Re: ? - every other night DMSA supps/ALA

[Guest guest]

Your posts actually sound very passive-aggressive to me, very

defensive with mild bits of agreement, lots of hinted sarcasm, and the

ubiquitous, extremely insulting " Um... " at the beginning of

paragraphs, or " Interesting... " or you tell us that someone's response

amuses you. Then you insinuate that ought to be doing some

version of what you imagine her job ought to be on this list. And then

finally the huffy post in response to Andy, where you say that you're

offering to fix his problem (that he was soliciting suggestions for),

you know what to do, if only everyone would only listen to *you*. Did

you read the post where Andy said he's spent time trying to respond

very nicely to people and that he found it was no more successful than

being 'bombastic'?

I think that you've demonstrated **exactly** the behavior that you're

arguing so vehemently against.

You claim you want to help, and in doing so, you're basically arguing

that everyone else's way of doing things are wrong, and that yours is

right. YOU know how people are, what they need (even if they don't

know), and the best way to meet those needs, and everyone else is

being counterproductive. When your suggestion are not met with

interest or enthusiasm, or someone disagrees, you get very upset and

start to say that you're just giving the information that was asked

for. That's what you're saying happened in response to the original

poster, and that's what's just happened with you.

I think there are lots of people here who DO want to help others, but

maybe they don't want to do it your way for any number of very good

reasons. Andy says he has tried that way and that it was not

effective. Some of us may think that the best way to deal with people

who engaging in childish magical thinking about their doctor is to

model adult behaviour, which includes things you claim to value, like

reasoning and logic, and the assumption that adults can manage their

emotions and find ways to ask for what they need without everyone else

needing to make their feelings the center of attention. You might have

a need to take care of the emotional well-being of the newbies on your

lists, and that's fine with me, but I am tired of hearing how we ought

to share your values and your needs, and need to approach people in a

way that you think is helpful.

You're doing exactly what you're criticising others for.

> Well, as a hopelessly " helpful " person,

> I am not up to rereading all the posts right now. My observations

> are intended to be helpful, not intended to attack you or anyone

> else. But I find it odd that a therapist by trade seems to not

> realize that if several person criticize one individual publically

> who has no one on their side, especially if they don't really know

> these people, it comes across like a polite little lynch mob.

>

> People are so busy

> trying to make sure they are respected and heard and validated and

> have a spot in the social setting they are in

>that they may just not know what they really need, what

>really helps, what a good paradigm is for addressing their issues

>and so on.

>It also avoids the social trap of damning

> > people for not doing things your way. Speaking in highly

> judgmental

> > and condemning tones of anyone who doesn't do it your way

>Since my only hope is

> to suggest a more effective means for addressing an issue that you

> and others have expressed frustration with, I see no point in

> getting into what is likely to end up as a " pissing contest " , no

> matter what the intent might be (cuz, hey, the road to hell is paved

> with good intentions. good intentions are far from " enough " to

> avoid the path to hell, so speak.)

>

> > Your current behavior on list looks remarkably like what is getting

criticized and atributed by you and others to " only wanting

validation " and so forth: You asked for help and are now basically

defending and justifying your current course of action, essentially

dismissing my suggestions.

I do not believe you are simply closed-minded and looking for

validation for a pre-determined course of action from which you

refuse to be swayed. I believe you very much want a better approach

to this problem. Perhaps the reasons you are reacting this way

will shed some light for you on why other people may be reacting

this way to you.

[Guest guest]

>

> Thank you, Dana. I think we will work on the viral thing. Is there

> any point where you would stop because of bad yeast?

Once you start anti-virals, don't stop unless you think you no longer

need to give it. I stopped 2x, and both times the viruses just

increased again, and went back into his brain. I did have to stop

when the viruses were gone tho.

If the yeast gets too bad, you can reduce the anti-virals, but I don't

recommend you stop.

>> My son's never

> had it so bad as he did with this past round. I went out and bought

> Candex and some new probiotics. How much GSE did you give when there

> was a bad flare up and how often?

During the nasty part of anti-virals, I gave 20mg biotin and 4 tablets

of GSE with every dose of anti-viral.

Dana

[Guest guest]

>>Are there that many of doing this on your own?

I recovered my kids without a doctor.

>>How do you find solid research?

I asked questions, used google, and several other things.

>>Where do you find information to check up on effects of supplements?

Asking questions, doing research, etc. I posted much of what I found

useful here. I need to do a site update tho

http://www.danasview.net/parent3.htm#supplements

Dana

[Guest guest]

> I am not talking about " calm, logical reasoning " . Nor do I think

> anyone believes I am " nice " (those folks who make the mistake of

> thinking I am nice inevitably end up loathing me for letting them

> down in a big way).

I am also not generally known for being " nice " . I am an attorney,

after all =)

>>I am dreadfully bad at giving

> condolences, being a shoulder to cry on and so on because I think

> being " emotionally supportive " is an utter waste of time and almost

> always counterproductive.

In the past, I would try to put more " personality " and emotion in my

messages, but all that accomplished was for people to post flames,

publicly and privately, about something I wrote. I don't do well

expressing emotion, apparently, so for the past several years, most of

my messages are written with the tone of someone reporting pork

futures on the 6pm news. No emotion, no empathy, but also no flames.

This suits me better, since I dislike being misunderstood.

I do occasionally receive emails from people asking me if I have a

personality LOL

For those interested, I do have somewhat of a personality, and

sometimes a message will provoke a strong emotion out of me. But I

try not to let it show when I type a reply. This style has been very

effective for me for many years now, so I don't plan to change it.

> The truth is I get plenty of criticism on this list because I

> chelated in a manner that one is " not supposed " to pursue. I did so

> successfully and I have no reason at all to believe that it harmed

> me as so many people here have tried to suggest it must have done.

> The view that, in essence, Andy Cutler's protocol is the ONLY

> acceptable, safe method is so entrenched that it's enormously

> difficult to discuss anything here in a calm, logical fashion which

> doesn't agree with that mantra.

I chelated my kids with a non-Andy approach also, and it worked

enormously well, without having to wake up every 3-4 hours. I have no

problem mentioning it here, in public, any time I think it is appropriate.

Generally, I post my own research, experience, and occasionally my

opinion. I don't really care much about what others might think. If

something worked for me and my family, then I believe it is worth

stating. I also don't believe " one way is the only way " . There are

several different options for most interventions. Finding the one

that works for a specific child and family is usually the hard part.

Dana

[Guest guest]

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

From: danasview

I chelated my kids with a non-Andy approach also, and it worked

enormously well, without having to wake up every 3-4 hours. I have no

problem mentioning it here, in public, any time I think it is appropriate.

====>I'm truly glad this way worked well for you. In the interest of all of

the other kids the most severe, long lasting regression I ever heard of was from

a woman who gave moderate doses of Ala every 8 hours to her son on the advice of

a well known Dan!

These messages were posted on another list with the heading of the post " Thank

you Dr. X " where others were extolling the virture of this dr who had come up

with the latest high tech fad.

When all of a sudden this woman changed the post to " Thank you Dr. X, I think

NOT " . She related how she had initially been thrilled with her son's progress

on the 8 hour Ala protocol, that he had increased language and response for 2

months.

And then, all of a sudden he could no longer speak and had to be put back in a

diaper. At the time she posted it was an entire YEAR since his regression and

despite some valiant efforts he had never recovered. I wish I could say that

this was the only case of regression I ever heard of...but it wasn't, there have

been many...and they shake me up every single time.

Where once she had been anticipating recovery she was now contemplating long

term care for her child when she and her dh were no longer able to care for him.

Perhaps I'm too sensitive...afterall these are not my children...I don't even

know these people but this is a real live human being, someone's child and I

often wonder.....Is there some kind of emotional disconnect between what people

hear happens to someone else's child and what could possibly happen to their

child?

So, conceeding that the 8 hour protocol might work for some kids isn't it also

appropriate to mention that others have not been so lucky?

[Guest guest]

" I don't do well expressing emotion, apparently, so for the past

several years, most of my messages are written with the tone of

someone reporting pork futures on the 6pm news. No emotion, no

empathy, but also no flames. This suits me better, since I dislike

being misunderstood. "

LOL, Dana...this seems to run in the " autism family " . That's why the

best jobs for us are those that don't require emotion: attorney, tax

preparer, accounting, researcher, instructor. P.S. I was a paralegal

before being a stay-at-home mom, always knew I was a black and white

kind of gal, a concrete thinker.

, do you really think being emotionally supportive is a waste

of time?

" I am dreadfully bad at giving condolences, being a shoulder to cry

on and so on because I think being " emotionally supportive " is an

utter waste of time and almost always counterproductive. "

I just took a class on " Emotional Literacy " , apparently empathy

doesn't come natural for a lot of us, but practicing it can really

help build better relationships. For example, I make most the

decisions for our family and wasn't really aware of this before I

thought about it. When we moved to Washington a month ago, my

husband and I wanted to find a rental for less than $1100. Well, the

homes going for $1100 and less were small or just not that great, so

I decided to put the ball in my husband's court and let him decide.

He picked this big home for $1250, even though I thought the price

was too much, I kept my mouth shut because I realized that as the

bread-winner for our family, it made him feel good to " provide " us a

very nice place to live.

Being emotionally supportive sometimes means sacrifice. Trust me,

empathy doesn't come easy for me either, but I'm going to consciously

try to empathyze with others because I know how important it is.

It's also important to note that our ASD (especially the Aspergers)

kids need to be taught empathy because it usually is not something

they think about.

> > I am not talking about " calm, logical reasoning " . Nor do I think

> > anyone believes I am " nice " (those folks who make the mistake of

> > thinking I am nice inevitably end up loathing me for letting them

> > down in a big way).

>

>

> I am also not generally known for being " nice " . I am an attorney,

> after all =)

>

>

> >>I am dreadfully bad at giving

> > condolences, being a shoulder to cry on and so on because I think

> > being " emotionally supportive " is an utter waste of time and

almost

> > always counterproductive.

>

>

> In the past, I would try to put more " personality " and emotion in my

> messages, but all that accomplished was for people to post flames,

> publicly and privately, about something I wrote. I don't do well

> expressing emotion, apparently, so for the past several years, most

of

> my messages are written with the tone of someone reporting pork

> futures on the 6pm news. No emotion, no empathy, but also no

flames.

> This suits me better, since I dislike being misunderstood.

>

> I do occasionally receive emails from people asking me if I have a

> personality LOL

>

> For those interested, I do have somewhat of a personality, and

> sometimes a message will provoke a strong emotion out of me. But I

> try not to let it show when I type a reply. This style has been very

> effective for me for many years now, so I don't plan to change it.

>

>

> > The truth is I get plenty of criticism on this list because I

> > chelated in a manner that one is " not supposed " to pursue. I did

so

> > successfully and I have no reason at all to believe that it

harmed

> > me as so many people here have tried to suggest it must have

done.

> > The view that, in essence, Andy Cutler's protocol is the ONLY

> > acceptable, safe method is so entrenched that it's enormously

> > difficult to discuss anything here in a calm, logical fashion

which

> > doesn't agree with that mantra.

>

>

> I chelated my kids with a non-Andy approach also, and it worked

> enormously well, without having to wake up every 3-4 hours. I have

no

> problem mentioning it here, in public, any time I think it is

appropriate.

>

> Generally, I post my own research, experience, and occasionally my

> opinion. I don't really care much about what others might think.

If

> something worked for me and my family, then I believe it is worth

> stating. I also don't believe " one way is the only way " . There are

> several different options for most interventions. Finding the one

> that works for a specific child and family is usually the hard part.

>

> Dana

>

[Guest guest]

It could also be that they don't make as much money from oral DMSA that we can

buy off of the internet.

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[Guest guest]

And then, all of a sudden he could no longer speak and had to be put back in a

diaper. At the time she posted it was an entire YEAR since his regression and

despite some valiant efforts he had never recovered. I wish I could say that

this was the only case of regression I ever heard of...but it wasn't, there have

been many...and they shake me up every single time.

-- What kind of regressions have happened on the AC protocol (ahhh this stuff

scares me so much!) What causes huge regressions like that?

_________________________________________________________________

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rive_062008

[Guest guest]

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

From: campbell

And then, all of a sudden he could no longer speak and had to be put back in a

diaper. At the time she posted it was an entire YEAR since his regression and

despite some valiant efforts he had never recovered. I wish I could say that

this was the only case of regression I ever heard of...but it wasn't, there have

been many...and they shake me up every single time.

-- What kind of regressions have happened on the AC protocol (ahhh this stuff

scares me so much!) What causes huge regressions like that?

====>I asked this ? a LOT before we started and I was also frightened about

the prospect of regression. I think it's pretty crazy not to be concerned. I

purposely set out to collect regression stories from reports on the web,

regardless of the protocol used.

In the above example since testing was done to rule out yeast, seizures, gut

bugs, etc. the regression was caused by the 8 hour protocol as I have read of

many, many cases of regression when the chelators were not given frequently

enough. Adults also report, very articulately, what has happened to them, how

much worse they got when they did NOT take the half-life of the chelator into

account when dosing.

I have said this before but I took 9 months before we started perusing the

boards and noting what protocols people were using and what they were reporting.

I used this board, another high-post board, several lower post boards and an

adult board. I had no horse in this race and was actually pulling for the 8 hour

protocol as I didn't want to get up at night.

I did find, without a doubt in my mind, that the 8 hour protocol was tolerated

well by some...but for others it was disastrous and caused regression in quite a

few kids. And the scary part is that the regressions caused by the 8 hour

protocol were sometimes not evident until several months to half a year into

chelation.

By comparison, I collected only 3 reports of regression on the 3/4 hour

protocol. I have since known another. Nothing is 100% and I keep that in mind

with every single round we do. I simply became more afraid to keep the metals

in then I did of that 2%.

The key, to me, is to do things as safely as possible, with a mind toward

keeping the risk down as much as possible.

__________________________________________________________

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rive_062008

[Guest guest]

>

>

> , do you really think being emotionally supportive is a

waste

> of time?

>

> " I am dreadfully bad at giving condolences, being a shoulder to cry

> on and so on because I think being " emotionally supportive " is an

> utter waste of time and almost always counterproductive. "

>

>

I've already posted an attempt to clarify what I meant by that.

Perhaps you haven't seen that one yet.

[Guest guest]

> > I am not talking about " calm, logical reasoning " . Nor do I

think

> > anyone believes I am " nice " (those folks who make the mistake of

> > thinking I am nice inevitably end up loathing me for letting

them

> > down in a big way).

>

>

> I am also not generally known for being " nice " . I am an attorney,

> after all =)

>

>

> >>I am dreadfully bad at giving

> > condolences, being a shoulder to cry on and so on because I

think

> > being " emotionally supportive " is an utter waste of time and

almost

> > always counterproductive.

>

>

> In the past, I would try to put more " personality " and emotion in

my

> messages, but all that accomplished was for people to post flames,

> publicly and privately, about something I wrote. I don't do well

> expressing emotion, apparently, so for the past several years,

most of

> my messages are written with the tone of someone reporting pork

> futures on the 6pm news. No emotion, no empathy, but also no

flames.

> This suits me better, since I dislike being misunderstood.

I am innately warm and caring and tend to reach out to people. It

has gotten me lots of strong positive reactions on email lists,

usually followed by serious problems at some point. If a lot of

people like me and think we are friends when I barely know them, the

minute I say something people disagree with or some such, I'm going

to get a lot of flack over it. So I have worked at toning things

down on lists and trying to avoid the popularity game. I have also

concluded that when very influential people are liked or popular, it

promotes list politics: people line up to either agree or disagree

with that person just because they spoke, or if someone disagrees

with the well-liked person they will have 50 people mad at them,

etc. I like the style of your posts and try to do something

similar, but likely can't do what you do. I miss being able to be

warmer on lists but the price was too high. I don't get flamed

nearly as much as I once did either and that's one of my goals.

Michele

[Guest guest]

Hi guys,

I repect that we all have different feelings and personalities and such, but

there's a new member on this board (See message " New Member " ) who clearly needs

some help. I know you guys have experience and could really help her out. I'm

not trying to butt in....just wanted to make sure another mom gets the benefit

of your experiences and ideas.

Michele <talithamichele@...> wrote:

> > I am not talking about " calm, logical reasoning " . Nor do I

think

> > anyone believes I am " nice " (those folks who make the mistake of

> > thinking I am nice inevitably end up loathing me for letting

them

> > down in a big way).

>

>

> I am also not generally known for being " nice " . I am an attorney,

> after all =)

>

>

> >>I am dreadfully bad at giving

> > condolences, being a shoulder to cry on and so on because I

think

> > being " emotionally supportive " is an utter waste of time and

almost

> > always counterproductive.

>

>

> In the past, I would try to put more " personality " and emotion in

my

> messages, but all that accomplished was for people to post flames,

> publicly and privately, about something I wrote. I don't do well

> expressing emotion, apparently, so for the past several years,

most of

> my messages are written with the tone of someone reporting pork

> futures on the 6pm news. No emotion, no empathy, but also no

flames.

> This suits me better, since I dislike being misunderstood.

I am innately warm and caring and tend to reach out to people. It

has gotten me lots of strong positive reactions on email lists,

usually followed by serious problems at some point. If a lot of

people like me and think we are friends when I barely know them, the

minute I say something people disagree with or some such, I'm going

to get a lot of flack over it. So I have worked at toning things

down on lists and trying to avoid the popularity game. I have also

concluded that when very influential people are liked or popular, it

promotes list politics: people line up to either agree or disagree

with that person just because they spoke, or if someone disagrees

with the well-liked person they will have 50 people mad at them,

etc. I like the style of your posts and try to do something

similar, but likely can't do what you do. I miss being able to be

warmer on lists but the price was too high. I don't get flamed

nearly as much as I once did either and that's one of my goals.

Michele

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

=======================================================

[Guest guest]

I have to say, that I used this same strategy when making our

decision. IT seemed so big (the decision), yet so contentious (the

varying advice). Very confusing!

But, I went with the protocol that had the least negative results

reported. And, we've not had ANY bad stuff in our 2 years of

chelation. So, for me that's proof in my pudding.

HTH,

Ruth

On Jun 3, 2008, at 12:52 PM, wrote:

>

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

> From: campbell

>

> And then, all of a sudden he could no longer speak and had to be

> put back in a diaper. At the time she posted it was an entire YEAR

> since his regression and despite some valiant efforts he had never

> recovered. I wish I could say that this was the only case of

> regression I ever heard of...but it wasn't, there have been

> many...and they shake me up every single time.

>

> -- What kind of regressions have happened on the AC protocol (ahhh

> this stuff scares me so much!) What causes huge regressions like that?

>

> ====>I asked this ? a LOT before we started and I was also

> frightened about the prospect of regression. I think it's pretty

> crazy not to be concerned. I purposely set out to collect

> regression stories from reports on the web, regardless of the

> protocol used.

>

> In the above example since testing was done to rule out yeast,

> seizures, gut bugs, etc. the regression was caused by the 8 hour

> protocol as I have read of many, many cases of regression when the

> chelators were not given frequently enough. Adults also report,

> very articulately, what has happened to them, how much worse they

> got when they did NOT take the half-life of the chelator into

> account when dosing.

>

> I have said this before but I took 9 months before we started

> perusing the boards and noting what protocols people were using and

> what they were reporting. I used this board, another high-post

> board, several lower post boards and an adult board. I had no horse

> in this race and was actually pulling for the 8 hour protocol as I

> didn't want to get up at night.

>

> I did find, without a doubt in my mind, that the 8 hour protocol

> was tolerated well by some...but for others it was disastrous and

> caused regression in quite a few kids. And the scary part is that

> the regressions caused by the 8 hour protocol were sometimes not

> evident until several months to half a year into chelation.

>

> By comparison, I collected only 3 reports of regression on the 3/4

> hour protocol. I have since known another. Nothing is 100% and I

> keep that in mind with every single round we do. I simply became

> more afraid to keep the metals in then I did of that 2%.

>

> The key, to me, is to do things as safely as possible, with a mind

> toward keeping the risk down as much as possible.

>

>

> __________________________________________________________

> Enjoy 5 GB of free, password-protected online storage.

> http://www.windowslive.com/skydrive/overview.html?

> ocid=TXT_TAGLM_WL_Refresh_skydrive_062008

>

>

[Guest guest]

>

> Hi guys,

>

> I repect that we all have different feelings and personalities and

such, but there's a new member on this board (See message " New

Member " ) who clearly needs some help. I know you guys have experience

and could really help her out. I'm not trying to butt in....just

wanted to make sure another mom gets the benefit of your experiences

and ideas.

>

>

I don't happen to have experience with what she is asking about. I try

to keep my mouth shut under shut circumstance. Spouting off about

things I know nothing about is a good way to give really bad advice.

[Guest guest]

>>By comparison, I collected only 3 reports of regression on the 3/4 hour

protocol. I have since known another. Nothing is 100% and I keep that in mind

with every single round we do.

>>

Add me to the list. fabulous gains on the ¾ hours dosing only to regress after 2

years.

Do I attribute this to the dosing ..not really. And I think Andy is, and always

has been pleasant to me :-)

I know success on both sides of the fence as well as regressions on both sides

I make it my business to talk to parents who have recovered their children to

learn more as mine is not recovered but many times has come so close it kills me

Could be the gut , too many diet slips , not enough probiotic /enzymes etc,

lord knows I was giving 10x the amount of probiotics . So many things to keep an

eye on. Is it viral? Metals? Lyme? Bacteria? All of the above?

The parent who mentioned the chart was a genius :-)

Do the best that you can with what you learn and keep asking for help

Take all the advice into consideration when making a decision for your

child/children

This is all so hard... for so many of us

good luck and prayers

[Guest guest]

> >

> > ....I, too, think Andy can be harsh, but I'm not here to give

> lessons on manners or critique the delivery of someone's advice.

>

> We can have a healthy debate about things w/o there needing to be

> suggestions of blatant condescension, right??

>

> I think that it's a given here that everyone's darn glad that Andy

> figured out so much and has been so tremendously generous in sharing

> what he knows.

Thank you.

> Your kid and mine stand a much better chance at a

> better (even normal??) life because of it.

I certainly hope that turns out to be true!

> Personally, in all

> honesty, I can't think of anything more valuable in this world right now.

>

> Furthermore, esp. since I naturally have a similar style as Andy's (or

> even more pronounced), I think I understand/appreciate it, and believe

> that I see the good intented affect.

>

> Permit me to share something that I found interesting...

>

> One of the ways I vetted Andy's arguments (on challenge tests,

> chelator selection and dosing/frequency, etc) in my mind was by

> carefully presenting them to DAN! doctors, as non-threateningly as I

> could, in order to hear their counterpoints. [One of those doctors

> was a name you'd likely know.]

>

> To my considerable surprise, despite trying repeatedly, I haven't

> heard almost any pushback on the substance of those arguments. As

> mentioned, what came back instead seemed to be more of an affront at

> the style. " He hates DAN!s. " " He hates all doctors. " [You can argue

> perhaps that was a logical trap being set for me to draw leverage, but

> I didn't take it as such, and didn't follow it regardless.]

>

> This floored me. Wouldn't any good doctor/scientist focus on the core

> of the argument and not any nuances in the delivery??

Indeed so.

This is one reason I really do have an extremely negative view of the medical

profession.

Even engineers can control themselves and try to understand the substance of a

critique.

By the very nature of dealing with sick people doctors ought to have a lot of

relevant

professional skills for this, but they don't seem to be used here.

I chalk a lot of it up to medicine truly being a liberal art, where the doctors

don't really

believe the technical stuff is important. This is less their fault as

individuals than the fault

of 'the system' of medical school admissions, classes, and residency training.

> Can't any DAN!

> defend their position, or is there just not enough there to go on?

They actuallly don't have a leg to stand on.

This is one of the reasons that they're so emotional and aggressive/reactive

about it.

Most of the problem is, having gone to medical school and thus knowing nothing

relevant

and being conditiioned to think about things wrong they can't justify the things

they do

that clearly DO work, and that they see work every day, even though those things

are

easily justified by any educated person who puts some thought into it. So

they're very

defensive, trapped between a truth they live - they really CAN help these poor

sick kids -

and the pejorative harassment of their mainstream brethren.

> [Now *THAT'S* scary...]

Indeed. And it also makes it extremely difficult for me to help doctors get

their act

together and do the right thing - they mostly are not able to understand my

arguments

and apply them in practice. They're trapped in a lot of dogma I don't know how

to cut

through.

> Next comes the thought.... Would DAN! come back a bit, and

> acknowledge/suggest Cutler chelation more if not threatened?

No, this isn't even theoretically possible.

The problem is human nature and the history of what happened.

DAN! convened a panel of pseudoexperts who had no relevant knowledge of

chelation but

great self proclaimed expertise and changed the protocol from the one I taught

Amy

Holmes MD that was working to one that was dangerous, harmful and guaranteed to

hurt

a lot of children.

I pointed this out in an attempt to reduce the number of children who would not

recover

from autism due to inappropriate and harmful treatment.

Of course then most DAN! doctors flipped over to chelating wrong and hurt a lot

of kids.

In a bureaucratic sense due to the basest parts of human nature DAN!'s

collective

emotional reasponse will be that it must all be MY fault. They'll never be able

to change

this, let it go, or do anything I say. Bureaucracies never admit error, and

always stonewall

infinitely - a recent example is what is happening in Texas with CPS and the

Fundamentalist Mormons.

> That may be a crazy thought, but it would help a lot more kids if true.

It is a nice thought and hopefully DAN! will evolve to include some people whose

intellect

and integrity let them look into the question of how to chelate properly and

take a correct

position on it.

Personally I do not expect this to happen. However if it were to, I would be

ecstatic and

would be very happy to help them in any way they desired.

> [it's also very clear and understood that given the spotty practices

> that go on, not speaking out loudly against them also has a

> non-trivial cost... That's a harder one to weigh.]

True. However I think in the long run, and probably in the short run too,

honesty is the

best policy. I am telling the truth about chelation as best I know it. I don't

think soft

pedalling that is going to help anyone.

> I trust Andy to have a thick enough skin to consider this for whatever

> it's worth to him. [No one benefits from only hearing good data

> points and good experiences. If he thinks I'm full of hooey, that's

> fine (and that wouldn't be the first time that that was right in

> part/whole ;^) ).]

>

> Just my $0.02, from my limited view.

This is a reasonable analysis.

Still doesn't tell me how to do anything diffferent when parents come on list

and want to

hurt their kid by following bad orders from some doctor, though. The bombastic

approach seems to be what works.

Andy

[Guest guest]

> So, conceeding that the 8 hour protocol might work for some kids

isn't it also appropriate to mention that others have not been so lucky?

What about the approx 3-4 people per month, who send me private email

about their child who did not do well with frequent dose chelation? I

am currently working with two right now, altho usually it is just one

at a time.

These people do not want to post here because options other than

frequent dose won't be considered. The two that I am assisting right

now, have both done 3x per day ALA with good results, after a few

months of frequent dose with major problems.

I always recommend watching carefully for problems with 3x per day,

but any problems that arise, we have been able to diagnose and

address. This does not mean that there might come a time in the

future that I can't figure out how to address a problem that arises,

but so far things have gone well for the people who have contacted me.

These people would benefit from the collective wisdom of this list,

but do not believe it would be productive, and in fact sometimes they

believe it would be counterproductive, to post here. So they are

" stuck " with what I can offer.

Then there are the people, like myself, who never tried frequent dose

and just started with 3x per day and it worked well, without problems.

Sometimes, even if the science/chemistry indicates that something is

" best " , an individual person will need something different. ANY

protocol can work well for some kids and not for others. Each child

is different. The trick is finding what works for YOUR child.

Dana

[Guest guest]

>>I like the style of your posts and try to do something

> similar, but likely can't do what you do.

It took me over a year of active practice, plus consultation with

others, before I developed this style. There was a time that I had an

e-friend on IM for the entire time I posted messages, to ask " how does

this sound " .

It was a LOT of work, but eventually I found what worked for me.

Dana

[Guest guest]

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

From: danasview

> So, conceeding that the 8 hour protocol might work for some kids

isn't it also appropriate to mention that others have not been so lucky?

What about the approx 3-4 people per month, who send me private email

about their child who did not do well with frequent dose chelation? I

am currently working with two right now, altho usually it is just one

at a time.

====>So if I am hearing you correctly now you are saying that in addition to

dose timing not making a difference that these kids do better with 8 hour dosing

than the 3/4 hour dosing. I've always known you to be truthful so I'm not

doubting your word, but this is confusing and almost defies logic.

What I hear (mostly) from the parents of 8 hours is that 8 hours is best for

the parent and then there is that dynamic that some parents have that if

something is better for them, they MAKE IT better for their child, not because

it is better but because the parents want it to be. Sorry, child/family

therapist suspicion here because the 8 hour protocol is much easier I would

imagine, although I would need Valium to get through it.====>

These people would benefit from the collective wisdom of this list,

but do not believe it would be productive, and in fact sometimes they

believe it would be counterproductive, to post here. So they are

" stuck " with what I can offer.

====>Sorry, no sympathy here, at all. Everyone has a backbone and people need

therapy or self-work to be less concerned with what people think, this is their

problem, not the list. Noone has ever died from expressing their experiences on

the internet that I know of.

Where's their concern for other children who might benefit from their

experience?

And for the record being strong and not worrying about others' did not come

naturally to me, I am the opposite of Asperger's, everything anybody said

bothered me. I had to work hard to get this so I understand the struggle.

[Guest guest]

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

From: danasview

What about the approx 3-4 people per month, who send me private email

about their child who did not do well with frequent dose chelation? I

am currently working with two right now, altho usually it is just one

at a time.

====>You should start a group, if you're getting 3 or 4 a month for even the

last two or three years this adds up to 100's of people, nothing to make people

sit up and notice like numbers.

And it doesn't take some people a very long time to get on line with this

stuff and start helping one another.

These people do not want to post here because options other than

frequent dose won't be considered. The two that I am assisting right

now, have both done 3x per day ALA with good results, after a few

months of frequent dose with major problems.

I always recommend watching carefully for problems with 3x per day,

but any problems that arise, we have been able to diagnose and

address. This does not mean that there might come a time in the

future that I can't figure out how to address a problem that arises,

but so far things have gone well for the people who have contacted me.

These people would benefit from the collective wisdom of this list,

but do not believe it would be productive, and in fact sometimes they

believe it would be counterproductive, to post here. So they are

" stuck " with what I can offer.

Then there are the people, like myself, who never tried frequent dose

and just started with 3x per day and it worked well, without problems.

Sometimes, even if the science/chemistry indicates that something is

" best " , an individual person will need something different. ANY

protocol can work well for some kids and not for others. Each child

is different. The trick is finding what works for YOUR child.

Dana

[Guest guest]

Do you feel it was the chelation that caused the regression? Do you feel like it

can be reversed? How much of a regression was there?

This is the hardest choice! It would be easier if you were deciding to take the

risk, but instead you are deciding for your child.

@...: aprokofiew@...: Tue,

3 Jun 2008 15:52:38 -0400Subject: [ ] Re: ? - every other night

DMSA supps/ALA

>>By comparison, I collected only 3 reports of regression on the 3/4 hour

protocol. I have since known another. Nothing is 100% and I keep that in mind

with every single round we do.>> Add me to the list. fabulous gains on the ¾

hours dosing only to regress after 2 years.Do I attribute this to the dosing

...not really. And I think Andy is, and always has been pleasant to me :-) I know

success on both sides of the fence as well as regressions on both sides I make

it my business to talk to parents who have recovered their children to learn

more as mine is not recovered but many times has come so close it kills meCould

be the gut , too many diet slips , not enough probiotic /enzymes etc, lord knows

I was giving 10x the amount of probiotics . So many things to keep an eye on. Is

it viral? Metals? Lyme? Bacteria? All of the above?The parent who mentioned the

chart was a genius :-)Do the best that you can with what you learn and keep

asking for helpTake all the advice into consideration when making a decision for

your child/childrenThis is all so hard... for so many of usgood luck and

prayers

[Guest guest]

@...: dan-ruth-setlak@...: Tue,

3 Jun 2008 13:26:26 -0400Subject: Re: [ ] Re: ? - every other night

DMSA supps/ALA

****** That is good that everything is going well! I wish I could just do this

for my kiddo.

I have to say, that I used this same strategy when making our decision. IT

seemed so big (the decision), yet so contentious (the varying advice). Very

confusing!But, I went with the protocol that had the least negative results

reported. And, we've not had ANY bad stuff in our 2 years of chelation. So, for

me that's proof in my pudding.HTH,RuthOn Jun 3, 2008, at 12:52 PM,

wrote:>> ----- Original Message -----> From: campbell>> And then, all of

a sudden he could no longer speak and had to be > put back in a diaper. At the

time she posted it was an entire YEAR > since his regression and despite some

valiant efforts he had never > recovered. I wish I could say that this was the

only case of > regression I ever heard of...but it wasn't, there have been >

many...and they shake me up every single time.>> -- What kind of regressions

have happened on the AC protocol (ahhh > this stuff scares me so much!) What

causes huge regressions like that?>> ====>I asked this ? a LOT before we started

and I was also > frightened about the prospect of regression. I think it's

pretty > crazy not to be concerned. I purposely set out to collect > regression

stories from reports on the web, regardless of the > protocol used.>> In the

above example since testing was done to rule out yeast, > seizures, gut bugs,

etc. the regression was caused by the 8 hour > protocol as I have read of many,

many cases of regression when the > chelators were not given frequently enough.

Adults also report, > very articulately, what has happened to them, how much

worse they > got when they did NOT take the half-life of the chelator into >

account when dosing.>> I have said this before but I took 9 months before we

started > perusing the boards and noting what protocols people were using and >

what they were reporting. I used this board, another high-post > board, several

lower post boards and an adult board. I had no horse > in this race and was

actually pulling for the 8 hour protocol as I > didn't want to get up at

night.>> I did find, without a doubt in my mind, that the 8 hour protocol > was

tolerated well by some...but for others it was disastrous and > caused

regression in quite a few kids. And the scary part is that > the regressions

caused by the 8 hour protocol were sometimes not > evident until several months

to half a year into chelation.>> By comparison, I collected only 3 reports of

regression on the 3/4 > hour protocol. I have since known another. Nothing is

100% and I > keep that in mind with every single round we do. I simply became >

more afraid to keep the metals in then I did of that 2%.>> The key, to me, is to

do things as safely as possible, with a mind > toward keeping the risk down as

much as possible.>> >

__________________________________________________________> Enjoy 5 GB of free,

password-protected online storage.>

http://www.windowslive.com/skydrive/overview.html? >

ocid=TXT_TAGLM_WL_Refresh_skydrive_062008>> [Non-text portions of this message

have been removed]>>

[Guest guest]

Wow, will this conversation ever end!?! God, let it go!!

Also, when did this conversation turn into anti-Dana? She's helped

alot of people (me!) in this group and other groups. I'm not ashamed

to go to her outside of the group. I do it alot! (Thanks Dana!!) I do

have a backbone but I try to avoid bull crap like this! I have a

temper and rage issues, so I prefer to try and stay calm. It's not

all metals that causes my problems but a long line of tainted DNA! As

we prefer to call it " it's the in us! "

I've tried both protocols. I'm NOT lazy and WANT the 8 hour dosing. I

preferred the 3-4 hours but if my son has problems then I need to

find something better for HIM! The first 2 rounds went really good on

the AC protocol but after that my son started sleeping through the

night and he would NOT wake up. Also the yeast was terrible and

almost caused a seizure. With the 8 hour dosing, he did alot better

and we had less yeast problems. At the moment, I'm not sure how I'm

going to chelate him. Whatever I choose should NOT get me flamed when

asking questions in this group.

I've recommended this group to lots of people because it's full of

great info on everything! Not just chelation. Maybe Dana should start

her own group. I would definitely join it.

When I read your post, I'm thinking " Wow, what a hater! "

Amy

>

>

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

> From: danasview

>

>

> What about the approx 3-4 people per month, who send me private

email

> about their child who did not do well with frequent dose

chelation? I

> am currently working with two right now, altho usually it is just

one

> at a time.

>

> ====>You should start a group, if you're getting 3 or 4 a month

for even the last two or three years this adds up to 100's of people,

nothing to make people sit up and notice like numbers.

>

> And it doesn't take some people a very long time to get on line

with this stuff and start helping one another.

>

>

>

> These people do not want to post here because options other than

> frequent dose won't be considered. The two that I am assisting

right

> now, have both done 3x per day ALA with good results, after a few

> months of frequent dose with major problems.

>

> I always recommend watching carefully for problems with 3x per

day,

> but any problems that arise, we have been able to diagnose and

> address. This does not mean that there might come a time in the

> future that I can't figure out how to address a problem that

arises,

> but so far things have gone well for the people who have

contacted me.

>

> These people would benefit from the collective wisdom of this

list,

> but do not believe it would be productive, and in fact sometimes

they

> believe it would be counterproductive, to post here. So they are

> " stuck " with what I can offer.

>

> Then there are the people, like myself, who never tried frequent

dose

> and just started with 3x per day and it worked well, without

problems.

>

> Sometimes, even if the science/chemistry indicates that something

is

> " best " , an individual person will need something different. ANY

> protocol can work well for some kids and not for others. Each

child

> is different. The trick is finding what works for YOUR child.

>

> Dana

>

>

>

>

>

>

[Guest guest]

Posted by: " Amy " rnanjnc@... rnanjnc

Date: Wed Jun 4, 2008 2:59 pm ((PDT))

>Wow, will this conversation ever end!?! God, let it go!!

Excuse me? Would you say the same thing about the discussion about vaccines?

" Let it go " ? If the obviousness of thimerosal in vaccines being dangerous is

not being accepted and the discussion goes on forever, would you say " Let it

go " ? I think not. We are dealing here with issues of safety and efficacy,

with the potential for people to be hurt, and as with removing the thimerosal

from vaccines it is nearly a logical fallacy to claim that lower dosing at

smaller intervals is not safer.

I would hope that this conversation would not end.

>Also, when did this conversation turn into anti-Dana?

You have the same problem these MDs do. You can't separate out the issue from

the person. This is not personal, get it? It's about concrete issues. It's

not about you, Dana, or anyone else.

>She's helped alot of people (me!) in this group and other groups. I'm not

ashamed to go to her outside of the group. I do it alot! (Thanks Dana!!) I do

have a backbone but I try to avoid bull crap like this! I have a

temper and rage issues, so I prefer to try and stay calm.

Yes, I see. And you have trouble not taking things personally.

>It's not all metals that causes my problems but a long line of tainted DNA! As

we prefer to call it " it's the in us! "

>I've tried both protocols. I'm NOT lazy and WANT the 8 hour dosing. I

preferred the 3-4 hours but if my son has problems then I need to

find something better for HIM! The first 2 rounds went really good on

the AC protocol but after that my son started sleeping through the

night and he would NOT wake up. Also the yeast was terrible and

almost caused a seizure.

These are practical issues that you need to find a way around. You are not a

bad person because you haven't found a way around them yet. If you want help,

please ask. If you were asking me, the first thing I'd suggest is that DMPS

might be a way to go - it can be dosed at 8 hours and doesn't cause yeast

problems. I'm not saying I have an answer, I'm saying I'd make a suggestion or

two.

>With the 8 hour dosing, he did alot better and we had less yeast problems. At

the moment, I'm not sure how I'm going to chelate him. Whatever I choose should

NOT get me flamed when asking questions in this group.

>I've recommended this group to lots of people because it's full of

great info on everything! Not just chelation. Maybe Dana should start

her own group. I would definitely join it.

>When I read your post, I'm thinking " Wow, what a hater! "

I didn't read it that way at all.

>Amy

[Guest guest]

>> Add me to the list. fabulous gains on the ¾ hours dosing only to regress

after 2 years.

....

> > mine is not recovered but many times has come so close it kills me

Have you had seizures ruled out by a good EEG and good neurology interview -

which is

almost impossible to get as neurology is not one of the better fields for having

competent

doc's go into it.

An EEG where you get the interpretive report rather than rely on what the doc

says is a

very good idea if you didn't get one yet.

Andy