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Old 01-08-2010, 09:45 PM   #1
Clodfobble
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Quote:
Originally Posted by Clodfobble
My son has symptoms of encephalopathy, and had a post-provocation urine level of 33 µg/dL.
I messed up my units, here. My son's reading was 33 µg/gram of creatinine, not by total volume the way blood is read.

His creatinine was 11.6, and the total volume peed in that six hours was 400 mL = 4 dL, which makes (33 µg)*(11.6)/4 = 95.7 µg/dL of urine.

I don't know if it was really that ridiculously high, or if urine concentration just can't be compared to blood concentration this way. But that looks to me to be how the units work out.
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Old 01-09-2010, 09:25 AM   #2
Clodfobble
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Quote:
Originally Posted by Undertoad
your son peed lead before the drug came along and made him pee more of it.
Yes, he peed eight-tenths of a microgram. Normal pee levels are 2-3 micrograms according to Wiki. Take in 2, subtract .8. Tomorrow, take in another 2, subtract .8. This equals long-term buildup.

Quote:
Originally Posted by Undertoad
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?
Right. This is why they give a reading in µg/gram of creatinine, because it gives a more accurate picture and accounts for dilution.

Quote:
Originally Posted by Undertoad
50 times!
That was from the section of the page on Treatment; i.e., for people who had been found to have lead poisoning. It's a statement on how effective the drug is at removing lead from people with lead poisoning.

How come he didn't pee 50 times the normal amount of any other metal? Why would the NIH use urine collection for any of their research studies if it's so completely meaningless?

Quote:
Originally Posted by Undertoad
...the next most relevant question is, what are your son's blood lead levels?
I don't know, and I don't care. He didn't eat a lead toy, he's been slowly accumulating for years. It's not in his blood.

Quote:
Blood lead levels are an indicator mainly of recent or current lead exposure, not of total body burden.[106] Lead in bones can be measured noninvasively by X-ray fluorescence; this may be the best measure of cumulative exposure and total body burden.[21] However this method is not widely available and is mainly used for research rather than routine diagnosis.
Quote:
When lead exposure has taken place over a long period, blood lead levels may rise after chelation is stopped because lead is leached into blood from stores in the bone;
You pull what you can from the soft tissues, opening space for more bone stores to leach out. Then you pull again a few weeks later. If one were being really anal, I suspect that one could take the drug, and then do a few blood tests in the minutes and hours immediately following, since by definition that newly-bound lead's going to take a turn around in the bloodstream before getting processed into the urine. But that's a little pointless, because you can test for the presence of that same lead in the urine just a short while later.
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Old 01-09-2010, 12:58 PM   #3
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Quote:
Originally Posted by Clodfobble View Post
Normal pee levels are 2-3 micrograms according to Wiki.
link plz

Quote:
How come he didn't pee 50 times the normal amount of any other metal?
Because that's the rate for lead.

Quote:
Why would the NIH use urine collection for any of their research studies if it's so completely meaningless?
I dunno, what are they looking for?

Quote:
(What's the level in his blood?) I don't know, and I don't care. He didn't eat a lead toy, he's been slowly accumulating for years. It's not in his blood.
By what magic, then, did it get into his pre-chelation pee?

http://en.wikipedia.org/wiki/Lead

Quote:
Analysis of lead in whole blood is the most common and accurate method of assessing lead exposure in human. Erythrocyte protoporphyrin (EP) tests can also be used to measure lead exposure, but are not as sensitive at low blood lead levels (<0.2 mg/L). Lead in blood reflects recent exposure. Bone lead measurements are an indicator of cumulative exposure. While measurements of urinary lead levels and hair have been used to assess lead exposure, they are not reliable.
http://en.wikipedia.org/wiki/Lead_poisoning

Quote:
Elevated lead in the body can be detected by the presence of changes in blood cells visible with a microscope and dense lines in the bones of children seen on X-ray. However, the main tool for diagnosis is measurement of the blood lead level; different treatments are used depending on this level.
An x-ray and a drop of blood on a slide. Those are the reliable tests, for decades. Proven, cheap and readily available.

But you prefer pseudoscience. So your evidence is a measurement known to be unreliable and inaccurate; and then you make major mistakes and generous leaps of logic in your interpretation of the results.

Without being rude, I urge you to change your thinking about this. Let's put it this way. If cheap, proven, reliable tests show long-term lead accumulation in your son, a battery of specialists will suddenly turn their attention to improving him. Covered by insurance -- probably using chelation to do it -- and you will be proven right. What do you have to lose?
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Old 01-09-2010, 02:23 PM   #4
Clodfobble
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Quote:
Originally Posted by Undertoad
Because that's the rate for lead.
According to you, at least 7.8 µg, and maybe as high as 30-40 µg, is "normal" for mercury. He didn't pee that. Why not?

Quote:
Originally Posted by Undertoad
I dunno, what are they looking for?
Measuring the effectiveness of chelation drugs, among other things, which are widely accepted and prescribed for heavy metal poisoning. The drugs are not in question, their effects are not in question. The only thing you seem to be insisting is that anyone, absolutely anyone, could pee out as much lead as my son did when given the medications he was given. Except everyone doesn't. The only references you've found to people peeing out that much lead were individuals who were known to be exposed to lead.

Quote:
Originally Posted by Undertoad
link plz
Sorry, I thought it was wiki but it was from somewhere else. Here's a study indicating that normal urinary lead levels for Japanese adults are between 1 and 4 µg for a 24-hour collection.

Quote:
Originally Posted by Undertoad
By what magic, then, did it get into his pre-chelation pee?
You're being deliberately obtuse. A person takes in a couple micrograms a day from the average environment, and pees it back out again. My son takes in 2-3 micrograms just like everyone else, and pees out a fraction of that each day. Part comes out, part floats around in his blood until it gets stored in a bone, or soft tissue, or his brain. At any given time, I would expect his blood to show a slightly elevated amount, but not a shockingly high amount, because he is dutifully socking the extra away in his organs and bones.

Quote:
Originally Posted by Undertoad
An x-ray and a drop of blood on a slide. Those are the reliable tests, for decades. Proven, cheap and readily available.
Actually, it's been noted here already (in the Wiki link, among others) that the fluorescence X-ray is neither cheap, nor readily available. It's used for research, not for diagnostic purposes. I cannot get one.

Quote:
Originally Posted by Undertoad
Without being rude, I urge you to change your thinking about this. Let's put it this way. If cheap, proven, reliable tests show long-term lead accumulation in your son, a battery of specialists will suddenly turn their attention to improving him. Covered by insurance -- probably using chelation to do it -- and you will be proven right. What do you have to lose?
Here's the funny thing--a battery of specialists will not turn their attention to improving him, even if we managed to get a fluorescence X-ray. Because he's autistic, no one will touch him. I can't even get a normal doctor to order a blood lead test on him. I've asked, and they won't do it, because they're terrified that colleagues will start pointing the pseudoscience accusations at them. There was another Dwellar with a child exposed to lead a few years ago, and not once did you call his claim into question. You jump on the pseudoscience bandwagon here because my son's autistic, and everyone knows there's just no cause for that, none at all.

Here is what I would need to do, to even get a blood test ordered: I would have to go to a completely new doctor, and lie and say that my son has only started showing these obviously autistic symtoms in the last few days, and gosh, I'm pretty sure I saw him picking at some paint on a building while we were out running errands. Of course, I'd also have to claim that he had no prior medical records, because any new patient is going to get their old records pulled from the previous doctor before their appointment, and he'd see the word "autism" and refuse the tests. But if I lied well enough, he would probably order them... and then what? Either the levels would be low because his exposure is chronic, not recent, and they would tell us nothing. Or the levels would be high, but not higher than 45 µg/dL, and they would say "not to worry, the body will naturally process it out, just give it time." Or the levels would be high enough to warrant chelation, at which point the doctor would attempt to prescribe some, and the jig would be up--I would have to admit that he's already taken a dose of chelation recently, and that I'm not interested in this new doctor overseeing a longer course of it because I already have a doctor doing that. And he would ask, "Why did you waste my time to get me to order these tests then?" and I would reply, "Because this guy on the internet didn't believe me."

Sorry, it's not worth the effort. If you can point me to a doctor who will give my son a fluorescence X-ray, I will definitely consider it, however. By the way, insurance already covers both the current doctor and the DMSA prescription.


I asked this in a different way before, and you didn't answer, so let me ask it again: if after a few more rounds of the drug, my son's lead levels go down and stay down, how will that fit into your theory that his current high levels are meaningless? Under your interpretation of the data, he should continue to have high levels no matter what I do, right?
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Old 01-09-2010, 04:04 PM   #5
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Originally Posted by Clodfobble View Post
According to you, at least 7.8 µg, and maybe as high as 30-40 µg, is "normal" for mercury. He didn't pee that. Why not?
Either you didn't read or you didn't understand the original quote. You also have repeatedly failed to distinguish between the term normal and the term average.

Again, 7.8 micrograms per gram of creatinine was the average post-chelation amount measured on a 24-hour basis in adult factory workers repeatedly exposed to mercury.

Why didn't your son pee that? We don't have enough information, but perhaps a good start is that he isn't an adult factory worker repeatedly exposed to mercury.

Quote:
Sorry, I thought it was wiki but it was from somewhere else. Here's a study indicating that normal urinary lead levels for Japanese adults are between 1 and 4 µg for a 24-hour collection.
OK, you've gotten your units confused again. This study finds a statistical measurement of micrograms of lead, not micrograms of lead per gram of creatinine, as is expressed in the other study.

Also, again, the Japanese study does not determine what is normal, only what is statistically significant.

Quote:
You jump on the pseudoscience bandwagon here because my son's autistic, and everyone knows there's just no cause for that, none at all.
Oh goodness no! I call it pseudoscience because that's what it totally fucking is. I'm not jumping on the bandwagon in this case, I'm driving it.

Don't use my lack of participation in a thread as evidence of anything. Perhaps I did not care about that user as much.

Meanwhile, if you don't want my considered opinion, you should post it in "your" thread, where I have noted I will not seriously post. It might even be more appropriate, since there is no lead in any vaccines I know of.
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Old 01-09-2010, 05:04 PM   #6
skysidhe
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When you go to the doctor just separate the autistic/lead thing.

Maybe the doctor sees the road you are attempting to go down and that is to your own ends of finding a cure of autism because I am sure if you asked for a blood test for lead because you are worried he has lead poisoning you would get a blood test.

A blood test for detecting blood for its own sake a doctor will do.

A blood test because of everything you have said here I agree he probably won't do.


From a blog I found this morning. It's the same kind of conversation that is going on here. It may be of interest to the both of you.
http://qw88nb88.wordpress.com/2008/0...cury-its-lead/


Like with any kind of therapy or treatment marketed for autism, we must remember that autism is a developmental disorder. The development of the child is slower or erratic compared to age-peers. However, that is not the same thing as developmental stasis. The continued acquisition of skills by autistic children are often attributed to the therapies given to them, rather than simply due to maturation. Autistic children who are not given the scores of dubious therapies also improve as they mature.
Put simply:
  • Lead poisoning is detected through blood tests.
  • Lead poisoning can cause learning difficulties, but is not the same thing as autism. The symptoms of lead poisoning and autism are very different.
  • “Chelation challenge” tests are not accurate for assessing levels of heavy metals.
  • Chelation can be used to remove heavy metals from the body, with intravenous EDTA reserved for high toxicity levels. However, removing those from the body does not undo all of the effects of severe heavy-metal poisoning.
  • Chelation will not cure autism.
  • Autistic children continue to grow and develop at their own rates, sometimes to the point that they do not require extra school services or therapies. At that point, they are autistic children who do not require extra school services or therapies. (Yeup, they’re still autistic.)

oh and by the way. If I thought my son had lead poisoning I would be fighting to get a test. I probably wouldn't leave the doctors office until I got one. I'd scratch someones eyes out if they told me no and I thought the lead was causing damage.

Being or having autism has nothing to do with providing medical services that are timely and necessary.
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Old 01-09-2010, 05:19 PM   #7
Clodfobble
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Quote:
Originally Posted by Undertoad
Again, 7.8 micrograms per gram of creatinine was the average post-chelation amount measured on a 24-hour basis in adult factory workers repeatedly exposed to mercury.

Why didn't your son pee that? We don't have enough information, but perhaps a good start is that he isn't an adult factory worker repeatedly exposed to mercury.
Okay. Here's a study of factory workers repeatedly exposed to lead. On the bottom half of page three, you will find a chart that graphs the actual data of these 177 factory workers, with micrograms per dL of urine on the left. I calculated my son's urine to be 95.7 ug/dL, which is more than twice what the highest factory worker's reading is. If you see a problem with my calculations there, please tell me.

On the one hand, these factory workers were not challenged with a chelation dose to get to their levels, so it's still not a completely direct comparison. But on the other hand, all but one of the factory workers with a urine level above 15 also had a blood level high enough to warrant chelation (45+). These are guys under heavy exposure, their bodies are presumably processing just as well as anyone's, and they still peed a fraction of what my son was able to pee with no known exposure. My son didn't pee mercury because there was no mercury in his body to pee. But the lead had to come from somewhere; where did it come from?

Quote:
Originally Posted by Undertoad
Oh goodness no! I call it pseudoscience because that's what it totally fucking is. I'm not jumping on the bandwagon in this case, I'm driving it.
So just to clarify, the one thing that you specifically find to be pseudoscience is the urinary lab report, correct? Other types of lab tests (fluorescent X-rays) are science, and the chelation drugs used to treat those conditions are science, correct?

Science should have predictable results, or it isn't science. I have predicted future results based on my interpreation of the data: If after a few more rounds of the drug, my son's lead levels go down and stay down, how will that fit into your theory that his current high levels are meaningless? Under your interpretation of the data, he should continue to have high levels no matter what I do, right?



Quote:
Originally Posted by Undertoad
Meanwhile, if you don't want my considered opinion, you should post it in "your" thread, where I have noted I will not seriously post. It might even be more appropriate, since there is no lead in any vaccines I know of.
I never suggested I don't want your opinion, just that I think it's wrong. I know exactly what I'm posting in this thread and that thread.

Of course there's no lead in vaccines. No one ever suggested there was. Once again, you are jumping back to your primary drum beat when it has nothing to do with the current discussion, which is treatments--which you indicated previously that you were not only interested in, but shocked that I hadn't mentioned them before. I told tw I would post my son's lab results (actually my daughter's, but we ended up testing my son first) for his consideration, and I did. Regardless of what breaks an autistic person's metabolic processes, be it vaccines or not, the resulting symptoms can be treated in their own right. One of those symptoms can be a chronic inability to process certain heavy metals that normal people don't have a problem with, and it can be treated the same way any heavy metal exposure would be.
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Old 01-09-2010, 06:41 PM   #8
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Quote:
Originally Posted by Clodfobble View Post
Okay. Here's a study of factory workers repeatedly exposed to lead. On the bottom half of page three, you will find a chart that graphs the actual data of these 177 factory workers, with micrograms per dL of urine on the left. I calculated my son's urine to be 95.7 ug/dL, which is more than twice what the highest factory worker's reading is. If you see a problem with my calculations there, please tell me.
Step by step, mathematician folks follow:

You mentioned that your son's creatinine levels were 11.6. I'm assuming that's 11.6 ug of creatinine per dL, as the Dr Data report from Quackwatch reads, yes?

11.6 micrograms per dL means he peed 0.0116 grams of creatinine per dL...

He peed 33.0 micrograms of Pb per gram of creatinine.

Therefore, his Pb output is 33 * 0.0116, micrograms of Pb per dL.

Therefore he peed .38 micrograms of Pb per dL, or roughly six times lower after chelation than the lowest factory worker measured before chelation.

amidoinitrite?

Quote:
So just to clarify, the one thing that you specifically find to be pseudoscience is the urinary lab report, correct? Other types of lab tests (fluorescent X-rays) are science, and the chelation drugs used to treat those conditions are science, correct?

Science should have predictable results, or it isn't science. I have predicted future results based on my interpreation of the data: If after a few more rounds of the drug, my son's lead levels go down and stay down, how will that fit into your theory that his current high levels are meaningless? Under your interpretation of the data, he should continue to have high levels no matter what I do, right?
At these miniscule levels? Probably hard to predict! Nevertheless, predictable results are certainly not the test of whether something is science.
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Old 01-09-2010, 11:55 PM   #9
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Originally Posted by Undertoad
You mentioned that your son's creatinine levels were 11.6. I'm assuming that's 11.6 ug of creatinine per dL, as the Dr Data report from Quackwatch reads, yes?
My chart says 11.6 milligrams of creatinine per dL, but that does equal .0116 grams.

The problem is, if that math is correct, then that would mean his original test, which measured at .8 micrograms lead/gram creatinine, would work out to (.8)(.025 creatinine level for before sample) = .02 micrograms/dL, which is well below the detectable range for lead. (The low end of the detectable range is .1 microgram/dL (mentioned on page 4.)) So either the lab completely falsified levels at ranges they couldn't even detect (and if you're going to falsify levels, why not just falsify high levels?), or this math is off somewhere.

Truthfully, I don't know the answer. But I can tell you that 1.) I trust the doctor who says he needs some additional, well-monitored treatment for this level of lead (but that none of the other "elevated" numbers are at all concerning,) in low-dose and non-intravenous format; 2.) about 75% of the autism parents I have talked to saw large gains with moderate chelation therapy; and 3.) I personally saw an improvement in my son following his initial chelation dose, despite not expecting him to have any toxicological problems. You are welcome to link to some of the studies that say there has been no confirmable cognitive improvement in lead-poisoned children even after chelation, only a possible behavioral improvement, but they mean about as much to me as the studies that show no improvement is possible with dietary changes. I have a sample size of 1, but I know my sample very, very well. I know the limited medical risks for short-term non-IV chelation (too much loss of calcium and zinc, primarily,) and how to mitigate them (treatments spaced weeks apart, supplementation of minerals in between.) The financial risks are nonexistent, as this particular lab test is cheap and the prescription is cheaper. And I have seen some evidence of gains with the initial treatment. Proceeding cautiously seems to me to be the right decision to make.

I promise you, I am far more terrified of making the wrong decisions in all of this than you are, and I weigh every choice very carefully. I have rejected at least a half a dozen other scam treatments that are often pushed upon parents of autistic children. Are some people scammed by the idea of intensive, long-term chelation as a cure-all, even when they show no symptoms? Yes. But I'm a smart lady, and I don't believe that to be what's happening here. You obviously believe otherwise, but hey, that just shows you care. I promise that the biggest risk here is that I will waste a small amount of energy and an even smaller amount of money and see no results, and that's a risk I'm willing to take.
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Old 01-11-2010, 01:32 PM   #10
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Desiree semi-update:

I still have my Google Alert set for DJ. The Something Awful forums picked up the story, and someone there has won the Internet on the topic:

"this may have ruined her chances to be a redskins cheerleader, but if she can go backwards fine, she could still be on the team"
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Old 01-30-2010, 11:49 AM   #11
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Hey Clod, according to Forbes all this chelation stuff is bunk.

Oh, and they just named Monstanto as Company of the Year.
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Old 01-30-2010, 01:33 PM   #12
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Heh... a guy with no major neurological symptoms spent 8-16 hours a week hooked up to an IV for 18 months, spending thousands upon thousands of dollars for each infusion? Yep, dude got scammed.
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Old 01-30-2010, 07:22 PM   #13
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Clod, we went though this with the inch and to a lesser degree, the millimeter. I ended up going to school to become a certified lead abatement contractor. I learned a lot and would be happy to fill you in on what I learned, especially in terms of separating the wheat (:0 so to speak) from the chaff.
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Old 02-05-2010, 09:40 AM   #14
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Desiree Jennings update:

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Old 02-05-2010, 12:32 PM   #15
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lol

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