Re: Trying to get the big picture -- help , Nell, Dana, Andy et al (long)

August 10, 2006

> I am about to buy Andy Cutler's " hair

> test " book (if you all think that that's the right book to get).

Yes, it's very good. " Amalgam Illness " is good too but I tend to use

it more as a supplement reference for myself than for my kids.

> 2) Andy Cutler's protocol entails giving DMPS every 8 hours or DMSA

> every 4 hours, plus ALA every 3 hours, around the clock for 3 days,

> with 4 days off. Grueling but more likely to result in good, swift

> chelation. (Why this protocol does not include MB12 shots, I don't

> know.)

In " Amalgam Ilness " Andy gives exhaustive supplement recommendations,

although they tend to be more about reducing symptoms and side effects

than about getting pathways to work. A lot of stuff he suggests trying

because Hg-poisoned peeps are likely to feel better if they take it --

methyl B12 is one of them, although he favors oral rather than shots

because some kids have ugly long-lasting regressions with the shots

(it sounds like Yasko understands why).

>

> 3) Some kids don't do well on either of the aforementioned chelation

> protocols, because either a) they cannot tolerate sulpher (the basis

> of DMSA/DMPS chelation agents) and have constant yeast/gut issues;

I think you can separate these two -- the sulfur intolerance from the

gut problems. IMO we're all much better at treating yeast/bacteria now

and aren't as frightened by them as before.

c) they have too high of a viral/bacterial load, which hides

> the metals and prevents chelation from happening.

That's debatable. I'd say the viral/bacterial symptoms are masking the

improvements from chelation rather than preventing it from happening.

> Should I just shell out the $750 minimum (plus what is it --

> $200/month in supplements) to get the genetic analysis and treatment

> from Yasko, even though our current chelation protocol appears to be

> working?

Before I did that I would read as many parent reports as I could --

are the kids doing better? In what ways? Are any of them doing worse?

In what ways? Try to focus on the bad reports so you get a good

picture of both the risks and how well the protocol is working -- it's

easy to get swept away by a few glowing reports but every protocol has

those.

> Should I just immediately switch to the Cutler protocol, dropping our

> current DAN protocol altogether?

I would . At least for dosing and timing. Maybe your DAN has other

things in his/her arsenal that will be helpful. Is the DAN open to

your input?

>but I guess I need to know what are the signs

> that indicate that the chelation (Cutler or DAN) is not working

> optimally.

Observe your kids really closely. If it's working, you should see

glimpses of really good stuff now and then. It's like the sun peeking

from behind a cloud, and then the clouds sweep over again and you

grind through some more rounds and see a few more glimpses...it's

unfortunately very slow, at least for the very poisoned.

If your kids are doing worse, that's a bad sign. If you hang around on

this list you'll see plenty of new people come, describing bad

symptoms (we just started chelating and my kid is screaming and

crying!) and if they change to the gentler protocol the kids do much

better.

As for " optimally " , who knows. We're all still learning. If it weren;t

such hell to live through, this whole process of figuring out our

kids' biochemistries would be *really interesting.

My eyes just glaze

> over when I see that methylation pathway chart!

Yep, lol.

> And some of the stuff

> is so fuzzy --- how does one know whether a supplement is working or

> not (in Step 1); seems like all you can know is if a supplement makes

> your child have a bad reaction.

It's quite tricky. It's all trial and error and observation. SOme

people are really good at it, like Dana, and the rest of us cheat off

her .

> 1) what are considered harmful reactions to chelation;

If you're using DMSA there's a small risk of neutrophil depletion,

some people test periodically to keep an eye out for that. My son used

to have some really terrible days after I started chelating -- but

they were terrible days in ways I was familiar with. If he had started

up some totally different terribleness that would have worried me.

(I'm just thinking about this now, I may retract it after thinking

more.) What most people find is that chelation makes things noticeably

*better. If that's not happening, something's not right.

and 2) what

> kind of lab testing that should ideally be done to monitor the safety

> and effectiveness of chelation. I ask the latter two questions for

> people who, like me, are considering going it alone

I did preliminary blood work and some other DAN tests before starting

chelation. Then in 2.5 years I did nothing except for some hair tests

that were unnecessary. Other people draw the line differently though

-- it's really what you're comfortable with.

Nell

August 10, 2006

What a great post. Okay, , I'll try to help with some of this,

though like you I'm still searching for the big picture. Comments

interspersed....

I am about to buy Andy Cutler's " hair

> test " book (if you all think that that's the right book to get).

Yes, great book, but get Amalgam Illness at the same time if you

can. They cover different things and if you do end up using Andy's

protocol you'll really use the Amalgam Illness book. The Hair Test

book is a somewhat easier read.

> Here's what I have gleaned from reading the posts here.

>

> 1) The DAN protocol seems way too imprecise, takes too long to

figure

> out if you've got the right protocol for your child, etc. There is

> very little customizing for your own child's body chemistry, etc.

> (unlike the Yasko approach). Also, the dosing schedule for

chelation

> (3 days 2xday on, 11 days off) is imprecise and inefficient,

according

> to Andy Cutler, making chelation a longer (and possibly more

> uncomfortable and expensive) process than it has to be.

Not only that, it is more *dangerous*. Some kids do well/okay on it,

others - and we see a lot of these reports here - do very badly on

DAN! -style chelation. The big difference is that Andy's protocol

takes the half-life of chelators into account, nobody else seems to

do this. Without a steady blood level of chelator for an adequate

amount of time, you increase mercury redistribution. Lots of Hg,

etc. gets stirred up with large doses of chelator, and as blood level

drops the metal is dropped too. It will tend to go to tissues it has

an affinity for, and do lots of harm. Mercury goes to the brain.

>

> 2) Andy Cutler's protocol entails giving DMPS every 8 hours or DMSA

> every 4 hours, plus ALA every 3 hours, around the clock for 3 days,

> with 4 days off. Grueling but more likely to result in good, swift

> chelation. (Why this protocol does not include MB12 shots, I don't

> know.)

It is a bit gruelling, but most of us are happy to do it. Chelation

on the Cutler protocol is effective and as efficient as it can be

without making the person feel like crap, but any proper chelation is

still a long process. Most will need two years or more to be fully

chelated. Andy's protocol does not include mB12 shots because mB12

is not a chelator. Andy generally recommends people try oral mB12

first, and then if it is tolerated and if you keep on increasing the

dose but more is needed, move on to injections. this way adverse

reactions to sudden large doses of mB12 are avoided. If you are

already doing the injections and seeing good results, just keep doing

them.

>

> 3) Some kids don't do well on either of the aforementioned

chelation

> protocols, because either a) they cannot tolerate sulpher (the

basis

> of DMSA/DMPS chelation agents) and have constant yeast/gut issues;

> they cannot tolerate MB12 (due to CBS upregulation or something

like

> that); or c) they have too high of a viral/bacterial load, which

hides

> the metals and prevents chelation from happening.

>

> 4) There is a distinction between recent and past exposure, such

that

> chelation with anything other than ALA will NOT get heavy metals

out

> of the brain. This makes the ordinary DAN protocol as well as the

> Yasko protocol ineffective in that regard; only the Andy Cutler

> protocol will remove non-recent heavy metals stored in the brain.

This is correct.

But

> even if all past toxins are removed, only the ongoing

supplementation

> associated with the Yasko protocol will repair the " mythelation

> pathway " and allow the body to cope with ongoing toxins. Someone

told

> me that the Yasko protocol is like repairing a revolving door: The

> kids have some methylation genetic error that prevents them from

> excreting heavy metals; just getting the metals out won't make the

> door (the healthy excretion process) work. So this is reportedly

why

> some people who've " recovered " their children (Dr. Bhuttar comes to

> mind) still state that they chelate their child once a year for a

> month. Because the kids have a genetic mutation that won't enable

them

> to deal with ongoing environmental toxins.

>

> Should I just shell out the $750 minimum (plus what is it --

> $200/month in supplements) to get the genetic analysis and

treatment

> from Yasko, even though our current chelation protocol appears to

be

> working? How do I know that it really is working as well as it

could?

> Should I just immediately switch to the Cutler protocol, dropping

our

> current DAN protocol altogether?

Well, I would, but as you see I am biased! Chelation does take

awile, so you could start with getting hair tests, getting the

chelation supplementation protocol going, doing some trial rounds,

and then, in the meantime, continue researching the Yasko protocol.

That might be one efficient way of doing things. People who use the

Yasko protocol would probably recommend you start there, though.

I can always get the genetic analysis

> done later, I suppose, but I guess I need to know what are the

signs

> that indicate that the chelation (Cutler or DAN) is not working

> optimally. Then again, perhaps this is all more of an art than a

> science.

Generally a trial of 5 to 10 rounds of the Cutler protocol will tell

you if it is going to be helpful for your child. Keep in mind that

Andy notes that there is a slump period that naturally happens when

chelating mercury - about 3 to 9 months in, I think. He says to just

chelate through it, and you will see the results on the other side.

We saw amazing improvements at first, and now I believe we are in the

slump. HOWEVER, our child is not regressing, as parents sometimes do

report with other protocols.

>

> I wish we had some sort of decision tree to guide us:

>

> If diagnosed with autism/speech delay, get tested (porphyrine urine

or

> hair test?) for heavy metal toxicity, viral or bacterial

infections;

I would get the DDI Hair Elements Test (not toxic profile), and get

Andy's hair test book. Then I would read the book carefully, use the

counting rules explained in the book to determine mercury toxicity,

and/or post results here. Someone will help interpret them. Hair

tests are realtively cheap, and tell you a lot more than whether or

not you have mercury or lead poisoning. Money well spent, IMO.

> start chelation with DMSA/DMPS + ALA (as long as exposure to metals

> was at least 3 months prior); if the following reactions (X, Y, and

Z)

> are noted, switch to non-sulphur protocol (and get genetic tests

from

> Yasko), add Valtrex to cope with any viruses, plus gazillion

> supplements, etc.

In the files section of this group you will find two very good files

by Anita (mysuperteach). One is a supplement file, and at the end it

details the supplements Andy recommends during chelation. One is a

file on viruses. It goes over different approaches to viral

problems, both Rx and over the counter. Very worthwhile.

>

> (The Yasko stuff is really quite a nightmare. I made fun of it --

and

> come on, 80 supplements or 60 or even 20 a day really _is_ crazy

(even

> if it does work), you've got to see the (black) humor in that,

folks

> -- but honestly I don't feel smart enough to figure it all out...I

do

> need a " Yasko for Dummies, " as someone suggested. My eyes just

glaze

> over when I see that methylation pathway chart! And some of the

stuff

> is so fuzzy --- how does one know whether a supplement is working

or

> not (in Step 1); seems like all you can know is if a supplement

makes

> your child have a bad reaction. How in the world can you figure out

> whether the supplement you're administering balances the

> GABA/glutamate balance? Is there any research on any of this?)

>

> I don't expect much response to these questions, but I hope to

> seriously inspire someone who DOES now what they are doing to

consider

> making a flow-chart/decision tree thingy. And it'd be helpful to

know

> 1) what are considered harmful reactions to chelation; and 2) what

> kind of lab testing that should ideally be done to monitor the

safety

> and effectiveness of chelation.

On the Cutler protocol, you should NOT see big regressions or scary

reactions. The child might be somewhat more cranky, either on round

or just after one. You might see a bit more stimming, etc. If your

child is always getting sick during chelation, or having wild (bad)

behaviour changes, you would want to stop and figure out why. Using

the recommended supps are really important to keep the child safe and

comfortable during chelation.

As for tests, I think you might want some basic baseline tests before

starting - look in the FAQs, I can't remember the names right now -

and getting these same basic tests done every 3-4 months can be

helpful. These are garden variety tests that any doctor can order.

I ask the latter two questions for

> people who, like me, are considering going it alone (in order to

keep

> our house!), no DAN, etc. I noticed some of you don't even do

follow

> up testing; you just look at how your child is doing.

I am doing this without a DAN, with good results so far. My local

pediatrician has been helpful in ordering tests.

> ****warning, rant follows:

>

> I waited forever to have kids, it took 4 years to get pg, I ate

> nothing but organic food (and cut caffeine) while pg, and even

moved

> to another state to get the best prenatal care. And breastfed for

ever

> (now 2 years, 4 months)! After birth, took 1.5 years off work.

d

> the kids every where, I still sleep with them, ... you get my

drift.

> They are my precious little jewels and I am so furious that I have

> look at charts of methylation, give supplements, have a house

crawling

> with therapists, shell out money to see a gazillion doctors, pour

over

> websites, etc., to try to repair what should never have happened in

> the first place. All for stupid flu shots (while pg and when kids

were

> 8 months)! Who cares about getting the flu anyway?

>

> *****end of rant

Yeah, my guy nursed till he was almost three, we did the whole

attachment parenting thing too. I sure don't regret it *at all*, but

it is really exasperating to know that we are struggling with serious

health problems anyway. Given what you've said, you should consider

getting a hair test for yourself sometime too. Lots of us moms are

mercury/whatever else toxic too. I'm chelating myself along with my

son, plan to start my NT daughter this fall. We're all toxic.

take care, keep us posted, and don't be afraid to ASK QUESTIONS! lol.

René

August 11, 2006

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

From: Brennan-

Hi Everybody:

I'm trying to get a handle on which protocol is best to use.

I admit I have much homework still to do. I bought and read most of

Yasko's Puzzle book (2nd ed.); had to put the book down when I got to

the supplements list for Step 1; I am about to buy Andy Cutler's " hair

test " book (if you all think that that's the right book to get).

Here's what I have gleaned from reading the posts here.

<<<I bought a LOT of books, but the ones that are always out, either on my

coffee table or in my office are both of Andy's book and also a very good one

that has the decision tree that you want is the book by Dr. Sydney Baker and Jon

Pangborn, called " Autism: Biomedical Treatment " .

I would recommend reading Andy's books first to get a good basis of what to do

and what not to do. Andy's " Amalgam Illness " has a section of supplements to try

for specific symptoms and when we got in trouble here, that is where I went to

see what we could try to reduce some symptom.>>>>>

1) The DAN protocol seems way too imprecise, takes too long to figure

out if you've got the right protocol for your child, etc. There is

very little customizing for your own child's body chemistry, etc.

(unlike the Yasko approach). Also, the dosing schedule for chelation

(3 days 2xday on, 11 days off) is imprecise and inefficient, according

to Andy Cutler, making chelation a longer (and possibly more

uncomfortable and expensive) process than it has to be.

<<I don't know if imprecise is the word for the Dan protocol, inconsistent, as

to results, and unsafe, for some kids. That's what makes it so confusing, some

kids can do the Dan! protocol and recover and then the next kid will regress.

We decided if we were going to do this, we were going to do this in the safest

way possible, Andy's protocol is, hands down, the safest way.>>

2) Andy Cutler's protocol entails giving DMPS every 8 hours or DMSA

every 4 hours, plus ALA every 3 hours, around the clock for 3 days,

with 4 days off. Grueling but more likely to result in good, swift

chelation. (Why this protocol does not include MB12 shots, I don't

know.)

<<<You can give the dmsa and ala every 3 hours for dosing convenience, every 4

at night. The MB12 is mentioned in his book, but he says try the oral first and

if you are dosing so much methyl B12 it is getting inconvenient, then go to

another method. You can get too much methyl B12 and then get irritable and

aggressive, (this can last for awhile with the shots, just days with the oral)

plus who wants to take a shot every third day? Not me and we are needle phobic

here. I worry about the psychological effect of being too invasive with

treatments i.e., shots, suppositories, etc.

It's analagous to having a diabetic child and if they need insulin in shots,

you give it, but if they can do as well as with oral medication, you wouldn't do

the injections, so its about being as noninvasive as possible.

There is also a lot of research out there that talks about the unnecessary

bias of both allopathic and naturopathic drs in regard to thinking that methyl

B12 is only absorbed with injections. See T. Murray's ND discussion and

clinical studies that prove in most cases oral methyl B12 is adequately

absorbed.

3) Some kids don't do well on either of the aforementioned chelation

protocols, because either a) they cannot tolerate sulpher (the basis

of DMSA/DMPS chelation agents) and have constant yeast/gut issues;

they cannot tolerate MB12 (due to CBS upregulation or something like

that); or c) they have too high of a viral/bacterial load, which hides

the metals and prevents chelation from happening.

<<<Yeast is always a big problem, we never had yeast until we began chelation,

but there are lots of yeast experts here (Dana whom we call the yeast queen, but

mostly amongst each other). Chelation helps 75% of kids, biggest portion. IMO,

it is the other way around, metals keep viruses from being cleared. Metals mess

with the immune system, get the metals out, work on the viral issues.

4) There is a distinction between recent and past exposure, such that

chelation with anything other than ALA will NOT get heavy metals out

of the brain. This makes the ordinary DAN protocol as well as the

Yasko protocol ineffective in that regard; only the Andy Cutler

protocol will remove non-recent heavy metals stored in the brain. But

even if all past toxins are removed, only the ongoing supplementation

associated with the Yasko protocol will repair the " mythelation

pathway " and allow the body to cope with ongoing toxins. Someone told

me that the Yasko protocol is like repairing a revolving door: The

kids have some methylation genetic error that prevents them from

excreting heavy metals; just getting the metals out won't make the

door (the healthy excretion process) work. So this is reportedly why

some people who've " recovered " their children (Dr. Bhuttar comes to

mind) still state that they chelate their child once a year for a

month. Because the kids have a genetic mutation that won't enable them

to deal with ongoing environmental toxins.

<<<Each child reacts differently to chelation and treatment. Some excrete

quickly and their immune systems recover just as quickly. Even though I believe

that only Ala reaches the metals in the brain there are kids who have recovered

with just Dmsa so it's not as straightforward as that.

Most people do 5-10 rounds and then see where they are. In our case, just the

first round was enough to tell us we were on the right track. The normal course

of chelation is to get lots of improvements with chelation for 2-4 months, then

there is a slow down for 6-9 months where nothing seems to be happening, but

where it is important to keep chelating and then you see more progress.>>.

Should I just shell out the $750 minimum (plus what is it --

$200/month in supplements) to get the genetic analysis and treatment

from Yasko, even though our current chelation protocol appears to be

working? How do I know that it really is working as well as it could?

Should I just immediately switch to the Cutler protocol, dropping our

current DAN protocol altogether? I can always get the genetic analysis

done later, I suppose, but I guess I need to know what are the signs

that indicate that the chelation (Cutler or DAN) is not working

optimally. Then again, perhaps this is all more of an art than a

science.

<<<Yasko appears to be the answer for the people who have tried chelation and

found they did not get positive results. Not necessary for the majority of the

kids, but always something to keep on the back burner, kind of a plan B.

I wish we had some sort of decision tree to guide us:

If diagnosed with autism/speech delay, get tested (porphyrine urine or

hair test?) for heavy metal toxicity, viral or bacterial infections;

start chelation with DMSA/DMPS + ALA (as long as exposure to metals

was at least 3 months prior); if the following reactions (X, Y, and Z)

are noted, switch to non-sulphur protocol (and get genetic tests from

Yasko), add Valtrex to cope with any viruses, plus gazillion

supplements, etc.

(The Yasko stuff is really quite a nightmare. I made fun of it -- and

come on, 80 supplements or 60 or even 20 a day really _is_ crazy (even

if it does work), you've got to see the (black) humor in that, folks

-- but honestly I don't feel smart enough to figure it all out...I do

need a " Yasko for Dummies, " as someone suggested. My eyes just glaze

over when I see that methylation pathway chart! And some of the stuff

is so fuzzy --- how does one know whether a supplement is working or

not (in Step 1); seems like all you can know is if a supplement makes

your child have a bad reaction. How in the world can you figure out

whether the supplement you're administering balances the

GABA/glutamate balance? Is there any research on any of this?)

<<<<Read Baker and Pangborn's book, he does have some nice studies and that

decision tree you want, although a lot of times you will feel like you are

flying blind, at least that is how we felt. Baker also talks about how you make

a decision to use a supplement and what the exact risk is, that's important,

also has an order of things to try first, second.

I don't expect much response to these questions, but I hope to

seriously inspire someone who DOES now what they are doing to consider

making a flow-chart/decision tree thingy. And it'd be helpful to know

1) what are considered harmful reactions to chelation; and 2) what

kind of lab testing that should ideally be done to monitor the safety

and effectiveness of chelation. I ask the latter two questions for

people who, like me, are considering going it alone (in order to keep

our house!), no DAN, etc. I noticed some of you fd

<<<Each child is different, for the majority of kids, testing is not

important. Nell's first dr, I believe, told her Andy's protocol is so safe

additional testing is not that important. We were not so lucky. We got a

baseline CBC, thank goodness or I would have convinced myself that we had caused

some of the physical problems she has encountered along the way. Although ours

is recovered, we continue to experience physical problems and are still chasing

them down with testing. These were not caused by chelation, just physical

vulnerabilities she was probably born with. In case you are wondering, it is

always pretty evident when your child is having a physical problem that requires

a dr's input. Most of the time we could just look at her and tell as most

parents just know when your kid does not look right.

In a couple of weeks, I'll go back to work (I am off for summer) and

my hubby will have to do everything (but nursing, ha ha), but he has

kindly left me to do all the research on chelation/autism (DH Edit:

some truths are self-evident and DW is simply better than me at this

{smile}). Anyway, due to going back to work, I probably won't even get

to check in here very often (DH Edit: riotous laughter). That's sad,

because I feel like this is the very best place to get support in this

crazy world where the government can let your kid be poisoned, all

with the blessing of the medical community.

<<<This takes an enormous amount of effort for full-time moms, in our case we

have a team and don't know how anybody does it alone. Beg, borrow or steal help

wherever you can get it. Ask for help with your house for Christmas :-) Do

whatever you can to keep your sanity.

****warning, rant follows:

I waited forever to have kids, it took 4 years to get pg, I ate

nothing but organic food (and cut caffeine) while pg, and even moved

to another state to get the best prenatal care. And breastfed for ever

(now 2 years, 4 months)! After birth, took 1.5 years off work. d

the kids every where, I still sleep with them, ... you get my drift.

They are my precious little jewels and I am so furious that I have

look at charts of methylation, give supplements, have a house crawling

with therapists, shell out money to see a gazillion doctors, pour over

websites, etc., to try to repair what should never have happened in

the first place. All for stupid flu shots (while pg and when kids were

8 months)! Who cares about getting the flu anyway?

*****end of rant

<<<It's important to allow yourself to grieve all the losses that having an

autistic child/children can bring, but equally important not to get lost there.

I had this feeling a lot, in the beginning, about once a week, but it was a

luxury I did not feel I could afford for too long, takes away too much energy.

The best of preparation does not guarantee success. I knew about the suspected

link between thimerosol in injections and Autism as I spent a couple years

working in a hospital in the pediatric outpatient clinic. We asked for the

single dose shots, and our pediatrician reluctantly agreed, then gave her the

multi-dose injections :-(

Incomprehensible as to why he did this, but we should have checked, asked to

read the package insert and then, checked again, we, regrettably did not. When

it was all said and done, it was our responsibility, she doesn't matter to

anyone like she does to us. There is nothing we can do about that although I

have had dreams about what I would like to do :-).

Now that things are better, it doesn't take as much of my energy not to go

here. So in small amounts the rants are important.

IMO, you have a good grasp on what you need to do. I look forward to your

future posts full of the miraculous changes you are no doubt going to see.

Good luck, and DH,

Sorry again, please help if you can spare the time,

My DAN doc advised DMSA 2 x day for 3 days, 11 days off; MB12 shots

every other day; supplementation every day with Supernuthera, CLO, and

lithium. I'm thinking of switching to AC's protocol, despite the fact

that we're seeing good progress with my son (after 6 rounds of

chelation). We haven't done follow up urine tests, so we have no idea

what he's dumping, if anything. It may be the MB12 shots that are

giving us the improvements.

So why doesn't AC's protocol include MB12 shots?

August 11, 2006

Kelley,

Oh, I am SOOOO with you when you talk about your frustration! My son is 26 and

look at him every day and think to myself, " What right did they have to take

away so much of his life??? " I pray so hard for all of you with little ones

that you can figure out how to get the stuff out quickly, so your kids can

experience a normal life.

My daughters are in their twenties now, and wanting to be as careful as you . .

..

Don't we all wish that the science was far enough along that the right path was

all laid out for us. I've been on these lists for 6 years now, since this

bombshell fell into our lives, and I've watched the evolution of mercury detox

treatment. But we're really not there yet, only getting closer.

Blessings, hon . . .

Barb

[ ] Trying to get the big picture -- help , Nell,

Dana, Andy et al (long)