Re: Heavy Metal Testing for Anyone?

November 25, 2008

I think you best bet is the urinary porphyrin test. Lab Corps will do it and most insurance(including medicaid) will cover it. It would require a script from a doctor though.

Maurine

Subject: Heavy Metal Testing for Anyone?To: Autism-Mercury , eoharm Date: Monday, November 24, 2008, 8:10 PM

Hi Everyone,

In talking to various people in my community about a cement plant in town, which is the largest mercury polluter in NY state, the question keeps coming up about how to test for mercury. I know there are differing opinions on this so I'm not sure what to tell people. Here's a list of options and if anyone has a chance, I'd love to hear what you think would be the best test for people who likely don't have any disposable income (not that many of us do), limited access to a doctor who "gets it," and a test that is credible enough to stand up in court -- because that's where this issue may be headed. And certainly correct me if I'm wrong on any of my assumption here...

Blood or Urine Test - Only tests very recent exposure and will only show up if you're an excreter.

Hair Test - Since hair is another way we excrete metals, non-excreters will have low mercury. Could use Andy Cutler counting method, but I personally think it's a litte too complicated for some people to get and not sure if it would stand up in court.

Provoked Urine Challenge Test - I think this is pretty accurate to measure if there are levels stored within the tissue and organs of body, but only certain doctors will do them and the safety of such a high does of chelator is controversial.

Poryphorin Test - I don't know much about this test. I think it may be fairly accurate, but I've heard negative things as well.

Baby Teeth - I've heard of a lab where you can send your baby teeth for testing. This sounds like a neat idea if the person kept their (or their child's) baby teeth. Can't verify accuracy level though.

It's sort of frustrating that there's not one failsafe test that's easy to do for anyone. Not sure if I missed anything, but I welcome any and all comments/suggestion s.

Thanks,

Elyse

November 25, 2008

Porphyrins testing seems to be the test of choice. I just sent mine

off Saturday to a French lab but I can't remember the name of the

company.

>

> Hi Everyone,

>

> In talking to various people in my community about a cement plant

in town, which is the largest mercury polluter in NY state, the

question keeps coming up about how to test for mercury. I know there

are differing opinions on this so I'm not sure what to tell people.

Here's a list of options and if anyone has a chance, I'd love to hear

what you think would be the best test for people who likely don't

have any disposable income (not that many of us do), limited access

to a doctor who " gets it, " and a test that is credible enough to

stand up in court -- because that's where this issue may be headed.

And certainly correct me if I'm wrong on any of my assumption here...

>

> Blood or Urine Test - Only tests very recent exposure and will only

show up if you're an excreter.

> Hair Test - Since hair is another way we excrete metals, non-

excreters will have low mercury. Could use Andy Cutler counting

method, but I personally think it's a litte too complicated for some

people to get and not sure if it would stand up in court.

> Provoked Urine Challenge Test - I think this is pretty accurate to

measure if there are levels stored within the tissue and organs of

body, but only certain doctors will do them and the safety of such a

high does of chelator is controversial.

> Poryphorin Test - I don't know much about this test. I think it

may be fairly accurate, but I've heard negative things as well.

> Baby Teeth - I've heard of a lab where you can send your baby teeth

for testing. This sounds like a neat idea if the person kept their

(or their child's) baby teeth. Can't verify accuracy level though.

>

> It's sort of frustrating that there's not one failsafe test that's

easy to do for anyone. Not sure if I missed anything, but I welcome

any and all comments/suggestions.

>

> Thanks,

> Elyse

>

November 25, 2008

Hi Elyse--

Here's the order page for Laboratoire Philippe Auguste.

http://www.labbio.net/index.php?page=order

It seems that some pages on their site are down but you can still

order the tests in English. You don't need a scrip and it's $120.00

for urinary porphyrin analysis kits. The results are simple to read

(big colored charts) and the lab can provide guidance (as can people

on the lists). You get a credit card form with the kit and pay as

your sending back the samples. This will test " sequestered " mercury.

As far as my family is concerned, it's quite accurate. Later

challenge tests that we did on our kids using various amounts of DMSA

(low dose and then high dose on a later test) showed approximately

the same levels of directly-measured mercury in the children's

samples as the porphyrin analyses had predicted. All the criticisms

I've heard of Laboratoire Philippe Auguste are vague. It's the lab

which has been doing the tests for the longest in any case. The head

of the lab has written papers on UPPA and the predictability of

disabilities derived from test results. LabCorp could work too and

insurance covers it, great.

Getting urine from a potty-trained child is easy, though the trick is

getting first morning urine from a child still in diapers. Kids in

diapers pee all night, so what consititutes " first morning " ? It's

possible to put a little stick-on plastic urine bag on the child

really early in the AM (maybe someone from the group will know where

to get these bags). If genuine " first morning urine " is not

collected, then the reading will be off and the test will be somewhat

innacurate. We screwed it up the first time and the test

underestimated the amount of mercury our twins had in them. We

repeated it correctly and the levels were off the chart for our son

and less so for our daughter. It made sense considering the

seriousness of each twins' conditions, though it's a bit surprising

that our son isn't worse off considering his levels.

It's also possible to use Andy Cutler's low-dose oral method as a

challenge test. We did under the supervision of our DAN, even though

the DAN complained it was like trying to drive 25 miles an hour on

the freeway-- too slow, too weak a method. Then we were all surprised

by the results, including the DAN doc. It turns out that Andy is

quite correct that chelators work basically on a square root: less

seems to be more. Well, it's not actually more but if a child is

given a six hour " pre-challenge test " for metals, then is put on the

low-dose oral method for either one round or a series of weeks

(loosens up more metal) and then a six hour post-challenge is

performed, you're going to see a lot of metals. Not as much as if you

went up to the usual high dose suppository of DMSA used for

challenges but some will see quite elevated levels using low dose.

Many people use Cutler's method without a doctor's support on

Cutler's list. I don't know about the advisability of doing that.

In the end, the doctor-monitored high dose suppository DMSA challenge

drew out the most dramatic amount of metals. Mercury off the chart.

How good that is for the kidneys to pass that much metal at once is

up for debate. We saw zero adverse effects from the one challenge and

both kids made almost immediate leaps in development, though I don't

know how typical my children's reactions were.

After dithering forever out of fear of chelating and after finally

using many of the methods (except IV), we've found that the idea of

the dangers of chelation are pretty much overblown, based mostly on

the case of the child given the wrong chelator (IV EDTA-- which is

actually mostly used for lead. The child was supposed to be given a

form of EDTA which replaced calcium, since calcium loss from EDTA is

extremely dangerous). The other risk from DMSA (either supp or oral)

is loss of minerals, usually solved by replacement through

supplements (calcium, zince, etc.). The rat study which supposedly

showed that chelating was dangerous (because the rats that lacked

actual heavy metal burden had cognitive decline post-chelation,

though the rats who were metal poisoned showed improvements post

chelation) was performed without mineral replacement. Another serious

risk is neutropenia (lowering of neutrophils), which is rare even for

high dose or IV chelation. Then there are the seizure prone children

whose seizures can apparently be triggered occasionally by chelation.

Last but most annoying is that oral chelation stirs up yeast and you

can end up with a yeast-beast kid, chewing the furniture. Treating

yeast is important while chelating with any method.

I'm adding this because if some people in the case decide to try

urinary porphyrin analyses, many will be asking " What now? " if they

see high levels of metals in their children. At that point, it would

probably be best to seek a DAN doctor to oversee detox. But some

families won't have the money for it and, if this is the case, then

they could check out Cutler's list and Cutler's methods. Cutler's

list keeps lists of resources, labs you can use without a scrip to

order tests for your child, etc., treatments for yeast and the rest.

Hope this helps.