Re: To Steve (Rose/Mark)

[Guest guest]

> Yes, it

The list interace page and the list rules

> does give that warning,

It is entirely possible that most people who read the list rules as

posted by the list owner do actually believe them, and that the rules

have some effect on list discussion.

Since the list rules state that people will be thrown off for

mentioning my name it seems somewhat excessive to say

> don't spread that falsehood

when someone points out that people can be kicked off that list for

mentioning my name.

Also to know this would require that you are the only person who can

kick people off the list, or that you have exhaustively contacted and

surveyed everyone who ceased posting on it. To assert that it is never

done is like saying " my city doesn't give jaywalking tickets. " Hard to

actually know that if there is an anti-jaywalking ordinace.

Andy . . . . . .

[Guest guest]

Hi,

When I joined the ck2 list, I was not happy that AC's name could not be

mentioned, mainly

because I hate censorship, and didn't really understand why. And knowing that

was a rule,

I did initially feel censored. I wrote the moderator, who I actually have come

to like a lot,

and she said it was fine to mention the 8 hour protocol. It does get mentioned

regularly,

and most recently, there is a lot of discussion about daily applications of

TD-DMPS, as

some DAN-ers are now recommending that, as well as every day minerals.

My own DAN doc has said she had a few patients who apply the dosage a few times

in a

day, which could easily turn into an AC protocol. She thought it was a good

option for

some. Many people are also not doing full dose.

I think it is hard to trust Buttar when he won't really share his research, and

that seems to

be evident in this new approach by some DAN doctors.

Of course, all parents with ASD children are likely emotionally heightened and

reactive and

desperate, because we must all feel like we're racing the treadmill to save our

kids.

However, I still find the CK2 list a great resource and support, and do feel

that there is

plenty of accurate information to be found. What I do like about it, is that

there is no

tolerance for personal attacks on people. (I think it's okay to not always say

what one is

thinking about people).

I am sorry that Andy's name cannot be mentioned. But, truth be told, his book

and his

protocol are mentioned, and in all instances that I've read, it has been with

respect.

Respectfully,

Jill

> I believe the rules also extend to getting kicked off the list for

> mentioning my protocol.

>

> This is an EXCELLENT list for people to read to find a vast number of

> absolutely tragic horror stories about what happens to kids when their

> parents get emotionally involved in personality issues and ignore the

> technical information that is essential for understanding how to make

> their chidlren better instead of worse.

>

> However with mention of certain people, protocols, opinions, and

> scientific information banned, the chelating kids 2 list is not a very

> good source of accurate information, or context.

>

> > Barb

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

> > From: " rosefeurer " <rfeurer@n...>

> > >> > ---Steve, I fear this is misleading many people about what

> > >> > they might expect from a low-dose frequent chelation. My

> > >> experience,

> > >> > and those of most of the people I'm personally acquainted with,

> > > is

> > >> > that even low-dose chelation produces the same effects as those

> > >> you

> > >> > attribute only to Buttar's protocol.

> > >>

> > > Steve replied:

> > >> -- wrong. The effects I am referring to are not the standard yeast

> > >> problems. They are the " stim hell " problems that seem to be the

> > >> norm with Buttar, accrding to his own data.

> > >

> > > --that's what I'm referring to on the low-dose chelation, it's

> > > exactly the same thing everybody I've been personally acquainted with

> > > got for their kids on low-dose. And it preceded the yeast. From the

> > > very first round, we got stimming with low-dose, and later, within 3

> > > months, got yeast out the wazoo

> > >>

> > >

> > > Rose: I have also seen all the reports on chelatingkids.

> > > Steve:> -- chealting kids specifically does not advocate the Cuytler

> > >> protocol. In fact it is forbidden to discuss that protocol on that

> > >> list. So this is a misleading comment

> > >>

> > > ==this just isn't true, I've seen Cutler's name mentioned so many

> > > times there. You aren't on the list and you've been misled, his

> > > protocal is mentioned all the time, it's just not allowed to argue

> > > with others about it there.

> > >

> > >> >We got yeast and terrible parasites on a dose of

> > >> > initially 12 mgs every 4 hours,(he had had a clear, no yeast or

> > >> > parasites prior to chelating), we also got stimming from the very

> > >> > first round, crankiness, vomiting, 2 bouts of high fever. I

> > > didn't

> > >> > stop, and in fact was told the same thing then that Buttar tells

> > >> > patients, by Andy. Chelation is not without risks, but lower the

> > >> > dose. I do think you and the many people who haven't experiences

> > >> > these think that this doesn't happen if you follow the " rules. "

> > > It

> > >> > just isn't so.

> > >>

> > >> -- lower the dose is good advice. We did several rounds with just

> > >> 6mg of DMSA or ALA. Even now we are only using 12.5mg of each

> > > every

> > >> 2 to 3 hours and we have done 35 rounds.

> > >>

> > >> I am sorry you had these awful experiences, Rose. But in my years

> > > of

> > >> reading this list and others it seems to me that they are not the

> > >> norm with low-dose, high-frequency chelating. Whereas they are the

> > >> norm with the Buttar protocol. Several parents who have had

> > > problems

> > >> with the Buttar protocol have reported improvements when switching

> > >> to Andy's dosing schedule. This needs to be discussed, and parents

> > >> who try the Buttar protocol and get problems should be made aware

> > >> that there is an alternative that could possibly help them.

> > >>

> > > ---it is discussed on the other list, and no problems talking about

> > > it there

> > >>

> > >> > I don't think it's right to attribute this sort of pain to only

> > >> > Buttar's protocol. If you haven't experienced it, count your

> > >> > blessings, but I know too many people whose kids have, so I know

> > >> it

> > >> > ain't just mine. I realize that if you experience success on one

> > >> > protocol, that you tend to see it from your own perspective, and

> > >> > that's mine.

> > >>

> > > Steve-- I know for a fact that my son does better on a dosing

> > > shcedule

> > >> even tighter than that recommended by Andy. So I can't see how

> > > once

> > >> a day dosing would be of equivalent efficacy or safety

> > >>

> > > Rose:> >There was no difference for us in transferring to

> > >> > Buttar's and it appears that this is the case for all of the

> > >> people I know who have made the switch.

> > >>

> > >> Steve-- most people who have switched to the Buttar protocol have

> > > had

> > >> many rounds of chelation already behind them. But perhaps you're

> > >> right. We won't know unless we can debate this without invective

> > >>

> > > -Rose: -True, but from what I can see on the reports on

> > > chelatingkids2, I honestly don't see a difference for kids who start

> > > without any previous chelation--some are stimmy and some aren't. Very

> > > few show regression, but I think if you look through the loveletters

> > > here, you'll also see reports of regression. I honestly know too many

> > > people who have been stimmy, whining, cranky, with the moms calling

> > > me asking me whether they are doing the right thing with low-dose

> > > because after their first round they see regression. That's not

> > > invective, it's just observation. I was just trying to say that if

> > > you paint this as easy you are setting people up for stopping. That's

> > > why Buttar tells people to expect the worst, and to lower the dose.

> > > It's *exactly* what I've told every friend whose child started

> > > chelating and they started freaking out.

> > >

> > > Rose

> > >

> > >

> > >

> > >

> > >

> > >

> > >

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

> > >

[Guest guest]

> What I do like about it, is that there is no

> tolerance for personal attacks on people. (I think it's okay to

not always say what one is

> thinking about people).

There is a lot to be said for not personalising disagreements, and

avoiding insults and invective. Unfortunately once it starts, it's

hard to stop as the insulted parties feeled compelled to defend

themselves and point out the rude person's behavior. All too often

this escalates. It is very easy for one disagreeable person to derail

a contructive thread that is taking a turn not to their liking

But you can go too far in keeping consensus. I had a friend who

received several offlist emails from a moderator on another list (not

A-M) telling her stop criticising the DAN protocol as it was

upsetting listmates

I think it comes down to keeping a rein on rudeness but not

inhibiting discussion of issues

Steve

[Guest guest]

> Hi,

> When I joined the ck2 list, I was not happy that AC's name could not

be mentioned, mainly

> because I hate censorship, and didn't really understand why. And

knowing that was a rule,

> I did initially feel censored. I wrote the moderator, who I

actually have come to like a lot,

IMO what we're all missing is a large enough collection of people's

stories of their experiences with specific protocols, and a

well-designed thorough poll with a large number of respondents -- yes,

you can kind of get there by faithfully reading this list and CK2, but

that just increases the possibility of people's getting distracted by

personalities and other irrelevant things.

Maybe I was lucky in one way -- the ped who damaged my son is a really

funny, kind, smart woman whom I liked tremendously. Every

interevention in her office (antibiotics, steroids, vaxes -- the usual

list) was a complete disaster, and in evaluating what happened, I have

to admit that part of the reason I kept allowing the crap to continue

was that I liked her so much. Anyway, now I am *very focused on data

and *very careful not to let the fact that someone is warm and

supportive, or funny and smart, lead me to trust what they say without

thinking it through for myself.

So please everyone -- including the person saying TD-DMPS was working

terrifically for her son -- tell your stories, be exact about what

you've done and what the results/side effects were. We don't need to

argue about it, we just need the database.

And thank you Steve and Mandi for doing the work!

Nell

[Guest guest]

> Anyone who has been on the list long enough may remember every once in

> a while I post that I have profound disagreements with Dana and leave

> it at that. She is also grown up enough to leave it at that. She says

> what she has to say, I say what I have to say, this helps list members

> decide what they want to do.

Disagreements can be productive in learning differing opinions and the

reasons behind those opinions. I am never *afraid* to disagree with

ANYONE, and in fact I have had some really interesting disagreements

with some of the " gurus " on certain other lists. However, it did take

me two years of posting on the internet to develop a style of writing

that works for me. And fortunately, it does appear to work, at least

most of the time LOL

For anyone curious, here are a few basics from MY style, in no

particular order, " what one AS person has learned about social-skills

and posting on the internet, and being *relatively* successful " . Hey

maybe I will add this to my social skills page LOL:

State facts, but be sure they are facts based on my OWN knowledge, not

based on the postings of others unless I also indicate " I have read

from others " . Give the basis of my facts, like " my son had this

reaction " , or " I found info here [link] " .

Never state opinions as facts. Clearly preface opinions with " in my

opinion " .

NEVER state my opinion unless I REALLY believe it would be a good

thing, and even then, wait at least an hour before hitting " send " , to

be sure I really want to do this. Read it at least 4 times, making

appropriate adjustments where required. [This reply, and one other

here, I have had open in my browser for at least an hour, while I have

been responding to other messages.]

If in doubt, don't post unless I have at least one really plausible

educated guess. If I don't know, state that I don't know.

Give both [or more] sides, and/or offer alternatives. Each child is

different and not all kids will have improvements/problems like other

kids do. Nothing will be good or bad for EVERY child.

As much as possible, be specific, avoid generalizing.

Be brief. State my recommendation, give a brief reason behind it, and

then post any link/s which might be relevant for further research

and/or info. Avoid diarrhea of the verbiage.

Never tell another person what to say and what not to say. I can only

control myself. Trying to control someone else's behavior is futile,

so don't even try. Learn how to ignore.

As much as possible, use sentences that start with " I " or " for my

kids " . Avoid using " you " . This avoids making assumptions about, and

attacking, others.

Avoid using " always " or " never " unless specifically referencing my

kids or my own experiences.

If I believe I need to specifically disagree with someone, state

simply " I disagree " and state my reasons why. Be respectful. Once is

sufficient, don't beat the dead horse.

Be honest, always. No exceptions.

Know when to stop writing, and when to not even start.

Dana