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Re: Less frequent dosing and internet troll behavior

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Thank you for sharing your thoughts. The dosage schedule is

obviously scientific with some, but little, room for adjustment -

this is particularly why (after months of research - while doing diet

trial-and-error), I have decided to do Andy's protocol with my

children.

Individual needs regarding supplements, behavior, and diet are much

more complex and usually call for some trial-and-error and close

observation. I've found both Andy's and Dana's (and others) input in

this area quite valuable.

As with anything, I research several sources before making decisions

on supplements, diet variations, and protocols. I encourage anyone

new here to do same. This is obviously an excellent place to share

experiences.

>

> Personally I see Dana's discussion of less frequent dosing being

better as troll behavior to

> just try to stir the pot and agitate everyone on the list. The

nature of the unsubstantiable

> allegations and clever sophistry really strikes me this way - this

is of course my personal

> opinion and other's views may differ.

>

> I realize we have disagreed for years and basically ignored each

other, I'll address some of

> the issues here and hope things calm down.

>

> Dana herself never tried frequent dosing. Her reasoning was she

couldn't get up at night.

> She has no idea how much better her children would be if she had

done things properly.

>

> I do. I've talked to innumerable people who have not only done it

both ways on one kid,

> but also who have done it one way on one and another way on another

of their children

> (most often starting with 8 hour dosing in kid #1, then switching

to 3-4 hour dosing and

> doing both kids).

>

> To the best of my knowledge the motivator for DAN! to change its

protocol to every 8

> hours was physician convenience. The doctors didn't really

understand why frequent

> dosing was possible, so when they told people to do it, they got

the same kind of

> response Dana gave - I can't get up at night. They then spent a

lot of time arguing.

>

> The doctors I have worked with closely have better bedside manner,

tell people to do it in

> a way where the people don't get emotionally reactive and

oppositional but rather just do

> it and find it is not a big deal.

>

> Of course when DAN! did this most parents who had been on frequent

dosing did report

> catastrophic worsening of their child, which slowly reversed when

they went back on 3-4

> hour dosing.

>

> Anyone who has been on the list as long as Dana has should recall

that there have been

> several cases where the people really did have children who did

better on 8 hour dosing

> and I did tell them I agreed with that in their particular case and

they should do it. There

> in fact are exceptions to the rule - just not very many. I'd

estimate about 1 in 1,000.

>

> If Dana really has all these people who are afraid to talk on this

list I would strongly

> encourage her to go start another list - and I'll be very

interested to see what transpires on

> it! Personally I just don't believe she gets that much contact

from people who have tried it

> both ways.

>

> Certain side effects are more common with frequent dosing - the

ones due to metal

> coming out of the brain. Certain long term consequences are

ubiquitous with 8 hour or

> other infrequent chelation - the ones due to metal concentrating

INTO the brain (where it

> is very hard to remove later).

>

> Do expect some exacerbation of symptoms during chelation and for a

day after it ends

> when doing it right. Adjust dose and supplements to keep these to

a reasonable level.

>

> Do be very familiar with figure 15 on page 52 of Amalgam Illness:

Diagnosis and

> Treatment (available at www.noamalgam.com ) as to what to expect

when. The time

> course of symptoms as chelation progresses is NOT simple or

obvious. Much confusion

> flows from people not realizing something they are seeing is due to

the body trying to

> clear the metals, not any particular chelation protocol.

>

> If people have real information about kids who tried chelation on

an every 8 hour or 3

> times a day or some other protocol AND frequent dosing and want to

discuss that I think it

> would be productive. Just playing troll to try to agitate the list

and make me spend a lot of

> time constantly re-explaining things I've patiently re-explained

for years on end now is

> neither productive nor particularly appreciated.

>

> The consequences of convincing people to do this wrong are their

kids will never get

> better and most likely will have psychiatric and neurological

syndromes as adults that

> disable them.

>

> Dana is a trial lawyer and a very smart woman. If she wants to

continue playing troll on

> this issue it is going to be very disruptive, time consuming, and

difficult to stop since she

> is good enough at argument to make it seem like she's doing

anything but trolling.

>

> Andy

>

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>

> Personally I see Dana's discussion of less frequent dosing being

better as troll behavior to

> just try to stir the pot and agitate everyone on the list.

If that was my only reason, then you would be correct. In fact, the

reason you give it not my reason at all, altho you are certainly free

to disagree with me.

> Dana herself never tried frequent dosing. Her reasoning was she

couldn't get up at night.

> She has no idea how much better her children would be if she had

done things properly.

My kids are recovered. You are right tho, I have no idea " how much

better " than recovered they might be.

> I do. I've talked to innumerable people who have not only done it

both ways on one kid,

> but also who have done it one way on one and another way on another

of their children

> (most often starting with 8 hour dosing in kid #1, then switching to

3-4 hour dosing and

> doing both kids).

And I have discussed with several, I am sure not nearly as many as you

have, that their child does much better with 3x per day, or other

alternative protocol.

> Anyone who has been on the list as long as Dana has should recall

that there have been

> several cases where the people really did have children who did

better on 8 hour dosing

> and I did tell them I agreed with that in their particular case and

they should do it.

I do have some memories where you have done this.

>> There

> in fact are exceptions to the rule - just not very many. I'd

estimate about 1 in 1,000.

Maybe the people who contact me, are part of the 1 in 1,000, altho

that would mean there are a lot more people reading this list than is

evidenced in the membership list. I don't keep a tally list tho, of

how often I am contacted.

Dana

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> >

>

> > Dana herself never tried frequent dosing. Her reasoning was she

> couldn't get up at night.

> > She has no idea how much better her children would be if she had

> done things properly.

>

>

> My kids are recovered. You are right tho, I have no idea " how much

> better " than recovered they might be.

>

And no idea what sorts of problems they will encounter in the future.

Often the problems show up many years after the metals have settled

in the various organs. Or, the problems are there but are not being

recognized as being related to improper chelation.

The problems that Dana has encountered with " yeast " give some

indication that something is wrong.

>

> > I do. I've talked to innumerable people who have not only done it

> both ways on one kid,

> > but also who have done it one way on one and another way on another

> of their children

> > (most often starting with 8 hour dosing in kid #1, then switching to

> 3-4 hour dosing and

> > doing both kids).

>

>

> And I have discussed with several, I am sure not nearly as many as you

> have, that their child does much better with 3x per day, or other

> alternative protocol.

>

When these people won't post to the list there is no opportunity to

" cross examine " and no opportunity to figure out what these people

were really doing.

My best guess is that the people who did " better " on 3x per day were

using the same dose as they tried with every 3 h and were therefore

only doing better (in the short term) because of the smaller dose.

I find that the most common mistake is to try a dose that is too high

and then abandon the protocol when there are side effects when the

solution is to lower the dose. These people who send one mail to say

that things are " better " often don't remember to mail back a year

later to say things are " worse " . They would tell Andy.

>

> > Anyone who has been on the list as long as Dana has should recall

> that there have been

> > several cases where the people really did have children who did

> better on 8 hour dosing

> > and I did tell them I agreed with that in their particular case and

> they should do it.

>

>

> I do have some memories where you have done this.

>

>

>

There is going to be some individual variation in half life in

individual people. Half life is determined by using an " average " .

This would explain why some people might get away with extending the

dose interval a little bit, but one can tell by reading experiences in

archives that it is much better is keep the dose interval at 3 h, and

extending it to 8 h is way too much.

The worse shape the liver is in, the more mercury has damaged the

enzymes and processes involved in elimination of toxins, the _shorter_

would be the half life, in those individuals. Don't you think that

makes sense?

It is the more sensitive, more toxic, frail people who need to stick

to every 3 h or more frequently very strictly or they will have

serious, serious problems. Once they have those problems the problems

will make it almost impossible for some to chelate properly.

One only has to look carefully in chelation group archives to find

reports from adults who chelated with 3x per day and got worse

(developed things like MS, ALS symptoms, and worse, that they didn't

have before) and then chelated with Andy's protocol, every 3 h with

ALA and got better. There are many, many reports like this from

adults. After reading those reports from adults it is a very small

step to realize that recommending 3x per day chelation with ALA is the

same as giving advise that is known to make people seriously worse.

There is a lot of emotion involved when someone sees someone else

advising people to do things that will make them worse, especially

when we are talking about kids who have their whole lives ahead of them.

I don't see troll behavior. What I see is that some people really

don't get it and I feel frustrated when I can't figure out how to

explain it to them, because the harm associated with improper

chelation is so unnecessary.

J

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> > My kids are recovered. You are right tho, I have no idea " how much

> > better " than recovered they might be.

> >

> And no idea what sorts of problems they will encounter in the future.

I don't know if *anyone* really knows about problems that may occur in

the future, no matter which chelation protocol, if any, was used. Do

you know of any information on children who are in their 20s or higher

now, who were chelated when they were younger, and which protocols

they were using?

> Often the problems show up many years after the metals have settled

> in the various organs.

My kids have been fully chelated for four years now.

> The problems that Dana has encountered with " yeast " give some

> indication that something is wrong.

No more yeast problems here, which is VERY nice!

And during chelation, I was able to keep yeast under control with

biotin and GSE.

> When these people won't post to the list there is no opportunity to

> " cross examine " and no opportunity to figure out what these people

> were really doing.

Well, I think it is the *method* of cross-examination that makes them

not want to post here.

I can cross examine " nicely " and I can also do it " not-so-nicely " . It

is this aspect/tone of this list that is primarily responsible for

creating the problem you mention, that there is no opportunity to

EXPLORE why the frequent dose protocol may not be working well. Most

private messages to me start with the phrase " Sorry to bother you

privately, but I don't really want to post this to the list and be

flamed for it. "

> My best guess is that the people who did " better " on 3x per day were

> using the same dose as they tried with every 3 h and were therefore

> only doing better (in the short term) because of the smaller dose.

This is common, altho not always true. Some people have tried the

same dose both ways, and the 3x per day still works better.

> I find that the most common mistake is to try a dose that is too high

> and then abandon the protocol when there are side effects when the

> solution is to lower the dose.

This is very common, yes. And when I determine that by private email,

I often recommend they keep the frequent dose protocol and lower the dose.

> The worse shape the liver is in, the more mercury has damaged the

> enzymes and processes involved in elimination of toxins, the _shorter_

> would be the half life, in those individuals. Don't you think that

> makes sense?

Not sure, I am not a scientist. If the liver is damaged, maybe it

takes a lot *longer* to metabolize things?

> One only has to look carefully in chelation group archives to find

> reports from adults who chelated with 3x per day and got worse

> (developed things like MS, ALS symptoms, and worse, that they didn't

> have before) and then chelated with Andy's protocol, every 3 h with

> ALA and got better.

So then it was not a permanent problem.

> There is a lot of emotion involved when someone sees someone else

> advising people to do things that will make them worse, especially

> when we are talking about kids who have their whole lives ahead of them.

There is also a lot of emotion when people perceive others as

belittling them and disrespecting them for questions they have,

opinions they have, or decisions they have made. Parents have to

battle doctors, school districts, and even " loving " family members.

Why should they have to come here, among people who theoretically are

sympathetic, and be subjected to the same treatment?

> I don't see troll behavior. What I see is that some people really

> don't get it and I feel frustrated when I can't figure out how to

> explain it to them, because the harm associated with improper

> chelation is so unnecessary.

My suggestion is for people to stop being so condescending and

extremist/alarmist on the list, and then people won't feel the need to

contact me privately so often.

Dana

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***** The problems that Dana has encountered with " yeast " give some

indication that something is wrong.***** & nbsp;, can you elaborate on what

you mean by this statement? I try to read every post that I feel is pertinent to

my son's protocol of DMSA/ALA every 4 hours. It seems as if yeast is an issue

regardless of which method of chelation. This seems to be a great fact for most

of us, and not an indication of doing something incorrectly.

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

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

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> There is a lot of emotion involved when someone sees someone else

> advising people to do things that will make them worse, especially

> when we are talking about kids who have their whole lives ahead of

them.

>

> I don't see troll behavior. What I see is that some people really

> don't get it and I feel frustrated when I can't figure out how to

> explain it to them, because the harm associated with improper

> chelation is so unnecessary.

>

>

> J

>

---

I deal with this frustration a lot. On parenting lists, trying to

suggest a more effective parenting method is hard because it easily

comes across as telling the parent who is frustrated and looking for

support that they are " bad parents " . This is where it is important to

validate people without validating their current approach to the

problem. Most people on both the giving and receiving ends have

difficulty separating the two things. So, most of the time, strongly

worded criticisms of what they are doing is not seen as helpful.

Instead, it is felt as a personal attack. And people do not generally

accept help that is offered in that fashion, and with good reason.

People who don't know any better live with a great deal of frustration

and pain and certain aspects of their lives are typically very hard.

Compassion, patience, and respect for them usually goes a lot further

in getting them to be open to new ideas than language that feels to

the listener like a verbal assault. On email lists, the problem is

compounded by the lack of facial expression, body language, voice

tone, etc. I think something like 80% of face-to-face communication

lies in those things. The actual words we use are a very small part

of the meaning conveyed. When words are stripped of the innate warmth

a person might be trying to convey and those words are read by someone

in a lot of pain, scared, frustrated, angry, getting criticized by

most of the people around them and so on, it is highly likely that

they will be interpretted in the worst way possible.

So I continue to work on the velvet glove part of my writing. Like so

many people who have been through hell and triumphed over a lot, I do

pretty well with the iron hand part. And it makes me seem very

unapproachable and unlikable to a lot of people. I like myself and I

have friends who like me and I think I am a very warm, likable person

so I am always taken aback when others don't seem to think so. Such

reactions are a reminder that people who don't know me yet or who

don't me well and who see too much iron hand without enough velvet

glove will be turned off to the information I am trying to share with

them, no matter how good the information itself may be. " Yelling at

them " type of reactions to their rejection of me and my ideas only

makes the situation worse and makes it even less likely that they will

ever be open to it. If it goes far enough, their mind may be

permanently closed to such ideas, even if those ideas come from

someone else, somewhere else, at some later time. I'm human. I still

sometimes blurt things in frustration -- and usually regret it. But I

know that is not the way to reach people.

Peace.

Michele

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Thank you.

> it is important to

> validate people without validating their current approach to the

> problem.

This is helpful. Not sure HOW helpful, and how much it is just that people who

are prone

to take things negatively can't be reached and necessarily have to hurt their

kids a lot

before listening to people becomes less painful than watching their child

disintigrate, but

at least it is a handle on the problem.

Or as I'd rephrase it, I have to contradict and confront their request for

affirmation without

criticizing them.

Maybe it is back to the " your doctor doesn't konw anything about medicine "

approach.

Of corse this is pretty hurtful to the doctors (who like the parents are usually

doing the

best they know how) but at least it lets the parents put perceived blame onto

someone

else.

BTW, I do occasionally hear from the relevant doctors (some patients like to

torture them

with this kind of thing) and mostly they have been very reasonable people and

we've

ended up having really interesting collegial discussions even though we didn't

end up

agreeing on proper chelation protocols as a result.

Andy

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> I don't know if *anyone* really knows about problems that may occur in

> the future, no matter which chelation protocol, if any, was used.

I have the best information available, and it is in fact pretty grim when it

comes to the

results of improper chelation.

Of course there is ALWAYS an area where somewhat more precision can be called

for to try

to ignore the truth, just as the medical establishment calls for larger and more

expensive

studies every time something comes out the way they don't like, but at some

point the

information is adequate to draw conclusions which are conclusive and essentially

certain

to be correct. That point is well past on chelation protocols - you need to do

it right or

the outcomes will be far less than you could have achieved.

This is a classic example of the troll behavior I was talking about. Purest

sophistry. There

is no excuse for it other than pointless argument and agitation.

If Dana's kids were fully chelated they wouldn't need any more supplements or

special

diets.

Andy

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> >

> > Personally I see Dana's discussion of less frequent dosing being

> better as troll behavior to

> > just try to stir the pot and agitate everyone on the list.

>

>

> If that was my only reason, then you would be correct.

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

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>

> Thank you.

:-)

>

> > it is important to

> > validate people without validating their current approach to the

> > problem.

>

> This is helpful. Not sure HOW helpful, and how much it is just

that people who are prone

> to take things negatively can't be reached and necessarily have to

hurt their kids a lot

> before listening to people becomes less painful than watching

their child disintigrate, but

> at least it is a handle on the problem.

>

> Or as I'd rephrase it, I have to contradict and confront their

request for affirmation without

> criticizing them.

I wouldn't assume they are looking for affirmation for the course of

action in question. I would assume they are looking for PERSONAL

affirmation and try to give that as something completely separate

from the protocol in question. It is sometimes possible to affirm

that someone is a good parent, trying hard to do right by their kid,

while at the same time saying that what they are doing currently is

not the best practical solution.

>

> Maybe it is back to the " your doctor doesn't konw anything about

medicine " approach.

I addressed this issue rather successfully on a CF list with the

following:

-----------

Questioner:

" I agree that eating healthy can totally change a person's health.

But I also really believe my son's Dr. has our best intentions in

mind (although that may not be true for all Dr.'s). I trust him and

what he does or does not have us do for (my son). It seems to me

you do not trust medical people at all? Is that a correct

statement? If so, why?

Me:

At the top of my " Mental Models " page, I have the following two

quotes:

A question that sometimes drives me hazy: am I or are the others

crazy? -- -- Albert Einstein

No problem can be solved from the same level of consciousness that

created it. -- -- Albert Einstein

I believe doctors have " good intentions " . I also believe " the road

to hell is paved with good intentions " . It's not enough to have

good intentions. You have to have accurate information, accurate

mental models and effective treatments. Currently, people with CF

typically take a lot of medication, spend a lot of time very ill,

and usually die at a very young age. It's not possible to separate

these outcomes from the system that creates it. (And, as Einstein

indicates, it's not possible to separate the ideas and mental models

of this current system from the outcomes of this current system:

those ideas lead to those outcomes.) That's why good studies always

use a " control " group: it isn't possible to tell if a specific

thing has the effect you think it has if there isn't an objective

basis for comparison. Currently, there isn't really an objective

basis of comparison for the conventional approach to treatment for

CF. It's the standard and there is precious little variation --

though sometimes I hear interesting bits and pieces about how CF is

treated in some other countries with better results than we see here.

Somewhere, I have a link to a list of what nutrients are leached

from the body by which drugs. I have never in my life had a doctor

tell me " When you are on X drug, you need to also take Y vitamin

supplement to avoid a deficiency. " Given that people with CF tend to

be on drugs frequently and many people with CF take maintenance

drugs daily and long term, I think this detail really takes its toll

on this population. I have come to believe that the drug side

effects are part of why people with CF are so sick. I also have to

wonder WHY these drugs leach these nutrients from the body. What is

the mechanism? Do the drugs work in part BECAUSE they use up these

nutrients? If so, perhaps the nutrients themselves are key to

combatting illness and the drugs are just a manipulator to force the

body to use the nutrients that way even if there isn't enough of

it.

But, in the long run, leaching those nutrients and not replacing

them worsens one's health. Past some point, the body cannot be

manipulated into performing better. It has to be given the

resources it needs to perform better. Drugs don't do that.

Nutrition does. And it also seems to me that leaching these

nutrients from the body and not replacing them may explain why we

see the " progression " of CF in spite of constantly

developing " better " drugs: the body deteriorates as it develops

untreated malnourishment. (Without the drugs, the body can also

deteriorate because of malnourishment and getting overrun with

infection. Just tossing the drugs out doesn't by itself fix

anything. There has to be a pro-active solution in place BEFORE the

drugs can be successfully removed.)

I was very, very ill for a long time. And heavily medicated. The

drug side effects were horrendous. It was not easy to figure out

how to effectively get off the drugs -- what would work to heal my

body and make my body work again and not " need " those drugs. You

can't just stop taking them. There is a real problem with CF which

requires effective intervention. If you don't have another

effective method for treating it, then the drugs at least keep you

alive for a time. But to my knowledge, drugs don't actually make

anyone healthy. They are generally intended as " crisis

intervention " .

Even doctors and researchers tell everyone over and over that diet

and lifestyle are major factors in cancer, heart disease and almost

any other deadly condition you can name. Yet when you go to a

doctor, they put little emphasis on changing those things. There

have been a few interesting studies where doctors did pursue a diet

and lifestyle solution for serious conditions like diabetes and

heart disease. Such studies do exist. But most people don't really

want to make lifestyle changes. Most people prefer the convenience

of popping a pill. It's easier. But, there is always a price

for " convenience " and with CF I don't find the up to 3 hours a day

in chest therapies and other treatments and up to several thousand

dollars a month in drugs to be " convenient " . I find the lifestyle

changes I have made give me far more time, energy, and money to have

a life.

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

>

> Of corse this is pretty hurtful to the doctors (who like the

parents are usually doing the

> best they know how) but at least it lets the parents put perceived

blame onto someone

> else.

I try to avoid blaming anyone. Sometimes there is no one to blame.

It's just a tragedy. With vaccines, I think people were trying to

find a solution to one problem and just didn't know that it would

cause some other problem. I had a very hard childhood in some ways

because I had no diagnosis and everyone found me " difficult " . Since

I had no diagnosis, they couldn't understand my behavior had

physical roots and they blamed it on 'personality'. For example,

instead of people understanding that I just didn't have the energy,

I was viewed as " lazy " and " uncooperative " . My mom cooked from

scratch a lot and did other things that helped me do remarkably well

given the lack of diagnosis. But she just didn't know what was

wrong. Blaming her for that when the diagnosis didn't exist until I

was about 31 years of age accomplishes nothing.

The mental model in my household is " The Aswan Dam " . It

accomplished all the goals it was intended to accomplish: it

controlled the flooding of the Nile, it provided electricity, etc.

It was hailed as a " success " . But all that flooding is what made

Egypt " The Jewel of the Nile " -- a sophisticated and secure

civilization for thousands of years. With removing the flooding,

the use of chemical fertilizers skyrocketed (I think six fold).

This put a lot of small farmers out of business who simply couldn't

afford it. (And we won't get into what that may be doing to

people's health.) There was also an explosion of schistomiasis, a

very nasty parasitic infection, because the flooding used to keep

the snail population under control and snails are the vector. The

massive amounts of silt that used to fertilize the fields is now

building up behind the dam at a much faster rate than was

anticipated. This means that the useful lifespan of the dam will be

far shorter than was expected/planned. (And so on.)

So I try to talk about the fact that even if you accomplish what was

intended, there may be unintended consequences that are quite

harmful. Trying to find solutions that lack those unintended

negative consequences is harder than finding one-dimensional

solutions, which is why unintended negative consequences happen so

often. Those unintended negative consequences do not

suggest " blame " and do not suggest someone is " guilty " of

something. If you remove the idea of " blame " or " guilt " from the

equation, it gets much easier for people to embrace a better method -

- because embracing that method is not experienced as an " admission

of guilt " for what they used to do. I try to present it in the

spirit of that line from some song: " it's better than the way we had "

>

> BTW, I do occasionally hear from the relevant doctors (some

patients like to torture them

> with this kind of thing) and mostly they have been very reasonable

people and we've

> ended up having really interesting collegial discussions even

though we didn't end up

> agreeing on proper chelation protocols as a result.

That doesn't surprise me at all.

>

> Andy

>

Michele

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>

> 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

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andrewhallcutler wrote:

>

>

> If Dana's kids were fully chelated they wouldn't need any more

> supplements or special

> diets.

>

> Andy

>

***********8

Thank-you Andy. I'm happy to know that when I'm done chelating my

children all other medical issues they may ever have will be completely

eradicated, to the point that I will not need to ever offer them another

supplement or special diet. . . .after all, the only potential ill that

will ever befall our children is heavy metal toxicity and more

specifically mercury poisoning. Now, I know you don't really believe

that.

I have the utmost respect for both you and Dana, and don't believe

either of you are playing troll. Neither do I believe that Dana needs

to start her own message board, especially since you can already see

that she is a moderator at this one

* /members?group=mod

*Her help here has been invaluable to me, and my children, more so than

any MD or ND I've ever paid. I've also purchased Andy's book, since I

trust that has some answers too. Ultimately, the judgment call on how

much/when/how often is up to me as their mother though. I appreciate

knowing how all who have successfully chelated their families have done

it, and having access to those discussions. Also, if you go to the front

page of this group, you will see that nowhere does it say that this

group is intended to discuss only frequent dose chelation as a means for

dealing with Mercury-Autism (description below). Therefore, it would

seem that anyone who has done it differently should be welcome to

discuss what did work for them (or didn't) without being told they are

trolls or to start a different group for such discussions.

*

* P.

who, if she finds something that helps her children yet is contrary to

what others on this board offer for advice, will be as brave as Dana as

to post it so others will have another option to consider

Description from Front Page of Group

/

To discuss current issues related to the increasing incidence of autism

the potential link between excessive mercury exposure via thimerosal in

infant vaccines. Topics include: mercury detoxification ( " chelation " ),

mercury-related issues/news, and vaccination-related issues/news. Most

members are parents of children with autism, aspergers, ADD, ADHD, PDD,

PDD-NOS, SID, oppositional defiance disorder, apraxia, speech disorders,

and/or other related symptoms. There are many labels: you are welcome

regardless of particular label(s). In addition to mercury, we also

discuss other heavy metals (for example: arsenic, antimony, lead). Many

parents here are in the process of chelation, with a child. This process

is discussed in detail. Also welcome: mercury poisoned adults; other

disorders/issues related to mercury poisoning; other biomedical

treatments for ASD.

Please be advised:

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Honestly - the list should have a new title, chelating the Andy Cutler

method. This same thing just happened to the NCD people. So maybe it's

time to switch the title of this list to express it's intented is the Andy

way and get other started on other methods, maybe NCD got a

group going, not sure.

Tammy

[ ] Re: Less frequent dosing and internet troll

behavior

>

> 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

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Do consider that people will never get as much out of this group as

otherwise if they havn't taken the time to read " Amalgam Illness. "

And, if they had read the book, it is much less likely that they

would ask the kind of questions likely to encourage knee-jerk

responses. I personally have had much success with a diplomatic

and patient approach to helping (and receiving help from) others, but

there isn't always time for this, and we have all had different

experiences which encourage different approaches. I will not pretend

to understand everything that Andy has experienced and contributed to

his current style. Also, I'm new to this group, have read all of

Andy's replies so far, and have never thought any of his posts to be

innapropriate (often enlightening though). Of course, I've

read " Amalgam Illness " so I don't know how I'd see the picture

differently had I not. , if someone is motivated enough to

stick around despite the initial replies that you felt inadequate,

they are much more likely to make progress.

groups.com, " Michele " <talithamichele@...> 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

>

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I don't think Dana was trying to cause problems and I give her credit for

all the things she has done to help her children. Whether it has helped or

maybe it will make things worst later on, she at least tried to work things

out according to her situation.

I personally will not attempt Dana's method because 1) i do like Andy's

conservative approach much better and 2) I only have one child to work with.

I am not in any position to criticize her or anyone else trying something

different.

Her reasons for doing the way she did it should be respected and us parents

should educate ourselves very, very well before we make any decisions for

our children. I have gotten a lot of suggestions, but at the end I chose

what I believed was right for my child, not what someone else's thinks.

Knowledge is power indeed!

Andy, it won't hurt you, if you try to be a bit " friendlier " with some of

your responses because not everyone has a Ph D or learns the same way you

do. I do believe some people may deserve a less " friendlier " answer, but

because we are so different, a bit of patience and some " friendly " guidance

could help a desperate parent find the " right help " for their child a lot

faster.

I know I've been at the end of the stick with some of your responses, so I

speak from a little experience and yes I have been doing my home work for a

while now :-)

Leo

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,

Andy asked if anyone had thoughts on how to more effectively reach

the people he is not reaching. I indicated that I had a few

thoughts. He and I have discussed some of this off list as well. He

has indicated that some of my remarks have been helpful to him. He

has said this both on list and off list. He has also let me know

that some things I have said aren't useful remarks to him.

Ultimately, he will have to decide how much of my thoughts to

incorporate into his personal effort to improve his track record of

reaching people.

I regret that some people view this discussion as " contentious " . As

far as I know, my discussions with Andy are not contentious. He has

not indicated to me that he feels insulted or attacked, just that so

far the bombastic approach has been more successful than whatever he

used to do. However, he stated publically he would like to find a

means to further improve on that track record. I used to be very

bombastic. It had it's up side. It also had a major downside. If

my thoughts on the subject help him in his goal to reach others and

help them, then I am willing to stick my neck out and let people on

list jump to the erroneous conclusion that I am " attacking " him

when, in truth, I am offering him the feedback he bluntly requested

and which he has, so far, indicated is helpful to him.

Peace.

Michele

>

> Do consider that people will never get as much out of this group

as

> otherwise if they havn't taken the time to read " Amalgam

Illness. "

> And, if they had read the book, it is much less likely that they

> would ask the kind of questions likely to encourage knee-jerk

> responses. I personally have had much success with a diplomatic

> and patient approach to helping (and receiving help from) others,

but

> there isn't always time for this, and we have all had different

> experiences which encourage different approaches. I will not

pretend

> to understand everything that Andy has experienced and contributed

to

> his current style. Also, I'm new to this group, have read all of

> Andy's replies so far, and have never thought any of his posts to

be

> innapropriate (often enlightening though). Of course, I've

> read " Amalgam Illness " so I don't know how I'd see the picture

> differently had I not. , if someone is motivated enough

to

> stick around despite the initial replies that you felt inadequate,

> they are much more likely to make progress.

>

>

>

>

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>

> Honestly - the list should have a new title, chelating the Andy Cutler

> method. This same thing just happened to the NCD people. So maybe it's

> time to switch the title of this list to express it's intented is the Andy

> way and get other started on other methods, maybe NCD got a

> group going, not sure.

>

>

>

> Tammy

We discuss tons of other things here than chelation, and people really do

chelate every

which way here. After all, Dana has been doing 8 hour chelation with her kids

for years

and talking about it on list and I didn't trash it and am not trashing her now,

I'm just

participating in a frank discussion about what she has to say and why she is

saying it.

Andy

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> If Dana's kids were fully chelated they wouldn't need any more

supplements or special

> diets.

They have not needed a special diet for over 2 years.

The only supplement they need is arginine, and I am experimenting with

other aminos right now. They are finished with all other supps.

Dana

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> 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.

I typically only discuss ALA. I never used DMSA and typically don't

discuss it, either here or privately.

There is a list called " frequent dose chelation " . I don't post there,

for obvious reasons. This list is called " autism treatment " , therefore I

find it unnecessary to start another list for 8 hour dosing, since

that protocol would be appropriate to discuss here, based on the list

title and description.

Dana

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> 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.

You said this better than I did.

> 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.

I promote " what works for a specific child " . If that is frequent

dose, then do that. If 3x per day, then do that.

It is odd in a way, that I apparently am not allowed to " promote 8

hour dosing " , but others here can promote frequent dose without

problems. This is, after all, NOT the frequent dose chelation list.

I do believe that frequent dose is probably safest. However, if it

won't work, for whatever reason/s the parent believes are relevant and

important, I try to work with that parent to find something

" sufficiently safe " that will also work.

Dana

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> We discuss tons of other things here than chelation, and people

really do chelate every

> which way here. After all, Dana has been doing 8 hour chelation

with her kids for years

> and talking about it on list and I didn't trash it and am not

trashing her now, I'm just

> participating in a frank discussion about what she has to say and

why she is saying it.

I generally refrain from replying to most messages that are general

inquiries about chelation, and those that indicate the parent wants to

consider frequent dose. I don't think posting info to those messages

would be productive, and may in fact be considered " trolling " . I let

the others here provide information.

If however, someone specifically asks for info on other protocols, or

a message is posted where I believe my info would be relevant, I do

post a reply. And Andy and others tend not to reply to those

messages, as a general rule. So they are not " trolling " either.

So there is somewhat of a " respect for other viewpoints " here, altho

occasionally it develops into a large discussion, as it did this time.

And most of the time, so long as they don't develop all that

frequently, these discussions are good, because people can read the

opinions and experiences of several people, and they can make

decisions about their own families.

Dana

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> > 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.

>

>

> You said this better than I did.

:-)

>

>

> > 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.

>

>

> I promote " what works for a specific child " . If that is frequent

> dose, then do that. If 3x per day, then do that.

>

> It is odd in a way, that I apparently am not allowed to " promote 8

> hour dosing " , but others here can promote frequent dose without

> problems. This is, after all, NOT the frequent dose chelation

list.

>

> I do believe that frequent dose is probably safest. However, if it

> won't work, for whatever reason/s the parent believes are relevant

and

> important, I try to work with that parent to find something

> " sufficiently safe " that will also work.

>

> Dana

>

At times, I get similar flack for answering questions about

cilantro, even though I also always state honestly that I cannot

give anyone a known, safe protocol, I can only point them to posts I

made on list about my first hand experience at the time that I

discovered that my health was improving in part because I was

inadvertently chelating by consuming cilantro at lunch most days. I

can only chalk it up to the fact that people who have been poisoned

or who have helped a loved one recover from metal poisoning

essentially have a lot of emotional baggage and fear about the topic

and, thus, feel compelled to encourage others to ONLY do what

is " safest " . This sometimes blinds people to the fact that

statistical average about what is " safest " do not say anything about

will work best for a specific individual. In my experience, both you

and Andy are generally remarkably good about trying to answer

questions without bringing such biases to the table. I don't really

know why that fact seems to not be getting better acknowledgement in

this thread.

My primary concern about Andy's chosen " bombastic " approach is that

he is essentially the Alpha male of this group and that carries

enormous social power and has far-reaching repercussions on group

behavior, well beyond simply what he personally says in a given

post. The mannerisms he has adopted don't really fit with how

reasonable he really is and many people cannot distinguish style

from substance. I wish him well in his search for a more effective

means to accomplish his ends. I hope that he and others and this

group all benefit from whatever course of action he ultimately

concludes will further that goal.

Michele

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>

> ,

> Andy asked if anyone had thoughts on how to more effectively reach

> the people he is not reaching. I indicated that I had a few

> thoughts. He and I have discussed some of this off list as well. He

> has indicated that some of my remarks have been helpful to him. He

> has said this both on list and off list. He has also let me know

> that some things I have said aren't useful remarks to him.

> Ultimately, he will have to decide how much of my thoughts to

> incorporate into his personal effort to improve his track record of

> reaching people.

Just like every parent has to take all the input they get about chelation and

decide what

they are actually going to do.

> I regret that some people view this discussion as " contentious " .

Actually nothing so far has been contentious at all compared to many past list

events, e. g.

go back and find some of the discussions with Jaquelyn McCandless, or the nurse

(I

apologize for not remembering her name) who actually went and got the Leskova

paper

translated from Russian.

Some people have needed a LOT more emotion to help them think than is going on

now.

> As far as I know, my discussions with Andy are not contentious.

They aren't.

> He has

> not indicated to me that he feels insulted or attacked,

No, I don't, I just don't agree with a lot of what says but I

appreciate her efforts to

express it in hopes it might help.

> just that so

> far the bombastic approach has been more successful than whatever he

> used to do. However, he stated publically he would like to find a

> means to further improve on that track record.

Yes, this is an accurate summary.

> I used to be very

> bombastic. It had it's up side. It also had a major downside. If

> my thoughts on the subject help him in his goal to reach others and

> help them, then I am willing to stick my neck out and let people on

> list jump to the erroneous conclusion that I am " attacking " him

> when, in truth, I am offering him the feedback he bluntly requested

> and which he has, so far, indicated is helpful to him.

I don't have to agree with it (or necessarily take it) to greatly appreciate it

and the effort it

took to offer your thoughts.

Andy

> Peace.

>

> Michele

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>

> > I regret that some people view this discussion

as " contentious " .

>

> Actually nothing so far has been contentious at all compared to

many past list events, e. g.

> go back and find some of the discussions with Jaquelyn McCandless,

or the nurse (I

> apologize for not remembering her name) who actually went and got

the Leskova paper

> translated from Russian.

>

> Some people have needed a LOT more emotion to help them think than

is going on now.

>

I was here when some doctor was ultimately thrown off. I have also

seen some very ugly things go down on other lists, things that make

this discussion look like there is zero friction. I think one issue

is the size of the list. The human brain is geared to interact

effectively with a " tribe " size of about 150 people. Givin that

only about 20% of members typically actively post on a list, this

means that lists larger than about 750 members tend to have problems

where two people who are only having a discussion get viewed by

others as having a " fight " (and so forth). The list membership here

is about ten times that optimal size (though actual membership is

smaller, because the last time I checked, more than a

thousand " members " have email addresses that are bouncing all posts,

so there isn't a live person behind that address anymore). The

human brain can't follow all the social relationships involved in

such a large group. I suspect that more formal, polite behavior is

usually necessary to reduce dramatic misunderstandings of a sort

that typically aren't seen on smaller lists. But I am not entirely

sure what would work best to address this specific issue because

this is really the largest online forum I belong to.

Thanks (something I say 10,000 times a day at the fortune 500

company I work for -- it really does help to smooth communication

with the near total strangers I often speak with on the job).

Michele

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> It is odd in a way, that I apparently am not allowed to " promote 8

> hour dosing " , but others here can promote frequent dose without

> problems. This is, after all, NOT the frequent dose chelation list.

You can promote whatever you want, this is pretty much a 'free speech' list.

You can expect very predictable responses from me when I think what you are

promoting

isn't responsible or reasonable. My views may, of course, differ from yours on

this and I'll

do the free speech thing too.

> I do believe that frequent dose is probably safest. However, if it

> won't work, for whatever reason/s the parent believes are relevant and

> important, I try to work with that parent to find something

> " sufficiently safe " that will also work.

In almost all cases they're better off waiting until they want to figure out how

to do it right

than to do it wrong for a while then switch and try to repair the damage.

Most people can solve whatever problems with frequent dosing and it works far

better. A

very few can't and in those cases I really do endorse their use of, say, 8 hour

dosing if it

really seems to be working and not having the long term adverse effects one with

adequate experience and understanding would expect. In most cases where we see

discussions of using 8 hour dosing we are seeing the negatives and not seeing a

history of

trying all the things one needs to try to be sure frequent dosing isn't helping.

Your paragraph above is very nice, the devil is hiding in the details left out

of it.

Do you think we've beaten our dead horse enough we can stop now?

> Dana

>

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