Laurie in Az Posted October 29, 2007 Report Share Posted October 29, 2007 I am confused. I called Brightspot to order a testing kit for pyroluria. The person that I spoke with told me that there is no need to stop giving supps prior to the test. . She said that supps will make no difference in the levels. She also said that the pyrroles in the urine are effected by stress. My son's supps are in part to decrease stress. Wouldn't inositol and B6 decrease stress and therefore decrease the pyrroles?I also remember reading that several members found dramatic drops in their pyrrole levels with the correct supplementation. I had also wanted to retest to see if the supps were working. Can someone clarify some of this for me? Thank you, Laurie Link to comment Share on other sites More sharing options...
ad_ccl Posted October 29, 2007 Report Share Posted October 29, 2007 When I did this test a couple of years ago - I was advised to STOP supplements for a week ( I think it was only a week). There was someone called FJ on Braintalk who was the expert on this - braintalk crashed and her posts may be gone too - I have not been to the site since the crash. Link to comment Share on other sites More sharing options...
michele Posted October 29, 2007 Report Share Posted October 29, 2007 We used Direct Healthcare Access II Inc. at www.pyrolauriatesting.com The directions and Dr.'s order said to stop vitamin B or zinc 24-48 hrs. prior to specimen collection. We have been taking zinc picolinate for four days at 30 mg. Tomorrow I am supposed to up it to 60 mg. We have not added vit B-6 yet other then daily vitamins B-6 1mg. It is hard to see if there are any changes yet. He had his seat changed at school today for the beginning of the new nine weks. He is stuck on the fact he moved to green and he doesn't like green. So emotionally he still seems to be having a difficult time with change. I think 2-4 months is when you recheck pyrolauria to see if treatment is working. Michele I am confused. I called Brightspot to order a testing kit for pyroluria. The person that I spoke with told me that there is no need to stop giving supps prior to the test. . She said that supps will make no difference in the levels. She also said that the pyrroles in the urine are effected by stress. My son's supps are in part to decrease stress. Wouldn't inositol and B6 decrease stress and therefore decrease the pyrroles?I also remember reading that several members found dramatic drops in their pyrrole levels with the correct supplementation. I had also wanted to retest to see if the supps were working. Can someone clarify some of this for me? Thank you, Laurie Link to comment Share on other sites More sharing options...
Chemar Posted October 29, 2007 Report Share Posted October 29, 2007 Hi yes, we were also told to stop supps one week before the pyroluria testing and yes, sadly all FJ's very informed and detailed posts on pyroluria and specifically tics resulting from it, were lost in the braintalk crash along with tons of other valuable info . It's a hollow shell of its old self which is why I have given all my health forum energy here and at NeuroTalk since ..... I am trying to remember which lab did our testing , it's so long ago now, and it was done thru our integrative doctor's office, but I know it wasnt Brightspot Link to comment Share on other sites More sharing options...
Laurie in Az Posted October 29, 2007 Author Report Share Posted October 29, 2007 Brightspot did say that this is a NEW policy,based on experience?research?. They claim that supps or no supps did not make a difference. I did however find people mentioning dramatic drops in their pyrrole levels after starting the supp program. I think that I will take him off of Zn, and B6 48 hr. prior to the test. I did find this link to an old FJ post on pyroluria. FJ,where are you?!!! http://www.dr-bob.org/babble/alter/20050510/msgs/498689.html Laurie Link to comment Share on other sites More sharing options...
Chemar Posted October 30, 2007 Report Share Posted October 30, 2007 oh great that you found at least that Laurie! I had a thread running here a few years ago linking to FJ's detailed pyroluria thread on BT and I know it helped so many people. good to have that copied post you linked, so thank you very much Link to comment Share on other sites More sharing options...
bmom Posted October 30, 2007 Report Share Posted October 30, 2007 The people that are treating pyloria: Do you use B complex or just B6? Link to comment Share on other sites More sharing options...
Guest Posted October 31, 2007 Report Share Posted October 31, 2007 I used Direct Healthcare Access, and I believe that I stopped only zinc and b6 48 hours prior to the initial testing. I was not required to stop the zinc or b6 for any pyroluria testing after my initial test. bmom-I use both b-complex & p5p(activated b6) Carolyn Link to comment Share on other sites More sharing options...
Laurie in Az Posted October 31, 2007 Author Report Share Posted October 31, 2007 I used Direct Healthcare Access, and I believe that I stopped only zinc and b6 48 hours prior to the initial testing. I was not required to stop the zinc or b6 for any pyroluria testing after my initial test. bmom-I use both b-complex & p5p(activated b6) Carolyn B-mom - Be careful with the B complex. My DS did not tolerate it at all! The B6 and p-5-p(one or the other or both) are the specific Bs for pyroluria.B2 is also needed with the B6. I don't know if the B2 in a good multi would be enough. Laurie Link to comment Share on other sites More sharing options...
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