Re: Andy's protocol vs. ARI's protocol

February 28, 2008

In frequent-dose-chelation frankemkey wrote:

Anyone!!!

I am very concerned about the different recommendation protocols

between Andy and the ARI-DAN.

---------As you should be, especially as a parent. See the link below, where

Andy explains his position and the difference. Are you a member of the

Autism-Mercury group? If not, I would suggest you join that group also. Lots

of parents there chelating their kids safely, using Andy's protocol. You can

also read success stories and progress reports in the Love Letters at Moria's

website.-------Jackie

For our 40 lb. son, Andy's recommended

dosage amount is 20mg. max., given every 3 - 4 hrs. The ARI-DAN amount

is 180 mg. max, given every 8 hrs. We're talking NINE TIMES the dosage

amount and half as often. Something is very troubling with these

numbers.

------------Yes, I agree, these numbers are very troubling and frightening. I

as an adult, could only handle 12.5mg of DMSA to start out with, and actually

felt very good at that dose. 25mg was too much. I still can't tolerate ALA. I

can't even begin to imagine what a 180mg dose would do to me, let alone a 40 lb

child. And common sense tells me that less would be safer, especially at first

to see how it is handled. The last thing you want to do is to make your son

much worse. So please error on the side of caution, and never use these large

doses on him. And Andy's post explains that you aren't gaining much as far as

excretion anyway, so it's just not worth putting your son through the extra

symptoms that higher doses would cause. Your gut instinct is telling you that

something is wrong, so trust your gut. Andy's protocol is the way to

go.--------------Jackie

Their ideas of the half life also differ considerably.

------------I don't recall if Andy specifically addressed this in his post,

but I believe that DMSA was developed in the 1950's for treating lead poisoning,

not mercury, and so the dosing etc. was based on that. And just from personal

experience and that of many others here, the half life of DMSA for mercury

purposes is definitely 3-4 hours. Once you experience chelation and

redistribution, you know what this is.-------Jackie

Can

anyone offer any understanding for me and others with this situation?

-----------This very long post from Andy should hopefully answer your

questions. I highly suggest *everyone* on this list read it, and probably print

it out. It can also be found in the ANDY INDEX, in the links section of this

group, which is part of Moria's website. I also highly recommend that people

spend *alot* of time reading there. Tons of valuable information in the ANDY

INDEX. It will help you understand the protocol much better.----------Jackie

http://health.groups.yahoo.com/group/Autism-Mercury/message/53055

We are interested in an ALA alone aproach, depending on the results of

a hair elements and urine porphyrin test.

-----------If you haven't already, I again highly suggest you join the

Autism-Mercury group, to get insight from other chelating parents. It is fine

to belong to this list too, but they will know alot more about how to treat a

kid. And I assume your son doesn't have any mercury fillings in his mouth?

Because you cannot start chelation until they are removed. Otherwise, if he has

had no recent exposure, then you can chelate using ALA from the beginning. I

also want to mention that some kid's hair tests didn't quite meet the counting

rules, but the parents chelated anyway, and saw improvements, and some who did

hair tests after starting chelation, then seen the hair tests meet the counting

rules. And the urine porphyrins test is very sensitive to proper handling, so

they aren't always accurate either. So sometimes you just need to do a trial of

chelation, and decide from there. And when you get your son's hair test

results, you could post them on Dean's website, so we all can see it and help

interpret it, if you'd like. Good luck with your son.-------------Jackie

Thanks,

February 28, 2008

>Jackie,

Thanks for the reply. Yes, I do belong to the groups and I have read

my eyes out on this subject. The troubling thing to me is that with

the ARI, there are 33 phd's signing off on their protocol. My gut

feeling to Andy's gentle and frequent approach but the vast contrast

between the two is very troubling.

I will continue to absorb info.. We are likely weeks away from

starting whatever it is we decide to do.

Where do you recommend me obtaining DMSA should we opt to go that

route?

This is a new revelation to me, thanks to my sons condition. I have

9 amalgam fillings in my mouth and I am already set on having them

replaced with white composite. Do you feel that it is safe to assume

that I am mercury toxic? I have not read Andy's book but Im sure he

would feel that I am.

Any more input would be great. Thanks,

>

February 28, 2008

In frequent-dose-chelation frankemkey wrote:

>Jackie,

Thanks for the reply. Yes, I do belong to the groups and I have read

my eyes out on this subject. The troubling thing to me is that with

the ARI, there are 33 phd's signing off on their protocol. My gut

feeling to Andy's gentle and frequent approach but the vast contrast

between the two is very troubling.

------------Listen to your gut, it is telling you not to harm your child.

Those 33 Phd's won't be there to help when your son regresses on their protocol.

I would also gander a guess that probably not a one of them has ever been toxic

and needed to chelate themselves. This also weighs very heavily with me, that

Andy has been there, was mercury poisoned himself, tried stuff, and luckily had

the education to figure out a safe way of getting well, and is kind and caring

enough to share that knowledge with us. Below is a link where Andy explains his

experiences with different chelators and protocols.

I know this can be difficult to feel like you're going against the grain, and

against what alot of doctors would recommend, but believe me, it's worth it,

your child's future is at stake. I personally had to " go against the grain " ,

here in Minnesota. There are very few chelation doctors, and none of them that

I tried or talked to wanted to discuss Cutler's protocol. Luckily I had his

book and then joined these groups, because that information saved me from

harmful protocols they would have used on me. The first one I seen when I was

very new to this and hadn't found these groups yet, gave me a supplement with

100mg of ALA in it and told me to take it 3 X a day. I got a headache within a

half hour of taking it, and on the third day I had blood in my urine, so I

finally got smart, read all the ingredients, checked Andy's book, and stopped

immediately and canned that doctor! This was my first experience with Andy

being right and knowing more than these so called experts. This same doctor

would have sent me for an IV challenge test with my amalgams still in, if I

would have continued with her. I can't even imagine what that would have done

to me. Then I tried a DAN doctor, because he used oral DMSA and I thought maybe

I could convince him to do Cutler's protocol. I also went to him, because he

used Great Smokies lab and I wanted the Comp Liver Detox Panel done. He was

very arrogant, and wouldn't even discuss Cutler's protocol with me, and wanted

me to take 500mg of DMSA 3 X day, so again I was out of there. He was also

extremely expensive, and didn't get the adrenal stuff, which I needed

desperately. Anyway, so I started chelation on my own, using Cutler's protocol,

and I only tolerated 12.5mg of DMSA every 3-4 hours. I actually felt really

good at that dose, and didn't feel good when I tried to up it too soon. So,

once again, I can't even imagine what a 500mg dose would have done to me. This

DAN doctor also would have given me IV glutathione if I would have lived closer

by, but I would have refused, because Andy has heard of serious adverse

reactions to these. So through different personal experiences, and the ones I

have read here, and the countless times I have heard people on these groups say

" Andy was right " , I have come to trust him and am very thankful for his

information for saving me from harm. And the bottom line is, his protocol just

always made alot of sense to me. And I figured that if I was wrong, then the

worst thing I would be doing on his protocol would be going too slow and not

taking enough chelator, but that sounded alot safer to me than taking too much.

You can always start out low and build up and try more, but if you take too much

all at once, you can't take it back. Ok, sorry I rambled on so

much.--------Jackie

I will continue to absorb info.. We are likely weeks away from

starting whatever it is we decide to do.

Where do you recommend me obtaining DMSA should we opt to go that

route?

-------------It is available from a few places in 25mg capsules, and I get

mine from www.vrp.com, and the others are in the links section. I think for the

kids, alot of parents get stuff from Kirkman's, and they sell a 25mg ALA capsule

also. I believe they also sell a combo of 12.5mg of each of DMSA/ALA, but you

should ask about this on A-M. It might require a Rx and I think you have to

phone and ask for it? Not quite sure of the details.----------Jackie

This is a new revelation to me, thanks to my sons condition.

-----------I am a parent too, and I can't even start to imagine how hard this

must be for you. My twins were born in 1994, were fully vaccinated, and

thankfully they are ok. They have some minor issues and hair tests show

possible mercury problem, and we have arsenic from our well water, so I do plan

on doing some chelation on them, to hopefully prevent any future problems. My

son has done a few sporatic rounds with me, and did just fine on Cutler's

protocol. I have no problem recommending it to anyone, as long as they

understand the protocol.---------Jackie

I have

9 amalgam fillings in my mouth and I am already set on having them

replaced with white composite. Do you feel that it is safe to assume

that I am mercury toxic?

------------It is certainly possible. Being poor excretors of metals can be

genetic. I would suggest you do a hair test on yourself also, and start there.

Also compare symptoms to what is in Andy's book. That part of the book alone

was enough to convince me that I was toxic, and then a hair test confirmed

it.----------Jackie

-----------And if you are like me, once I learned how bad they were for me,

there was no way I was leaving them in my mouth! And if you get them removed,

you could chelate together with your son. I think many families do it

together.-------Jackie

I have not read Andy's book but Im sure he

would feel that I am.

Any more input would be great.

----------I think I yapped at you enough! But do read the link

below.-------Jackie

Thanks,

Andy's experience with diferent chelators

http://health.groups.yahoo.com/group/Autism-Mercury/message/139156

>

February 29, 2008

----- Original Message -----

From: Jackie

I know this can be difficult to feel like you're going against the grain, and

against what alot of doctors would recommend, but believe me, it's worth it,

your child's future is at stake.

====>Thanks, Jackie, for your kind words.

Another BIG clue for us as to which protocol to use was the adult reports on

Autism-Mercury where they reported what happened when they used large doses or

gave the chelators infrequently. Unlike kids, they could articulate how bad they

felt.

I'm forever grateful for the giving of their time and attention to parents'

even though they had no children or no children who were affected.

February 29, 2008

Yes, it's very simple. Andy's protocol is clearly the most conservative

out there. First, it is clearly more conservative to take less rather

than more; and he is suggesting the lowest doses around. Second, it is

clearly more conservative to take half as much twice as often, or one

third as much three times as often or .... Why? Because while the

total amount you are taking is not changing, the more often you take it,

the more steady the level of chelator (or any drug) in the bloodstream

becomes. So, when people on this list start having symptoms during

chelation, the one thing that is often tried is to take less more often

- every 3 hours instead of every 4, or every 2 hours instead of every

3. When you try it yourself, you will see that it makes a dramatic

difference in terms of comfort. The problem, of course, is sleep.

As for " half life " that's just a rule of thumb for how to select how

often to take it. The half life is the time it takes a drug to drop

from whatever level it is at in the bloodstream to half that much. So,

if I dose a drug on the half life, then the range of fluctuation will

never be more than a factor of 2, or 100%. If I dose more often than

the half life, the range of fluctuation will be less than a factor of

2. (As it so happens, dose on half the half life and the range of

fluctuation will be sqrt(2), approximately 1.4 or 40%.)

Pharmaceutical texts always say that drugs should be dosed on the half

life, as a rule of thumb. Why don't doctors read their own texts? Your

guess is as good as mine. In the case of lead, which resides in bones,

larges doses of DMSA have the effect of clearing the bloodstream, after

which more lead slowly leeches out of the bones. So, they can basically

get away with it. In the case of mercury which resides in soft tissues,

large doses can cause a huge dump of mercury into the bloodstream,

causing very uncomfortable and acute poisoning. So, you don't want to

do that.

Dave.

PS. It's not just the chelators. Nutritional supplements are the

same. You want to take less more often, spread throughout the day,

rather than taking them all at once.

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

Their ideas of the half life also differ considerably.

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

I don't recall if Andy specifically addressed this in his post, but I

believe that DMSA was developed in the 1950's for treating lead

poisoning, not mercury, and so the dosing etc. was based on that. And

just from personal experience and that of many others here, the half

life of DMSA for mercury purposes is definitely 3-4 hours. Once you

experience chelation and redistribution, you know what this is.-------Jackie

Can anyone offer any understanding for me and others with this situation?

February 29, 2008