Re: ? - every other night DMSA supps/ALA

June 3, 2008

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.

June 3, 2008

>

> 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

June 3, 2008

>>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

June 3, 2008

> 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

June 3, 2008

----- 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?

June 3, 2008

" 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

>

June 3, 2008

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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June 3, 2008

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

June 3, 2008

----- 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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June 3, 2008

>

> , 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.

June 3, 2008

> > 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

June 3, 2008

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: