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Old 01-07-2010, 01:21 PM   #1
Clodfobble
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The big question now, of course, is whether there is an ongoing source of Lead in his environment, or if this is just old buildup from years of being unable to properly metabolize and excrete this metal. We've begun testing things in the house with at-home kits, like all his crappy toy cars made in China, and the bathtub, and the dishware, but so far nothing's come up positive. Our house is only 10 years old, so we're pretty sure it's old buildup and not a recent source, but we're going to check everything to be sure.
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Old 01-08-2010, 07:25 AM   #2
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Interesting data.

You and your spouse share his environment, but presumable process metals better. For diagnostic purposes, would it be time and cost effective to do a similar test on yourselves to get a baseline reading of your environmental intake? (My experience with consumer-grade home test kits has been pretty lackluster.)
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Old 01-08-2010, 08:33 AM   #3
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Time-wise it could be done over a weekend, no problem, but cost-wise would be over $100 for each of us. That's not too huge in the grand scheme of the kids' medical care, but realistically we don't share his environment as much as one might think. We sleep in our bed, not his (different mattresses purchased almost 10 years apart,) we don't go to his school each day, we don't handle his toys all day, and we don't put our hands in our mouths, which is the primary way this stuff is going to be getting into him.

Hypothetically, if we found abnormal quantities of lead in our urine, that would still leave us with needing to find the source in the environment somehow. And if we didn't, we'd still have to check all the parts of his environment that we don't come into contact with to be sure. Really the best way of knowing if it's in his environment is going to be if the amount the drug excretes goes down on subsequent doses. I know, for example, one mother whose son only needed 3 doses, then the levels went down, and though they've continued to test periodically once a year or so, his levels have not gone back up. On the other hand, I know a mother who continued regular doses for years, because her daughter's levels never went down. They live in an old house and confirmed the presence of lead not just in the paint, the bathtub, and the plumbing pipes, but quite a fair amount that had leached into the soil as well. So they replaced the tub, uprooted the home garden up into large pots with purchased soil, and put filters on all the faucets and showerheads in the house... but they can't afford to strip off all the old paint, nor can they afford to move, so in the meantime the drugs are going to forever be playing catchup. Those parents didn't test themselves, but they did get their neurotypical daughter tested to make sure her levels were normal, and they were.
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Old 01-08-2010, 09:44 AM   #4
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Orac on this use of chelation:

Quote:
The second rationale is a dubious, unreliable, and unproven diagnostic test in which children are given chelating agents and then the levels of mercury and other metals are measured in urine samples. Surprise, surprise! These levels are virtually always elevated (mainly because that's what chelation therapy does, binds metals and leads to their excretion in the urine, even in normal children). These "provoked urinary toxic metals tests" are virtually guaranteed to show "elevated" levels of various metals, particularly because often the "normal" ranges used for these tests are based children who have not recently had a chelating agent administered:
Nobody knows what normal results of this test would look like, toxicologists say. There is no accepted reference range. Nonetheless, the lab sends back color-coded charts that show alarming peaks of metals graphed against a meaningless reference range that was calculated for people who had never been given a chelator.

"That is exactly the wrong way to do it," said Dr. Carl R. Baum, director of the Center for Children's Environmental Toxicology at Yale- New Haven Children's Hospital. "There is a whole industry that preys on people's fears of heavy metal poisoning."

Though most labs note that the reference range used is for unprovoked results, the apples-to-oranges comparison still can set off panic in parents.
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Old 01-08-2010, 10:02 AM   #5
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Quackwatch on the use of this exact Doctor's Data report, and the disclaimer at the bottom that Clod did not include (I'm not saying intentionally):
Quote:
When testing is performed, the levels are expressed as micrograms of lead or mercury per grams of creatinine (µg/g) and compared to the laboratory's "reference range." Several years ago, a well-designed experiment tested workers who had industrial exposure to mercury. The researchers found that provocation with DMSA raised the 24-hour average urine mercury level from 4.3 µg/g before chelation to 7.8 µg/g after chelation [2]. Because most of the extra excretion occurs toward the beginning of the test, it is safe to assume that the provoked levels would have been 2-3 times as high if a 6-hour collection period had been used.

Practitioners who use the urine toxic metals test typically tell patients that provocation is needed to discover "hidden body stores" of mercury or lead. However, the above experiment proved that provocation raises urine levels as much in exposed workers as in unexposed control subjects and that rise is temporary, should be expected, and is not evidence of "hidden stores."

Doctor's Data uses a reference range of less than 3 ug/g for mercury and 5 ug/g for lead. Standard laboratories that process non-provoked samples use much higher reference ranges, which means that if all other things were equal, Doctor's Data is far more likely than standard labs to find "elevated" levels. But that's not all. A disclaimer at the bottom of the above lab report states—in boldfaced type!—that "reference ranges are representative of a healthy population under non-challenge or nonprovoked conditions." In other words, they should not be applied to specimens that were obtained after provocation. Also note that the specimen was obtained over a 6-hour period, which raised the reported level even higher.
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Old 01-08-2010, 07:54 PM   #6
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Are you a fan of Stephen Barrett?
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Old 01-08-2010, 11:47 PM   #7
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Are you a fan of Stephen Barrett?
Never heard of him before.
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Old 01-09-2010, 01:46 AM   #8
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"The chelate that is thus formed is nontoxic and can be excreted in the urine, initially at up to 50 times the normal rate."
Not unless there's lead there to get, and if it's 50 times there has to be a shitload of it.
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Old 01-08-2010, 10:27 AM   #9
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Quote:
Originally Posted by Undertoad
The researchers found that provocation with DMSA raised the 24-hour average urine mercury level from 4.3 µg/g before chelation to 7.8 µg/g after chelation [2]. Because most of the extra excretion occurs toward the beginning of the test, it is safe to assume that the provoked levels would have been 2-3 times as high if a 6-hour collection period had been used.
My understanding is that the difference in volume of a 6-hour versus 24-hour collection is accounted for. But regardless, the main point seems to be that an average person will go about 50% out of range (at least for mercury) when provoked. And indeed, my doctors are not concerned about the "elevated" levels that are only slightly out-of-range, like Cadmium for example, or even 2-3 times out of range. They are concerned about the one that is 6.6 times out of range.

Quote:
Originally Posted by Undertoad
Standard laboratories that process non-provoked samples use much higher reference ranges,
And what would that reference range for lead be? Is it less than 33 ug/g?

It is certainly possible that some people could take what amounts to an average provoked sample, and panic and be convinced (or convince themselves) that they need ongoing intensive chelation treatments. The doctor is supposed to have the education and experience to correctly interpret the lab results, just as with any lab results, but there are both bad and good doctors out there.

The important thing to remember is that just because some people are hypochondriacs, doesn't mean others don't have a legitimate condition. The link notes that the average person will give a range of 7.8 ug/g of mercury after provocation, and this requires no special treatment. That's fine. I have personally seen lab results of an autistic child whose provoked mercury sample was in the 30s, and spoken to others who said theirs were higher. They required treatment, and their symptoms were measurably improved with treatment. (Clearly my son is not in that category, however, so we're not treating him as if he has mercury poisoning.)
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Old 01-08-2010, 10:54 AM   #10
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But regardless, the main point seems to be that an average person will go about 50% out of range (at least for mercury) when provoked. And indeed, my doctors are not concerned about the "elevated" levels that are only slightly out-of-range, like Cadmium for example, or even 2-3 times out of range. They are concerned about the one that is 6.6 times out of range.
The main point is not that an average person will go about 50% out of range for mercury. That's not even suggested...

The main point is that when chelation drugs are taken, heavy metal are leeched out of the blood and secreted in urine, and so it is absolutely natural and expected to see "out of range" levels in the urine at that time, as there is no "range" for the levels that chelation produces. The "range" given is for people not taking chelation drugs.

Earlier you came to the conclusion that
Quote:
Meanwhile, you may notice that Tungsten was a little elevated before the drug, and stayed right at the same level after the drug. From this we can infer that there's some higher-than-average source of Tungsten somewhere in his environment, but he's successfully processing and peeing it out without a problem, thus there was no extra Tungsten for the drug to grab.
This is incorrect.

DMSA is meant to leech out "soft" metals such as lead, mercury, tin and cadmium, but tungsten, not so much. The levels of tungsten are not higher because the drug doesn't grab it.

(And apparently it reverse-leeched titanium, as the "after" levels are zero but the "before" are halfway into the "normal". But note that titanium is a hard metal, so DMSA would not affect it.)
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Old 01-08-2010, 11:41 AM   #11
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from webMD

I looked up Lead Poisoning and found some other things I did not know. I thought maybe others may be interested too.

Clod...When you say elevated levels of lead you do not mean lead poisoning correct?

and as far as this article I found, lead levels are naturally higher at the age of two.

and a well balanced diet helps eliminate lead and

the effects of lead poisoning do not appear until the age of 6 according to this article. Do you disagree?


Have your children had blood tests for lead poisoning?


Information regarding lead poisoning from webMD

http://children.webmd.com/news/20070...oning-and-kids

Is Your Child at Risk of Lead Poisoning? continued...

There is a sure way to know whether your child has accumulated dangerous amounts of lead: a simple blood test. Such tests cost about $15 or $20. Results come back in two days, says Emory University pediatrician Robert J. Geller, MD, medical director of the Georgia Poison Center and chief of pediatrics at Grady Health System, Atlanta. Rosen says, "To be cautious, if a child has been playing with a leaded toy for about one month or more, it is suggested that a child should be tested for lead."
"The average American blood level is 2 to 3 micrograms/dL," Geller tells WebMD. "Your body does get rid of lead very slowly. So a small amount that gets in will be excreted. It is not a permanent blood level."



What to Do for Children With Lead Poisoning

Unfortunately, once a child has absorbed a dangerous amount of lead, there's no quick way to make the lead go away.

Children with dangerously high blood lead levels -- 45 micrograms/dL or more -- can be treated by chelation (pronounced key-LAY-shun). Chelation involves giving a child one of two drugs that quickly remove lead from the blood.

Chelation can save the life of a child with acute lead poisoning. But it does not remove all lead from the body. Most ingested lead is stored in the bones and leaches back into the bloodstream -- and brain -- over time.

"Chelation stops lead poisoning from being life-threatening," Rosen says. "Has damage already been done to the brain? Yes. Chelation does not reverse the adverse effects of lead on the brain. What it does do is save lives. Chelation is of no value -- and may actually harm -- children with lead levels under 45 micrograms/dL."

The USPS panel notes that repeated chelation may temporarily lower blood lead levels, but these reductions are not sustained. The panel found no evidence that these temporary reductions improve health or behavioral outcomes.

What Is Lead Poisoning? continued...

To fully test children to see if there are any adverse outcomes from lead poisoning cannot be done until they reach their sixth birthday," Rosen says. "Many of these symptoms don't manifest until age 6 or 7 years. What a parent might know before that might well be some common complaints such as speech delay, hyperactivity, not being able to sit/listen/learn in school, and not being able to focus. Those observations may be the result of earlier childhood lead poisoning."


Is Your Child at Risk of Lead Poisoning? continued...

There is a sure way to know whether your child has accumulated dangerous amounts of lead: a simple blood test.


A recent U.S. Preventive Services (USPS) Task Force panel noted in a 2006 report that children's blood-lead levels usually peak at about age 2 and go down after that.


What to Do for Children With Lead Poisoning continued.

What does work? Rosen says the first thing to do is to have the child's pediatrician work with local health authorities to find and remove the source of lead poisoning.

Second, Rosen recommends making sure children with high lead levels get a diet rich in calcium and iron. This, he says, helps prevent intestinal absorption of lead and speeds elimination of lead from the body.

"We are recommending a diet replete in calcium-rich foods such as milk and cheese and iron-rich foods such as fresh green vegetables and some red meat," he says.

Rosen admits that frustrated parents may want to do more. But he says that if lead has been removed from the child's environment and the child gets a healthy diet, lead levels will naturally decrease over time.

Rosen also suggests that children who have had high blood lead levels should be assessed by a neuropsychologist at age 6 years to evaluate the need for educational interventions.


"I have supervised 30,000 cases of child lead poisoning, and I have not seen a case of symptomatic lead poisoning for many years," Rosen says.

Last edited by skysidhe; 01-08-2010 at 11:49 AM.
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Old 01-08-2010, 12:36 PM   #12
Clodfobble
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Quote:
Originally Posted by Undertoad
The "range" given is for people not taking chelation drugs.
The range Doctor's Data references is for people not taking chelation drugs. Your article referenced a "well-designed" study that gave a mercury range for people who had taken chelation drugs: 7.8 ug/g, or 2.8 ug/g higher than the acceptable range according to Doctor's Data. And that's fine, I find it very plausible that the drug merely moves out the mercury faster and harder, when the normally-processing body would have gotten to it shortly after, and for people within that 7.8 range, there is no need to treat, even though the Doctor's Data lab results would call that range "elevated."

But at some point, there is inarguably a level at which the patient does pee out more mercury than is acceptable, and should continue to be treated. What do you believe that level to be? Certainly 7.8 ug/g is too low, and your article seems to indicate that maybe even 2-3 times that, or 15.6-23.4, would be acceptable, since they seem to think a 6-hour urine test will be more concentrated than a 24-hour. (My understanding is this is not the case, that the 6-hour vs. 24-hour tests are accounted for to put the results on comparable footing. I have a link later in the post stating that this is the case for lead, but I don't know about mercury.) But what about a mercury level in the 30s? That's definitively higher than your article indicates is even possibly normal for a patient who has taken chelation drugs. There are quacks out there who believe that everyone is suffering from some sort of overall toxic stress from our big bad industrial society, and I don't agree with them. But I do believe that there are certain individuals who do have severely abnormal levels, and those individuals should be treated, especially if they show severely abnormal neurological symptoms that one might expect to see with heavy metal poisoning.

Quote:
Originally Posted by skysidhe
When you say elevated levels of lead you do not mean lead poisoning correct?
By technical definition, yes, too much lead in the blood is lead poisoning. I do not know in my son's case whether it came from a specific large source (i.e., chewing on a lead-painted toy,) which is what one usually would consider to be a "poisoning" incident, or perhaps is just buildup from years of drinking unfiltered tap water and being unable to remove it like a normal person's body would.


Quote:
Originally Posted by skysidhe
and as far as this article I found, lead levels are naturally higher at the age of two.
My son is almost 4.


Quote:
Originally Posted by skysidhe
and a well balanced diet helps eliminate lead
This assumes one is absorbing the nutrients from their well-balanced diet. People with chronic digestive diseases suffer from malabsorption, and can become undersized and underweight for their age (among other symptoms of malnutrition,) because they are not actually getting any of the nutrients that their body needs for all its processes, no matter how well they eat.


Quote:
Originally Posted by skysidhe
the effects of lead poisoning do not appear until the age of 6 according to this article.
No, the proof of lead poisoning cannot be fully tested for until the age of six. According to your article (bold mine,)

Quote:
What a parent might know before that might well be some common complaints such as speech delay, hyperactivity, not being able to sit/listen/learn in school, and not being able to focus. Those observations may be the result of earlier childhood lead poisoning.

Quote:
Originally Posted by skysidhe
Have your children had blood tests for lead poisoning?
No, because the theory is that this is not some coincidentally recent source, this is long-term lead that my son's body has been unable to remove over time. As your article notes,

Quote:
Most ingested lead is stored in the bones and leaches back into the bloodstream -- and brain -- over time.
So we would expect his current blood level to be low. But your article seems to indicate that chelation drugs only pull lead out of the blood, not other stores, and that is not correct. This study from the NIH indicates that DMSA pulls lead from soft tissue and some types of bone as well. That same study also notes, UT, that

Quote:
DMSA-chelatable lead excreted in the 24-h portion correlated well with the excretion in the 6-h portion.
That study suggests that a "cortical Bone-Pb" would be a more valid test to determine the level of long-term stores in the body, but I don't think that the trauma and risk of a bone biopsy is in my son's best interest, compared to cautiously examining ongoing lead levels and whether they plummet dramatically in another treatment or two, thus indicating that the store has been depleted. If one were to accept the idea that this kind of elevated number is completely normal following a chelation dose, then one would have to expect that the high numbers would never go down, because the chelation drug would produce the same result every time.

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Old 01-08-2010, 02:21 PM   #13
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Originally Posted by Clodfobble View Post
But at some point, there is inarguably a level at which the patient does pee out more mercury than is acceptable, and should continue to be treated. What do you believe that level to be?
I'm saying the levels after chelation treatment don't tell you very much of interest.

The Wikipedia article on diagnosis of mercury poisoning says it too: "It is difficult or impossible to interpret urine samples of patients undergoing chelation therapy, as the therapy itself increases mercury levels in the samples.[27]"

It's kind of funny because, from one standpoint, the answer to this question is "No amount of mercury in the urine is unacceptable", because that's where the body gets rid of it. I mean, if I drank an entire bottle of it, I would hope my pee an hour later would be 100%, shimmering silver.

(next is the boring part)

Quote:
Certainly 7.8 ug/g is too low, and your article seems to indicate that maybe even 2-3 times that, or 15.6-23.4, would be acceptable, since they seem to think a 6-hour urine test will be more concentrated than a 24-hour. (My understanding is this is not the case, that the 6-hour vs. 24-hour tests are accounted for to put the results on comparable footing. I have a link later in the post stating that this is the case for lead, but I don't know about mercury.) But what about a mercury level in the 30s? That's definitively higher than your article indicates is even possibly normal for a patient who has taken chelation drugs.
7.8 ug/g was an average for this one particular group of factory workers, not for everybody. So, if the average was 7.8 ug/g but the measured numbers extend to 10.0 ug/g, there's your 30. If it extends to 13, there's your 40. Easily within the range of normal.

Not hard to believe the numbers could vary and still be normal. Your boy measured changes in metals not affected by DMSA. Here we have evidence of wide ranges of normal.

The statistic for those graphs uses creatinine levels as a denominator; but what's strange about that is, creatinine levels vary greatly from person to person. Creatinine levels in your boy will be greatly less than the levels in those factory workers.

If creatinine is not a reliable denominator - the numbers could be off the charts and still not tell us anything interesting at all.

There is so much missing here.

The levels measured in that study were for workers regularly exposed. What if the exposure is sudden? (Did somebody inhale near a broken fluorescent light bulb? Did somebody eat an ashtray? Did somebody have tuna for dinner?)

The Wikipedia entry on mercury poisoning notes that even pre-chelation urine levels are only interesting if the exposure is chronic.

Does the body process sudden exposure differently than long-term consistent exposure? Is the elimination of mercury into the urine consistent over time, or is it "here and there"? Do certain meals encourage it? Does exercise?

Do certain people react differently to chelation? Are some more resistant than others? Do obese people give off more mercury during chelation because it's stored in fat and not in the bloodstream? Or do they give off less? Are these factors relevant in children?

So many missing pieces for us, because we have not studied medicine in detail.
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Old 01-08-2010, 05:04 PM   #14
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Quote:
Originally Posted by Undertoad
It's kind of funny because, from one standpoint, the answer to this question is "No amount of mercury in the urine is unacceptable", because that's where the body gets rid of it. I mean, if I drank an entire bottle of it, I would hope my pee an hour later would be 100%, shimmering silver.
And what if your urine turned shimmering silver with mercury, and you hadn't drunk an entire bottle of mercury? Wouldn't that warrant further investigation? The conundrum you're describing is precisely why you must take both a "before" and "after" sample. It is not the raw levels which are important, but the comparison between the two. True, some discrepancy is to be expected. But the difference between .8 and 33? That's big enough to be relevant, because I spend 24 hours a day with my son and I can assure you he did not drink an entire bottle of lead that weekend.


Quote:
Originally Posted by Undertoad
7.8 ug/g was an average for this one particular group of factory workers, not for everybody. So, if the average was 7.8 ug/g but the measured numbers extend to 10.0 ug/g, there's your 30. If it extends to 13, there's your 40. Easily within the range of normal.
Only assuming that you're able to multiply the numbers by a factor of 2-3 to account for the difference between a 6-hour test and a 24-hour test. NIH says that's not a valid step when considering lead results, because lead in 6-hour and 24-hour samples is comparable. Are mercury levels in a 6-hour and 24-hour test comparable? I don't know--and I also don't really care, because my son didn't pee mercury. He peed lead.

Quote:
Originally Posted by Undertoad
Not hard to believe the numbers could vary and still be normal. Your boy measured changes in metals not affected by DMSA. Here we have evidence of wide ranges of normal.
True. And the lab marked all of them as normal, or barely above it. Not concerned with those numbers, or those metals. I'm concerned with lead. Seriously, I'm done talking about mercury, because I haven't researched it, and don't have time to research things that aren't germane to my son's condition. If my daughter pees mercury, I'll come back to it. You want to talk lead, though, I'll talk lead.

The Wiki page on Lead Poisoning is a much better place to look anyway, because it's not steeped in controversy like mercury is. It says:

Quote:
Chelation therapy is used in cases of acute lead poisoning,[18] severe poisoning, and encephalopathy,[116] and is considered for people with blood lead levels above 25 µg/dL.
My son has symptoms of encephalopathy, and had a post-provocation urine level of 33 µg/dL. That includes lead stored in soft tissues that would not be registered on a blood test; but nonetheless, he did the equivalent of peeing a non-shimmery, dull lead-colored stream of pee. But he didn't do it until he had a drug that made him do it, because apparently, his body does not process lead appropriately like a normal, non-encephalopathic person's body does.

Quote:
Originally Posted by Undertoad
So many missing pieces for us, because we have not studied medicine in detail.
Absolutely. That's why we have doctors to study medicine in detail for us. And I have at my disposal two types of doctors to listen to.

One type says a variety of things about my son's condition that I know to be completely false, including the notions that he never actually had chronic diarrhea, that he could not have shown improvement from mere dietary changes, and that he could not possibly have had nutritional deficiencies that lab tests confirmed he had. This same type of doctor outright refuses to run established, acceptable tests for heavy metal poisoning, on the sole grounds that my child is autistic, therefore it must be completely impossible that he has heavy metal poisoning, even as an entirely coincidental condition. This type of doctor is terrified to be caught testing an autistic child for metals, even if I told them I just watched him eat a fistful of lead paint with my own two eyes.

The other type of doctor knows the difference between bright green liquid and a brown log, not only believes but predicted all the ways I saw my son improve with dietary restrictions, and continues to successfully treat and improve his symptoms with established medications (that the first type of doctor acknowledges are quite effective at what they do, but merely meaningless to my son's condition.) This other type of doctor runs tests, and bases treatments on the results. He is very experienced in the administration and risks of chelation drugs, and knows that neither high-dose nor long-term treatments are appropriate.

The medical community is split on this issue, and I have to choose who to listen to. Misuse of chelation therapy is certainly a problem, just like the misuse of many other drugs. But when done appropriately, it is an established and accepted treatment for known symptoms and confirmable test results. So I'm going with the doctors who have a proven track record in my own personal experience.
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Old 01-08-2010, 11:36 PM   #15
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Quote:
Originally Posted by Clodfobble View Post
My son didn't [pee lead] until he had a drug that made him do it, because apparently, his body does not process lead appropriately like a normal, non-encephalopathic person's body does.
Not true!! Go back and look at the chart; your son peed lead before the drug came along and made him pee more of it.

Wikipedia article on lead poisoning says "The chelate that is thus formed is nontoxic and can be excreted in the urine, initially at up to 50 times the normal rate."

50 times!

See, the reason the six hour number is more interesting is that most of the stuff is peed out during that time frame. After six hours, you're just peeing pee, ya follow?

So, now that we see that post-chelation urinary numbers for lead are not interesting, not informative, not indicative of anything, because they can be up to 50 times the amount found in the urine pre-chelation...

...the next most relevant question is, what are your son's blood lead levels?
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