Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Hi Mandi I have just been talking to DH about our negative results. As you know we have only done one round of DMSA (Andy's protocol) and have decided to carry on with the DMSA for a while. We also agreed that we should introduce ALA at around round 5. So I think we will fit your criteria, in about a months time. Do you need to know anything else? Let me know. Kay. Porphyrins Testing I ran a mates test by Andy Cutler when it first came out. He said it was valid - for identifying Mercury toxicity ONLY. That the other ones reported are ambiguous and the test gives no indication of the LEVEL of toxicity. Still I thought quite useful. Then I chat to another mum who reports that a chap who came back negative for Hg, who later took ALA, when test was reperated he was off the page with Hg..............................Hmmmmmmmmm. Yeah well I always thought the ALA worked but??? what use is this test I ask myself now if a toxic person can be reported as negative. The hair test isn't foolproof but its looking a lot more useful and cheaper from where I am sitting right now. I was hoping we would be able to use this non invasive easy test to prove our kids were toxic in an informal study.....................hmmmmmmmmmm again. So then s results, I think he is doign TD DMPS, so I would interpret that as most likely body stores are down. Go with the ALA on 3 hourly protocol and repeat that test and se what comes back. I plan to play with this test when I have the funding. Trouble is we use ALA already and I'm not prepared to stop that for 3-4 months to prove my point while negativelty affecting my sons treatment. So anybody not doen ALA and does have low/negative results want to test this out? This is my perosnal opinion BTW Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Thanks, Mandi, for thinking out loud about this. I also was going to do this when I thought we were nearing the end, but reading those posts, I am unsure also. Porphyrins Testing I ran a mates test by Andy Cutler when it first came out. He said it was valid - for identifying Mercury toxicity ONLY. That the other ones reported are ambiguous and the test gives no indication of the LEVEL of toxicity. Still I thought quite useful. Then I chat to another mum who reports that a chap who came back negative for Hg, who later took ALA, when test was reperated he was off the page with Hg..............................Hmmmmmmmmm. Yeah well I always thought the ALA worked but??? what use is this test I ask myself now if a toxic person can be reported as negative. The hair test isn't foolproof but its looking a lot more useful and cheaper from where I am sitting right now. I was hoping we would be able to use this non invasive easy test to prove our kids were toxic in an informal study.....................hmmmmmmmmmm again. So then s results, I think he is doign TD DMPS, so I would interpret that as most likely body stores are down. Go with the ALA on 3 hourly protocol and repeat that test and se what comes back. I plan to play with this test when I have the funding. Trouble is we use ALA already and I'm not prepared to stop that for 3-4 months to prove my point while negativelty affecting my sons treatment. So anybody not doen ALA and does have low/negative results want to test this out? This is my perosnal opinion BTW Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Hi Mandi We also are going to carry on and chelate, with DMSA suppositories, Dr H said we could add in ALA after a couple of rounds. I will retest in after a couple of months and see what comes out. The test is too new to know if I can trust it and there is still alot of work to do with Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 Similar things you also might see when chelating, and measuring urinary Hg. first no Hg ( but other metals) then Hg comes and leaves . Geir Flatabø Liora Crespin skrev: >I know about another family in France with the same story: test >Porphyrins sow high on Hg, then with biomed (not chelation, but >MB12, ttdf, glutathion...) next test sow low Hg, Then after using >ALA (not by Cutler protocol, but more like an antioxidant), next >test sow again high Hg, Dr Skorupka think it is the Hg been living >the brain... > >Liora > > > > >>Hi Mandi >> >>I have just been talking to DH about our negative results. As you >> >> >know we have only done one round of DMSA (Andy's protocol) and have >decided to carry on with the DMSA for a while. We also agreed that >we should introduce ALA at around round 5. So I think we will fit >your criteria, in about a months time. > > >>Do you need to know anything else? Let me know. >> >>Kay. >> Porphyrins Testing >> >> >> I ran a mates test by Andy Cutler when it first came out. He >> >> >said it was valid - for identifying Mercury toxicity ONLY. That the >other ones reported are ambiguous and the test gives no indication >of the LEVEL of toxicity. > > >> Still I thought quite useful. Then I chat to another mum who >> >> >reports that a chap who came back negative for Hg, who later took >ALA, when test was reperated he was off the page with >Hg..............................Hmmmmmmmmm. Yeah well I always >thought the ALA worked but??? what use is this test I ask myself now >if a toxic person can be reported as negative. > > >> The hair test isn't foolproof but its looking a lot more useful >> >> >and cheaper from where I am sitting right now. > > >> I was hoping we would be able to use this non invasive easy test >> >> >to prove our kids were toxic in an informal >study.....................hmmmmmmmmmm again. > > >> So then s results, I think he is doign TD DMPS, so I would >> >> >interpret that as most likely body stores are down. Go with the ALA >on 3 hourly protocol and repeat that test and se what comes back. > > >> I plan to play with this test when I have the funding. Trouble >> >> >is we use ALA already and I'm not prepared to stop that for 3-4 >months to prove my point while negativelty affecting my sons >treatment. > > >> So anybody not doen ALA and does have low/negative results want >> >> >to test this out? > > >> This is my perosnal opinion BTW >> >> 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. > > >> >> >>------------------------------------------------------------------- >> >> >----------- > > >> ! GROUPS LINKS >> >> a.. Visit your group " Autism Treatment " on the web. >> >> b.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2006 Report Share Posted April 5, 2006 In a message dated 05/04/2006 10:57:43 GMT Daylight Time, dekkerrobert@... writes: or is the test not showing up what might be locked in his brain? >>>No it doesn;t show that IMHO, ort what is stored in bones and other organs Sorry no good on results without seing the picture LOL Mandi inUK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2006 Report Share Posted April 5, 2006 Just got back our results (had to re-do test cos first one might have been exposed to light). Now what does this mean!!!? UP 6 7cxP 2 6cxp 0.3 5pcp 0.9 preco 2.8 cP 14 Comment is 'Reduced porphyrinuria with end metabolites decrease'. Does these results mean he has less lead and mercury than even is 'normal'? I find it hard to believe. or is the test not showing up what might be locked in his brain? robert > > > > > >>Hi Mandi > >> > >>I have just been talking to DH about our negative results. As you > >> > >> > >know we have only done one round of DMSA (Andy's protocol) and have > >decided to carry on with the DMSA for a while. We also agreed that > >we should introduce ALA at around round 5. So I think we will fit > >your criteria, in about a months time. > > > > > >>Do you need to know anything else? Let me know. > >> > >>Kay. > >> Porphyrins Testing > >> > >> > >> I ran a mates test by Andy Cutler when it first came out. He > >> > >> > >said it was valid - for identifying Mercury toxicity ONLY. That the > >other ones reported are ambiguous and the test gives no indication > >of the LEVEL of toxicity. > > > > > >> Still I thought quite useful. Then I chat to another mum who > >> > >> > >reports that a chap who came back negative for Hg, who later took > >ALA, when test was reperated he was off the page with > >Hg..............................Hmmmmmmmmm. Yeah well I always > >thought the ALA worked but??? what use is this test I ask myself now > >if a toxic person can be reported as negative. > > > > > >> The hair test isn't foolproof but its looking a lot more useful > >> > >> > >and cheaper from where I am sitting right now. > > > > > >> I was hoping we would be able to use this non invasive easy test > >> > >> > >to prove our kids were toxic in an informal > >study.....................hmmmmmmmmmm again. > > > > > >> So then s results, I think he is doign TD DMPS, so I would > >> > >> > >interpret that as most likely body stores are down. Go with the ALA > >on 3 hourly protocol and repeat that test and se what comes back. > > > > > >> I plan to play with this test when I have the funding. Trouble > >> > >> > >is we use ALA already and I'm not prepared to stop that for 3-4 > >months to prove my point while negativelty affecting my sons > >treatment. > > > > > >> So anybody not doen ALA and does have low/negative results want > >> > >> > >to test this out? > > > > > >> This is my perosnal opinion BTW > >> > >> 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. > > > > > >> > >> > >>------------------------------------------------------------------ - > >> > >> > >----------- > > > > > >> ! GROUPS LINKS > >> > >> a.. Visit your group " Autism Treatment " on the web. > >> > >> b.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2006 Report Share Posted April 5, 2006 Hi > Comment is 'Reduced porphyrinuria with end metabolites decrease'. > I sent off three samples for testing, one for me and one for each of my boys (1 ASD).This result is very like my own one. I was advised to retest. Now I must confess I didnt read the instructions properly when collecting the sample with the self filling vial and ended up having to take the top off the tube and filling it that way. I then read the instructions and collected my boys' samples properly! I think this is why my result was different that I didn't fill the bottle in the right way. Also when I shook the vial to mix up the powder inside there seemed less powder than in the other two. I did email the lab for their comments on my ASD son's results but they didn't reply. You could try ringing them for further informatin. Also I remember Mandi and Tina saying it is a measure of metals in the kidneys,not in the brain and bones. We are going to chelate anyway,despite my son's result being negative. HTH > > > > > > > > > > > > > > > > > > > >>Hi Mandi > > >> > > >>I have just been talking to DH about our negative results. As you > > >> > > >> > > >know we have only done one round of DMSA (Andy's protocol) and > have > > >decided to carry on with the DMSA for a while. We also agreed that > > >we should introduce ALA at around round 5. So I think we will fit > > >your criteria, in about a months time. > > > > > > > > >>Do you need to know anything else? Let me know. > > >> > > >>Kay. > > >> Porphyrins Testing > > >> > > >> > > >> I ran a mates test by Andy Cutler when it first came out. He > > >> > > >> > > >said it was valid - for identifying Mercury toxicity ONLY. That > the > > >other ones reported are ambiguous and the test gives no indication > > >of the LEVEL of toxicity. > > > > > > > > >> Still I thought quite useful. Then I chat to another mum who > > >> > > >> > > >reports that a chap who came back negative for Hg, who later took > > >ALA, when test was reperated he was off the page with > > >Hg..............................Hmmmmmmmmm. Yeah well I always > > >thought the ALA worked but??? what use is this test I ask myself > now > > >if a toxic person can be reported as negative. > > > > > > > > >> The hair test isn't foolproof but its looking a lot more useful > > >> > > >> > > >and cheaper from where I am sitting right now. > > > > > > > > >> I was hoping we would be able to use this non invasive easy > test > > >> > > >> > > >to prove our kids were toxic in an informal > > >study.....................hmmmmmmmmmm again. > > > > > > > > >> So then s results, I think he is doign TD DMPS, so I would > > >> > > >> > > >interpret that as most likely body stores are down. Go with the > ALA > > >on 3 hourly protocol and repeat that test and se what comes back. > > > > > > > > >> I plan to play with this test when I have the funding. Trouble > > >> > > >> > > >is we use ALA already and I'm not prepared to stop that for 3-4 > > >months to prove my point while negativelty affecting my sons > > >treatment. > > > > > > > > >> So anybody not doen ALA and does have low/negative results want > > >> > > >> > > >to test this out? > > > > > > > > >> This is my perosnal opinion BTW > > >> > > >> 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. > > > > > > > > >> > > >> > > >>--------------------------------------------------------------- --- > - > > >> > > >> > > >----------- > > > > > > > > >> ! GROUPS LINKS > > >> > > >> a.. Visit your group " Autism Treatment " on the web. > > >> > > >> b.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2006 Report Share Posted April 5, 2006 Hi , I didn’t fill the bottle properly either with H sample. We couldn’t get it to work as it should so just did as you did and took the top off. However the sample came back with lead off the chart and slightly raised mercury. Sally From: Autism Treatment [mailto:Autism Treatment ] On Behalf Of Charman Sent: Wednesday, April 05, 2006 11:07 AM To: Autism Treatment Subject: Re: Porphyrins Testing Hi > Comment is 'Reduced porphyrinuria with end metabolites decrease'. > I sent off three samples for testing, one for me and one for each of my boys (1 ASD).This result is very like my own one. I was advised to retest. Now I must confess I didnt read the instructions properly when collecting the sample with the self filling vial and ended up having to take the top off the tube and filling it that way. I then read the instructions and collected my boys' samples properly! I think this is why my result was different that I didn't fill the bottle in the right way. Also when I shook the vial to mix up the powder inside there seemed less powder than in the other two. I did email the lab for their comments on my ASD son's results but they didn't reply. You could try ringing them for further informatin. Also I remember Mandi and Tina saying it is a measure of metals in the kidneys,not in the brain and bones. We are going to chelate anyway,despite my son's result being negative. HTH > > > > > > > > > > > > > > > > > > > >>Hi Mandi > > >> > > >>I have just been talking to DH about our negative results. As you > > >> > > >> > > >know we have only done one round of DMSA (Andy's protocol) and > have > > >decided to carry on with the DMSA for a while. We also agreed that > > >we should introduce ALA at around round 5. So I think we will fit > > >your criteria, in about a months time. > > > > > > > > >>Do you need to know anything else? Let me know. > > >> > > >>Kay. > > >> Porphyrins Testing > > >> > > >> > > >> I ran a mates test by Andy Cutler when it first came out. He > > >> > > >> > > >said it was valid - for identifying Mercury toxicity ONLY. That > the > > >other ones reported are ambiguous and the test gives no indication > > >of the LEVEL of toxicity. > > > > > > > > >> Still I thought quite useful. Then I chat to another mum who > > >> > > >> > > >reports that a chap who came back negative for Hg, who later took > > >ALA, when test was reperated he was off the page with > > >Hg..............................Hmmmmmmmmm. Yeah well I always > > >thought the ALA worked but??? what use is this test I ask myself > now > > >if a toxic person can be reported as negative. > > > > > > > > >> The hair test isn't foolproof but its looking a lot more useful > > >> > > >> > > >and cheaper from where I am sitting right now. > > > > > > > > >> I was hoping we would be able to use this non invasive easy > test > > >> > > >> > > >to prove our kids were toxic in an informal > > >study.....................hmmmmmmmmmm again. > > > > > > > > >> So then s results, I think he is doign TD DMPS, so I would > > >> > > >> > > >interpret that as most likely body stores are down. Go with the > ALA > > >on 3 hourly protocol and repeat that test and se what comes back. > > > > > > > > >> I plan to play with this test when I have the funding. Trouble > > >> > > >> > > >is we use ALA already and I'm not prepared to stop that for 3-4 > > >months to prove my point while negativelty affecting my sons > > >treatment. > > > > > > > > >> So anybody not doen ALA and does have low/negative results want > > >> > > >> > > >to test this out? > > > > > > > > >> This is my perosnal opinion BTW > > >> > > >> 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. > > > > > > > > >> > > >> > > >>--------------------------------------------------------------- --- > - > > >> > > >> > > >----------- > > > > > > > > >> ! GROUPS LINKS > > >> > > >> a.. Visit your group " Autism Treatment " on the web. > > >> > > >> b.. To unsubscribe from this group, send an email to: > > >> Autism Treatment-unsubscribe > > >> > > >> c.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2006 Report Share Posted April 5, 2006 Hi We also got some unexpected results in that all my autistic son's results were lower than the average range. We had the comment " reduced porphyrinuria with well balanced pattern " . (I know that I did not subject the specimen to light as I was very careful of that.) Well we decided to carry on with chelation (when we got the results we had completed only one round) we have now done two rounds, and although it is extremely early days we have already had 5 out of 7 nights each week with a dry nappy. We are amazed at this, as before we started to chelate, we had NEVER had a dry nappy and we had resorted to changing him every night before we went to bed, generally always finding his nappy wet and still often having an overflowing nappy and wet sheets in the morning!. (our son is six and a half). So the only answer we feel, is that the DMSA is definately doing something, so there must be some metals there, to do something with, regardless of what the test showed. We will retest again but probably not until we have introduced ALA with the DMSA, and see what results we get then. Kay. Porphyrins Testing > >> > >> > >> I ran a mates test by Andy Cutler when it first came out. He > >> > >> > >said it was valid - for identifying Mercury toxicity ONLY. That the > >other ones reported are ambiguous and the test gives no indication > >of the LEVEL of toxicity. > > > > > >> Still I thought quite useful. Then I chat to another mum who > >> > >> > >reports that a chap who came back negative for Hg, who later took > >ALA, when test was reperated he was off the page with > >Hg..............................Hmmmmmmmmm. Yeah well I always > >thought the ALA worked but??? what use is this test I ask myself now > >if a toxic person can be reported as negative. > > > > > >> The hair test isn't foolproof but its looking a lot more useful > >> > >> > >and cheaper from where I am sitting right now. > > > > > >> I was hoping we would be able to use this non invasive easy test > >> > >> > >to prove our kids were toxic in an informal > >study.....................hmmmmmmmmmm again. > > > > > >> So then s results, I think he is doign TD DMPS, so I would > >> > >> > >interpret that as most likely body stores are down. Go with the ALA > >on 3 hourly protocol and repeat that test and se what comes back. > > > > > >> I plan to play with this test when I have the funding. Trouble > >> > >> > >is we use ALA already and I'm not prepared to stop that for 3-4 > >months to prove my point while negativelty affecting my sons > >treatment. > > > > > >> So anybody not doen ALA and does have low/negative results want > >> > >> > >to test this out? > > > > > >> This is my perosnal opinion BTW > >> > >> 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. > > > > > >> > >> > >>------------------------------------------------------------------ - > >> > >> > >----------- > > > > > >> ! GROUPS LINKS > >> > >> a.. Visit your group " Autism Treatment " on the web. > >> > >> b.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 In a message dated 30/03/2006 22:33:24 GMT Daylight Time, kay.steve@... writes: I have just been talking to DH about our negative results. As you know we have only done one round of DMSA (Andy's protocol) and have decided to carry on with the DMSA for a while. We also agreed that we should introduce ALA at around round 5. So I think we will fit your criteria, in about a months time. Do you need to know anything else? Let me know. >>>That would be awesoem if you are doing it anyways. Very interested to see that result. Boyd Haley was on Autism One Radio talking about Porphyrins - you can listen int he archives I think about 5th April - I need to get my Broadband back so I can listen properly. I am sure he said that the study they did on Paris shoudl only 53% of ASD kids coming up positive. Teh generaly afreed % of ASd kids with a heavy metal toxicity issue is 75% hmmmmmmmmmmmm Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 In a message dated 30/03/2006 22:33:24 GMT Daylight Time, kay.steve@... writes: I have just been talking to DH about our negative results. As you know we have only done one round of DMSA (Andy's protocol) and have decided to carry on with the DMSA for a while. We also agreed that we should introduce ALA at around round 5. So I think we will fit your criteria, in about a months time. Do you need to know anything else? Let me know. >>>That would be awesoem if you are doing it anyways. Very interested to see that result. Boyd Haley was on Autism One Radio talking about Porphyrins - you can listen int he archives I think about 5th April - I need to get my Broadband back so I can listen properly. I am sure he said that the study they did on Paris shoudl only 53% of ASD kids coming up positive. Teh generaly afreed % of ASd kids with a heavy metal toxicity issue is 75% hmmmmmmmmmmmm Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Hi, We're going to do a 24 hr urine test. We are chelating this weekend. Should we do the test on Monday, or wait until next weekend (weekend off). Thanks, JT Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.