Mercury testing

[kim]

Claire,

 

Did the test come back?

 

I'm thinking that this test is going to be the preferred way to look at total mercury load in the very near future. Have you been able to get into the files section of ASD solutions to get Dr. Nataf's notes (not sure I got his name right there).

 

This article doesn't give a lot of information, but to keep it all in one place, I thought I'd start a thread on it.

 

Interview with Dr. Boyd E. Haley: Biomarkers supporting mercury

toxicity as the major exacerbator of neurological illness, recent

evidence via the urinary porphyrin tests

 

Here is the complete abstract:

http://www.medicalveritas.com/images/BHInterview.pdf

 

From the sounds of it (from your post on another thread) your test must not include as many biomarkers as some. This has been discussed on ASD solutions. Some people have paid as high as $325.00, I believe. I'll be on the look out, for any posts regarding this. It's possible too, that all of the tests/markers aren't necessary, if you are looking for less extensive information.

 

Here is just a snipet, from a parents post:

 

coproporphyrin level(lead) at 783 when the range is 50-

80 and a precoporphyrin level (mercury) of 53 when the range is 2-5

 

She was questioning how her son could possibly be doing as well as he is, being this toxic.

 

Not the first time, you and your son, be the pioneers here!

 

Kim

[Claire]

Kim,

 

I haven't gotten the test back. I sent them out on 9/5 and they said it usually took 5 business days to get to France. So given it has been 10 days total (not business days), I may have another week...unless they do email.

 

Our cost was only $228 for two tests (my son and I), or $114 each, so I have this feeling I may not have gotten everything I could have based on what you posted. I am glad to see that they could actually tell which metals from the results. I will note that coproporphyrin levels may indicate lead and 80 precoporphyrin levels may indicate mercury. You know once I get the results back I may need your help finding the sites. I do have a yahoo account that should work, so hopefully I can find the info... Of course I will post the results and then the analysis here. I haven't looked at any sites/notes yet...I am waiting for the results first.

 

Well, if this test turns out to be what you and I hope it is, I (and others) will owe you many thanks for bringing it to this board. Too many false negatives with the serum metals and hair metals tests (though my son and I were positive on both of them). It would be great to find are non-invasive, more accurate method, with no doctor's signature needed! You know how strongly I feel that oxidative stress and metals are culprits for many of our kids. This would probably become the first test I would personally recommend...The food allergy testing is key to help accelerate healing, but you need to get to the cause of the immune system depression. I really believe that getting rid of my amalgams was huge for me.

 

I meant to PM you that I also really, really appreciate your bringing the info on the directlabs.com site here. It allows me to keep up with monitoring my son's status with minimal effort.

 

You know, my son is doing so well...he is taking on his homework with no pushing this year. He is more active and has more stamina. I still don't think his concentration is 100% of what it could be, but his health has come so far it is amazing. He barely had sniffles for a day (knock wood), where in the past it would have been bad bronchitis.

 

How are your kids doing? Sorry, but I am in and out and don't read all the posts. Would you mind giving me a brief summary (or pointing me to a post) of where you are at in 1) diagnostics 2) treatment and 3) results?

 

Claire

[kim]

A little clairfying information from a parent that has had this testing.

 

 

Porphyrin test $115.00 plus FedEx $30-50.00

 

4 page lab report measuring arsenic, plastics, lead and mercury.

 

Same specimen can be used for the neopterin test which tests for an overactive immune system. $65.00 in addition to the 115.00. (she reports the two of these test together are a wonderful thing)

 

You can hear Dr. Nataf's Autism One presentation on their website and

view the power points.

 

The parent posting this said that she uploaded their results (don't know how many family members were tested) to the files section ASD solutions.

 

Claire,

 

I will post about the boys as soon as I have a little more time.

[Claire]

Kim,

 

Very interesting...they told me normal first class mail was okay and it only cost $2.50.

 

Perfect that the porphyrin test measures lead and mercury. It will be interesting to see re plastics and arsenic too. I think he had high arsenic in one old blood test...will have to check.

 

I talked to Great Plains the other day and the woman on the phone told me they were suing Metametrix about the OAT test. Since I already paid for the Metametrix OAT kit, If my son's pediatrician agrees to sign for the Great Plains OAT test, I will have him do both of them at the same time, with the same sample. THAT should be an interesting experiment!

 

A little OT, but I have told many parents of ADD/ADHD kids--that I know in real life---about immune testing, even taken the time to write out a few tests. Anyway, not one of them has done any of this.

 

Claire

[Claire]

Ok, got the results back.

 

Son:Profile suggests a Mildly Mercury Toxic Effect.

Me: Profile suggests a remarkable Toxic Effect on bodily physiology.

 

We both were really high in Coproporphyrins, which indicates lead and mercury. But they didn't comment on lead, so I emailed them to ask if this is 'sufficient' to indicate lead.

 

I am glad that my son is only mildly toxic for mercury. After 2.5 years, I would hope that this would be under control, certainly his symptom improvement reflects this. I am still concerned about lead and will look into oral liquid EDTA again, to see if that is still a safe and effective method.

 

As for me, well, I may wait a couple of months and retest to see if the MT promotion is gradually lowering my levels. I don't mind trying chelation on myself. I know I still have yeast issues! At least I was FINALLY able to raise my antioxidant levels which should help. It took removing my amalgams to have supplementing antioxidants even have an impact on my levels.

 

Claire

 

ps THANK YOU KIM! I SEE THIS MERCURY URINE TEST AS A 'MUST HAVE' STARTING POINT TEST. Mercury is a likely root problem for many of our kids.

[kim]

Claire,

 

Just sent you an alternate email address for "the mom" who was using EDTA suppositories for chelating lead. Hope you are able to reach her. It may be the one you have, but thought I'd send it anyway, as there was one with greatplains in it at one time.

 

Thanks so much for this info!

 

Kim

[Claire]

Kim,

 

I just hung up from a consult with our DAN doctor. He is going to start us on a liposome-based EDTA program which is supposedly absorbed as well as IV EDTA.

 

www.lipoflow.com is the website, for those with lead (and maybe mercury) that want to ask their doctor about it.

 

He says EDTA is really really low risk, unlike DMSA, which he still has issues with in terms of the risk. They can even do the glutathione in that liposome form. He says we will need to increase metabolites when we do this as the mobilized lead will need help getting transported out. I believe he meant antioxidants, but we will find out.

 

He agreed that the lead in the bones leaches out into the blood when mobilized. Then if the body can eliminate it, great, then more leaches out until eventually you are okay.

 

He is researching something they do for mercury (their studies) and may use this program for me.

 

I will keep you posted...it may take him time.

 

Oh yes, he had gotten literature from the lab in France and will look at our tests to learn more. Hopefully his other patients will then benefit from that.

 

Claire

[kim]

Claire,

 

This all sounds like really good news. I'm so glad that word is spreading regarding this test and your Dr. is interested in it.

 

This was something I posted recently under the glutathione thread here.

 

Just popped up this morning (ASD_Sol.), a parent says they are about to start lipo gluthathione

http://www.brainchildnutritionals.com/Lipo_GSHx.html but she is concerned about yeast. Another parent responds, that while they saw improvements on lipo, they could not control yeast. They got a nebulizer and get glutathione in vails from Wellness now.

 

The response part of this post is from the ASD_Solution parent, that has responded to questions regarding the porphyrin/lead questions, so you may want to be on the look out for increase in yeast issues, if trying the lipoglut.

 

I have read many times, with challenge tests, that mercury will hide behind the lesser metals. So, until a certain amount is removed, you may not see mercury. This test, does not appear to have that limitation, although, I understand that the combination of the two, intensifies the effects. It appears to be part of the problem with mercury/alum. too.

 

With the bone leeching, and the MT promotion, maybe the continued high blood levels are a good thing, indicating removal, instead of ongoing exposure?

[kim]

Claire,

 

I tried the lab link. It's in french.

 

Going to order today for youngest, if you can get me contact info, that I can read.

 

Please don't make me learn french. I want to order today, before I chicken out!

 

Also, do you think I should save the $$$ on shipping Fed ex? Was the delay in your getting your test results mailing, or just that the lab is swamped?

 

Thanks,

 

Kim

[Claire]

Kim,

 

THere is an icon to click for English. I ordered by sending an email to the address you posted, with my mailing address, asking them to send me the porphyrin test kit. They emailed me back saying normal mail was just fine. Since we still showed issues, I assume it is, but just ask them directly if there is impact.

 

contact@labbio.net

 

Claire

[kim]

Claire, if you're reading, did you include credit card # in email when you ordered?

 

This is the response that I got from Lab;

 

The FedEx is the overnight delivery. Normal mail can take from 3-10 days depending on the post. The urine is stable in our tube for at least 15 days. It is up to you to choose the method of shipping.

 

You can pay by credit card.

 

Best regards,

 

K. Espiard Ph.D.

Laboratoire Philippe Auguste

119 Avenue Philippe Auguste

75011 Paris France

e-mail: contact@labbio.net

Tel: 0033143721398

[Guest]

Kim,

 

This is what I found on the chelatingkids2 yahoo forum files about the Porphyrin Test:

 

Get test by e-mailing lab. Test kit is free.

If you pay by credit card, write the info on a piece of paper.

 

Results are sent by e-mail and us mail.

 

Send it US priority mail. It is cheaper and easier. The lab said that the sample is stable for 15 days. A non infectous urine sample does not require special treatment by the us post office. Fedex makes a big deal about packaging customs etc. Also Don't use us mail/fedex 2 daY service. I tried this and had sample returned.

[kim]

Perfect Carolyn, Thanks so much.

 

I just got on here to edit message, to ask if the kit was free and you could include payment info, when returning sample like other labs do.

 

That mailing info. was helpful too.

 

Kim

[kim]

Samsmom,

 

I'm bumping this thread up for you.

 

This is the lab that Claire ordered the test from.

 

I have one sitting here for both of the boys too.

 

You might want to read on this page, it gives a little more info. Go about 1/3 way down and you will see

 

DETERMINING MERCURY TOXICITY (fractionated urine porphyrins test)

 

http://home.earthlink.net/~moriam/ANDY_INDEX.html

[samsmom]

Samsmom,

 

I'm bumping this thread up for you.

 

This is the lab that Claire ordered the test from.

 

I have one sitting here for both of the boys too.

 

You might want to read on this page, it gives a little more info. Go about 1/3 way down and you will see

 

DETERMINING MERCURY TOXICITY (fractionated urine porphyrins test)

 

http://home.earthlink.net/~moriam/ANDY_INDEX.html

 

 

Kim

Thanks for this. I think I'm too tired to read the posts that you bumped up tonight. I'll look at it again tomorrow when my head is a little more clear I think you're basically showing me that the lab in France is the best way to get this test done though!

 

Now that we're starting to get some 'real data' about what's going on with Sam, I'm excited but also feeling a little overwhelmed by the info that's coming out of it all. I dropped science studies as soon as possible when I was in school , and am really struggling to make sense of the info that I'm finding. (I studied French and German in college so I can translate the French stuff, but then wouldn't know what the heck it means once I'd done it!!!)

 

Thank goodness for those of you on this forum who have already been there and done it, and are willing to give your time and energy to passing on your knowledge. I am sooo grateful to have you here!

 

Thanks again

Sue