Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Jackie - I know DDI has an amino acids panel, which would be a way of testing cysteine levels. Has Andy worked out the validity of this test? (And I looked it up, but don't see the difference between " plasma " and " serum " . I think they are the same (?). I believe Andy's point was that the equipment used at Great Smokies was changed when they were taken over by Genova, and that the test is simply no longer valid. Perhaps DDI does it correctly? In any case, please correct me if I'm wrong.) Dave. ---------------- But now, after saying all of that, did you just recently do the Liver Detox Panel by Genova (Great Smokies)? My understanding is that they now do *serum* cysteine and sulfate, instead of *plasma* which they used to do and Andy preferred. I believe Andy says that the new test isn't accurate/relevant? I don't have a link handy to him posting about this, but maybe or somebody else does. But I still don't think there is any harm in supplementing molybdenum and sulfate to see if they help. Anyone else remember details about this?------- --Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 Jackie - I know DDI has an amino acids panel, which would be a way of testing cysteine levels. Has Andy worked out the validity of this test? (And I looked it up, but don't see the difference between " plasma " and " serum " . I think they are the same (?). I believe Andy's point was that the equipment used at Great Smokies was changed when they were taken over by Genova, and that the test is simply no longer valid. Perhaps DDI does it correctly? In any case, please correct me if I'm wrong.) Dave. ---------------- But now, after saying all of that, did you just recently do the Liver Detox Panel by Genova (Great Smokies)? My understanding is that they now do *serum* cysteine and sulfate, instead of *plasma* which they used to do and Andy preferred. I believe Andy says that the new test isn't accurate/relevant? I don't have a link handy to him posting about this, but maybe or somebody else does. But I still don't think there is any harm in supplementing molybdenum and sulfate to see if they help. Anyone else remember details about this?------- --Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 In frequent-dose-chelation Dave - AM&FDC Posts wrote: Jackie - I know DDI has an amino acids panel, which would be a way of testing cysteine levels. Has Andy worked out the validity of this test? ----------I don't know Dave. This stuff is usually talked about more on the A-M board, because those parents do alot more testing than we do, in general. Hopefully one of those that are in both groups will be able to answer this for us. I haven't had time to read over there for a long time. Also, somebody could try searching onibasu and see if they find anything. But my understanding from is that Great Smokies (Genova) was the only place that used to do the correct test, and now it's done differently, and Andy says it's not useful anymore. I have not heard of any alternatives that Andy says is worthwhile. Is the DDI test urine or plasma or what? If we don't get any feedback from members, we could ask Andy, but not sure how busy he is right now.---------Jackie (And I looked it up, but don't see the difference between " plasma " and " serum " . I think they are the same (?). ----------You could be right, I really don't know. This chemistry stuff is not my thing! But I thought that was how I remembered hearing it, that it changed from plasma to serum, but I could wrong, scary to trust this mercury brain!---------Jackie I believe Andy's point was that the equipment used at Great Smokies was changed when they were taken over by Genova, and that the test is simply no longer valid. ---------There is probably a post by him explaining this, but I haven't had time to try to find it. If somebody has time to search onibasu?----------Jackie Perhaps DDI does it correctly? In any case, please correct me if I'm wrong.) ------------I have no idea if DDI does it correctly, but if they did, I would think that it would be public knowledge on these boards, and that someone from A-M would tell us. And honestly, I don't even understand what makes one type of this test valid and useful and the other not. Andy would need to explain it. Possibly someone like would understand why also.------------Jackie Dave. ---------------- But now, after saying all of that, did you just recently do the Liver Detox Panel by Genova (Great Smokies)? My understanding is that they now do *serum* cysteine and sulfate, instead of *plasma* which they used to do and Andy preferred. I believe Andy says that the new test isn't accurate/relevant? I don't have a link handy to him posting about this, but maybe or somebody else does. But I still don't think there is any harm in supplementing molybdenum and sulfate to see if they help. Anyone else remember details about this?------- --Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 In frequent-dose-chelation Dave - AM&FDC Posts wrote: Jackie - I know DDI has an amino acids panel, which would be a way of testing cysteine levels. Has Andy worked out the validity of this test? ----------I don't know Dave. This stuff is usually talked about more on the A-M board, because those parents do alot more testing than we do, in general. Hopefully one of those that are in both groups will be able to answer this for us. I haven't had time to read over there for a long time. Also, somebody could try searching onibasu and see if they find anything. But my understanding from is that Great Smokies (Genova) was the only place that used to do the correct test, and now it's done differently, and Andy says it's not useful anymore. I have not heard of any alternatives that Andy says is worthwhile. Is the DDI test urine or plasma or what? If we don't get any feedback from members, we could ask Andy, but not sure how busy he is right now.---------Jackie (And I looked it up, but don't see the difference between " plasma " and " serum " . I think they are the same (?). ----------You could be right, I really don't know. This chemistry stuff is not my thing! But I thought that was how I remembered hearing it, that it changed from plasma to serum, but I could wrong, scary to trust this mercury brain!---------Jackie I believe Andy's point was that the equipment used at Great Smokies was changed when they were taken over by Genova, and that the test is simply no longer valid. ---------There is probably a post by him explaining this, but I haven't had time to try to find it. If somebody has time to search onibasu?----------Jackie Perhaps DDI does it correctly? In any case, please correct me if I'm wrong.) ------------I have no idea if DDI does it correctly, but if they did, I would think that it would be public knowledge on these boards, and that someone from A-M would tell us. And honestly, I don't even understand what makes one type of this test valid and useful and the other not. Andy would need to explain it. Possibly someone like would understand why also.------------Jackie Dave. ---------------- But now, after saying all of that, did you just recently do the Liver Detox Panel by Genova (Great Smokies)? My understanding is that they now do *serum* cysteine and sulfate, instead of *plasma* which they used to do and Andy preferred. I believe Andy says that the new test isn't accurate/relevant? I don't have a link handy to him posting about this, but maybe or somebody else does. But I still don't think there is any harm in supplementing molybdenum and sulfate to see if they help. Anyone else remember details about this?------- --Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 In frequent-dose-chelation Dave - AM&FDC Posts wrote: Jackie - I know DDI has an amino acids panel, which would be a way of testing cysteine levels. Has Andy worked out the validity of this test? ----------I don't know Dave. This stuff is usually talked about more on the A-M board, because those parents do alot more testing than we do, in general. Hopefully one of those that are in both groups will be able to answer this for us. I haven't had time to read over there for a long time. Also, somebody could try searching onibasu and see if they find anything. But my understanding from is that Great Smokies (Genova) was the only place that used to do the correct test, and now it's done differently, and Andy says it's not useful anymore. I have not heard of any alternatives that Andy says is worthwhile. Is the DDI test urine or plasma or what? If we don't get any feedback from members, we could ask Andy, but not sure how busy he is right now.---------Jackie (And I looked it up, but don't see the difference between " plasma " and " serum " . I think they are the same (?). ----------You could be right, I really don't know. This chemistry stuff is not my thing! But I thought that was how I remembered hearing it, that it changed from plasma to serum, but I could wrong, scary to trust this mercury brain!---------Jackie I believe Andy's point was that the equipment used at Great Smokies was changed when they were taken over by Genova, and that the test is simply no longer valid. ---------There is probably a post by him explaining this, but I haven't had time to try to find it. If somebody has time to search onibasu?----------Jackie Perhaps DDI does it correctly? In any case, please correct me if I'm wrong.) ------------I have no idea if DDI does it correctly, but if they did, I would think that it would be public knowledge on these boards, and that someone from A-M would tell us. And honestly, I don't even understand what makes one type of this test valid and useful and the other not. Andy would need to explain it. Possibly someone like would understand why also.------------Jackie Dave. ---------------- But now, after saying all of that, did you just recently do the Liver Detox Panel by Genova (Great Smokies)? My understanding is that they now do *serum* cysteine and sulfate, instead of *plasma* which they used to do and Andy preferred. I believe Andy says that the new test isn't accurate/relevant? I don't have a link handy to him posting about this, but maybe or somebody else does. But I still don't think there is any harm in supplementing molybdenum and sulfate to see if they help. Anyone else remember details about this?------- --Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Jackie - >but now, after saying all of that, did you just recently do the Liver >Detox Panel by Genova (Great Smokies)? No, I didn't; but the thing that helped me the most years ago was figuring out that my sulfur was high. So, if there is a test, then it would be very useful for others. I was talking to the people at DDI earlier this week, and they told me of a serum/plasma (not sure which, but it's a blood test) amino acid panel. So, I suddenly thought there might be an alternative - thought it could be expensive since it's not just one amino acid, it's all of them. But you're right, it would probably be public knowledge. I'll go have a look at Onibasu in a bit... Dave. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 In frequent-dose-chelation Dave - AM&FDC Posts wrote: Jackie - >but now, after saying all of that, did you just recently do the Liver >Detox Panel by Genova (Great Smokies)? No, I didn't; but the thing that helped me the most years ago was figuring out that my sulfur was high. So, if there is a test, then it would be very useful for others. I was talking to the people at DDI earlier this week, and they told me of a serum/plasma (not sure which, but it's a blood test) amino acid panel. So, I suddenly thought there might be an alternative - though it could be expensive since it's not just one amino acid, it's all of them. But you're right, it would probably be public knowledge. I'll go have a look at Onibasu in a bit... Dave. ----------------------- Dave, Let me know if you find anything, and if anyone is an active member on A-M, they could ask over there. And searching posts from that group would probably be good also. I was hoping one of the parents who belong to both would have had an answer for us, but must not have seen this message. And I agree, it seems to be an important test, and I would think that there would be a number of people who want to order it, so I am surprised that *some lab* doesn't offer it any more. I really don't understand what is so special about this test, that only one lab was doing it, and now it's not done the same way anymore. Let's see what we come up with, but if we don't get a good answer, then we can ask Andy. I just don't like bothering him with too many things, and like to make sure that the answer isn't already out there. Also, wouldn't you think that all these parents of autistic kids and Andy and us poisoned adults would have some influence over these labs to offer what they need/want? It really baffles me that no one offers this useful test done the right way. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 In frequent-dose-chelation Dave - AM&FDC Posts wrote: Jackie - >but now, after saying all of that, did you just recently do the Liver >Detox Panel by Genova (Great Smokies)? No, I didn't; but the thing that helped me the most years ago was figuring out that my sulfur was high. So, if there is a test, then it would be very useful for others. I was talking to the people at DDI earlier this week, and they told me of a serum/plasma (not sure which, but it's a blood test) amino acid panel. So, I suddenly thought there might be an alternative - though it could be expensive since it's not just one amino acid, it's all of them. But you're right, it would probably be public knowledge. I'll go have a look at Onibasu in a bit... Dave. ----------------------- Dave, Let me know if you find anything, and if anyone is an active member on A-M, they could ask over there. And searching posts from that group would probably be good also. I was hoping one of the parents who belong to both would have had an answer for us, but must not have seen this message. And I agree, it seems to be an important test, and I would think that there would be a number of people who want to order it, so I am surprised that *some lab* doesn't offer it any more. I really don't understand what is so special about this test, that only one lab was doing it, and now it's not done the same way anymore. Let's see what we come up with, but if we don't get a good answer, then we can ask Andy. I just don't like bothering him with too many things, and like to make sure that the answer isn't already out there. Also, wouldn't you think that all these parents of autistic kids and Andy and us poisoned adults would have some influence over these labs to offer what they need/want? It really baffles me that no one offers this useful test done the right way. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 My understanding is that Great Smokies used to test for plasma cysteine and that test was useful, by Andy's standards. Not too long ago they changed the way that they do the test and now it is no longer useful (to determine if someone needs to increase sulfur food intake or reduce it). The only way to know, now, is with trials of food exclusion and challenge. Andy has stated this on autism mercury. Searching for the post would take some time. I haven't heard Andy say anything about a cysteine test from DDI. I would think that if it was useful for this purpose he would have said something. As far as I know the plasma sulfate test Genova (formerly Great Smokies) does is still useful for determining if sulfate intake needs to be increased. J > > > Jackie - > > >but now, after saying all of that, did you just recently do the Liver > >Detox Panel by Genova (Great Smokies)? > > No, I didn't; but the thing that helped me the most years ago was > figuring out that my sulfur was high. So, if there is a test, then it > would be very useful for others. I was talking to the people at DDI > earlier this week, and they told me of a serum/plasma (not sure which, > but it's a blood test) amino acid panel. So, I suddenly thought there > might be an alternative - though it could be expensive since it's not > just one amino acid, it's all of them. > > But you're right, it would probably be public knowledge. > > I'll go have a look at Onibasu in a bit... > > Dave. > ----------------------- > > Dave, > > Let me know if you find anything, and if anyone is an active member on A-M, they could ask over there. And searching posts from that group would probably be good also. I was hoping one of the parents who belong to both would have had an answer for us, but must not have seen this message. And I agree, it seems to be an important test, and I would think that there would be a number of people who want to order it, so I am surprised that *some lab* doesn't offer it any more. I really don't understand what is so special about this test, that only one lab was doing it, and now it's not done the same way anymore. Let's see what we come up with, but if we don't get a good answer, then we can ask Andy. I just don't like bothering him with too many things, and like to make sure that the answer isn't already out there. > > Also, wouldn't you think that all these parents of autistic kids and Andy and us poisoned adults would have some influence over these labs to offer what they need/want? It really baffles me that no one offers this useful test done the right way. > > Jackie > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 My understanding is that Great Smokies used to test for plasma cysteine and that test was useful, by Andy's standards. Not too long ago they changed the way that they do the test and now it is no longer useful (to determine if someone needs to increase sulfur food intake or reduce it). The only way to know, now, is with trials of food exclusion and challenge. Andy has stated this on autism mercury. Searching for the post would take some time. I haven't heard Andy say anything about a cysteine test from DDI. I would think that if it was useful for this purpose he would have said something. As far as I know the plasma sulfate test Genova (formerly Great Smokies) does is still useful for determining if sulfate intake needs to be increased. J > > > Jackie - > > >but now, after saying all of that, did you just recently do the Liver > >Detox Panel by Genova (Great Smokies)? > > No, I didn't; but the thing that helped me the most years ago was > figuring out that my sulfur was high. So, if there is a test, then it > would be very useful for others. I was talking to the people at DDI > earlier this week, and they told me of a serum/plasma (not sure which, > but it's a blood test) amino acid panel. So, I suddenly thought there > might be an alternative - though it could be expensive since it's not > just one amino acid, it's all of them. > > But you're right, it would probably be public knowledge. > > I'll go have a look at Onibasu in a bit... > > Dave. > ----------------------- > > Dave, > > Let me know if you find anything, and if anyone is an active member on A-M, they could ask over there. And searching posts from that group would probably be good also. I was hoping one of the parents who belong to both would have had an answer for us, but must not have seen this message. And I agree, it seems to be an important test, and I would think that there would be a number of people who want to order it, so I am surprised that *some lab* doesn't offer it any more. I really don't understand what is so special about this test, that only one lab was doing it, and now it's not done the same way anymore. Let's see what we come up with, but if we don't get a good answer, then we can ask Andy. I just don't like bothering him with too many things, and like to make sure that the answer isn't already out there. > > Also, wouldn't you think that all these parents of autistic kids and Andy and us poisoned adults would have some influence over these labs to offer what they need/want? It really baffles me that no one offers this useful test done the right way. > > Jackie > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 > > Jackie - > > >but now, after saying all of that, did you just recently do the Liver > >Detox Panel by Genova (Great Smokies)? > > No, I didn't; but the thing that helped me the most years ago was > figuring out that my sulfur was high. So, if there is a test, then it > would be very useful for others. I was talking to the people at DDI > earlier this week, and they told me of a serum/plasma (not sure which, > but it's a blood test) amino acid panel. So, I suddenly thought there The plasma amino acids test checks cystine, not cysteine. At least that was true for the DDI version when I had it done, I haven't checked recently. Cystine is different and doesn't help with knowing cysteine status. -- > might be an alternative - thought it could be expensive since it's not > just one amino acid, it's all of them. > > But you're right, it would probably be public knowledge. > > I'll go have a look at Onibasu in a bit... > > Dave. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 > > Jackie - > > >but now, after saying all of that, did you just recently do the Liver > >Detox Panel by Genova (Great Smokies)? > > No, I didn't; but the thing that helped me the most years ago was > figuring out that my sulfur was high. So, if there is a test, then it > would be very useful for others. I was talking to the people at DDI > earlier this week, and they told me of a serum/plasma (not sure which, > but it's a blood test) amino acid panel. So, I suddenly thought there The plasma amino acids test checks cystine, not cysteine. At least that was true for the DDI version when I had it done, I haven't checked recently. Cystine is different and doesn't help with knowing cysteine status. -- > might be an alternative - thought it could be expensive since it's not > just one amino acid, it's all of them. > > But you're right, it would probably be public knowledge. > > I'll go have a look at Onibasu in a bit... > > Dave. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 . I see that you are right. I found a sample test here: http://www.doctorsdata.com/repository.asp?id=1416 This is a bit odd, given that their urine amino acids test, includes cysteine under " Essential Amino Acids " , and this is the only one they are leaving out of the plasma test. I'm going to go and ask them why. Dave. ------------ The plasma amino acids test checks cystine, not cysteine. At least that was true for the DDI version when I had it done, I haven't checked recently. Cystine is different and doesn't help with knowing cysteine status. -- Quote Link to comment Share on other sites More sharing options...
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