Re: Worried now - no mercury in urine with chelation! - Darren.

[Guest guest]

I'll add what I can offer on this. I think we're going to need to go to the

literature to really understand it.

....

Posted by: " Darren " xbluehens@... xbluehens

Thu Jun 12, 2008 11:31 am (PDT)

>>The urine tests are not reliable.

>>

>Okay, but why?

>I have learned from this group and Andy Cutler's work that using DMSA

(or DMPS) provoked urine challenge tests are unreliable for

diagnosing mercury toxicity. This makes sense to me, since a person

whose organs or brain are highly toxic may have little or no mercury

show up on the test,

That's true. Also, these two chelators seem to get access to different organs,

" compartments " of the body, at different times, and while they are there, they

seem to remove different metals (from the intracellular spaces) at different

times. People who have done serial tests sometimes see one kind of metal after

another coming out, in no obvious order.

Andy has mentioned that he " thinks " that what DMSA does (I don't know if he

thinks this about DMPS too) is to clean off the transport molecules on the

surface of the cells, so that they can start working again. I take it that he

means that once the mercury that is clogging up the transport system is

removed, then the cells will begin to transport some stuff out (causing them to

get clogged again). That might be arsenic or antimony, it might be lead or it

might be mercury.

>while someone with no toxicity

I think you mean " no obvious recent exposure "

>may have off-the-charts mercury levels

" High " - I'm not sure " off the chart " . I know that Andy wont' even look at a

collection unless it's 24 hr and the creatinine levels come out right; but if

that is the case he _does_ look at them.

>(typically due to a current source of exposure, such as amalgams still in the

mouth).

Well, in that case yes, you may get a lot coming out for that reason ...

>But is not talking about using the DMSA challenge test for

diagnosis. She was simply trying to verify that mercury is being

excreted during low-dose, high frequency chelation. (Correct me if

I'm wrong, .)

I'm not remembering now. Did she test for other metals? Also, how long ago

were the amalgams removed? Is it possible that what she's got left is all

intracellular and behind the BBB? If so, then you wouldn't expect DMSA to be

removing much in any case. If not, then I'm not quite sure - as I say, I think

Andy does use urine tests, but I gather that interpretation is not

straightforward, for at least the reasons I mentioned above.

>One way to verify that mercury is being excreted during chelation is

to wait 1-2 years until your symptoms start going away (or it could

be less time, if you're lucky).

Well, that's not typically what you do. You initially see couple of months of

improvement, then you see a long stall phase of on the order of 6 months,

followed by slow improvement. That's the " natural history " of this process.

Also, you see symptoms wax and wane on round. I was a pretty toxic case, but I

got a notiecable improvement (it was fairly sudden) at 12 mo.

>Maybe that's the only way. But for many of us, who have tried countless

therapies for many years, without getting any better, committing to low-dose

chelation (or any other approach) for 1-2 years without any empirical evidence

that it is doing what it's supposed to, is a very difficult pill to swallow

(pun intended).

I'll admit that I hadn't tried a zillion things before I got here. I did, on

the other hand, look at a zillion things and decide that I _didn't_ want to do

them!

I do think you're seeing more than this, right Darren? You are seeing

something of this " natural history " play out, aren't you? Did you see any of

the positive effects at the beginning? Have you seen any of the adjunctive

therapies help?

I'll add one thing about my own experience, that had helped me be confident

about what I was doing. I've mentioned that I had spent a couple of years

before chelation in a state of " manic exhaustion " - it was really crazy making.

I have also been aware enough of my subjective experience, that when I

started chelation and got the so-called " positive effects " that I sometimes see

other people happy about, I found I was not so happy. It just felt to me like

I was poisoned again, just now it was the way I had been before the exhaustion

began to mix with the hypo-mania. I could see how some might like it, but I

was aware enough of what mercurial experience was, that I didn't want to go

back there. When, at about 3 months or so, I suddenly became deathly tired,

the " stall period " , I actually was enormously relieved. The mind-splitting

manic-exhaustion was no longer there, the whole thing felt more like what was

really going on underneath. I know other people complain, but I was very

appreciative, and certain that I was on the right track. It felt like, ok,

this is what has been _really_ going on with me. Now, it appears I have the

chance to dig myself out of this hole.

>Sure, there are signs that chelation is happening --

namely, flare-up of symptoms, feeling better or worse on/off round --

but this is indicative of mercury redistribution, not mercury

elimination.

Watch and see if there is any cumulative change. I described what mine was

like.

>I ran the same type of test as a few months ago. (Mine were

24-hour tests. Was your test also a 24-hour test, ?) I ran

it three ways -- baseline (no chelation), 25mg DMSA every 3 hours,

and 25mg DMSA + 50mg ALA every 3 hours. Results: No detectable

mercury on all three tests. I was very surprised, especially because

of the third test, which involved ALA (essentially following the test

outlined on Page 180 of AI).

Darren - we did talk about your test results. As I remember, the creatinine

levels were off. As I mentioned, Andy does look at these tests _if_ the

creatinine levels come out right (and then how he interprets or uses the

results, I am not completely clear on, given the general lack of norms).

Otherwise, he takes that as an indication that the samples were mis-handled.

(That's not something that's unusual in labs.)

As for 's case, I don't know.

>So why did our test results show no mercury? It seems to me there

are several possibilities in 's case:

>(A) DMSA IS, indeed, leading to increased urinary excretion of

mercury, but it just didn't happen to excrete much/any mercury during

that particular day (day-to-day random variation simply too high to

make this a reliable test)

-> But her blood test results seem to indicate mercury was

mobilized, so if mercury was mobilized, why was none excreted?

-> And is there any hard data on this " high random variation from

day to day " hypothesis? This theory has been given before, but I

hope it's not just a convenient way to dismiss results we may not

understand.

Don't know. I'd start with comparing the creatinine levels, before I went too

far theorizing about this. After that, I'd try to see how these tests have

been discussed in the process of learning that has taken place on the AM list

from 1999 to the present.

>( Perhaps the acidity of the urine is too high, causing metals

to " drop off " in the kidneys before being excreted.

-> Andy discusses this on page 238 of HTI. Does this mean that

chelation through the urinary route won't work for people whose urine

is too acidic? I have no idea how important this issue is.

I know that it is critial for some metals (check cadmium, where I believe he

mentions that it is a necessity). My unerstanding is that it would be better

for mercury and lead, but it is not critical.

>I've

tried to raise the issue before and also emailed Andy, but I have not

had any resolution on the importance of urine acidity to successful

chelation.

>(D) Urine volume was so high it diluted the mercury too much, such

that significant mercury was indeed coming out via urine but was not

detected

-> In my case, DDI told me that my urine volume during the 24 hour

tests was noticeably above average. So maybe it was too dilute to

detect mercury in my case.

I doubt it. You could check this by checking the level of significance in the

results reported. If the results were correct to 1%, then a factor of 10

dilution would still give you results correct to 10%.

>(E) is not mercury toxic, symptoms are caused by something

else, and the hair test results and other evidence is just

coincidental.

-> In my case, I am convinced that the probability of (E) is close

to zero. Not sure about your situation, , but it's always

worth considering all possibilties.

Yes. I would wonder if she is going through the natural history of this

process like the rest of us.

>(F) Extremely unlikely: DDI botched this one and sent the wrong

results.

That one is not so extreme. Some tests are more commonly screwed up than

others. The porphyrin test is _very_ commonly messed up. The urine test I

believe is reasonably common.

>For my case, where ALA was also used there are other possibilities:

>(G) Most likely: My body burden is low, but ALA is indeed working,

but through the biliary route almost exclusively

>© Not too likely: Perhaps ALA doesn't work all that well in some

people, and they need to use another chelator that crosses the BBB

instead

-> For me, ALA certainly mobilizes mercury (as I've experienced post-

chelation redistribution effects), but I wish I could know whether it

is helping to eliminate it or not. I think my liver is in decent

shape and I'm very " regular " , so I'm hoping it's doing the trick.

I think that is the advantage of my having spent years looking at my own

internal experience, in the process that lead to my becoming a psychologist. I

could see the process and know that it looked right.

Also, I had met Andy. I had pushed him on some things that weren't quite right

and found that he wasn't dogmatic or rigid about it. He was willing to show

his cards. I couldn't become a chemist _too_, so to some extend I had to

depend on the person.

>Maybe a fecal metals test is more reliable for tracking whether

chelation is facilitating the removal of metals when using ALA. Or

maybe there is no reliable way to do it.

I don't know. Does he discuss it in AI?

>As fantastic as Andy's work is, there are still many unknowns, and

this issue seems to be one of them.

I doubt it. I think this is just one we dont' know. I think there is a lot

that we could find out if we were to consider reading - both AM and the

literature.

>It is assumed that low-dose, high frequency chelation with ALA " works " for

everyone, provided the body's own excretory functions are in reasonably good

working order. I truly hope that's the case.

I think the point has always been that _if_ you are going to chelate, then this

is the safest approach. Other than chelation, I'm not sure I see other people

getting better, though.

I know the way Andy has put it is that if this doesn't work, then it makes

sense to try other techniques, even if they may have more risk associated with

them.

>For now, I continue to chelate with ALA (and occassionally DMSA)

based on faith. Faith that it's actually doing what it's supposed

to, not just mobilizing and redistributing mercury around. (I hope a

year from now -- or maybe sooner! -- I'll know for sure.) The faith

comes from Cutler's work, his personal experience, and the shared

experiences of (complete strangers on) the internet. Yes, they are

complete strangers, but when you read the same kinds of success

stories over again, it really helps. Of course, not all are success

stories, as some report chelating for a long time with no progress,

or even worsening of symptoms or presentation of new symptoms.

Faith, of course, is only as good as the object in which it is

placed.

Well - I wouldn't use that word, that's a bit religious for me. I'd say thatI

used a combination of: (1) The stock of knowledge that I already had. If

anything was inconsistent, then I'd have some basis to not want to go this

route. (1a) basic logic as applied to the knowledge that I didn't have - as a

first step, is the discourse coherent? I mean, there are a lot of supposed

healers that are just plain loopy! And (2) Some sense of the character of the

person involved. This one took me a _long_ time. I sat and watched the lists

for 2 years before making the plunge.

>It would be great to have some kind of empirical test to reliably

indicate whether mercury is being excreted while chelating.

>With all that said, I may actually be seeing some slight progress in

my health due to chelation. Too early to tell, since my symptoms

fluctuate so much. But I'm hopeful and encouraged. At least today I

am, when the brain fog/fatigue is present but not out of control.

But with mercury toxicity, and especially chelation, each day is like

a box of chocolates...

A box of chocolates???

That's not quite how I'd describe it ...

>Darren

I'll add, Darren, that I've made so much progress, that I don't feel the same

kind of pressure that you do to know how it all works. I am interested, mostly

because I am interested in what I might be able to contribute to others who are

struggling to get out of the situation they are in - and because it's important

to know something about the strengths and limitations of the tools. If you

ever get to the point where you want to start digging up old posts and the

literature discussed there, and begin a conversation, I'd be interested in that

- but I know you have other responsibilities in your life.

Dave.