Re: question for people using doctors to chelate

[Guest guest]

Hi Anita, I've been noticing another pattern among doctors: " Either

dosing is fine " some say, " you can do 4 hours or 8, " and they leave

it up to the parent, which makes the whole thing sound even more

lackadaisical, sloppy, and random.

One reason may be that DMSA's use for lead chelation has been

approved by the FDA for every 8 hours (if I remember correctly).

Moreover, apparently Physicians' Desk Reference (PDR) is

recommending 10mg per kg every 8 hours for five days, and... check

it out: lowering it down to twice a day for two weeks!

Another, rather patronizing reason may be that doctors may think

that high frequency dosing is too taxing on the parents. Two of our

previous doctors were thinking of my wellbeing (!) first, whereas I

was trying to figure out what is best for my son and made it very

clear that I was willing to do whatever it takes.

Beti

>

> I would like to ask a favour of all of those people using doctors

to

> chelate. If your doctor recommended a dosing schedule that did

NOT

> take into account the half-life of the chelator, I was hoping to

get

> some information from your doctor, via you.

>

> These are some questions I'd like answered:

>

> 1. Are there studies to show that chelators do NOT drop metals?

>

> 2. If the half-life a chelator is 4 hours, would the chelator

still

> be chelating as it normally can after 6 or 7 or more hours?

>

> 3. Why recommend every 8 hours for DMSA, for example, when that

> doesn't take into account the chelator's half life? Why not just

> give it once a day or in some other random pattern? Why choose

> every 8 hours if maintaining a steady level of chelator really

isn't

> that significant?

>

> My doctor has never chelated someone and is relying on my

judgement

> so I cannot ask him these questions, but I would really like to

hear

> some answers from other doctors. Of all the posts on this board

> (and others) dosing schedules is likely the most frequent. Most

of

> us know why we dose the way we do, but of all the reading I've

done

> of DAN! documents, I can't figure out why others are dosing the

way

> they do.

>

> If I get some helpful responses to this post, I'm going to try to

> pull it together in a file.

>

> Thanks so much,

> Anita

>

[Guest guest]

Oh, I forgot to mention that we *are* applying TD-DMSA every 4

hours, including nights for 3 days on and 4 or 11 off. Low-dose-high-

frequency dosing, in general, just sounds safer to me (kind of like

slow release) even if one knows nothing about the half lives of

chelators.

Beti

> >

> > I would like to ask a favour of all of those people using

doctors

> to

> > chelate. If your doctor recommended a dosing schedule that did

> NOT

> > take into account the half-life of the chelator, I was hoping to

> get

> > some information from your doctor, via you.

> >

> > These are some questions I'd like answered:

> >

> > 1. Are there studies to show that chelators do NOT drop metals?

> >

> > 2. If the half-life a chelator is 4 hours, would the chelator

> still

> > be chelating as it normally can after 6 or 7 or more hours?

> >

> > 3. Why recommend every 8 hours for DMSA, for example, when that

> > doesn't take into account the chelator's half life? Why not

just

> > give it once a day or in some other random pattern? Why choose

> > every 8 hours if maintaining a steady level of chelator really

> isn't

> > that significant?

> >

> > My doctor has never chelated someone and is relying on my

> judgement

> > so I cannot ask him these questions, but I would really like to

> hear

> > some answers from other doctors. Of all the posts on this board

> > (and others) dosing schedules is likely the most frequent. Most

> of

> > us know why we dose the way we do, but of all the reading I've

> done

> > of DAN! documents, I can't figure out why others are dosing the

> way

> > they do.

> >

> > If I get some helpful responses to this post, I'm going to try

to

> > pull it together in a file.

> >

> > Thanks so much,

> > Anita

> >

>

[Guest guest]

Hi Anita,

I really don't want to rain on your parade here -- I think

your project will get you an interesting range of answers,

and could be interesting. I think question #3 is particularly

interesting (at least for those that do recommend every 8 hours),

but I don't think the answers will be very enlightening.

(Well, it would be enlightening in terms of giving you a

sense of what some doctors think, but not in terms of the

reasons being convincing at all.)

With that said, I don't find the situation confusing in the

way that you seem to (at least if I'm understanding you correctly).

DMSA and DMPS have been used for years and years with

various infrequent timings. It is taught that way by

*everyone* teaching anything about it, except for Andy

or people who learned it from Andy -- This includes DAN, DAMS,

(oh, drat my memory, I'm not sure if I'm coming up

with the correct acronym here) ACAM??, Hal Huggins, VRP,

Klinghardt --- the list goes on.

So, let me ask you the reverse question: if you were a doctor

and all the collegues and/or teachers you know who do chelation

at all (which may be only a very few) do it infrequently

(either IV or orally) what sort of evidence would it take to

make you change? I'm not saying you WOULD NOT change, I'm

just saying " what would it take " ?

Let's further suppose that you (the doctor) hear about the

frequent dose timing thing, hear it is important, hear from

parents who have done great on it, and you think it really

may be the way to go, even think it makes sense. At THAT

point, how sure would you need

to feel before you would actually TELL PEOPLE to do it this

way? And what kind of evidence would THAT take?

don't know if this helps, but there's my thinking.

good wishes,

Moria

>

> I would like to ask a favour of all of those people using doctors

to

> chelate. If your doctor recommended a dosing schedule that did

NOT

> take into account the half-life of the chelator, I was hoping to

get

> some information from your doctor, via you.

>

> These are some questions I'd like answered:

>

> 1. Are there studies to show that chelators do NOT drop metals?

>

> 2. If the half-life a chelator is 4 hours, would the chelator

still

> be chelating as it normally can after 6 or 7 or more hours?

>

> 3. Why recommend every 8 hours for DMSA, for example, when that

> doesn't take into account the chelator's half life? Why not just

> give it once a day or in some other random pattern? Why choose

> every 8 hours if maintaining a steady level of chelator really

isn't

> that significant?

>

> My doctor has never chelated someone and is relying on my

judgement

> so I cannot ask him these questions, but I would really like to

hear

> some answers from other doctors. Of all the posts on this board

> (and others) dosing schedules is likely the most frequent. Most

of

> us know why we dose the way we do, but of all the reading I've

done

> of DAN! documents, I can't figure out why others are dosing the

way

> they do.

>

> If I get some helpful responses to this post, I'm going to try to

> pull it together in a file.

>

> Thanks so much,

> Anita

>

[Guest guest]

> With that said, I don't find the situation confusing in the

> way that you seem to (at least if I'm understanding you correctly).

> DMSA and DMPS have been used for years and years with

> various infrequent timings. It is taught that way by

> *everyone* teaching anything about it, except for Andy

> or people who learned it from Andy

What I wonder is how that practice (infrequent dosing) ever came about

in the first place. Isn't dosing on the half-life pretty standard for

medication? I remember when I was taking pain meds getting a stern

talking-to that I should take the med by the clock and *not just when

I felt I needed it, because of the half-life. Same with other meds. So

why do chelators get a different protocol?

The other thing I wonder is how many doctors doing chelation started

out with infrequent dosing but noticed some percentage of their

patients didn't do well. Maybe not enough doctors are chelating with

not enough patients? It did give me a shock when I went to an autism

conference and heard a well-known DAN (who uses an infrequent

schedule) say that some kids regressed badly with chelation and didn't

recover. I thought about yelling out something about the dosing

schedule but talked myself out of it, lol.

Nell

[Guest guest]

The infrequent dosing came from the original or label use of dmsa for lead

poisoning. The PDR lists every 8 hours. Using dmsa for mercury poisoning is

considered " off label " use. Lead, which is slooowly extracted has different

properties than mercury.

Why it has taken so long for drs to figure out that more frequent dosing is

optimal, I have no clue. And the fact that some kids can take the 8 hour dosing

okay, just adds to the confusion.

I, like you Nell, would think that drs would notice this, over time. But Dan!

is a powerful entity and look how anyone who insists that the more frequent

dosing is necessary (Andy) gets treated. They don't let you play anymore if you

don't play by their rules. This sends a powerful message to anyone else that you

better stay in line. Most do not have the moral conviction/courage to buck the

system.

[ ] Re: question for people using doctors to chelate

> With that said, I don't find the situation confusing in the

> way that you seem to (at least if I'm understanding you correctly).

> DMSA and DMPS have been used for years and years with

> various infrequent timings. It is taught that way by

> *everyone* teaching anything about it, except for Andy

> or people who learned it from Andy

What I wonder is how that practice (infrequent dosing) ever came about

in the first place. Isn't dosing on the half-life pretty standard for

medication? I remember when I was taking pain meds getting a stern

talking-to that I should take the med by the clock and *not just when

I felt I needed it, because of the half-life. Same with other meds. So

why do chelators get a different protocol?

The other thing I wonder is how many doctors doing chelation started

out with infrequent dosing but noticed some percentage of their

patients didn't do well. Maybe not enough doctors are chelating with

not enough patients? It did give me a shock when I went to an autism

conference and heard a well-known DAN (who uses an infrequent

schedule) say that some kids regressed badly with chelation and didn't

recover. I thought about yelling out something about the dosing

schedule but talked myself out of it, lol.

Nell

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

[Guest guest]

I don't know what DMSA was used for here, in this country, but I know that it

was (probably still is) used in Europe to assess kidney function in case of

renal infection or who knows what other renal problems (I think it is actually

effective at this). I am not sure how it is given... I think one-dose. So

frequent dose schedule is completely out of the question.

Another problem I see is the fact that doctors are not chemists! They for sure

learned chemistry in school, but they forgot about it.

Valentina

> The infrequent dosing came from the original or label use of dmsa for lead

poisoning. The PDR lists every 8 hours. Using dmsa for mercury poisoning is

considered " off label " use. Lead, which is slooowly extracted has different

properties than mercury.

>

> Why it has taken so long for drs to figure out that more frequent dosing is

optimal, I have no clue. And the fact that some kids can take the 8 hour dosing

okay, just adds to the confusion.

>

> I, like you Nell, would think that drs would notice this, over time. But Dan!

is a powerful entity and look how anyone who insists that the more frequent

dosing is necessary (Andy) gets treated. They don't let you play anymore if you

don't play by their rules. This sends a powerful message to anyone else that you

better stay in line. Most do not have the moral conviction/courage to buck the

system.

>

>

[Guest guest]

>

> > With that said, I don't find the situation confusing in the

> > way that you seem to (at least if I'm understanding you

correctly).

> > DMSA and DMPS have been used for years and years with

> > various infrequent timings. It is taught that way by

> > *everyone* teaching anything about it, except for Andy

> > or people who learned it from Andy

>

> What I wonder is how that practice (infrequent dosing) ever came

about

> in the first place. Isn't dosing on the half-life pretty standard

for

> medication? I remember when I was taking pain meds getting a stern

> talking-to that I should take the med by the clock and *not just

when

> I felt I needed it, because of the half-life. Same with other

meds.

SOME meds. Some kinds of meds it doesn't matter about spacing

it that way, or works some entirely different way.

> So

> why do chelators get a different protocol?

I don't know the initial origins, though it might be

interesting to know. I am wondering if it started with

single doses.

>

> The other thing I wonder is how many doctors doing chelation

started

> out with infrequent dosing but noticed some percentage of their

> patients didn't do well. Maybe not enough doctors are chelating

with

> not enough patients?

> It did give me a shock when I went to an autism

> conference and heard a well-known DAN (who uses an infrequent

> schedule) say that some kids regressed badly with chelation and

didn't

> recover. I thought about yelling out something about the dosing

> schedule but talked myself out of it, lol.

>

> Nell

>

You seem to be missing the fact that there are MANY other

possible explanations besides dose frequency. If I were

more organized (darn it) I could give you a post number

for where I wrote a list of some of the other possible

explanations that I have heard -- that is, not a list

of anything anyone could come up with, but rather things

that people do give some creedence to. I seriously suggest

that you go read some lists where Andy's method is not

particularly well liked, and the websites of some of

the other proponents of methods if you want to get some

ideas about this. Also maybe some books -- I have one

that speculates that the people who don't get better

have diverticulitis. Lack of minerals is big. There

are lots of explanations.

best regards,

Moria

[Guest guest]

>

> The infrequent dosing came from the original or label use of dmsa for

lead poisoning. The PDR lists every 8 hours. Using dmsa for mercury

poisoning is considered " off label " use. Lead, which is slooowly

extracted has different properties than mercury.

WARNING: I think for lead you also need to use DMSA every

4 hours. I would not recommend every 8 hours for any

purpose.

good wishes,

Moria

[Guest guest]

Hi Anita,

I got interested in this thread when I started to read some of the

responses. My doctor is helping me to chelate using Andy's protocol.

I am his one and only poisoned patient, I'm sure, so there's no point

asking him these questions.

So, what I have written below comes from my own head:

>

> I would like to ask a favour of all of those people using doctors to

> chelate. If your doctor recommended a dosing schedule that did NOT

> take into account the half-life of the chelator, I was hoping to get

> some information from your doctor, via you.

>

> These are some questions I'd like answered:

>

> 1. Are there studies to show that chelators do NOT drop metals?

>

No. Chelators do drop metals. Basically chelators will drop metals

because the chelator-metal reaction is reversible.

Doctors in general would not be able to answer this because they don't

remember chemistry, they don't have any time whatsoever to look up

studies, and they don't have the training needed to interpret studies.

> 2. If the half-life a chelator is 4 hours, would the chelator still

> be chelating as it normally can after 6 or 7 or more hours?

>

No

The concentration of chelator in the blood would have fallen

substantially at 6-7 or more hours, so there would be less chelation

going on.

Doctors would also have trouble with this question because they study

very little basic pharmacology (if any).

> 3. Why recommend every 8 hours for DMSA, for example, when that

> doesn't take into account the chelator's half life? Why not just

> give it once a day or in some other random pattern? Why choose

> every 8 hours if maintaining a steady level of chelator really isn't

> that significant?

>

The doctors who do give DMSA every 8 h are either going on the PDR

recommendations for lead or are just copy catting what some other

doctor says or does.

> My doctor has never chelated someone and is relying on my judgement

> so I cannot ask him these questions, but I would really like to hear

> some answers from other doctors. Of all the posts on this board

> (and others) dosing schedules is likely the most frequent. Most of

> us know why we dose the way we do, but of all the reading I've done

> of DAN! documents, I can't figure out why others are dosing the way

> they do.

>

There are a lot of things in DAN documents that don't make sense.

This is just one (very important one).

J

> If I get some helpful responses to this post, I'm going to try to

> pull it together in a file.

>

> Thanks so much,

> Anita

>

[Guest guest]

> > It did give me a shock when I went to an autism

> > conference and heard a well-known DAN (who uses an infrequent

> > schedule) say that some kids regressed badly with chelation and

> didn't

> > recover. I thought about yelling out something about the dosing

> > schedule but talked myself out of it, lol.

> >

> > Nell

> >

>

>

> You seem to be missing the fact that there are MANY other

> possible explanations besides dose frequency.

There may be many other possible explanations besides dose frequency

about why a serious regression could occur.

The basic chemistry of chelation is enough to know that regression is

most likely when large doses of chelator are used infrequently. The

real reports from real people confirm that this is so.

I continue to be completely gobsmacked that Andy seems to be the only

expert who understands this concept.

There may also be other problems that can lead to regression even when

the chelator is given at a suitable dose at the half life.

(inadequate bile flow is one that quickly comes to mind). The

existance of those other problems would not in any way negate the need

for frequent dosing.

As I see it

J

> If I were

> more organized (darn it) I could give you a post number

> for where I wrote a list of some of the other possible

> explanations that I have heard -- that is, not a list

> of anything anyone could come up with, but rather things

> that people do give some creedence to. I seriously suggest

> that you go read some lists where Andy's method is not

> particularly well liked, and the websites of some of

> the other proponents of methods if you want to get some

> ideas about this. Also maybe some books -- I have one

> that speculates that the people who don't get better

> have diverticulitis. Lack of minerals is big. There

> are lots of explanations.

>

> best regards,

> Moria

>

[Guest guest]

> You seem to be missing the fact that there are MANY other

> possible explanations besides dose frequency.

Oh, I'm not. At least I agree there are myriad reasons for not getting

better. But for regression *because of chelation? Wouldn't you say

infrequent/high dosing is a very common reason for that?

I seriously suggest

> that you go read some lists where Andy's method is not

> particularly well liked,

I've done that. What I saw was a fairly high percentage of kids who

got worse doing chelation. I did not get the idea that people were

judging Andy's method by its science or success rate, but by

personality, or because they valued their own group affiliation, or

because nighttime doses are too much of a PITA.

>Also maybe some books -- I have one

> that speculates that the people who don't get better

> have diverticulitis. Lack of minerals is big. There

> are lots of explanations.

I agree recovery can have a LOT of components. There are plenty of

people here who have done well over 50 rounds and their kids aren't

close to recovery yet. So I didn't mean to imply that dosage timing

was like a magic wand, only that *not to dose frequently increased the

chance of regression during chelation.

Nell

[Guest guest]

Moira, I think, although wouldn't swear to it that if you are using dmsa just

for the lead, 8 hours would be fine. I read an explanation of why this is so

awhile back, but can't remember why. I think Andy even commented on it one time.

Almost none of our kids, at least that I have ever heard of have just lead, so

really not germaine, here.

[ ] Re: question for people using doctors to chelate

>

> The infrequent dosing came from the original or label use of dmsa for

lead poisoning. The PDR lists every 8 hours. Using dmsa for mercury

poisoning is considered " off label " use. Lead, which is slooowly

extracted has different properties than mercury.

WARNING: I think for lead you also need to use DMSA every

4 hours. I would not recommend every 8 hours for any

purpose.

good wishes,

Moria

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

[Guest guest]

>

> > You seem to be missing the fact that there are MANY other

> > possible explanations besides dose frequency.

>

> Oh, I'm not. At least I agree there are myriad reasons for not

getting

> better.

That is not what I'm talking about. I am not writing about

what my beliefs are about why people do or do not get better.

Not at all.

Let me try saying it another way: make a list of all the

chelation theories you can find, all the doctors who " do

chelation " , and any other source you want that has some

opinions in this area.

Now elimiate anyone who says " everyone gets well and there

are no bad results " .

Now you have a list of people with any viewpoint on how to

chelate and they all think there are some cases of regression

or bad results.

Now, ask those people what accounts for some getting better

and some getting worse. THIS is the list I'm talking about.

It is not like they are going to all say " oh, I think it

is due to infrequent dosing. " They have many other ideas.

They do many other things to attempt to avoid the bad

reactions.

> But for regression *because of chelation? Wouldn't you say

> infrequent/high dosing is a very common reason for that?

I'm not talking about what ****I**** would say. I'm talking

about the number and types of theories there are out there.

If you tell someone " I had a DMPS injection and it was just

horrid -- I was depressed and my hair fell out and I couldn't

work for a year afterward " -- chances are good the response

would be something like " did you get IV minerals the same

day " or " how much vitamin C were you taking? " or " did you

do the special emotional clearing technique first? "

Now, it is possible, Nell, that I misunderstood you - but

I thought your point was that if doctors were seeing bad

reactions then OF COURSE they would or should see that this

is due to infrequent dosing. My point is that there are

many theories for what causes it. And I do not mean just

many things someone COULD come up with, I mean things that

people do believe may explain it. This doesn't mean I agree

with these theories -- but it does mean that someone who

is wondering what the heck is up with the kids who get

worse may very well encounter a number of other theories,

ideas, beliefs which makes it a bit less likely that they

run directly to " oh, of course this proves that that darned

dose timing thing is the problem " .

best,

Moria

[Guest guest]

> There may also be other problems that can lead to regression even

when

> the chelator is given at a suitable dose at the half life.

> (inadequate bile flow is one that quickly comes to mind). The

> existance of those other problems would not in any way negate the

need

> for frequent dosing.

Nor am I saying they would, .

That isn't my point at all.

My point is that someone who has sucessfully figured out that

there is a problem with people getting worse instead of better

has a whole nother set of things to evaluate. They may or

may not encounter infrequent dosing as an explaination.

They may or may not encounter many other going theories.

They may try to come up with their own scheme.

That is my point.

It is not just a direct line from " some people are getting

worse " to " must be the dose timing " .

Moria

[Guest guest]

> This doesn't mean I agree

> with these theories -- but it does mean that someone who

> is wondering what the heck is up with the kids who get

> worse may very well encounter a number of other theories,

> ideas, beliefs which makes it a bit less likely that they

> run directly to " oh, of course this proves that that darned

> dose timing thing is the problem " .

OK, now I understand what you're saying. I think, lol. That what might

seem an obvious place to look for an explanation for regression is not

so obvious because there are many theories out there to explain the

regression. I suppose my hope is that the doctors having high rates of

regression would work their way through the possibilities and

eventually get to dosing frequency. And of course some of those other

things, like mineral and antioxidant levels, could help as well.

Nell

[Guest guest]

> > There may also be other problems that can lead to regression even

> when

> > the chelator is given at a suitable dose at the half life.

> > (inadequate bile flow is one that quickly comes to mind). The

> > existance of those other problems would not in any way negate the

> need

> > for frequent dosing.

>

> Nor am I saying they would, .

> That isn't my point at all.

> My point is that someone who has sucessfully figured out that

> there is a problem with people getting worse instead of better

> has a whole nother set of things to evaluate. They may or

> may not encounter infrequent dosing as an explaination.

> They may or may not encounter many other going theories.

> They may try to come up with their own scheme.

> That is my point.

>

> It is not just a direct line from " some people are getting

> worse " to " must be the dose timing " .

>

I think I get your point now.

So we get back to the original question which is something like 'what

does it take for doctors, and others involved with chelation, to see

that chelators need to be dosed at the half life'.

J

> Moria

>

[Guest guest]

>

> > This doesn't mean I agree

> > with these theories -- but it does mean that someone who

> > is wondering what the heck is up with the kids who get

> > worse may very well encounter a number of other theories,

> > ideas, beliefs which makes it a bit less likely that they

> > run directly to " oh, of course this proves that that darned

> > dose timing thing is the problem " .

>

> OK, now I understand what you're saying. I think, lol. That what

might

> seem an obvious place to look for an explanation for regression is

not

> so obvious because there are many theories out there to explain the

> regression.

exactly!

> I suppose my hope is that the doctors having high rates of

> regression would work their way through the possibilities and

> eventually get to dosing frequency.

Well, I think it is reasonably likely that any given doctor

will hear of the dose timing issue. It is fairly well known

in a sort of " around the edges " kind of way. Especially if

one is out reading a wide range of things one will hear of

it. Otherwise less likely, although some patients may bring

up the issue.

Let me also just note here (lest the last paragraph give the

wrong impression) -- that it is STILL a big giant leap to go

from hearing the theory and considering it to thinking it is

a key and important variable. There are no studies, and it

takes persistent dedicated effort to find even anedotal

evidence. It is far from a no-brainer.

None of that makes the theory wrong.

> And of course some of those other

> things, like mineral and antioxidant levels, could help as well.

yes, they might. I sometimes wonder about the other theories

of how to avoid bad reactions -- because apparently some

practitioners really believe, for example, that doing x/y/z

along with IV DMPS will make it safe. But, since we are

unlikely to have a whole bunch of studies of 18 different

processes, I guess I won't really find out.

Moria

[Guest guest]

> > > There may also be other problems that can lead to regression

even

> > when

> > > the chelator is given at a suitable dose at the half life.

> > > (inadequate bile flow is one that quickly comes to mind). The

> > > existance of those other problems would not in any way negate

the

> > need

> > > for frequent dosing.

> >

> > Nor am I saying they would, .

> > That isn't my point at all.

> > My point is that someone who has sucessfully figured out that

> > there is a problem with people getting worse instead of better

> > has a whole nother set of things to evaluate. They may or

> > may not encounter infrequent dosing as an explaination.

> > They may or may not encounter many other going theories.

> > They may try to come up with their own scheme.

> > That is my point.

> >

> > It is not just a direct line from " some people are getting

> > worse " to " must be the dose timing " .

> >

>

>

> I think I get your point now.

Good, because I am NOT saying the other theories are right.

>

> So we get back to the original question which is something

like 'what

> does it take for doctors, and others involved with chelation, to

see

> that chelators need to be dosed at the half life'.

I think the question this started with is something like

" how do doctors explain NOT doing it with frequent dose timing? "

I think the best way I may be able to explain, really, is

to say: why could possibly cause a doctor use frequent dose

timing?

I mean, really, go through it -- assume you are a doctor

and you've heard of this whole thing, and perhaps you even

think it is a decent theory. Now, at what point would you

be willing to tell people they must do it this way?

What kind of evidence would you want or require, and does

that evidence exist -- and what sort of effort would it

require.

My point is that in most cases it would take a huge

amount of effort, it is NOT obvious and so on.

Moria

[Guest guest]

> > > My point is that someone who has sucessfully figured out that

> > > there is a problem with people getting worse instead of better

> > > has a whole nother set of things to evaluate. They may or

> > > may not encounter infrequent dosing as an explaination.

> > > They may or may not encounter many other going theories.

> > > They may try to come up with their own scheme.

> > > That is my point.

> > >

> > > It is not just a direct line from " some people are getting

> > > worse " to " must be the dose timing " .

> > >

> >

> >

> > I think I get your point now.

>

> Good, because I am NOT saying the other theories are right.

>

> >

> > So we get back to the original question which is something

> like 'what

> > does it take for doctors, and others involved with chelation, to

> see

> > that chelators need to be dosed at the half life'.

>

> I think the question this started with is something like

> " how do doctors explain NOT doing it with frequent dose timing? "

>

Yes, yes, that's more like it ; )

> I think the best way I may be able to explain, really, is

> to say: why could possibly cause a doctor use frequent dose

> timing?

Pharmacology textbooks tell doctors to dose drugs on the half life.

> I mean, really, go through it -- assume you are a doctor

> and you've heard of this whole thing, and perhaps you even

> think it is a decent theory. Now, at what point would you

> be willing to tell people they must do it this way?

When I read Andy's books.

> What kind of evidence would you want or require, and does

> that evidence exist -- and what sort of effort would it

> require.

>

> My point is that in most cases it would take a huge

> amount of effort, it is NOT obvious and so on.

>

Well, I've only been following this stuff for a year. It is obvious

to me. It was obvious to both my husband and my doctor as soon as I

started talking about it (but they both have studied pharmacology).

J

> Moria

>

[Guest guest]

> > I think the best way I may be able to explain, really, is

> > to say: why could possibly cause a doctor use frequent dose

> > timing?

>

>

> Pharmacology textbooks tell doctors to dose drugs on the half life.

>

>

>

> > I mean, really, go through it -- assume you are a doctor

> > and you've heard of this whole thing, and perhaps you even

> > think it is a decent theory. Now, at what point would you

> > be willing to tell people they must do it this way?

>

>

>

>

> When I read Andy's books.

Well, I suppose there is always someone who is POSITIVE based on

a book, but personally I would not be. I got the idea right

away, and could see that it is an idea that COULD be correct.

It's a fine theory, but that, for me, doesn't make it right,

doesn't make me sure, and doesn't give me tons of confidence

in its truth or superiority.

> > What kind of evidence would you want or require, and does

> > that evidence exist -- and what sort of effort would it

> > require.

> >

> > My point is that in most cases it would take a huge

> > amount of effort, it is NOT obvious and so on.

> >

>

>

>

> Well, I've only been following this stuff for a year.

and would you expect every doctor to follow it for a year?

> It is obvious

> to me. It was obvious to both my husband and my doctor as soon as

I

> started talking about it (but they both have studied pharmacology).

That is nice!

Moria

[Guest guest]

,

After sleeping on this, I have another question about this,

this morning --

> > I think the best way I may be able to explain, really, is

> > to say: why could possibly cause a doctor use frequent dose

> > timing?

>

>

> Pharmacology textbooks tell doctors to dose drugs on the half life.

Surely no one (pharmacology texts, schools, docs, you name it)

says to dose on the half life when the half life is 3 hours.

I have never heard of anyone waking up at night to take,

say, blood pressure medication.

Have you?

I realize this is a deeply irritating point, since many of

us (me included) believe that the timing is important -- and

intellectually it is the same issue for 8 hours as for 3.

But I think it really is a different issue on some levels.

FOr DMPS, I think it would be a SOMEWHAT simple (at least

" simplER " ) issue for doctors to adopt and recommend 8 hour

dose timing.

For ALA, which is actually the important one in most cases,

it is another thing.

And not just for doctors. For anyone. It is one thing to

feel strongly enough to do something every 8 hours. It is

a whole nother level of belief to be willing to wake up at

3 am, in my opinion.

Again, rail all day about how this should not be an issue.

If you want to wake ME up at 3 AM, it is an issue.

Now, none of this is in any way an endoresement of

infrequent doses. Not at all. It is a statement that, again,

it makes sense to me that (many) people have to be deeply

convinced that frequent dosing is BETTER in order to do

it -- since doing it is, indeed, HARDER.

I have personally struggled a very long time with these issues --

I do not say this just " in theory " .

good wishes,

Moria

[Guest guest]

Except that when the medicine label says " Take 3 x a day, they really mean take

" every 8 hours, which people never do, they usually take it at breakfast, lunch

and dinner.

And 4 x a day, really means every 6 hours, but people don't do that either.

[ ] Re: question for people using doctors to chelate

,

After sleeping on this, I have another question about this,

this morning --

> > I think the best way I may be able to explain, really, is

> > to say: why could possibly cause a doctor use frequent dose

> > timing?

>

>

> Pharmacology textbooks tell doctors to dose drugs on the half life.

Surely no one (pharmacology texts, schools, docs, you name it)

says to dose on the half life when the half life is 3 hours.

I have never heard of anyone waking up at night to take,

say, blood pressure medication.

Have you?

I realize this is a deeply irritating point, since many of

us (me included) believe that the timing is important -- and

intellectually it is the same issue for 8 hours as for 3.

But I think it really is a different issue on some levels.

FOr DMPS, I think it would be a SOMEWHAT simple (at least

" simplER " ) issue for doctors to adopt and recommend 8 hour

dose timing.

For ALA, which is actually the important one in most cases,

it is another thing.

And not just for doctors. For anyone. It is one thing to

feel strongly enough to do something every 8 hours. It is

a whole nother level of belief to be willing to wake up at

3 am, in my opinion.

Again, rail all day about how this should not be an issue.

If you want to wake ME up at 3 AM, it is an issue.

Now, none of this is in any way an endoresement of

infrequent doses. Not at all. It is a statement that, again,

it makes sense to me that (many) people have to be deeply

convinced that frequent dosing is BETTER in order to do

it -- since doing it is, indeed, HARDER.

I have personally struggled a very long time with these issues --

I do not say this just " in theory " .

good wishes,

Moria

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

[Guest guest]

> Surely no one (pharmacology texts, schools, docs, you name it)

> says to dose on the half life when the half life is 3 hours.

At the risk of beating this dead horse some more , I'd ask, how many

drugs have a half-life of only 3 hours, and wouldn't it depend on what

they do? Some medications need to be stronger at certain times of the

day than others to mimic body processes (I'm thinking of hormones). So

surely in deciding how often to dose there would naturally be some

consideration of what varied blood levels would mean, and whether it

mattered either way?

Nell

[Guest guest]

Moria,

I'm not arguing here. I'm trying to figure out what helps people

to understand this issue.

>

> ,

>

> After sleeping on this, I have another question about this,

> this morning --

>

> > > I think the best way I may be able to explain, really, is

> > > to say: why could possibly cause a doctor use frequent dose

> > > timing?

> >

> >

> > Pharmacology textbooks tell doctors to dose drugs on the half life.

>

> Surely no one (pharmacology texts, schools, docs, you name it)

> says to dose on the half life when the half life is 3 hours.

When the half life is short, and if the drug is profitable, a time

release form is usually available. Pain medications, for example,

come in time release forms.

(ALA apparently does come in 'time release' forms but the ones that

have been tested do not acually 'time release' (ie even though they

say they are time release they actually release quickly). Because no

company can expect to make huge profits on ALA, and the chelation

ability of ALA is not widely understood, there is no incentive to come

up with a time release form that actually works.)

What the textbooks say is that multiple dose administation (what we

are calling frequent dose) should be used with drugs with a narrow

therapeutic range. When the blood level goes too low the drug will be

ineffective and if the blood level goes too high it will be toxic.

The window in the middle is the therapeutic range. It makes sense to

me that chelation fits this model. It not only fits, but I see it as

imperative to keep the blood levels fairly constant because when the

blood levels are high, more mercury gets chelated and it is the

toxicity of the **mercury or metal* attached to the chelator that sets

the upper limit on the therapeutic range most of the time. This is

what makes it even more important to use the multiple dose

administration for chelation as compared to any other application that

I can think of.

If I really thought it might help to make up a file of what it

actually says in lots of pharmacy textbooks, I might just do that.

> I have never heard of anyone waking up at night to take,

> say, blood pressure medication.

> Have you?

>

Maybe blood pressure medications have a longer half life. I have

heard of people waking up at night to take pain medication. I can

remember nurses waking me at night for medication (whatever it was)

when I was in the hospital.

> I realize this is a deeply irritating point, since many of

> us (me included) believe that the timing is important -- and

> intellectually it is the same issue for 8 hours as for 3.

>

> But I think it really is a different issue on some levels.

>

> FOr DMPS, I think it would be a SOMEWHAT simple (at least

> " simplER " ) issue for doctors to adopt and recommend 8 hour

> dose timing.

>

> For ALA, which is actually the important one in most cases,

> it is another thing.

>

> And not just for doctors. For anyone. It is one thing to

> feel strongly enough to do something every 8 hours. It is

> a whole nother level of belief to be willing to wake up at

> 3 am, in my opinion.

>

Yes, I agree. If a person understands what the consequences are of

not taking the dose every 3 h, then they may be willing to wake up and

take it.

The people I know in constant pain are quite willing to take their

pain medication on a strict schedule because the consequence of more

pain is difficult to cope with.

In the case of ALA I am quite willing to wake up every 3 h because I

know that the consequence of mercury redistribution will make my

condition worse, likely permanently worse, and it's already worse

enough. When I simply couldn't wake up every 3 h I wasn't willing to

take ALA at all.

In the case of my daughter I would rather not chelate her than give

her doses of ALA at any interval longer than 3 h because the

consequences of redistribution would make her condition worse and she

would have to live with those consequences for the rest of her life.

There are case reports from adults who use chelators in high

infrequent doses, get fairly messed up, and then chelate with the same

chelator and low frequent doses and get better. Recently there was a

person on the adult metal group who reported this exact experience

with ALA. Perhaps collecting those type of reports would help people

to understand. Those are the reports that catch my attention.

The people who already have the preconceived notion that

redistribution is a 'good thing' (this is a rumour that Buttar has

been spreading, as far as I can tell) would even have more difficulty

grasping the possiblity that redistribution is actually toxic damage

from mercury, not such a good thing, best avoided, and can be avoided

by frequent (multiple) dosing.

> Again, rail all day about how this should not be an issue.

> If you want to wake ME up at 3 AM, it is an issue.

>

And me as well.

It is also an issue if the consequence of not waking up might be ME in

a wheel chair or worse. Keeping myself out of a wheel chair seems to

be one of my strongest passions.

Best

J

> Now, none of this is in any way an endoresement of

> infrequent doses. Not at all. It is a statement that, again,

> it makes sense to me that (many) people have to be deeply

> convinced that frequent dosing is BETTER in order to do

> it -- since doing it is, indeed, HARDER.

>

> I have personally struggled a very long time with these issues --

> I do not say this just " in theory " .

>

> good wishes,

> Moria

>

[Guest guest]

>

> > Surely no one (pharmacology texts, schools, docs, you name it)

> > says to dose on the half life when the half life is 3 hours.

>

> At the risk of beating this dead horse some more , I'd ask, how many

> drugs have a half-life of only 3 hours, and wouldn't it depend on what

> they do? Some medications need to be stronger at certain times of the

> day than others to mimic body processes (I'm thinking of hormones). So

> surely in deciding how often to dose there would naturally be some

> consideration of what varied blood levels would mean, and whether it

> mattered either way?

>

> Nell

>

That is what I've been saying all along--- SOME drugs are

dosed on half-life, others are dosed completely differently

I think. But my question is still a good one (I think):

are there any cases where drugs that are dosed on half-life

and you are expected to take them at 4 am?

Moria