Re: lead protocols - question for Andy, ?

[Guest guest]

At 02:53 AM 10/17/2001 -0000, you wrote:

>Dear Andy and/or

>

>I was taken by a comment in the article below that the DAN chelation

>protocol is " ..shorter duration than lead protocol to decrease side

>effects " .

>

>The implication seems to be that lead chelation is a different amd

>less serious issue than " heavy metals " chelation. The suggestion

>seems to be that if you are targeting lead you can be less concerned

>about side effects and can chelate for a longer " on " period. I also

>infer that the children in the study are burdened by a number of

>heavy metals and mercury in particular and this is why the chelation

>protocol is different from a lead protocol where only lead is the

>problem.

>

>I have reason to believe that my 4 year old may be largely dealing

>with a lead problem (elevated urinary aminolevulinic acid, high hair

>lead and high porphyrins). Does this mean one can depart from the

>the protocols promulgated on this list and chelate more often,

>without prolonged rest breaks and with higher doses of DMSA? I have

>been doing 3 days on/4 days off, trying to do the 4 hour dosing plus

>the various supplements but was wondering whether there is a

>different lead protocol out there.

>

>I am aware of the mainstream lead protocols which suggest pretty

>heavy DMSA dosing for a week or so at a time (not sure of frequency

>of dosing each day). Are these protocols appropriate or should one

>exercise caution and adopt the mercury chelation protocols,

>particularly as I cannot be certain that other heavy metals are also

>not present?

dear john.gilfillan@...,

Well, obviously I am not or Andy.

First, I'm pasting a recent post below. It is a bit long, but includes

a couple of pertinent passages about dose of DMSA for lead vs mercury,

and risks of high dose. PLEASE NOTE that Andy is INCORRECT on the

dose he says is normally recommended (and has been corrected and said

" oops " or the equivalent.) Conversion should be times .5 rather than

times 2. (I always know it is 2 to 1 but get confused about which

" direction " .) This certainly won't answer all that you asked, but

does have a bit of indirect info in it.

Okay. Next point. I think you raise the issue as to whether you know

if this child may ALSO have mercury poisoning. I think this is an

important distinction. Perhaps IF your child ONLY has lead, then

there are other protocols and/or expected lenght of treatment.

But, I would not want to figure that your child does not have

lead AND mercury without some pretty good evidence.

best regards,

Moria

Date: Mon, 15 Oct 2001 06:58:48 -0000

Reply-

Subject: [ ] Re: Andy: dose vs spacing

>

> Andy, you have said many times that you object to the DAN consensus

> report on the use of DMSA, both the dose amount and the timing of

the

> doses. Which do you think is the worse offender?

The timing is only slightly worse than the dosage. If you absolutely

had to do something unpleasant, use a high dose every 4 hours.

Which is worse - being shot in the belly with a .38 or with a .22?

Personally I'd rather not have to choose between those, or between

lesser things such as inappropriate administration schedule for DMSA,

and vastly excessive dosages of DMSA.

>

> I have a theory about what you'll say.

What, that I'll be in a bad mood and say something like I did above?

> Meanwhile, let me tell you

> what's been happening at our house. Our 2.6 year old daughter, 26

> lbs, was started at 12.5 mg for the first round (every 4 hours,

which

> we have continued through subsequent rounds.) At that small dose,

> she had her worst side effect, a day of inability to walk, which

> occurred late on day 2. She hasn't had it since; the only thing

> we've noticed on subsequent rounds (at 25 mg, 25 mg, 25 mg, and

37.5

> mg, all at every 4 hours) is some sweatiness (resolved for the last

2

> rounds) and increased urination (persists). We've not noticed any

> regression or improvements yet.

All argument aside it is important to remember we are dealing with

real human beings. While I find it incredible that the problem

actually was the lower dose of DMSA, DON'T GO TRYING IT AGAIN ON MY

ACCOUNT!!! She did OK on 25, stick with 25. There is no need to do

an experiment and see if she turns into a statistic - you found

something that works.

It is up to you whether to increase the dosage further. I wouldn't.

The primary reason I can offer you for not doing so is that doubling

the dose does double side effects, at least, but only increases

mercury removal by 30-40%.

>

> I'm pleased that increasing the dose has been trouble free, and am

> wondering how high I can push it. In the Files, you say *start* at

1

> mg/lb for just DMSA (and 1/8 - 1/2 mg/lb for DMSA + ALA). How high

> can one push this?

I don't know. I know how it FELT to take higher doses, and I know

what other adults report about dosage related side effects. I also

know what people generally have been reporting on list about side

effects and I don't feel comfortable suggesting either adults or

children take much more than 1 mg/pound.

Lots of people use the PDR dosage of 22 mg/pound (10 mg/kg) and most

of them don't die from it, but it is hard to believe they do well on

it. Remember, this dose was approved with studies on severely lead

toxic children who the doc's expected to be really really really

messed up no matter what they did, and approval was based on a lot of

lead coming out, not on the kids getting better.

Also the study was NOT on mercury toxic children. Lead and mercury

have quite dissimilar behavior in the body. I suspect lead toxic

people can tolerate more DMSA because the mobilization effect is much

lower.

>I assume the real bad side effects (loss of

> neutrophils and platelets, liver abnormalities) is increased at the

> higher doses;

Correct. They also happen FASTER at higher doses - at lower doses

you have time to realize something is going wrong before it is

serious. I know several people who got mild neutropenia at low

doses, all of whom figured it out before they got low enough to have

life threatening infections (which is the usual sign it is going

on). At higher doses you figure out it happened in the hospital

after the fact.

>are there any data on the incidence of these at

> particular doses?

Unfortunately not. There really aren't good incidence data even at

the FDA approved dosage that is often Rx'd for lead.

>

>

Please don't take this too harshly. I know you have to make

decisions what to try and what not to, and are getting lots of

conflicting information and very little in the way of useful help.

You are guaranteed not to do it all perfectly, just like I didn't do

things very well when I was detoxing myself. I did lots of really

dumb stuff (some of which I actually did know better than at the

time, too). The best you can do is try things, don't change anything

to dramatically, and watch what happens. If you decide that you want

to try more DMSA, you may wish to raise it to 2, then 3 or 4, etc.

rather than making big jumps.

[Guest guest]

I don't know if it is more benign to chelate lead, or if it is just

that lead toxic children get chelated by the same doc's who don't

notice that shooting kids full of mercury turns them autistic.

What little info I have suggests to me that chelating lead with DMSA

is more 'forgiving' than chelating mercury.

Andy

> Dear Andy and/or

>

> I was taken by a comment in the article below that the DAN

chelation

> protocol is " ..shorter duration than lead protocol to decrease side

> effects " .

>

> The implication seems to be that lead chelation is a different amd

> less serious issue than " heavy metals " chelation. The suggestion

> seems to be that if you are targeting lead you can be less

concerned

> about side effects and can chelate for a longer " on " period. I

also

> infer that the children in the study are burdened by a number of

> heavy metals and mercury in particular and this is why the

chelation

> protocol is different from a lead protocol where only lead is the

> problem.

>

> I have reason to believe that my 4 year old may be largely dealing

> with a lead problem (elevated urinary aminolevulinic acid, high

hair

> lead and high porphyrins). Does this mean one can depart from the

> the protocols promulgated on this list and chelate more often,

> without prolonged rest breaks and with higher doses of DMSA?

I don't know. I would suggest longer chelation periods before higher

doses. Do please let us know the results of the experiment. If you

would like to correspond more off list (and share his DDI hair

element profile if you have one) I would be glad to hear how things

go.

>I have

> been doing 3 days on/4 days off, trying to do the 4 hour dosing

plus

> the various supplements but was wondering whether there is a

> different lead protocol out there.

>

> I am aware of the mainstream lead protocols which suggest pretty

> heavy DMSA dosing for a week or so at a time (not sure of frequency

> of dosing each day). Are these protocols appropriate

I really doubt it. I'm sure the every 4 hour protocol is fine. Less

frequent ones may also be fine. I don't know.

> or should one

> exercise caution and adopt the mercury chelation protocols,

> particularly as I cannot be certain that other heavy metals are

also

> not present?

You have to make this decision. I'd experiment some then think about

it personally.

>

> http://www.feat.org/scripts/wa.exe?A2=ind0110 & L=FEATNEWS & P=R5947

> Copyright © 2001 Ivanhoe Broadcast News, Inc.

> * * *

>

> Open Trial Of Chelation In Children With Autism

> Open Trial Of Chelation With Mes0-2,3-Dimercapto Succinic Acid

(Dmsa)

> And

> Lipoic Acid (La) In Children With Autism.

>

> [As submitted to IMFAR, June 2, 2001. Thanks to

Binstock

> on the

> abmd@y... list.]

> A. Holmes, S. Cave, and J.M. El-Dahr;

> Private Practice, Baton Rouge, LA 70808 and Tulane University

Medical

> Center, New Orleans, LA, 70112.

>

> Over 400 patients with autism are currently undergoing

> treatment for

> removal of heavy metals. Patients are treated with DMSA alone at

> doses of 10

> mg/kg/dose 3 times a day for 3 days in a row (shorter duration than

> lead

> protocol to decrease side effects) with 11 days " off " to allow

metals

> to

> re-equilibrate. After at least 2 rounds of DMSA alone, the thiol

> antioxidant

> lipoic acid (hypothesized to aide in removal of heavy metals across

> the

> BBB)is added to each dose of DMSA at 2-3mg/kg/dose. In general,

> noticeable

> improvements in language, self-help skills, interaction, and core

> autistic

> features are not seen until the patient has been on DMSA with LA

for

> 2-3

> months.

> Of patients who have been on DMSA/LA for at least 4 months,

> these

> results have been noted on general global assessment by parents,

> teachers,

> and MDs: age 1-5yrs(n=40): marked improvement 35%, moderate 39%,

> slight 15%,

> none 11%; age 6-12yrs (n=25): marked 4%, moderate 28%, slight 52%,

> none 16%;

> age 13-17 (n=16): moderate 6%, slight 68%, none 26%; age 18+ (n=4):

> slight

> 25%, none 75%. For example, a boy 5yr 5mo scored in the average

range

> on a

> one word expressive vocabulary test 10/00 and at age equivalent 8yr

> 2mo in

> 3/01 with no change in education or medication other than starting

> DMSA/LA.

> The majority of children excrete mercury, lead, and other

> metals,

> suggesting that there may be a generalized problem with metal

> metabolism.

> Side effects include transient increases in hyperactivity, self-

> stimulatory

> behavior, and loose stools. Younger children in particular respond

> well to

> this therapy with significant improvement in function.