Re: DMSA question/Terri

February 8, 2003

In a message dated 2/8/2003 3:29:51 PM Central Standard Time,

tavalon@... writes:

> Aargh, it is so frustrating, after doing so much work figuring out the

> safest way to give DMSA, to see so many unsafe protocols out there!

>

> This one is guaranteed to cause problems because the half life of DMSA is

> 3-4 hours, therefore at about 6 hours, it will be out of the body and the

> mercury left circulating will redistribute. This will happen with each and

> every dose. At least with the protocol of 100 mg every 4 hours, that will

> only happen at the end of the cycle, not with each and every dose! I have a

> problem with either situation because the dose shouldn't be over 1mg/kg per

> dose. It would still be safe to go up to 3mg/kg per dose but the amount of

> mercury removed will not be threefold. The side effects will be threefold

> though.

>

> Terri Avalo

n

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

Terri,

Thank you for your advice! I'm just curious as to what Protocol you would

recommend and what information would you base the recommendation off of?

This is our first time doing a 'Provoked Challenge' and first for using DMSA

from Kirkmans, in the past we always had the DMSA compounded for our son. We

had problems with chelation on the 'off cycles', like I mentioned in my

earlier post. I was assured by a very well known scientist/researcher, our

pharmacist and our doctor that the DMSA does NOT let go of the mercury,

however this was several years ago. It was explained to us that the reason

DMSA has such a short half-life is because of it's rapid binding to mercury

and/or lead and it's ready excretion from the body.

*note to the above -- our son had bad reaction on 'off cycles', but did

wonderful on the 'on cycles'. I was told that he had bad 'off cycles' because

of his horrible time w/the re-equilibration (cellular level). The doctor said

it shouldn't have taken him that long to excrete everything because DMSA is

usually out of the body very quickly. Knowing the above, I questioned them

again at the time we were having the problems(tremors, lethargic, no

appetite, rash and so on...) if I had to worry about redistribution of the

mercury and I was told even though it did take soooo long that I still had

NOTHING to worry about, because the DMSA would NOT let go of what it was

bound too! We had to stop chelation for a while, up supplements and go to

lower dosing of DMSA w/future rounds.

OK, so as you can see you've got my attention! What we saw, seemed to us to

be a re-poisoning of mercury, a redistribution, but again I was told " NO " !

So ---PLEASE if you have research and/or information to support what you are

saying please post it to me!

Thanks,

Roxan

February 9, 2003

I too know of many kids who did better on an every 4 hr protocol but also

know of many who did fine on the typical every 8 hr protocol. I'd think

starting with the every 4 hrs to be extra safe and then after a few rounds

trying every 8 hrs for sanity would be a good idea. For what it is worth, we

all did the every 8 hr protocol and handled it fine. Tried two rounds of

every 4 hrs and didn't notice much difference except being a bit sleepier .

The night dosing isn't hard though assuming the kid goes back to sleep

easily.

I have read research that leads me to believe that the DMSA forms a pretty

tight bond with metals so the likelihood of it letting go of a bunch and it

slamming into your brain it's pretty far fetched in my (non expert) opinion.

There are citations of these studies at the end of the mercury paper the DAN

docs put together a few years ago. I think the most likely thing that is

happening with the kids who do better with every four hours is that their

elimination organs cannot process large amounts of the DMSA/metal bonds so

then they remain in the body or stress the organs/body. The every 4 hour

protocol gives lower doses each round so would be easier on them. It would

be interesting to see a comparison of the every 4 hr protocol and every 8 hr

protocol with the exact same doses given despite the timing to rule out that

the kid just does better on a lower dose.

When you're starting chelation, it is much safer to start with a low dose and

work your way up. Also it is very important to check neutrophil levels

(polys) with a CBC and mineral levels prior to starting and throughout the

process regardless of the dosage you are using. You might get by without

problem but if either are low, it could be very dangerous for the child.

Gaylen

February 9, 2003

I just got home from work and I'm going to be pretty busy when I get up but

I will get you the information.

Terri

Remember the movie, Wag The Dog?

Wake up folks, we're being wagged.

Terri (2002)

Re: DMSA question/Terri

> In a message dated 2/8/2003 3:29:51 PM Central Standard Time,

> tavalon@... writes:

>

> > Aargh, it is so frustrating, after doing so much work figuring out the

> > safest way to give DMSA, to see so many unsafe protocols out there!

> >

> > This one is guaranteed to cause problems because the half life of DMSA

is

> > 3-4 hours, therefore at about 6 hours, it will be out of the body and

the

> > mercury left circulating will redistribute. This will happen with each

and

> > every dose. At least with the protocol of 100 mg every 4 hours, that

will

> > only happen at the end of the cycle, not with each and every dose! I

have a

> > problem with either situation because the dose shouldn't be over 1mg/kg

per

> > dose. It would still be safe to go up to 3mg/kg per dose but the amount

of

> > mercury removed will not be threefold. The side effects will be

threefold

> > though.

> >

> > Terri Avalo

> n

> ----------------------------

> Terri,

> Thank you for your advice! I'm just curious as to what Protocol you would

> recommend and what information would you base the recommendation off of?

>

> This is our first time doing a 'Provoked Challenge' and first for using

DMSA

> from Kirkmans, in the past we always had the DMSA compounded for our son.

We

> had problems with chelation on the 'off cycles', like I mentioned in my

> earlier post. I was assured by a very well known scientist/researcher, our

> pharmacist and our doctor that the DMSA does NOT let go of the mercury,

> however this was several years ago. It was explained to us that the reason

> DMSA has such a short half-life is because of it's rapid binding to

mercury

> and/or lead and it's ready excretion from the body.

>

> *note to the above -- our son had bad reaction on 'off cycles', but did

> wonderful on the 'on cycles'. I was told that he had bad 'off cycles'

because

> of his horrible time w/the re-equilibration (cellular level). The doctor

said

> it shouldn't have taken him that long to excrete everything because DMSA

is

> usually out of the body very quickly. Knowing the above, I questioned them

> again at the time we were having the problems(tremors, lethargic, no

> appetite, rash and so on...) if I had to worry about redistribution of the

> mercury and I was told even though it did take soooo long that I still had

> NOTHING to worry about, because the DMSA would NOT let go of what it was

> bound too! We had to stop chelation for a while, up supplements and go to

> lower dosing of DMSA w/future rounds.

>

> OK, so as you can see you've got my attention! What we saw, seemed to us

to

> be a re-poisoning of mercury, a redistribution, but again I was told " NO " !

> So ---PLEASE if you have research and/or information to support what you

are

> saying please post it to me!

>

> Thanks,

> Roxan

>

February 9, 2003

I just got home from work and I'm going to be pretty busy when I get up but

I will get you the information.

Terri

Remember the movie, Wag The Dog?

Wake up folks, we're being wagged.

Terri (2002)

Re: DMSA question/Terri

> In a message dated 2/8/2003 3:29:51 PM Central Standard Time,

> tavalon@... writes:

>

> > Aargh, it is so frustrating, after doing so much work figuring out the

> > safest way to give DMSA, to see so many unsafe protocols out there!

> >

> > This one is guaranteed to cause problems because the half life of DMSA

is

> > 3-4 hours, therefore at about 6 hours, it will be out of the body and

the

> > mercury left circulating will redistribute. This will happen with each

and

> > every dose. At least with the protocol of 100 mg every 4 hours, that

will

> > only happen at the end of the cycle, not with each and every dose! I

have a

> > problem with either situation because the dose shouldn't be over 1mg/kg

per

> > dose. It would still be safe to go up to 3mg/kg per dose but the amount

of

> > mercury removed will not be threefold. The side effects will be

threefold

> > though.

> >

> > Terri Avalo

> n

> ----------------------------

> Terri,

> Thank you for your advice! I'm just curious as to what Protocol you would

> recommend and what information would you base the recommendation off of?

>

> This is our first time doing a 'Provoked Challenge' and first for using

DMSA

> from Kirkmans, in the past we always had the DMSA compounded for our son.

We

> had problems with chelation on the 'off cycles', like I mentioned in my

> earlier post. I was assured by a very well known scientist/researcher, our

> pharmacist and our doctor that the DMSA does NOT let go of the mercury,

> however this was several years ago. It was explained to us that the reason

> DMSA has such a short half-life is because of it's rapid binding to

mercury

> and/or lead and it's ready excretion from the body.

>

> *note to the above -- our son had bad reaction on 'off cycles', but did

> wonderful on the 'on cycles'. I was told that he had bad 'off cycles'

because

> of his horrible time w/the re-equilibration (cellular level). The doctor

said

> it shouldn't have taken him that long to excrete everything because DMSA

is

> usually out of the body very quickly. Knowing the above, I questioned them

> again at the time we were having the problems(tremors, lethargic, no

> appetite, rash and so on...) if I had to worry about redistribution of the

> mercury and I was told even though it did take soooo long that I still had

> NOTHING to worry about, because the DMSA would NOT let go of what it was

> bound too! We had to stop chelation for a while, up supplements and go to

> lower dosing of DMSA w/future rounds.

>

> OK, so as you can see you've got my attention! What we saw, seemed to us

to

> be a re-poisoning of mercury, a redistribution, but again I was told " NO " !

> So ---PLEASE if you have research and/or information to support what you

are

> saying please post it to me!

>

> Thanks,

> Roxan

>

February 9, 2003

Just an FYI:

I have not started Chelation on my son yet, because we are in the process of

healing his gut first.

Please read Jaclyn McCandless's book, " Children With Starving Brains. " I gave

mine to a friend who needed it more & my 2nd copy is supposed to be delivered

next month.

But anyway, she has a whole chapter that discusses chelation & DMSA & ALA &

the 8 hour vs. 4 hour & why & when you should do the 4 hour one. I can't

recall exactly, but I think younger, smaller kids do better on the 4 hour

protocol.

Just trying to help.

Lori

February 9, 2003

Just an FYI:

I have not started Chelation on my son yet, because we are in the process of

healing his gut first.

Please read Jaclyn McCandless's book, " Children With Starving Brains. " I gave

mine to a friend who needed it more & my 2nd copy is supposed to be delivered

next month.

But anyway, she has a whole chapter that discusses chelation & DMSA & ALA &

the 8 hour vs. 4 hour & why & when you should do the 4 hour one. I can't

recall exactly, but I think younger, smaller kids do better on the 4 hour

protocol.

Just trying to help.

Lori

February 9, 2003

hi Roxan,

as you may note, I am not Terri, but thought I would add a

few comments too.....

> Thank you for your advice! I'm just curious as to what Protocol you

would

> recommend and what information would you base the recommendation off of?

I don't know what Terri's process was of coming to the conclusions

that she has, but I am quite certain that what she recommends will

be similar to or exactly the same as " Andy Cutler's protocol " .

It is actually not a protocol, it is a set of guidelines. The

most " well known " part of his approach is that he is adamant that

chelation agents be given/taken OFTEN. Often enough to keep them

going steadily in the bloodstream. For DMSA this is every 4 hours

INCLUDING

AT NIGHT. I have personally done this--- yes, it involves alarms

that ring at 3 AM! No doubt you can see why this particular aspect

of Andy's protocol is the most " well known " aspect LOL.

> This is our first time doing a 'Provoked Challenge' and first for

using DMSA

> from Kirkmans, in the past we always had the DMSA compounded for our

son. We

> had problems with chelation on the 'off cycles', like I mentioned in my

> earlier post. I was assured by a very well known

scientist/researcher, our

> pharmacist and our doctor that the DMSA does NOT let go of the mercury,

> however this was several years ago.

There are certainly many doctors etc still today who will

say the same thing. I personally find it very sad that they told

you this WHILE YOUR CHILD WAS HAVING PROBLEMS, that were *possibly*

due to this very issue. I can tell you that I have read quite

a number of posts from people whose kids did BADLY on every 8

hours DMSA, and did WELL on every 4 hours DMSA. (Or DMSA+ALA,

I don't remember!)

While it might or might not be interesting to hear the reasoning

behind the scientist/researcher/pharmacist's claims, I personally

would think it more practical to try it the other way, and see

how your kid does.

By the way, I do think they are wrong about the idea that DMSA

holds onto the mercury etc. I'm just saying that I think a

practical way to deal with it is to TRY IT the other way, and

see if it makes a difference. A positive difference that is!

> OK, so as you can see you've got my attention! What we saw, seemed

to us to

> be a re-poisoning of mercury, a redistribution, but again I was told

" NO " !

This is kinda " far afield " from what you asked, but your wording

brings it to mind..... there is a website called " DMPS backfire "

which is about cases where people have been " re poisoned " by use

of DMPS IV/injections. On this website is all kinds of stuff,

including a statement from a pharmaceutical co about DMPS that

SAYS it can cause re-poisoning. (Okay, now I have to go find

it LOL so I don't misrepresent it LOL!)

http://www.autism.com/atec/atec_form.pdf

http://www.dmpsbackfire.com/default.shtml

Okay, the specific statement (this is from a " monograph on DMPS

from Heyltex " :

" In isolated cases therefore, CLINICAL SYMPTOMS OF MERCURY POISONING

MAY BE PRODUCED. "

Andy Cutler's explanination of this, which I agree with FWIW,

is that the problem is caused by the USE of DMPS in these

cases. That is: DMPS IV/injection involves a LARGE SINGLE

DOSE, which is extremely unlike small steady doses over several

days. Like ALL chelation agents, DMPS needs to be given/taken

in SMALL doses, timed to maintain a steady blood level.

(Using injection as opposed to oral administration may also

contribute somewhat to the problem--- it also makes for " one

big dose all at once " .)

> So ---PLEASE if you have research and/or information to support what

you are

> saying please post it to me!

If you want you can read some of Andy's writing, here:

http://groups.yahoo.com/group/Autism-Mercury/files/ANDY_INDEX

Look for the section on " keeping a steady level of chelation

agents and " bad " protocols " . I think Andy has recently

written a better essay on this topic (on the autism-mercury

list), but, sadly, I'm not able to update the ANDY_INDEX file

much lately.

There are a couple of POLLS on the autism-mercury list that

asked parents who had used BOTH 4-hours and 8-hours to comment

on the relative effects. I don't have the URLs for these handy,

but go to the POLLS page, here:

http://groups.yahoo.com/group/Autism-Mercury/polls

There are 2 polls about timing (I think one that is about DMSA

and one about DMSA+ALA???)

That is the closest thing to " research " I know of LOL.

If, like me, you like reading personal experience better than

reading studies, you can read the " Jeannie " section, here:

http://groups.yahoo.com/group/Autism-Mercury/files/LOVE_LETTERS

One of those whose child did ***badly*** on every-8-hours, and

much better on every 4 hours. Her comments on the courage it

took for her to try again are also relevant. And a darned nice

happy ending, if you ask me....

best wishes,

Moria

February 9, 2003