Re: Less frequent dosing and internet troll behavior

June 9, 2008

Thank you for the clarification.

Best wishes,

> >

> > When you said " whatever he used to do, " I was left to conclude

that

> > you didn't know what he used to do... If you were sitting in

front

> of

> > me right now I'd further engage in this discussion 'till we

> > understood each other better, but this has taken up enough of our

> > typing time and energy (atleast for me). And please note that

you

> > don't come across as one prone to attacks or argument. BTW, I

can

> > relate to your circumstances very well.

> >

> > Take care,

> >

>

June 9, 2008

Wow, very inspiring. & nbsp; I know so many people that stop when their children

are a certain age. & nbsp; Good for you!!!! & nbsp; My sister's professor at college

has 2 children in college with Autism and they are all recovered. & nbsp; Her

professor met my daughter at graduation and thought she (my daughter) was very

mild and made the comment, " She'll recover in no time. " & nbsp; I sent her a video

of where my daughter used to be and she was surprised; just a year ago my

daughter had no language, her cousins used to call her Super Girl because she

flapped her hands so much they said she would fly away, she couldn't run, it

took her forever to sit down (like she was trying to determine how far the seat

was away), etc.

I really like hearing success stories from parents with older kids because it

makes me keep at it.

A woman in my group has a 27 year old daughter with Autism; if you have any

info. or video (of your son) that I can send to her, I would really appreciate

it.

Thanks!

From: Axe & lt;badaboom@... & gt;

Subject: [ ] Re: Less frequent dosing and internet troll behavior

Date: Monday, June 9, 2008, 10:33 AM

I haven’t kept up with this thread but we recovered our son who is

now 19

when he was 17-18. We did not fully chelate, probably only got ½ done

through the andy cutler method before having to stop to pay for medication

for our daughter with uveitis. We chelated 8 months.

Here is an update: A few days ago he went to rockfest and had so much fun

and came back sunburned from 14 hours in the sun. He has a car, and a job

and is in college. He wrote a persuasive speech for his speech class on

procrastination. He has other college students that want to roommate with

him and they all went looking for apartments by the college but they would

not rent to them because it was too many kids in a 3 bedroom so now they are

looking for a house to rent.

He is brilliant in his job with computers, helps me around the house, and

has friends and goes out socially, he gives eye contact and can have

conversations now. He interacts with his siblings and his “chore” is to

motivate them to do their chores since he is so great at that. Yesterday he

told me that while watching my younger son work, he found that he didn’t get

any work done because he spent the day tattling on other people and annoying

them so they couldn’t get their chores done. He shows great management

skill potential and shows insight into others with his thinking. Prior to

chelation, he didn’t bathe, didn’t leave his room (ocd) and didn’t have a

conversation beyond “need food” or can you buy me such and such video game.

This is the boy that was hardly verbal and relatives told me that setting a

goal of driving was too ambitious of a goal to ever set for him.

I still do not think we are finished Chelating him. My next step I think

should be testing his adrenals and fixing them, and then he might feel like

continuing on with chelation again when we can afford it. His sleep clock

is off, so that is one gain that has regressed. Please understand that I

get a lot of people wanting to know what we did so I can’t answer every

private email as I would like. We did the andy cutler method of chelation

with a strong continual rotation of yeast fighters (everything but the

kitchen sink) protocol in place while he ate a diet of pizza hut, taco

bell, burger king and subway. So, basically you can chelate successfully

and eat crap which I find really interesting because I could go from all

organic foods and eat crap to afford chelators then go back to all organic,

in theory it would work…

Most often we would do a 3 day round every 2 weeks for 8 months, taking

longer breaks for illness if yeast got out of control but staying on

supplements inbetween rounds as well as on rounds using dmsa/ala. Dmsa only

for the first month or two. Starting with very low doses, like 12.5mg, dosed

every 4 hours dmsa, every 3 with ala. We also had an extreme

supplementation protocol (if he needed it, he got it, and he needed a lot

because of his symptoms and diet), with high zinc, clo, and amino acids

which was inspired by the Pfeiffer protocol. He also needed d-lactate free

probiotics. Chelation is so individual. YMMV, your mileage may vary.

Each supplement, and there was about 20 different ones, with like probably

100 individual vitamins/minerals/ etc. a day or more, maybe 150. It was an

amazing amount of pills. Fistfulls of pills. Not everyone will need that

much. The vitamin C alone was fourty capsules a day (you give to bowel

tolerance). He took 4 caps of C0-Q10 a day, we gave him lots of extra

vitamins he needed. The CoQ was for his headaches. You will find the

individual supplements your child needs, and test each one individually, so

be prepared for that. I can’t emphasize enough how financially ready you

have to be, and purchase supplements in bulk and own a capsule making

machine. Then there are people who do it for much less money and use the

basic supplements. I am just saying what it took to recover our son was on

the extreme end of cost and amount of supplements. When we begin chelating

again, he might not need all that. He eats a much healthier diet now, drinks

water, and eats food at home.

Ref list of supplements he took (to find your childs dosage and needs search

onibasu.com)

Vit C as sodium ascorbate (10,000 mg a day)

Magnesium chelated

Calcium

Chelated zinc (54mg 4 times a day which is way over the RDA, FYI)

Selenium

molybdenum

Vit e

Cod liver oil

Grapeseed extract with phosphodytlcholine

We found phosphydyltcholine gave him gains so we switched to lethicin

Metzger’s research states CLO/Combined with other supplements give

gains and we saw this with our son.

L Taurine

Orthomega

Pfeiffer aminos (search Pfeiffer protocol-they gave me their amino list over

the phone when I explained my son’s gains)

P5P

Chromium

Can’t remember all of them sorry

Now B-50

L lysine (can’t remember why)

Gut/yeast

Houstons trio with food

Custom probiotics away from food

Candidase away from food

Rotation of 2months of each MCT oil/Uva Ursi/GSE for yeast

Super strength oregano away from everything dosed middle of night.

Reducing sugar at times, sometimes on round. ALA stirs up yeast so 1 month

prior get yeast protocol in place if your

Child is yeasty. Reduce sugars prior to ala.

Activated charcoal/bentonite clay/to absorb yeast dieoff given l hour after

yeast fighters

Bad breath/casket breath

Silva solution then we switched to a better and more effective solution

(andy does not agree with giving silver, so we found something that worked

that was different, Chlorophyll)

Chlorophyll for bacterial smell

For sleep

Inositol

For migranes

Co Q 10 I think he took 100 mgs 4x a day, buy powder from now for $100, cap

it yourself in small caps

He took 4 small caps a day.

On the frequency of dmsa/ala we always used andy’s protocol of 3 or 4 hours

on the half life depending on what we were giving ala, dmsa, or both

together. We would fail the round if we missed a dose and stop the round.

I find it shocking and appauling that people would use less frequent

dosing…this is pointless in my opinion, displacing mercury and heavy metals

rather than chelating them out.

I probably have missed some things but this gives a general idea….My son is

well now. His chemical sensitivity is gone and he is no longer receiving

disability benefits because he said “He is no longer disabled”. He also

used to be chemically sensitive and was receiving ssi for that and is no

longer.

June 9, 2008

It's hard to get up every 4 hours! Once the kids are in school or

outside activities, it also becomes difficult to see them every four

hours for dosing. That has to be a huge factor in the decision-

making process.

Less frequent dosing doesn't boggle my mind; it's more the other

stuff people have tried.

Pam

> > Why risk turning them away by being so condescending?

>

> I suppose the flip side of this question is " Why do people risk

> turning away from a safer protocol by being too sensitive? "

>

> Anne

>

June 9, 2008

To cosign,

I keep my distance on this list because I don't know the Andy protocol but I am

trying to learn it and catch up. (Yes, the book was ordered and I am waiting on

it.) & nbsp; I see alot of what people are saying but I'm new and the first thing

that I'm thinking is, will this be another year of DAN!?

This group is definitely a little more " snappish " than others. & nbsp; It seems

that the members are so experienced that they don't see that alot of the new

members are in over their heads, don't know where to go and need some help

figuring out the " basics " . & nbsp; I found this group by mistake while googling

Autism and Mercury, I joined and when I read the posts, I try to see what may

pertain to me, get my Autism books and try to reference what is being said,

etc. & nbsp;

Some of the one word or one phrase responses still leave a person with

questions.

My 2 cents

& nbsp;

& gt; & gt; & gt;

& gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; & gt; You are playing troll and you should behave yourself

and stop

& gt; & gt; it.

& gt; & gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; & gt; If you weren't playing troll you'd already have started

& gt; another

& gt; & gt; & gt; & gt; list to discuss the wonders

& gt; & gt; & gt; & gt; & gt; of 8 hour DMSA dosing and devoted your efforts there.

& gt; & gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; & gt; Andy

& gt; & gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; I don't think she is trolling. I think she is trying to say

the

& gt; & gt; same

& gt; & gt; & gt; & gt; thing I am trying to say: If people are assumed to be wrong,

& gt; & gt; guilty

& gt; & gt; & gt; & gt; and stupid from the get-go for even admitting that they are

& gt; & gt; doing a

& gt; & gt; & gt; & gt; different protocol, then you have no hope of helping them

& gt; because

& gt; & gt; & gt; & gt; they won't post here.

& gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; I think it's a mistake to make a big issue out of her using

the

& gt; & gt; & gt; & gt; example of 8 hour dosing and act like she is trying to

" promote "

& gt; & gt; & gt; & gt; that. I don't think she is. You could say the same things

about

& gt; & gt; & gt; & gt; chelating with cilantro: people ask about it fairly

regularly on

& gt; & gt; & gt; & gt; this list and typically get shouted down with " NO DON'T DO

& gt; THAT " .

& gt; & gt; & gt; & gt; Some of them will do it anyway and just go elsewhere if no

one

& gt; & gt; will

& gt; & gt; & gt; & gt; have a reasonable conversation with them here.

& gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; As an example, not long after I joined the list (with no

& gt; intention

& gt; & gt; & gt; & gt; of asking questions for myself about chelation), my attempts

to

& gt; & gt; & gt; & gt; understand why cilantro was helping me were initially

shouted

& gt; down

& gt; & gt; & gt; & gt; on this list with people saying " DON'T DO THAT!!! " and,

worse,

& gt; & gt; & gt; & gt; people saying " don't do that to your kids " (implying I am a

bad

& gt; & gt; & gt; & gt; parent etc. when this didn't involve my children at all).

When I

& gt; & gt; & gt; & gt; did manage to finally get people to answer my actual

questions

& gt; & gt; & gt; & gt; instead of responding in knee jerk reaction to their fear

that

& gt; & gt; I was

& gt; & gt; & gt; & gt; harming myself and my kids, some were apologetic for their

& gt; & gt; & gt; & gt; assumptions, their previous posts, etc.

& gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; But I have a fairly long history of dealing effectively with

& gt; being

& gt; & gt; & gt; & gt; the center of controversy on lists and that allowed me to

get

& gt; past

& gt; & gt; & gt; & gt; the initial response. Most people who come here won't have

such

& gt; & gt; & gt; & gt; skills and will either not post at all (and apparently write

& gt; & gt; & gt; & gt; privately to Dana) or will argue with people briefly and

then

& gt; & gt; leave

& gt; & gt; & gt; & gt; and go elsewhere. Greeting their inquiries in a manner that

is

& gt; & gt; & gt; & gt; experienced by them as strongly emotionally negative does

& gt; & gt; nothing to

& gt; & gt; & gt; & gt; convince them of " the error of their ways " . It only

convinces

& gt; them

& gt; & gt; & gt; & gt; that folks here cannot be talked to about the issue and

won't

& gt; & gt; treat

& gt; & gt; & gt; & gt; them in a respectful and caring fashion. Help is much more

& gt; readily

& gt; & gt; & gt; & gt; accepted from people who behave in a respectful and caring

& gt; fashion

& gt; & gt; & gt; & gt; than from people who are being disrespectful, condescending,

& gt; etc.

& gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; Some studied showed that doctors could drastically reduce

their

& gt; & gt; odds

& gt; & gt; & gt; & gt; of being sued for malpractice by taking an extra 30 seconds

or

& gt; & gt; so to

& gt; & gt; & gt; & gt; have good " bedside manner " and ask questions like " How are

you

& gt; & gt; & gt; & gt; today? " instead of launching coldly into the medical part of

it.

& gt; & gt; & gt; & gt; So I would suggest that malpractice suits arise at least as

& gt; & gt; much out

& gt; & gt; & gt; & gt; of hurt feelings as out of genuine wrong-doing medically.

That's

& gt; & gt; & gt; & gt; essentially what is at issue here: Some people don't listen

or

& gt; & gt; & gt; & gt; won't post at all because of how they feel about their

treatment

& gt; & gt; & gt; & gt; (socially/emotional ly) on list rather than because of the

& gt; & gt; quality of

& gt; & gt; & gt; & gt; information here -- because they feel, and rightly so, that

& gt; there

& gt; & gt; & gt; & gt; will be an agenda to talk them out of what they are doing

before

& gt; & gt; & gt; & gt; anyone really listens to what is going on.

& gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; If that hardline can be removed from the list culture, it

would

& gt; & gt; & gt; & gt; further your goal of promoting frequent dose chelation. If

you

& gt; & gt; & gt; & gt; can't effectively reach people who are doing other types of

& gt; & gt; & gt; & gt; chelation, then you wind up " preaching to the choir " rather

than

& gt; & gt; & gt; & gt; getting " new converts " . Since your stated goal is to reach

those

& gt; & gt; & gt; & gt; doing protocols that are harmful and help them to do

something

& gt; & gt; & gt; & gt; better, then I suggest the path to that is to figure out how

to

& gt; & gt; talk

& gt; & gt; & gt; & gt; to them such that they do not feel you are saying they are

& gt; & gt; " sinners

& gt; & gt; & gt; & gt; damned to hell " who are " at fault " for hurting their kids.

& gt; Because

& gt; & gt; & gt; & gt; you are so knowledgeable and influential, your behavior will

& gt; & gt; have a

& gt; & gt; & gt; & gt; strong impact on list culture. If you continue to choose to

use

& gt; & gt; & gt; & gt; the " bombastic " approach, the list has a poor chance of

& gt; becoming a

& gt; & gt; & gt; & gt; place that welcomes exactly the type of people you state

that

& gt; you

& gt; & gt; & gt; & gt; most wish to reach. If you find another manner that works

for

& gt; you,

& gt; & gt; & gt; & gt; your behavior alone will go a long way towards revising the

list

& gt; & gt; & gt; & gt; culture and providing a model for others to follow. If that

& gt; & gt; weren't

& gt; & gt; & gt; & gt; so, I would be far less concerned about trying to get

through to

& gt; & gt; & gt; & gt; you, specifically, about what I understand works and doesn't

& gt; work.

& gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; Peace.

& gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; Michele

& gt; & gt; & gt; & gt;

& gt; & gt; & gt;

June 9, 2008

Less frequent dosing is what scares me most (especially IVs). We

have enough damage with which we are dealing. The thought of doing

further damage, and perhaps not even being able to tell for some

time, scares the daylights out of me. For all that I am basically a

raging liberal, I am generally pretty conservative with this

stuff :-).

> > > Why risk turning them away by being so condescending?

> >

> > I suppose the flip side of this question is " Why do people risk

> > turning away from a safer protocol by being too sensitive? "

> >

> > Anne

> >

>

June 9, 2008

For better or for worse, I do think it is the list where you get the

stronger personality types. But it isn't usually this snappy :-)

Many of the basics can be found in the files. There is one file in

particular which used to be called " love letters " - a compilation of

posts on the board, by category - that is very helpful. There is

also another group, frequent dose chelation, which is mainly for

adults who are chelating on Andy's protocol. That group is helpful

and it is especially nice to have adults who can express themselves

tell us their experiences with all kinds of chelation.

Dig around, don't get scared off, ask questions, and make thoughtful

decisions based on all the information available to you, whether it

is presented in a warm-fuzzy or cold-prickly way. Ultimately, that

is all we can do.

Anne

>

> & gt; & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt; & gt; You are playing troll and you should

behave yourself and stop

>

> & gt; & gt; it.

>

> & gt; & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt; & gt; If you weren't playing troll you'd

already have started

>

> & gt; another

>

> & gt; & gt; & gt; & gt; list to discuss the wonders

>

> & gt; & gt; & gt; & gt; & gt; of 8 hour DMSA dosing and devoted your

efforts there.

>

> & gt; & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt; & gt; Andy

>

> & gt; & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt; I don't think she is trolling. I think she is

trying to say the

>

> & gt; & gt; same

>

> & gt; & gt; & gt; & gt; thing I am trying to say: If people are

assumed to be wrong,

>

> & gt; & gt; guilty

>

> & gt; & gt; & gt; & gt; and stupid from the get-go for even admitting

that they are

>

> & gt; & gt; doing a

>

> & gt; & gt; & gt; & gt; different protocol, then you have no hope of

helping them

>

> & gt; because

>

> & gt; & gt; & gt; & gt; they won't post here.

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt; I think it's a mistake to make a big issue out

of her using the

>

> & gt; & gt; & gt; & gt; example of 8 hour dosing and act like she is

trying to " promote "

>

> & gt; & gt; & gt; & gt; that. I don't think she is. You could say the

same things about

>

> & gt; & gt; & gt; & gt; chelating with cilantro: people ask about it

fairly regularly on

>

> & gt; & gt; & gt; & gt; this list and typically get shouted down

with " NO DON'T DO

>

> & gt; THAT " .

>

> & gt; & gt; & gt; & gt; Some of them will do it anyway and just go

elsewhere if no one

>

> & gt; & gt; will

>

> & gt; & gt; & gt; & gt; have a reasonable conversation with them here.

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt; As an example, not long after I joined the

list (with no

>

> & gt; intention

>

> & gt; & gt; & gt; & gt; of asking questions for myself about

chelation), my attempts to

>

> & gt; & gt; & gt; & gt; understand why cilantro was helping me were

initially shouted

>

> & gt; down

>

> & gt; & gt; & gt; & gt; on this list with people saying " DON'T DO

THAT!!! " and, worse,

>

> & gt; & gt; & gt; & gt; people saying " don't do that to your kids "

(implying I am a bad

>

> & gt; & gt; & gt; & gt; parent etc. when this didn't involve my

children at all). When I

>

> & gt; & gt; & gt; & gt; did manage to finally get people to answer my

actual questions

>

> & gt; & gt; & gt; & gt; instead of responding in knee jerk reaction to

their fear that

>

> & gt; & gt; I was

>

> & gt; & gt; & gt; & gt; harming myself and my kids, some were

apologetic for their

>

> & gt; & gt; & gt; & gt; assumptions, their previous posts, etc.

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt; But I have a fairly long history of dealing

effectively with

>

> & gt; being

>

> & gt; & gt; & gt; & gt; the center of controversy on lists and that

allowed me to get

>

> & gt; past

>

> & gt; & gt; & gt; & gt; the initial response. Most people who come

here won't have such

>

> & gt; & gt; & gt; & gt; skills and will either not post at all (and

apparently write

>

> & gt; & gt; & gt; & gt; privately to Dana) or will argue with people

briefly and then

>

> & gt; & gt; leave

>

> & gt; & gt; & gt; & gt; and go elsewhere. Greeting their inquiries in

a manner that is

>

> & gt; & gt; & gt; & gt; experienced by them as strongly emotionally

negative does

>

> & gt; & gt; nothing to

>

> & gt; & gt; & gt; & gt; convince them of " the error of their ways " . It

only convinces

>

> & gt; them

>

> & gt; & gt; & gt; & gt; that folks here cannot be talked to about the

issue and won't

>

> & gt; & gt; treat

>

> & gt; & gt; & gt; & gt; them in a respectful and caring fashion. Help

is much more

>

> & gt; readily

>

> & gt; & gt; & gt; & gt; accepted from people who behave in a

respectful and caring

>

> & gt; fashion

>

> & gt; & gt; & gt; & gt; than from people who are being disrespectful,

condescending,

>

> & gt; etc.

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt; Some studied showed that doctors could

drastically reduce their

>

> & gt; & gt; odds

>

> & gt; & gt; & gt; & gt; of being sued for malpractice by taking an

extra 30 seconds or

>

> & gt; & gt; so to

>

> & gt; & gt; & gt; & gt; have good " bedside manner " and ask questions

like " How are you

>

> & gt; & gt; & gt; & gt; today? " instead of launching coldly into the

medical part of it.

>

> & gt; & gt; & gt; & gt; So I would suggest that malpractice suits

arise at least as

>

> & gt; & gt; much out

>

> & gt; & gt; & gt; & gt; of hurt feelings as out of genuine wrong-doing

medically. That's

>

> & gt; & gt; & gt; & gt; essentially what is at issue here: Some people

don't listen or

>

> & gt; & gt; & gt; & gt; won't post at all because of how they feel

about their treatment

>

> & gt; & gt; & gt; & gt; (socially/emotional ly) on list rather than

because of the

>

> & gt; & gt; quality of

>

> & gt; & gt; & gt; & gt; information here -- because they feel, and

rightly so, that

>

> & gt; there

>

> & gt; & gt; & gt; & gt; will be an agenda to talk them out of what

they are doing before

>

> & gt; & gt; & gt; & gt; anyone really listens to what is going on.

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt; If that hardline can be removed from the list

culture, it would

>

> & gt; & gt; & gt; & gt; further your goal of promoting frequent dose

chelation. If you

>

> & gt; & gt; & gt; & gt; can't effectively reach people who are doing

other types of

>

> & gt; & gt; & gt; & gt; chelation, then you wind up " preaching to the

choir " rather than

>

> & gt; & gt; & gt; & gt; getting " new converts " . Since your stated goal

is to reach those

>

> & gt; & gt; & gt; & gt; doing protocols that are harmful and help them

to do something

>

> & gt; & gt; & gt; & gt; better, then I suggest the path to that is to

figure out how to

>

> & gt; & gt; talk

>

> & gt; & gt; & gt; & gt; to them such that they do not feel you are

saying they are

>

> & gt; & gt; " sinners

>

> & gt; & gt; & gt; & gt; damned to hell " who are " at fault " for hurting

their kids.

>

> & gt; Because

>

> & gt; & gt; & gt; & gt; you are so knowledgeable and influential, your

behavior will

>

> & gt; & gt; have a

>

> & gt; & gt; & gt; & gt; strong impact on list culture. If you continue

to choose to use

>

> & gt; & gt; & gt; & gt; the " bombastic " approach, the list has a poor

chance of

>

> & gt; becoming a

>

> & gt; & gt; & gt; & gt; place that welcomes exactly the type of people

you state that

>

> & gt; you

>

> & gt; & gt; & gt; & gt; most wish to reach. If you find another manner

that works for

>

> & gt; you,

>

> & gt; & gt; & gt; & gt; your behavior alone will go a long way towards

revising the list

>

> & gt; & gt; & gt; & gt; culture and providing a model for others to

follow. If that

>

> & gt; & gt; weren't

>

> & gt; & gt; & gt; & gt; so, I would be far less concerned about trying

to get through to

>

> & gt; & gt; & gt; & gt; you, specifically, about what I understand

works and doesn't

>

> & gt; work.

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt; Peace.

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt; Michele

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt;

>

> & gt; & gt; & gt; [Non-text portions of this message have been

removed]

>

> & gt; & gt; & gt;

>

> & gt; & gt; & gt;

>

> & gt; & gt;

>

> & gt; & gt;

June 9, 2008

THIS is why I'm 'snappy,' as someone put it.

Due to medicine having collapsed into a liberal art, where the doctors think it

is OK to be

'creative' with dangerous chemicals people can get pretty confused and hurt

their kid A

LOT before they learn the hard way that no matter how difficult it is to

understand the

fundamental laws of nature that govern chelation, they have to do it.

I spare them the anguish of hurting their kids a lot more unnecessarily by

confronting this

behavior of letting the doctor dabble artistically with dangerous chemicals and

their kid.

Unfortunately this also causes some discomfort.

Andy

> > > Why risk turning them away by being so condescending?

> >

> > I suppose the flip side of this question is " Why do people risk

> > turning away from a safer protocol by being too sensitive? "

> >

> > Anne

> >

>

June 9, 2008

How many of you would say things like " I'd give my right arm to make my kid

healthy

again? "

How many would pay $20,000 if they could make their kid healthy again?

Why does a sacrifice have to be dramatic for you to be willing to do it? The

mundane act

of getting up for a few minutes two nights a week is actually what it takes. It

really is NOT

that bad if you work on your own attitude and just do it - how many times have

you

gotten up to go to the bathroom in the middle of the night? Giving the kid his

chelator

isn't any more complicated if you have set things up before you went to sleep.

Andy

> > > Why risk turning them away by being so condescending?

> >

> > I suppose the flip side of this question is " Why do people risk

> > turning away from a safer protocol by being too sensitive? "

> >

> > Anne

> >

>

June 9, 2008

" It's hard to get up every 4 hours "

Very true - Just not as hard as dealing with the consequences that

many will face if resorting to every 8 hr dosing. After some trial

and error. I've found how much water I need to drink before sleeping

so as to wake to chelate and go to the bathroom. This way, I don't

scare myself shitless with the alarm. Also, parents are usually met

with cooperation from school staff members when explaining the

importance of frequent dosing. It is of utmost importance that we

consider the convenience of the argument for less frequent dosing.

> > > Why risk turning them away by being so condescending?

> >

> > I suppose the flip side of this question is " Why do people risk

> > turning away from a safer protocol by being too sensitive? "

> >

> > Anne

> >

>

June 9, 2008

> >

> > Forgive me for changing the direction of the thread. I'm not

> trying

> > to discourage others from going on about behavior.

> >

> > What does it take in order for people to understand that dosing

> ALA at

> > 3 h intervals gently removes mercury from the body and brain while

> > dosing ALA at 8 h intervals removes some mercury and blasts some

> back

> > into the brain with every dose.

> >

> > What does it take for people to understand that when ALA is dosed

> at 8

> > h intervals some people will regress right away and it will be

> obvious

> > whereas for others the damage might not be so noticeable and they

> will

> > notice problems in future, like chronic pain, chronic fatigue, MS,

> > ALS, hypothyroidism, Alzheimer's, psychiatric problems, and the

> list

> > goes on.

> >

> > I don't want to start going over that topic again, because it has

> been

> > discussed over and over again in the years that I have been

> following

> > the group. The chemistry of ALA has been discussed. What ALA

> does in

> > the body has been discussed. Pharmacology has been discussed.

> And,

> > there are tons of reports from parents who have recovered kids with

> > every 3 h ALA, reports from parents whose kids did better on every

> 3 h

> > ALA as compared to other protocols, reports from adults who

> regressed

> > with every 8 h ALA and got better with every 3 h ALA (there are of

> > course more adult reports in the adult group archives, and maybe

> > that's why some people in this group don't get it). I admit it is

> > difficult to sift through the archives and find those reports

> because

> > of the volume of posts, but one would think that the people who

> have

> > followed the group for years would have at least noticed.

> >

> > My question is - what does it take for people to understand why ALA

> > must be dosed at 3 h intervals?

> >

> > J

> >

>

June 9, 2008

> >

> > I'm not really rebutting anyone's remarks.

> >

> > I guess what I'm really trying to say is:

> >

> > you have to bait the hook to suit the fish.......

> >

> > and there's cluster's of different fish out there that will respond

> to

> > different bait....

> >

> > Not that I know anything about fishing...........

> >

>

June 9, 2008

> > I guess I never understood it to be Andy's role to convince people,

I take it as my role to do that in certain specific situations, like people who

are going to

hurt their kid with harmful and inapparopriate chelation.

I would also take it as my role to jump on a kid who was just about to play

russian roulette

and take the gun away even though there is an 83% chance he will be just fine.

I would also stop the car and go find out where kids lived and talk to their

mommy if they

liked to play in the street and play chicken with oncoming cars (I actually had

this happen

in my apartment complex - apparently nobody else bothered).

What part of " harmful, dangerous and inappropriate " don't people understand?

If I was all sweetness and light and you went off and did something to your kid

that I

" suggested you might consider not doing, " and your kid got horribly worse and

you

couldn't do anything about it, wouldn't you be upset I hadn't been a bit more

forceful and

convinced you not to do it in the first place?

I do want to convince people not to hurt their poor unfortunate kids any more!

Andy

June 9, 2008

> I also think its possible the bombastic approach just might wake a few

> people up.

>

> I also think when you take the softly softly approach there are a number

> of people who hear:

>

> " At the end of the day, you can do whatever you want, its all good. "

My experience has been that these are correct.

Andy

June 9, 2008

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

From: Dan & Ruth Setlak

-

Well, I don't see much of an effort to discern between those parents

that " know better " and those that are " ignorant. " (No real

discernment about what kind of fish is asking, nor what kind of hook

would " fit " either.) People usually get a stern warning immediately

(first post) without even an explanation.

====>We're speaking about two different things here. You're discussing Andy's

demeanor, I'm speaking about mine. I don't try to explain Andy and I don't

obsess over how he is.

I really do believe that it's best to allow people to be who they are and then

I decide if I want to get involved with them. I don't try to force people to be

who I need them to be.......not that I haven't done that, it's that I have and

it doesn't work. I either take what they have to offer, however it's offered, or

I move on.

Good use of the fishing metaphors, however

ANd, to me, " know better:

would imply that they had information or experience that provided

some sort of proof, which they are choosing to ignore. That is

almost never the case on the list. Parents are usually seeking help,

information,etc. They have little to no experience with chelation,

and are trying to sift through the vast amount of conflicting

information. If they have used a different protocol ( like Dana)

but have no reason to believe it is harmful, then how is it that they

" know better " ? Because you told them? Hmmm.

People on this list will attack a parent who follows the advice of a

DAN or other physician, claiming they are not thinkers, but rather

are blind followers. But, it seems like many here are hypocritical.

If we want people to be (or become) thinkers (and not blind

followers), then we need to LET THEM GO THROUGH THE PROCESS. Ask

provoking questions, challenge with research and science, explain

your own personal experiences. Patience IS KEY.

I absolutely believe you can be straightforward and honest about the

risks of chelation, how to avoid them etc without being bombastic and

resorting to personal attacks. One is called integrity, the other

manipulation.

Ruth

On Jun 9, 2008, at 11:26 AM, wrote:

>

> ----- Original Message -----

> From: Dan & Ruth Setlak

>

> Well, I don't think I proposed a softly, softly approach, but merely

> a respectful one. I find it interesting that people on this list

> serv often act as if there is not in-between.

>

> ====>Lots of lessons here, for me for sure but because it's always

> easier to start with someone other than yourself.... here goes.

>

> A lot of this has to do with cohort groups and their expectations.

> Each generation becomes more spoiled than the last, mine included.

> I am a baby boomer, there were a ton of us. Noone gave us the

> delusion that we were overvalued so we were taught to wait our

> turn, do the work for ourself, keep our mouth shut and if someone

> were willing to help us (other than our parents) noone would think

> about worrying about how the message was delivered. We were stupid

> enough to believe that the help was valuable.

>

> As the number of children a parent had lessened this has changed,

> maybe for the better. But maybe not if parents' are willing to do

> things to hurt their kids because the message is not in the tone

> they prefer. Yes, that will teach the person not to be rude. Really

> fail to see the logic here.

>

> And, at the end of the

> day, they are the parents and will need to make their own decisions.

>

> ====>Yes, this is the right of every parent, within reason, no

> doubt. However I do not think respect is something I can muster for

> parents' who chose to do things to hurt their children, sorry,

> can't do it. For parents' who are ignorant (meaning they don't know

> better) lots of patience..... for parents' who know better and

> chose to do things in the parents' best interests...I can't muster

> respect for that idea.

>

> Overconcern for the feelings of adults who have choices appear to

> be at the expense of little people who are helpless......something

> wrong here.

>

> You can be straightforward, not apologetic,

> and accurately state the risks without being rude, condescending, and

> manipulative, IMO.

>

> ====>No, you really can't be straightforward without a lot of

> unwarranted complaints that you are bashing and such. It's always

> interesting to me that after a conversation with Dana the only

> people who are whipped into emotional overdrive are..........Dana

> and I.

>

> You're correct in that you can't please everyone and I agree that

> the response should match the situation and rarely necessitates

> starting out with strong tactics....however, they are sometimes

> necessary.

>

> Ruth

> On Jun 9, 2008, at 9:30 AM, Reynolds wrote:

>

> > Then again there are those of us that like people that cut to the

> > chase

> > and don't pussyfoot around.

> >

> > I also think its possible the bombastic approach just might wake

> a few

> > people up.

> >

> > I also think when you take the softly softly approach there are a

> > number

> > of people who hear:

> >

> > " At the end of the day, you can do whatever you want, its all good. "

> >

> > But its not all good.

> >

> > Dan & Ruth Setlak wrote:

> > >

> > > Just want to say that I agree. whether you choose bombastic or

> > > respectful, you won't convince everyone. strong, assertive, but

> > > respectful will, in my mind, reach more people. You will always

> have

> > > the ones that are going to do what they want, no matter what,

> or who

> > > only will listen to what they want to hear. But, there are

> those you

> > > are really seeking to learn, who want real information. Why risk

> > > turning them away by being so condescending?

> > >

> > > Ruth

> > > On Jun 8, 2008, at 7:34 PM, Michele wrote:

> > >

> > > >

> > > > >

> > > >

> > > > > You are playing troll and you should behave yourself and stop

> > it.

> > > > >

> > > > > If you weren't playing troll you'd already have started

> another

> > > > list to discuss the wonders

> > > > > of 8 hour DMSA dosing and devoted your efforts there.

> > > > >

> > > > > Andy

> > > > >

> > > > I don't think she is trolling. I think she is trying to say the

> > same

> > > > thing I am trying to say: If people are assumed to be wrong,

> > guilty

> > > > and stupid from the get-go for even admitting that they are

> > doing a

> > > > different protocol, then you have no hope of helping them

> because

> > > > they won't post here.

> > > >

> > > > I think it's a mistake to make a big issue out of her using the

> > > > example of 8 hour dosing and act like she is trying to " promote "

> > > > that. I don't think she is. You could say the same things about

> > > > chelating with cilantro: people ask about it fairly regularly on

> > > > this list and typically get shouted down with " NO DON'T DO

> THAT " .

> > > > Some of them will do it anyway and just go elsewhere if no one

> > will

> > > > have a reasonable conversation with them here.

> > > >

> > > > As an example, not long after I joined the list (with no

> intention

> > > > of asking questions for myself about chelation), my attempts to

> > > > understand why cilantro was helping me were initially shouted

> down

> > > > on this list with people saying " DON'T DO THAT!!! " and, worse,

> > > > people saying " don't do that to your kids " (implying I am a bad

> > > > parent etc. when this didn't involve my children at all). When I

> > > > did manage to finally get people to answer my actual questions

> > > > instead of responding in knee jerk reaction to their fear that

> > I was

> > > > harming myself and my kids, some were apologetic for their

> > > > assumptions, their previous posts, etc.

> > > >

> > > > But I have a fairly long history of dealing effectively with

> being

> > > > the center of controversy on lists and that allowed me to get

> past

> > > > the initial response. Most people who come here won't have such

> > > > skills and will either not post at all (and apparently write

> > > > privately to Dana) or will argue with people briefly and then

> > leave

> > > > and go elsewhere. Greeting their inquiries in a manner that is

> > > > experienced by them as strongly emotionally negative does

> > nothing to

> > > > convince them of " the error of their ways " . It only convinces

> them

> > > > that folks here cannot be talked to about the issue and won't

> > treat

> > > > them in a respectful and caring fashion. Help is much more

> readily

> > > > accepted from people who behave in a respectful and caring

> fashion

> > > > than from people who are being disrespectful, condescending,

> etc.

> > > >

> > > > Some studied showed that doctors could drastically reduce their

> > odds

> > > > of being sued for malpractice by taking an extra 30 seconds or

> > so to

> > > > have good " bedside manner " and ask questions like " How are you

> > > > today? " instead of launching coldly into the medical part of it.

> > > > So I would suggest that malpractice suits arise at least as

> > much out

> > > > of hurt feelings as out of genuine wrong-doing medically. That's

> > > > essentially what is at issue here: Some people don't listen or

> > > > won't post at all because of how they feel about their treatment

> > > > (socially/emotionally) on list rather than because of the

> > quality of

> > > > information here -- because they feel, and rightly so, that

> there

> > > > will be an agenda to talk them out of what they are doing before

> > > > anyone really listens to what is going on.

> > > >

> > > > If that hardline can be removed from the list culture, it would

> > > > further your goal of promoting frequent dose chelation. If you

> > > > can't effectively reach people who are doing other types of

> > > > chelation, then you wind up " preaching to the choir " rather than

> > > > getting " new converts " . Since your stated goal is to reach those

> > > > doing protocols that are harmful and help them to do something

> > > > better, then I suggest the path to that is to figure out how to

> > talk

> > > > to them such that they do not feel you are saying they are

> > " sinners

> > > > damned to hell " who are " at fault " for hurting their kids.

> Because

> > > > you are so knowledgeable and influential, your behavior will

> > have a

> > > > strong impact on list culture. If you continue to choose to use

> > > > the " bombastic " approach, the list has a poor chance of

> becoming a

> > > > place that welcomes exactly the type of people you state that

> you

> > > > most wish to reach. If you find another manner that works for

> you,

> > > > your behavior alone will go a long way towards revising the list

> > > > culture and providing a model for others to follow. If that

> > weren't

> > > > so, I would be far less concerned about trying to get through to

> > > > you, specifically, about what I understand works and doesn't

> work.

> > > >

> > > > Peace.

> > > >

> > > > Michele

> > > >

> > >

June 9, 2008

FWIW - we are getting up 3 nights - doing a complete 72 hours - and my

chelating kids siblings (grown and living on their own) are even willing

to get up in the night when they stay over to make sure little brother

or sister takes their ALA. This last weekend we were doing 2a.m. and

6a.m. phone calls to make sure no one forgot. They are all anxiously

waiting for when they too can start chelating. Even Dad, who works 12

hour days, is willing to get up! We are all so excited about getting

better, that 3 nights a week really seems not too bad compared to the

years of troubles we have already endured. We already did 12 years of

night waking for bed wetting, sleep walking, tooth grinding, stomach

aches, etc. This really is a walk in the park. My older son loved the

2 a.m. dosing, since it coincides with the free download time on our

internet service!! He wakes, takes his pills then starts a download and

goes back to bed. :-) Teenagers are so resourceful when they feel good.

P.

andrewhallcutler wrote:

>

> How many of you would say things like " I'd give my right arm to make

> my kid healthy

> again? "

>

> How many would pay $20,000 if they could make their kid healthy again?

>

> Why does a sacrifice have to be dramatic for you to be willing to do

> it? The mundane act

> of getting up for a few minutes two nights a week is actually what it

> takes. It really is NOT

> that bad if you work on your own attitude and just do it - how many

> times have you

> gotten up to go to the bathroom in the middle of the night? Giving the

> kid his chelator

> isn't any more complicated if you have set things up before you went

> to sleep.

>

> Andy

>

> > > > Why risk turning them away by being so condescending?

> > >

> > > I suppose the flip side of this question is " Why do people risk

> > > turning away from a safer protocol by being too sensitive? "

> > >

> > > Anne

> > >

> >

>

June 9, 2008

In fact, I would argue that given that one of the major obstacles

standing between people dosing every three hours and people dosing

less frequently, whatever the medium of delivery, is convenience,

people need to take the information available to them i.e.

information like " dosing other than accoriding to the 1/2 life of a

chelator is harmful, dangerous and inappropriate " and convince

themselves that they should do it more frequently.

If you really DO want to convince people, then you probably do need

to do a lot more hand holding than you seem to do. I imagine that

the issue for most people isn't truly thinking you are wrong, but

thinking that there is no way they can do it. In that case, people

need to be assured, reassured, empowered, etc., until they are

convinced that frequent dosing isn't the end of the world. Although

I am guilty of not having been here for my fellow board members

lately, I tend to think that the hand-holding, etc., is what board

members who advocate for your dosing schedule are here for.

You are right, getting up in the middle of the night isn't a huge

sacrifice. What I find to be more of a sacrifice is doing what I

have to do to be as organized as is required to do things

efficiently and consistently. My husband usually does one dose

after I go to bed, but other than that, I have little support other

than from the folks here and on other boards, and all of this, the

researching, buying, ordering, preparing, organizing, etc., is on

me.

If I didn't work full time, it wouldn't seem so overwhelming, but I

do, and have to, and it does. I know for a fact that there are many

parents who have even more on their plates than I do. Doing the

frequent dosing on top of adding in what is essentially another job

into an already hectic life can seem crazy. On the other hand,

doing all of the organizing, etc., only to put your child in the way

of further danger seems even crazier.

As for your statement that fear begets bad decision making, I

remember distinctly one instance in which you scared the bejesus out

of me and, in fact, that fear got me to do exactly what I needed to

do, and fast. I realize that that same fear, if misplaced, could

spell disaster. Being cautious is generally good. However, being

terrified of IV chelation is, in my opinion, not such a bad thing.

Ultimately, it seems to me, it is about who to trust. If good

decisions are made in that respect, there will be better

information, less fear, and an all around better prognosis.

>

> > > I guess I never understood it to be Andy's role to convince

people,

>

> I take it as my role to do that in certain specific situations,

like people who are going to

> hurt their kid with harmful and inapparopriate chelation.

>

> I would also take it as my role to jump on a kid who was just

about to play russian roulette

> and take the gun away even though there is an 83% chance he will

be just fine.

>

> I would also stop the car and go find out where kids lived and

talk to their mommy if they

> liked to play in the street and play chicken with oncoming cars (I

actually had this happen

> in my apartment complex - apparently nobody else bothered).

>

> What part of " harmful, dangerous and inappropriate " don't people

understand?

>

> If I was all sweetness and light and you went off and did

something to your kid that I

> " suggested you might consider not doing, " and your kid got

horribly worse and you

> couldn't do anything about it, wouldn't you be upset I hadn't been

a bit more forceful and

> convinced you not to do it in the first place?

>

> I do want to convince people not to hurt their poor unfortunate

kids any more!

>

> Andy

>

June 9, 2008

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

From:

My question is - what does it take for people to understand why ALA

must be dosed at 3 h intervals?

===>Just some explanation of a general understanding of why people say they

don't understand something/anything.

A lot of people do " get it " but some use the incorrect phrasing of " I don't

understand " when they don't want to understand or don't want to do something.

This is useful for buying time to rationalize why you can't do whatever it is

that is necessary.

I see this in my practice all the time as I ask parents' to do MUCH, MUCH

harder things than getting up for a few nights like keeping their kid away from

their nonparental love partners.

Some think the rules don't apply to them and some are stuck in feeling as if

they were invinceable or the idea that nothing bad will happen when they don't

follow the rules or do what is optimal.

J

June 9, 2008

Andy if I ever met you in real life I think I would burst into tears and

give you such a big hug.

We rearranged our entire lives around the 3 or 4 hour schedules, having

multiple people manning phones with multiple cellphone alarms set, with

backup plans A through G to make sure he took the doses on time. If I was

not home and could not get ahold of someone at home to give him his dose, I

immediately turned around and headed home to dose him myself. This happened

so many times I can't even count. Even when I pre planned to have two

people home by the phone (my mom or my son's siblings).

Plus when my son's sleep schedule was off and he was awake nights and slept

days, I dosed him his supplements every four hours at night!!!! Then, he

eventually six months into chelation could take his pills himself. Towards

the end, he could spend the weekend at a friends and chelate himself and set

alarms and be responsible for his own doses. On top of that, when he got

better and was awake days instead of nights, my son needed an extra dose of

oregano for yeast and the only time to give it was in the middle of the

night since it needed to be away from supplements and he took so many. So I

woke up in the middle of the night every night during the last 3 months or

so to wake him so that he took that.

3 Words..SO WORTH IT!!!!!!!!

So Worth it

When I see my son right now that is all I can say to encourage you new

parents to stick around. It is like birthing a new baby, and parenting a

newborn, and we all know that takes being up nights, and really.it's a small

price to pay for wellness. A new brain is forming, think of it that way.

Chelation is a beautiful dance, and the chelator claws out the toxins, and

every three or four hours depending on what you are taking, the chelator

needs to change dance partners, that is when you give another. Each new

dose of chelator claws onto those heavy metals and gracefully dances the

toxins out of the body, and this dance takes place with new partners every

three/four hours over three days. To miss a dose is to miss the dance

partner and drop the mercury and heavy metals (what we call displacement)

and stop that dance from happening. That was an analogy from Andy that

helped me understand how it works. I don't want to just move mercury all

around and displace it, I want to escort it out of the building. It helped

me to think of it that way when I was up at night.

June 9, 2008

My son would not let me take video of him so in every one I took anyway, he

is just shouting and flipping me off, which wouldn't go over well at a

conference " hey look at my son's improvements " LOL!!! Can you imagine? So I

don't have any before videos that are very good, but I did take some

pictures and they are under Bestbirths child #1 in the files. He still

doesn't like pictures taken, but he looks even better now than in those

pics. His gramma is paying him $50 to get a photo professionally done in

his suit as a graduation gift. I will post that as soon as I get it.

June 9, 2008

Hey maybe you'd be snappish too if you'd been up every four hours at night.

Giggle. Maybe that's why this group is more snippy. Sleep deprovation!!!!

June 9, 2008

I've been reading a lot of the posts on the debate over the frequent dose

chelation, and I just wanted to put my two cents in. Once you make up your

mind that frequent dosing is the safest and most effective way to get your

child

better, it really isn't that big of a deal. I mean most of us were up

during the night when our kids were newborns. At least this is just on the

weekends or every other weekend. Also, I just have a schedule of 3:00, 6:00,

9:00,

12:00...etc. so it's easy to remember. I have a little cooler by my bed

with his ALA and some apple sauce and set my alarm to wake up. I give my son a

spoonful of applesauce with the pill in it and he barely opens his eyes to

take it and rolls back over and falls back to sleep. The whole process takes

about 2 minutes and I'm back in bed.

I, of course, wish I didn't have to do this. It can be a little annoying,

but like Andy said...most of us would cut our right arms off if it would get

our kids recovered. Since I'm the one who took my child to the doctor and

stood by while he was pumped with mercury and various other

toxins...unknowingly

of course...I think the least I can do is sacrifice a couple of nights of

unbroken sleep if there's even a possibility of getting my son better.

If the debate is over what's safer, the frequent or less frequent dosage,

that's one thing. But if the hesitation is just about getting up during the

night, I just want to say once you've been doing it awhile, it becomes routine

like everything else and really isn't a big deal.

Carla

In a message dated 6/9/2008 2:13:02 P.M. Pacific Daylight Time,

anneecbrynn@... writes: