this Andy Cutler protocol?

>

> I want to have all my facts down before we think about trying.

>

> Thank you,

> Abi

>

[Guest guest]

Read Dr. Cutler's book. I think Moria Merriwether has a website that sums

things up, as well. Read the files section on chelation.

You are smart to avoid IV chelation. My son has serious reactions and it

brought back stimming, OCD, and sound sensitivity. Steer away from that.

[Guest guest]

LOL. It feels like we have done everything.......GF/CF diet, supplements, MB12

shots, Secretin, HBOT, spironolactone.....

We just did not ever feel comfortable with the IV chelation. But then I came

across this group during online research and this form of chelation has us so

hopeful.

Thanks for the info. I will see if I can find his books. Just want to make

sure we know what we are doing and have everything in place.

Abi

On Sat Feb 26th, 2011 9:27 PM EST ideals04 wrote:

>

>What's " everything? " . A good place to start would be Dr Cutlers books. Also

there is a great NP who has been through the DAN training but is an expert in AC

protocol, , based out of Seattle.

>

>

>

>>

>> I have a 7 year old little boy. He has been GF/CF for 4 years. We have done

everything but chelation and have only seen mild improvements. His DAN wanted

to do IV chelation but we feel there are too many risks. Where is the best

place to start researching this Andy Cutler protocol?

>>

>> I want to have all my facts down before we think about trying.

>>

>> Thank you,

>> Abi

>>

>

>

[Guest guest]

Thanks for the link, Sheila! What is ABMD? I have not heard of recovery from

autism. Is that a group like this one? I am brand new to the

groups. I wish I had known about this kind of support 4 years ago.

Abi

On Sat Feb 26th, 2011 9:37 PM EST the_murdocks2004 wrote:

>I second that; get the book(s) by Andy Cutler. Also, read the files here on

chelation, plus the Files on the ABMD and Recovery From Autism groups if you are

a member. You can also peruse Andy's website. http://noamalgam.com/

>

>That's where I started researching in the messageboard Files and archives, and

Andy's books. We haven't started AC chelation yet. I start my chelation this

week, and our son's will be as soon as I receive his test results back. My

husband also wants me to find a doc to 'monitor' our son's chelation, so that

might postpone things.

>

>Sheila

>

[Guest guest]

Thank you, Haven. Something about IV chelation just did not sit right with my

husband and me. I am sorry your son had bad reactions to it.

Abi

On Sun Feb 27th, 2011 12:16 AM EST Haven DeLay wrote:

>Read Dr. Cutler's book. I think Moria Merriwether has a website that sums

>things up, as well. Read the files section on chelation.

>

>You are smart to avoid IV chelation. My son has serious reactions and it

>brought back stimming, OCD, and sound sensitivity. Steer away from that.

>

>

>

[Guest guest]

Abi,

I am happy to hear you declined IV chelation. It is too aggressive and risky

for sure.

I am not 100% sure what you mean by 'all facts'. The basic guide to AC

chelation is: 1/8-1/2 mg per lb of chelator (DMSA or ALA) per dose. Dose every

3-4 hours for 72 hours. Take as many " off " (non chelating) days as " on "

(chelating " days before starting another round (a round is the 72 hours using a

chelator).

The vast majority of us continue to use minerals while using a chelator. Most

DAN! doctors will tell you not to use minerals while chelating because chelators

deplete minerals and you will just be wasting your chelator. That is

scientifically not true for oral DMSA and oral ALA when used in low doses like

advocated with AC.

In the files of A-M you will find a lot of information. There is a basic list

of necessary supplements listed in Andy's book, but it is also available on the

web. You can purchase DMSA, without a prescription, from www.vrp.com. You can

purchase ALA most anywhere, but Kirkman Labs sells a hypoallergenic version in

25mg size.

You can expect this to be at least a 2-3 year journey. There are no guarantees,

but almost all of us here will say chelation has directly benefited our

children. Some to the point of total recovery, others somewhere in between

where they used to be and recovery.

Good luck to you. Does your son swallow capsules? If not, I highly suggest you

teach him to do so. It makes it a lot easier.

Pam

(finishing round 122 this weekend with my son. We started this journey with a

child that was functionally non-verbal. Not so anymore! Parents are surprised

now when they hear he has an ASD diagnosis. He isn't recovered, but I am

hopeful)

>

> I have a 7 year old little boy. He has been GF/CF for 4 years. We have done

everything but chelation and have only seen mild improvements. His DAN wanted

to do IV chelation but we feel there are too many risks. Where is the best

place to start researching this Andy Cutler protocol?

>

> I want to have all my facts down before we think about trying.

>

> Thank you,

> Abi

>

[Guest guest]

I believe it is very sad that your DAN! did not offer oral chelation. To me,

that is a sign that you need to go out on your own or find another medical

professional to monitor things if that is what you need to get going.

How does your DAN! feel about oral chelation? Have you ever mentioned it?

A word of caution: PLEASE do not wait until you have everything in place.

Unless you are that rare individual... you will *never* have everything in

place! I get what you are saying, but you will waste precious time trying to

get everything perfect. Take time to read files, get yourself familiar with the

AC protocol, find a source for chelators and supplements. Ask questions here

and get going! There is a very steep learning curve once you start.

I wasted a lot of time. Regret it!

Pam (I hope that didn't come across too bossy!)

> >>

> >> I have a 7 year old little boy. He has been GF/CF for 4 years. We have

done everything but chelation and have only seen mild improvements. His DAN

wanted to do IV chelation but we feel there are too many risks. Where is the

best place to start researching this Andy Cutler protocol?

> >>

> >> I want to have all my facts down before we think about trying.

> >>

> >> Thank you,

> >> Abi

> >>

> >

> >

>

[Guest guest]

This is a great interview:

http://www.blogtalkradio.com/thecandystore/2010/03/15/special-guest-andrew-hall-\

cutler-phd-pe

>

> I have a 7 year old little boy. He has been GF/CF for 4 years. We have done

everything but chelation and have only seen mild improvements. His DAN wanted

to do IV chelation but we feel there are too many risks. Where is the best

place to start researching this Andy Cutler protocol?

>

> I want to have all my facts down before we think about trying.

>

> Thank you,

> Abi

>

[Guest guest]

All :

ABMD (Austism Biomedical Discussion)

abmd/?yguid=270222298

More info, with and without chelation.

Recovery From Autism

RecoveryFromAutism/?yguid=270222298

Families which are currently AC chelating or recovered. Haven clued me in to

this one. Many thanks, Haven and to the RFA group!

You will need to submit info before membership.

AutismForSale

AutismForSale/?yguid=270222298

ASD-related products for sale primarily from other families who no longer need

an item. Also post what you want to buy or in need of.

I have ASD-related Group links to my specific state, region, city. My

inbox is full of 'daily digests'! <chuckling>

Sheila

[Guest guest]

Abi,

Pam is giving you very good advice. Don't waste time as we did. We could

have started AC when our son was three, but we were scared and didn't know

much. It costus hundreds of thousands of dollars trying various things over

the years. Our son is a rare one, and he did improve dramatically with

diet, therapies, and supplements.

By age four our son didn't stim anymore. By seven I hardly saw any OCD or

SID, but his focus was a problem and his immune system was a mess. We got

talked into IV chelation and the OCD, SID, and major stimming came back. He

also suffered delayed, frightening asthmatic reactions after some IV rounds

(enough to make us quit). Then months later, we got guilted into doing IV

EDTA for lead chelation, and he had a very frightening asthmatic reaction

after the fourth round, and that was that. We would never do that again.

So we returned to the idea of Ac chelation and I got a good kick in the

pants from another mom not to put it off any longer. We started with ALA

only. We added biotin, GSE, and ACE to his supplements, and this is the

healthiest our son has been in nine years.

He is getting better, and I am hopeful. This is no where near as scary as

IV. I was terrified every time we went in for that. Even after he reacted

the DAN wanted us to continue IV but then add oral steroids before each

treatment. This doctor knew our son had had a psychotic episode the last

time he got oral steroids. When we said " No, " he got mad and said, " Well,

just leave the metals in there then. " When we said, " Let's do AC, " he said

no (cause he couldn't make money off it like he was doing with AC. Then for

the stimming he wanted us to put our son on Prozac. when we had started

seeing him years earlier he was all about doing things naturally. We were

just DONE and hit the door running.

We are now almost done with round seven of AC. Yeast/die of have been the

biggest nut to crack but we will get there.

[Guest guest]

Thank you, Sheila!  How helpful!  I will check into joining these other

groups. 

I want to gather as much information as possible. 

Abi

________________________________

From: the_murdocks2004 <the_murdocks2004@...>

Sent: Sun, February 27, 2011 11:09:10 AM

Subject: [ ] Re: Where is best place to start research?

 

All :

ABMD (Austism Biomedical Discussion)

abmd/?yguid=270222298

More info, with and without chelation.

Recovery From Autism

RecoveryFromAutism/?yguid=270222298

Families which are currently AC chelating or recovered. Haven clued me in to

this one. Many thanks, Haven and to the RFA group!

You will need to submit info before membership.

AutismForSale

AutismForSale/?yguid=270222298

ASD-related products for sale primarily from other families who no longer need

an item. Also post what you want to buy or in need of.

I have ASD-related Group links to my specific state, region, city. My

inbox is full of 'daily digests'! <chuckling>

Sheila

[Guest guest]

Thank you for posting this link!

We've been going back/forth about having a doctor monitor our son's chelation,

or not. I prefer not, but I want to honor my husband's feelings about it put

him at ease without taking up too much more time. Maybe this interview will

ease his mind, as well as seeing me chelate myself.

>

> This is a great interview:

>

http://www.blogtalkradio.com/thecandystore/2010/03/15/special-guest-andrew-hall-\

cutler-phd-pe

[Guest guest]

Thank you!  I will have to listen to this after my son goes to bed tonight. 

Abi

________________________________

From: " boothdan@... " <boothdan@...>

Sent: Sun, February 27, 2011 9:55:35 AM

Subject: [ ] Re: Where is best place to start research?

 

This is a great interview:

http://www.blogtalkradio.com/thecandystore/2010/03/15/special-guest-andrew-hall-\

cutler-phd-pe

>

> I have a 7 year old little boy. He has been GF/CF for 4 years. We have done

>everything but chelation and have only seen mild improvements. His DAN wanted

to

>do IV chelation but we feel there are too many risks. Where is the best place

to

>start researching this Andy Cutler protocol?

>

> I want to have all my facts down before we think about trying.

>

> Thank you,

> Abi

>

[Guest guest]

Thanks for all this helpful information!  By all the facts, I just mean,

learning as much as possible about the protocol, risks, etc so my husband and I

will be comfortable proceeding.  We are just very cautious.

Abi

________________________________

From: Pamela H <phaselow@...>

Sent: Sun, February 27, 2011 8:51:34 AM

Subject: [ ] Re: Where is best place to start research?

 

Abi,

I am happy to hear you declined IV chelation. It is too aggressive and risky for

sure.

I am not 100% sure what you mean by 'all facts'. The basic guide to AC chelation

is: 1/8-1/2 mg per lb of chelator (DMSA or ALA) per dose. Dose every 3-4 hours

for 72 hours. Take as many " off " (non chelating) days as " on " (chelating " days

before starting another round (a round is the 72 hours using a chelator).

The vast majority of us continue to use minerals while using a chelator. Most

DAN! doctors will tell you not to use minerals while chelating because chelators

deplete minerals and you will just be wasting your chelator. That is

scientifically not true for oral DMSA and oral ALA when used in low doses like

advocated with AC.

In the files of A-M you will find a lot of information. There is a basic list of

necessary supplements listed in Andy's book, but it is also available on the

web. You can purchase DMSA, without a prescription, from www.vrp.com. You can

purchase ALA most anywhere, but Kirkman Labs sells a hypoallergenic version in

25mg size.

You can expect this to be at least a 2-3 year journey. There are no guarantees,

but almost all of us here will say chelation has directly benefited our

children. Some to the point of total recovery, others somewhere in between where

they used to be and recovery.

Good luck to you. Does your son swallow capsules? If not, I highly suggest you

teach him to do so. It makes it a lot easier.

Pam

(finishing round 122 this weekend with my son. We started this journey with a

child that was functionally non-verbal. Not so anymore! Parents are surprised

now when they hear he has an ASD diagnosis. He isn't recovered, but I am

hopeful)

>

> I have a 7 year old little boy. He has been GF/CF for 4 years. We have done

>everything but chelation and have only seen mild improvements. His DAN wanted

to

>do IV chelation but we feel there are too many risks. Where is the best place

to

>start researching this Andy Cutler protocol?

>

> I want to have all my facts down before we think about trying.

>

> Thank you,

> Abi

>

[Guest guest]

We are no longer with this doctor.  Our son was not really improving and we

were

spending so much money out of pocket for tests, dr visits, and treatments.

He did not ever bring up oral chelation only suppository which we knew our son

would never go for and IV which we felt had too many risks.  We never asked

about it because, at the time, were just not comfortable with chelation.

Abi

________________________________

From: Pamela H <phaselow@...>

Sent: Sun, February 27, 2011 8:57:30 AM

Subject: [ ] Re: Where is best place to start research?

 

I believe it is very sad that your DAN! did not offer oral chelation. To me,

that is a sign that you need to go out on your own or find another medical

professional to monitor things if that is what you need to get going.

How does your DAN! feel about oral chelation? Have you ever mentioned it?

A word of caution: PLEASE do not wait until you have everything in place. Unless

you are that rare individual... you will *never* have everything in place! I get

what you are saying, but you will waste precious time trying to get everything

perfect. Take time to read files, get yourself familiar with the AC protocol,

find a source for chelators and supplements. Ask questions here and get going!

There is a very steep learning curve once you start.

I wasted a lot of time. Regret it!

Pam (I hope that didn't come across too bossy!)

> >>

> >> I have a 7 year old little boy. He has been GF/CF for 4 years. We have done

>everything but chelation and have only seen mild improvements. His DAN wanted

to

>do IV chelation but we feel there are too many risks. Where is the best place

to

>start researching this Andy Cutler protocol?

> >>

> >> I want to have all my facts down before we think about trying.

> >>

> >> Thank you,

> >> Abi

> >>

> >

> >

>

[Guest guest]

I agree with Haven and Pam, don't take up too much time researching

*everything*, but enough to know what is safe or will work for your

child(ren)/family. My biggest fear was making sure our son was going to have

the supplements he needed during chelation. I come to find though that I may

have been giving him too much of a supp recently, and I haven't started his

chelation yet.

Fortunately, although it was too much, I have been using the foodbased form of

the supp and can be easier to purge from the body than the synthetic kind.

Last month, I started all of us on Milk Thistle to support our livers.

Sheila

>

> Thank you, Sheila!  How helpful!  I will check into joining these other

groups. 

> I want to gather as much information as possible. 

>

>

> Abi

[Guest guest]

Who was this dr ? Would be nice to know so others avoid like the plague.

>

> Abi,

>

> Pam is giving you very good advice. Don't waste time as we did. We could

> have started AC when our son was three, but we were scared and didn't know

> much. It costus hundreds of thousands of dollars trying various things over

> the years. Our son is a rare one, and he did improve dramatically with

> diet, therapies, and supplements.

>

> By age four our son didn't stim anymore. By seven I hardly saw any OCD or

> SID, but his focus was a problem and his immune system was a mess. We got

> talked into IV chelation and the OCD, SID, and major stimming came back. He

> also suffered delayed, frightening asthmatic reactions after some IV rounds

> (enough to make us quit). Then months later, we got guilted into doing IV

> EDTA for lead chelation, and he had a very frightening asthmatic reaction

> after the fourth round, and that was that. We would never do that again.

>

> So we returned to the idea of Ac chelation and I got a good kick in the

> pants from another mom not to put it off any longer. We started with ALA

> only. We added biotin, GSE, and ACE to his supplements, and this is the

> healthiest our son has been in nine years.

>

> He is getting better, and I am hopeful. This is no where near as scary as

> IV. I was terrified every time we went in for that. Even after he reacted

> the DAN wanted us to continue IV but then add oral steroids before each

> treatment. This doctor knew our son had had a psychotic episode the last

> time he got oral steroids. When we said " No, " he got mad and said, " Well,

> just leave the metals in there then. " When we said, " Let's do AC, " he said

> no (cause he couldn't make money off it like he was doing with AC. Then for

> the stimming he wanted us to put our son on Prozac. when we had started

> seeing him years earlier he was all about doing things naturally. We were

> just DONE and hit the door running.

>

> We are now almost done with round seven of AC. Yeast/die of have been the

> biggest nut to crack but we will get there.

>

>

>