Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 In a message dated 09/05/2006 21:10:45 GMT Daylight Time, harebigears@... writes: have not done the porphyrins test as there was some talk recently that maybe not that accurate, cannot remember to be honest! >>>Hi Di I think a positive test is accurate but that a negative test 'could' be false, but like a CDSA or parasiteolgy test really, if they found it then it hasd to be there, if they don;t find anything, it could have been missed, it 'may' be accurate. I was told from reliable soiurce workiing with the lab that a chap had had a negative porphyrins test for Hg. He then took ALA and restested and was off the page. So tightly bound metals, not in the kidneys, may not show. Folks tend to want to belive (false) negatives and I cam concerned that people might do the test and think there is no problem when there could be a big one. Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 In a message dated 09/05/2006 21:10:45 GMT Daylight Time, harebigears@... writes: have not done the porphyrins test as there was some talk recently that maybe not that accurate, cannot remember to be honest! >>>Hi Di I think a positive test is accurate but that a negative test 'could' be false, but like a CDSA or parasiteolgy test really, if they found it then it hasd to be there, if they don;t find anything, it could have been missed, it 'may' be accurate. I was told from reliable soiurce workiing with the lab that a chap had had a negative porphyrins test for Hg. He then took ALA and restested and was off the page. So tightly bound metals, not in the kidneys, may not show. Folks tend to want to belive (false) negatives and I cam concerned that people might do the test and think there is no problem when there could be a big one. Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 In a message dated 09/05/2006 22:25:59 GMT Daylight Time, geirf@... writes: Fascinating,perhaps the lab ought to put in a recommanadation to do a pre test ALA challenge to make a reliable Porphyrine test ??Geir Flatabø >>>yes one of our mebers here had an essentially negative tes and has not used ALA. After she adds the ALAl to her protocol she said she would test again and promised to share the results with us. We use ALA so I can;'t do it. No idea how long stuff might register int he kidnesy once you start using it and I don;t wnat to stop Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 In a message dated 09/05/2006 22:25:59 GMT Daylight Time, geirf@... writes: Fascinating,perhaps the lab ought to put in a recommanadation to do a pre test ALA challenge to make a reliable Porphyrine test ??Geir Flatabø >>>yes one of our mebers here had an essentially negative tes and has not used ALA. After she adds the ALAl to her protocol she said she would test again and promised to share the results with us. We use ALA so I can;'t do it. No idea how long stuff might register int he kidnesy once you start using it and I don;t wnat to stop Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 In a message dated 09/05/2006 23:05:24 GMT Daylight Time, alvarez3@... writes: Are we talkingabout this test done in France?Before starting chelation in February I wanted to do the test. The kitgot to us two weeks later and we had already started. I emailed themwondering if I could do the test and the answer was "no; you have to >>>yes we are talkign Paris lab. They have said so many different things. Irembered if you were chelating they said to take day before you start the NEXT round. I actually think that would be the best time to take it but I have read they have said something esle again. I plan to talk to Nataf at Autism One and hope I can pin him down a bit more by going direct, watch this space Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 In a message dated 09/05/2006 23:05:24 GMT Daylight Time, alvarez3@... writes: Are we talkingabout this test done in France?Before starting chelation in February I wanted to do the test. The kitgot to us two weeks later and we had already started. I emailed themwondering if I could do the test and the answer was "no; you have to >>>yes we are talkign Paris lab. They have said so many different things. Irembered if you were chelating they said to take day before you start the NEXT round. I actually think that would be the best time to take it but I have read they have said something esle again. I plan to talk to Nataf at Autism One and hope I can pin him down a bit more by going direct, watch this space Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Fascinating, perhaps the lab ought to put in a recommanadation to do a pre test ALA challenge to make a reliable Porphyrine test ?? Geir Flatabø Mum231ASD@... skrev: > In a message dated 09/05/2006 21:10:45 GMT Daylight Time, > harebigears@... writes: > > have not done the porphyrins test as there was some talk recently > that maybe not that accurate, cannot remember to be honest! > > >>>Hi Di > > I think a positive test is accurate but that a negative test 'could' > be false, but like a CDSA or parasiteolgy test really, if they found > it then it hasd to be there, if they don;t find anything, it could > have been missed, it 'may' be accurate. > > I was told from reliable soiurce workiing with the lab that a chap had > had a negative porphyrins test for Hg. He then took ALA and restested > and was off the page. So tightly bound metals, not in the kidneys, may > not show. Folks tend to want to belive (false) negatives and I cam > concerned that people might do the test and think there is no problem > when there could be a big one. > > Mandi x > > > DISCLAIMER > No information contained in this post is to be construed as medical > advice. If you need medical advice, please seek it from a suitably > qualified practitioner. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Fascinating, perhaps the lab ought to put in a recommanadation to do a pre test ALA challenge to make a reliable Porphyrine test ?? Geir Flatabø Mum231ASD@... skrev: > In a message dated 09/05/2006 21:10:45 GMT Daylight Time, > harebigears@... writes: > > have not done the porphyrins test as there was some talk recently > that maybe not that accurate, cannot remember to be honest! > > >>>Hi Di > > I think a positive test is accurate but that a negative test 'could' > be false, but like a CDSA or parasiteolgy test really, if they found > it then it hasd to be there, if they don;t find anything, it could > have been missed, it 'may' be accurate. > > I was told from reliable soiurce workiing with the lab that a chap had > had a negative porphyrins test for Hg. He then took ALA and restested > and was off the page. So tightly bound metals, not in the kidneys, may > not show. Folks tend to want to belive (false) negatives and I cam > concerned that people might do the test and think there is no problem > when there could be a big one. > > Mandi x > > > DISCLAIMER > No information contained in this post is to be construed as medical > advice. If you need medical advice, please seek it from a suitably > qualified practitioner. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 > > hi Mandi, thanks for that, feel a real duh brain now! really interesting though and will think again about doing the test though judging by the urine results perhaps I already know he has loads of lead in him. Di x > In a message dated 09/05/2006 21:10:45 GMT Daylight Time, > harebigears@... writes: > > have not done the porphyrins test as there was some talk recently > that maybe not that accurate, cannot remember to be honest! > > > > >>>Hi Di > > I think a positive test is accurate but that a negative test 'could' be > false, but like a CDSA or parasiteolgy test really, if they found it then it hasd > to be there, if they don;t find anything, it could have been missed, it > 'may' be accurate. > > I was told from reliable soiurce workiing with the lab that a chap had had a > negative porphyrins test for Hg. He then took ALA and restested and was off > the page. So tightly bound metals, not in the kidneys, may not show. Folks > tend to want to belive (false) negatives and I cam concerned that people might > do the test and think there is no problem when there could be a big one. > > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 > > hi Mandi, thanks for that, feel a real duh brain now! really interesting though and will think again about doing the test though judging by the urine results perhaps I already know he has loads of lead in him. Di x > In a message dated 09/05/2006 21:10:45 GMT Daylight Time, > harebigears@... writes: > > have not done the porphyrins test as there was some talk recently > that maybe not that accurate, cannot remember to be honest! > > > > >>>Hi Di > > I think a positive test is accurate but that a negative test 'could' be > false, but like a CDSA or parasiteolgy test really, if they found it then it hasd > to be there, if they don;t find anything, it could have been missed, it > 'may' be accurate. > > I was told from reliable soiurce workiing with the lab that a chap had had a > negative porphyrins test for Hg. He then took ALA and restested and was off > the page. So tightly bound metals, not in the kidneys, may not show. Folks > tend to want to belive (false) negatives and I cam concerned that people might > do the test and think there is no problem when there could be a big one. > > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 HI Mandi, I have not read the original post on this, but I am surprised that members of the list are talking about this test at the same time they are chelating (or I have missundertood the posts :-). Are we talking about this test done in France? Before starting chelation in February I wanted to do the test. The kit got to us two weeks later and we had already started. I emailed them wondering if I could do the test and the answer was " no; you have to wait three weeks before doing this test if you are chelating " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 HI Mandi, I have not read the original post on this, but I am surprised that members of the list are talking about this test at the same time they are chelating (or I have missundertood the posts :-). Are we talking about this test done in France? Before starting chelation in February I wanted to do the test. The kit got to us two weeks later and we had already started. I emailed them wondering if I could do the test and the answer was " no; you have to wait three weeks before doing this test if you are chelating " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 In a message dated 10/05/2006 21:21:02 GMT Daylight Time, mark.grabiec@... writes: I'd love to know too. Lead is pouring out of Tom - I want to know how much is in there. >>>you can;t find that out I'm afraid, you just have to hang ion there and not stop until he stops getting better, and then do some more 3 months later to sure. Long long road, the only way forward in to head down it Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 In a message dated 10/05/2006 21:21:02 GMT Daylight Time, mark.grabiec@... writes: I'd love to know too. Lead is pouring out of Tom - I want to know how much is in there. >>>you can;t find that out I'm afraid, you just have to hang ion there and not stop until he stops getting better, and then do some more 3 months later to sure. Long long road, the only way forward in to head down it Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 I'd love to know too. Lead is pouring out of Tom - I want to know how much is in there. But I don't want or need any more conflicting info - and indeed can't afford it. He hates his EDTA suppositories more than anything ever. But his behaviour is better on than off. Poor little man. Steph > > > In a message dated 09/05/2006 23:05:24 GMT Daylight Time, alvarez3@... > writes: > > Are we talking > about this test done in France? > Before starting chelation in February I wanted to do the test. The kit > got to us two weeks later and we had already started. I emailed them > wondering if I could do the test and the answer was " no; you have to > > > > >>>yes we are talkign Paris lab. They have said so many different things. > Irembered if you were chelating they said to take day before you start the NEXT > round. I actually think that would be the best time to take it but I have > read they have said something esle again. I plan to talk to Nataf at > Autism One and hope I can pin him down a bit more by going direct, watch this > space > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 I'd love to know too. Lead is pouring out of Tom - I want to know how much is in there. But I don't want or need any more conflicting info - and indeed can't afford it. He hates his EDTA suppositories more than anything ever. But his behaviour is better on than off. Poor little man. Steph > > > In a message dated 09/05/2006 23:05:24 GMT Daylight Time, alvarez3@... > writes: > > Are we talking > about this test done in France? > Before starting chelation in February I wanted to do the test. The kit > got to us two weeks later and we had already started. I emailed them > wondering if I could do the test and the answer was " no; you have to > > > > >>>yes we are talkign Paris lab. They have said so many different things. > Irembered if you were chelating they said to take day before you start the NEXT > round. I actually think that would be the best time to take it but I have > read they have said something esle again. I plan to talk to Nataf at > Autism One and hope I can pin him down a bit more by going direct, watch this > space > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Hi, Jill. Yes, I've seen the paper. It comes from France, I believe. They say in the paper that porphyrins are a very sensitive way to detect heavy metal toxicity, and they can pin it down to which metal, e.g. mercury. Rich > > Rich, there is work I haven't even looked at in terms of urinary > porphyrins and autism...have you looked at it? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Okday. Do you think its imporant? Teri Small seemed excited about it. Rich, I sent you the Deth DVD today, via first class mail. If you dont' get it in the next week or so let me know. > > > > Rich, there is work I haven't even looked at in terms of urinary > > porphyrins and autism...have you looked at it? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Hi, Jill. Thank you for mailing the DVD! I'll be looking for it. I haven't thoroughly studied the interactions between the porphyrins and the heavy metals, but it does sound like a promising way to measure heavy metals in the body. The good thing about it is that you don't need to do a chelator challenge, which, as we know from Marcia's experience, can cause big problems if glutathione is not up. As you may know, the porphyrins are a series of compounds that are found in the pathway for synthesizing heme, which is used in hemoglobin and the cytochrome molecules. Apparently different heavy metals bind to the porphyrins in different proportions, and that's how you can sort out which one or ones are present. Some PWCs also have porphyria, which shows up as intolerance of sunshine. The light, both at the infrared and ultraviolet ends of the spectrum, reacts with the porphryins in the blood, and this ends up producing oxidizing free radicals, which again tend to deplete glutathione and put the person into a crash. But for this to happen, the person must have a genetic issue in one of the enzymes of the porphyrin pathway, so it doesn't affect most PWCs. Rich > > > > > > Rich, there is work I haven't even looked at in terms of urinary > > > porphyrins and autism...have you looked at it? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 My daughter's urine test shows she has high uroporphyrin - 18.3 ug/g (normal 4.3-16.2 ug/g). Does anyone know what this means? Thanks! Ricky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 If you got the test from the French lab, they provide interpretation of the results. TJ ________________________________ From: Ricky Yu <rickyyu8888@...> Sent: Thu, August 26, 2010 1:22:03 PM Subject: [ ] Porphyrins  My daughter's urine test shows she has high uroporphyrin - 18.3 ug/g (normal 4.3-16.2 ug/g). Does anyone know what this means? Thanks! Ricky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 This one was from Specialty Labs in CA. ________________________________ From: TJ Werth <tj_werth@...> Sent: Thu, August 26, 2010 4:41:38 PM Subject: Re: [ ] Porphyrins  If you got the test from the French lab, they provide interpretation of the results. TJ ________________________________ From: Ricky Yu <rickyyu8888@...> Sent: Thu, August 26, 2010 1:22:03 PM Subject: [ ] Porphyrins  My daughter's urine test shows she has high uroporphyrin - 18.3 ug/g (normal 4.3-16.2 ug/g). Does anyone know what this means? Thanks! Ricky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 TJ, Did you have your kids tested on porphyrins, or just have a hair test? Is it too late to send urine to the french lab after 5 rounds of chelation? Ricky ________________________________ From: TJ Werth <tj_werth@...> Sent: Thu, August 26, 2010 4:41:38 PM Subject: Re: [ ] Porphyrins  If you got the test from the French lab, they provide interpretation of the results. TJ ________________________________ From: Ricky Yu <rickyyu8888@...> Sent: Thu, August 26, 2010 1:22:03 PM Subject: [ ] Porphyrins  My daughter's urine test shows she has high uroporphyrin - 18.3 ug/g (normal 4.3-16.2 ug/g). Does anyone know what this means? Thanks! Ricky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 We did a porphryns test from the french lab, and a hair test later out of curiosity. Neither is needed. If you are seeing results from chelation, this is the most conclusive. TJ ________________________________ From: Ricky Yu <rickyyu8888@...> Sent: Thu, August 26, 2010 3:00:55 PM Subject: Re: [ ] Porphyrins TJ, Did you have your kids tested on porphyrins, or just have a hair test? Is it too late to send urine to the french lab after 5 rounds of chelation? Ricky ________________________________ From: TJ Werth <tj_werth@...> Sent: Thu, August 26, 2010 4:41:38 PM Subject: Re: [ ] Porphyrins If you got the test from the French lab, they provide interpretation of the results. TJ ________________________________ From: Ricky Yu <rickyyu8888@...> Sent: Thu, August 26, 2010 1:22:03 PM Subject: [ ] Porphyrins My daughter's urine test shows she has high uroporphyrin - 18.3 ug/g (normal 4.3-16.2 ug/g). Does anyone know what this means? Thanks! Ricky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2010 Report Share Posted August 27, 2010 According to the French lab interpretations, high UP is indicative of aluminum toxicity. Jo > > ________________________________ > From: Ricky Yu <rickyyu8888@...> > > Sent: Thu, August 26, 2010 1:22:03 PM > Subject: [ ] Porphyrins > > > My daughter's urine test shows she has high uroporphyrin - 18.3 ug/g (normal > 4.3-16.2 ug/g). Does anyone know what this means? > > Thanks! > > Ricky > > Quote Link to comment Share on other sites More sharing options...
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