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Is it worth for me to do some tests , an adult though I'm with TS


simonzl
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Oh my gosh!!!! Most definitely!!!! If you have any of those things and can address them I guarantee you will feel better and most possibly tic less! Our own dear Carolyn is proof of that! She took the tests, did what was necessary and is med free and doing very well! Please please have the tests and let us all know. I'm so excited that you are considering this step - I know it will be hard work but soooooo worth it!

Good luck and keep us posted!

Giselle

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Hi Simon

 

honestly it is hard to try to rate one test as more important than the others cos it all depends on which is relevant to you, and you wont know till you are tested!

 

A good Integrative or DAN doctor, who has experience treating TS,should be able to determine what is best to do first.

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Hi Simon, I agree they are all important and should you test that something is an issue for you, acting on the test results will give you so much relief you will think that that was the most important test. But I think I might try a pyroluria test first because you will find so much relief getting the extra B6 and zinc that having that would require. The other really important one would be the yeast test (OAT). It seems soooo many people with TS have a yeast problem that the sooner you get on that the better and it will help with all the other things that come down the line. In other words, if you start dealing with the allergens but still have yeast you will not see the results as quickly. And then that would be the very next thing I would do - the delayed food allergy test - so important. Then the heavy metals test. Should you have heavy metals having done all the rest will help you to be healthier to go through the process of eliminating them. Now if you get the doctor Chemar is talking about they can do many of the tests all at once. Of course that's realizing the costs all at once but it would definitely get you going a lot quicker. An Environmental doctor could also help in this as they would do the same protocol.

 

Good luck and keep us posted.

Giselle

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What's DAN doctor anyway ?

 

I think I will do the test one by one .

 

Should I go through my family doctor , locally ? and do the test somewhere locally ? or I do test in US by sending my samples , like hair .

 

Can you recommend me some organizations to do the test for me ?

Many many thanks.

 

Simon

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Hi Simon, a DAN doctor is a doctor who practices by the DAN protocol - DAN stands for Defeat Autism Now and they do many tests like we've been discussing to find out what the toxic burden on the body is and then offer solutions to help reduce the toxic load.

 

I expect that many of the tests COULD be done by your doctor but many doctors are not familiar with them or don't believe in them because they've not been trained to do them - if he/she is willing and familiar with the tests then you have a wonderful doctor. I think the tide will turn when doctors look to the nutritional way of seeing the body but as of today they only get a week or so of nutrition in med school (if that!). Most of the tests we are talking about require a doctor to order them, and for sure a doctor to understand the results so I would most definitely encourage you to look for either an integrative, environmental, or DAN doctor. They could also possibly save you lots of money because once you tell them about what's going on with you they might be able to rule out some of the above tests and hence save you money. I know our DAN doctor is treating some patients who live in Japan and has conferences with them over the phone so if you aren't in the US I think this can be done. There is also a Dr. Robbins, I believe, who's an evironmental doctor out of Florida who will also do the same, at least he used to.

 

Giselle

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Simonzl,

 

Here are a couple of sites where can order pyroluria testing. I got these from Braintalk where Carolyn and FJ posted.

 

http://www.pyroluriatesting.com/ Carolyn

 

Bio Center Lab in Wichita, Kansas (Phone: 316-684-7784 or 1-800-494-7785). Here is their web site for more information: http://brightspot.org/biocenter. FJ at Braintalk recommends. Refers to it as Gold Standard for Pyroluria testing. She said you do not need a Dr.s signature to order, in one of her posts.

 

Here is a place you can order a hair mineral/metals test from, no Dr. signature should be required to do this one either and they are using Doctors Data for this test which is supposed to be the one Pfeiffer uses and has the largest data base for hair testing.

 

http://www.directlabs.com/testtypes.php

 

You could also ask your reg. Dr. to do a copper/zinc test for you. I beleive you will get info on zinc from the pyroluria testing though.

 

As Giselle said, probably best to have a Dr. guiding you, but thought I would mention these, as their not that expensive and it is something you could get started on your own if you wanted to.

 

Kim

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Hi Simonzl,

 

I know Dr. Robbins does phone consultations, but I'm not for sure if you have to make a trip there first. I see Dr. Robbins and he's very good. If your going to get allergy testing done you would have to go there as far as other blood tests, etc. I'm not for sure. I also see a local environmental doctor. I would suggest all the tests that have been mentioned before heavy metal testing. I would personally save that until the last because your going to want to work on vitamin levels and getting yeast in more of control before you would try anything with getting rid of heavy metals anyways. Direct Labs is a very good site if your doctor won't order a test, but I really suggest finding a doctor if possible so they can help you work through it. You also pay extra when you order a test through direct labs.

 

Here's the thread on finding medical help: http://www.latitudes.org/forums/index.php?showtopic=565

Those links also include doctor's from Canada. Doctors from the American Academy of Environmental Medicine can be very good also so look into that also.

 

Carolyn

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  • 3 weeks later...

It seems that http://www.pyroluriatesting.com/ is not available to Canada .

 

 

Simonzl,

 

Here are a couple of sites where can order pyroluria testing. I got these from Braintalk where Carolyn and FJ posted.

 

http://www.pyroluriatesting.com/ Carolyn

 

Bio Center Lab in Wichita, Kansas (Phone: 316-684-7784 or 1-800-494-7785). Here is their web site for more information: http://brightspot.org/biocenter. FJ at Braintalk recommends. Refers to it as Gold Standard for Pyroluria testing. She said you do not need a Dr.s signature to order, in one of her posts.

 

Here is a place you can order a hair mineral/metals test from, no Dr. signature should be required to do this one either and they are using Doctors Data for this test which is supposed to be the one Pfeiffer uses and has the largest data base for hair testing.

 

http://www.directlabs.com/testtypes.php

 

You could also ask your reg. Dr. to do a copper/zinc test for you. I beleive you will get info on zinc from the pyroluria testing though.

 

As Giselle said, probably best to have a Dr. guiding you, but thought I would mention these, as their not that expensive and it is something you could get started on your own if you wanted to.

 

Kim

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simonzl,

 

I'm not for sure I understand what you mean so maybe someone from Canada or who knows more on this might be able to help you better. These are certain labs that your lab kit gets sent to. I'm not sure if any labs exist for this testing in Canada. You don't ever have to go to the lab. The pyroluria testing is done right in your home after receiving the test kit. That's the same with any stool or urine test also. For blood you would have to take the kit into a patient service center at a lab or a doctor's office to have it drawn. From there they would send it off to the lab you wanted it to go to. Have you tried calling the the labs? I wouldn't see why they wouldn't take you. It may cost more for shipping, but I'm not for sure. I know on the kit order form you can choose your location in Canada.

 

Carolyn

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Thanks . I ordered the kit already . I was selecting the wrong option and I called them and ordered successfully .

 

But I am taking Bonnie's , should I stop the supplement for a while for the test ? cuz , they need my urine , would that be accurate when I 'm taking some supplement ?

 

Simon

 

 

simonzl,

 

I'm not for sure I understand what you mean so maybe someone from Canada or who knows more on this might be able to help you better. These are certain labs that your lab kit gets sent to. I'm not sure if any labs exist for this testing in Canada. You don't ever have to go to the lab. The pyroluria testing is done right in your home after receiving the test kit. That's the same with any stool or urine test also. For blood you would have to take the kit into a patient service center at a lab or a doctor's office to have it drawn. From there they would send it off to the lab you wanted it to go to. Have you tried calling the the labs? I wouldn't see why they wouldn't take you. It may cost more for shipping, but I'm not for sure. I know on the kit order form you can choose your location in Canada.

 

Carolyn

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Simon,

 

Your welcome. Glad you were able to get the kit ordered. For the first testing you should stop any vitamins that contain zinc or b6. I can't recall how long before, it may have just been a couple days or a 2 weeks. Your directions should tell you that when you get the kit and you can also contact them if you have any questions. Someone else here might remember how long your supposed to stop taking them for.

 

Carolyn

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  • 3 weeks later...

Finally , I got the Pyroluria Testing done .

Kryptopyrrole corrected : 17.16 (Calculated)

Kryptopyrrole corrected : 27.25 HIGH (actual)

Specific gravity 1.027

 

What does that mean ?

 

What sort of test should I do next ?

 

I'm in Canada . I just wonder , if other test could be done for FREE if I ask my family doctor to do so ...

anybody has similar experience ?

 

Thanks

 

Simon

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