Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Hope, I don't know if I am going to be of much help, but when we did an OAT test on my son Nick in Nov. 2003 his FIGlu was 52.1 (ref. range <=9.0). And his Methylmalonate was 22.9 (ref. range <=27.0) At that time Dr. Usman said his FIGlu was the highest she had ever seen, and that mb12 and folinic would help. Are you seeing a DAN doctor? Hopefully your doctor or someone else here will hava a better understanding of what this means. I just wanted to relay what Dr. Usman had told me back then. Good luck finding out what this means, it's so hard trying to figuring some of these things out. > > We had my son on MB12 shots for about a year. I didn't see anything > and my son has not made any progress this year. He seemed ever so > slightly angry with the shots and that did not go away with a period > of time but it was so slight I thought it could be my imagination. We > were encouraged to continue the shots because my son has the MTHFR > genome. We tried him on the nasal spray about three times. Each time > his mood got really bad for the whole day so I stopped. I decided to > discontinue the shots too. I just got back a lab test. It says that > his Methylmalonate is on the low end of the reference range. (There > is no abnormal low for this marker.) I know that high methylmalonate > could indicate a need for MB12 but could low then not mean that he > does not need it? And afterall, he did not respond positively. > > His Formiminoglutamate (FIGLU) is high in the yellow-red zone. Does > this mean he needs more Folinic Acid? He already gets 800 mcg from > Kirkman's and he is about 40 pounds. Should I give more? He seems > ever-so-slightly better with it. > > Any other insights into this? > > Hope > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Thanks. Did she have you take more folinic than usual? My son is already on folinic. Did the folinic and B12 bring improvements? We do have a doctor's appointment in a few weeks but I was curious. Hope > > > > We had my son on MB12 shots for about a year. I didn't see > anything > > and my son has not made any progress this year. He seemed ever so > > slightly angry with the shots and that did not go away with a > period > > of time but it was so slight I thought it could be my > imagination. We > > were encouraged to continue the shots because my son has the MTHFR > > genome. We tried him on the nasal spray about three times. Each > time > > his mood got really bad for the whole day so I stopped. I decided > to > > discontinue the shots too. I just got back a lab test. It says > that > > his Methylmalonate is on the low end of the reference range. > (There > > is no abnormal low for this marker.) I know that high > methylmalonate > > could indicate a need for MB12 but could low then not mean that he > > does not need it? And afterall, he did not respond positively. > > > > His Formiminoglutamate (FIGLU) is high in the yellow-red zone. > Does > > this mean he needs more Folinic Acid? He already gets 800 mcg from > > Kirkman's and he is about 40 pounds. Should I give more? He seems > > ever-so-slightly better with it. > > > > Any other insights into this? > > > > Hope > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 At the time I believe she recommended 400mg folinic. And we started the mb12 shots every 3rd day as well. We haven't done another OAT test since, we really should, but it's just so expensive, and ins. won't pay for any of it. > > > > > > We had my son on MB12 shots for about a year. I didn't see > > anything > > > and my son has not made any progress this year. He seemed ever so > > > slightly angry with the shots and that did not go away with a > > period > > > of time but it was so slight I thought it could be my > > imagination. We > > > were encouraged to continue the shots because my son has the MTHFR > > > genome. We tried him on the nasal spray about three times. Each > > time > > > his mood got really bad for the whole day so I stopped. I decided > > to > > > discontinue the shots too. I just got back a lab test. It says > > that > > > his Methylmalonate is on the low end of the reference range. > > (There > > > is no abnormal low for this marker.) I know that high > > methylmalonate > > > could indicate a need for MB12 but could low then not mean that he > > > does not need it? And afterall, he did not respond positively. > > > > > > His Formiminoglutamate (FIGLU) is high in the yellow-red zone. > > Does > > > this mean he needs more Folinic Acid? He already gets 800 mcg from > > > Kirkman's and he is about 40 pounds. Should I give more? He seems > > > ever-so-slightly better with it. > > > > > > Any other insights into this? > > > > > > Hope > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 A very important question based on your test results. Was there folinic in the spray? - Stan > > We had my son on MB12 shots for about a year. I didn't see anything > and my son has not made any progress this year. He seemed ever so > slightly angry with the shots and that did not go away with a period > of time but it was so slight I thought it could be my imagination. We > were encouraged to continue the shots because my son has the MTHFR > genome. We tried him on the nasal spray about three times. Each time > his mood got really bad for the whole day so I stopped. I decided to > discontinue the shots too. I just got back a lab test. It says that > his Methylmalonate is on the low end of the reference range. (There > is no abnormal low for this marker.) I know that high methylmalonate > could indicate a need for MB12 but could low then not mean that he > does not need it? And afterall, he did not respond positively. > > His Formiminoglutamate (FIGLU) is high in the yellow-red zone. Does > this mean he needs more Folinic Acid? He already gets 800 mcg from > Kirkman's and he is about 40 pounds. Should I give more? He seems > ever-so-slightly better with it. > > Any other insights into this? > > Hope > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Hi there Im a male with mcs/cfs. I have methylmalonic acid in low range(low end of green) 9,9 <= 19 I have Figlu on far red 17,9 <= 9 I did take a few B12 shots a few years ago. I have tried folinic acid and tetrahydrofolate. I seem to get OCD symptoms on the folic and tetrahydrofolate. Dont like them at all, still I seem to be indicated for it according to the tests. I must add that in the beginning they didnt seem to create problems. For me the SAM, TMG, B12, other bvitamins have given confusing results.Initially good then wearing off or giving oposite results. Any thoughts? Per > A very important question based on your test results. Was there folinic in the spray? > > - Stan > > > > > > We had my son on MB12 shots for about a year. I didn't see anything > > and my son has not made any progress this year. He seemed ever so > > slightly angry with the shots and that did not go away with a period > > of time but it was so slight I thought it could be my imagination. We > > were encouraged to continue the shots because my son has the MTHFR > > genome. We tried him on the nasal spray about three times. Each time > > his mood got really bad for the whole day so I stopped. I decided to > > discontinue the shots too. I just got back a lab test. It says that > > his Methylmalonate is on the low end of the reference range. (There > > is no abnormal low for this marker.) I know that high methylmalonate > > could indicate a need for MB12 but could low then not mean that he > > does not need it? And afterall, he did not respond positively. > > > > His Formiminoglutamate (FIGLU) is high in the yellow-red zone. Does > > this mean he needs more Folinic Acid? He already gets 800 mcg from > > Kirkman's and he is about 40 pounds. Should I give more? He seems > > ever-so-slightly better with it. > > > > Any other insights into this? > > > > Hope > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Per, Would you please post this on CFSFMExperimental also? It would be interesting to see what Rich had to say about it, too. Thanks,Ellen Re: High FIGLU, low Methylmalonate Hi thereIm a male with mcs/cfs.I have methylmalonic acid in low range(low end of green) 9,9 <= 19I have Figlu on far red 17,9 <= 9I did take a few B12 shots a few years ago.I have tried folinic acid and tetrahydrofolate.I seem to get OCD symptoms on the folic and tetrahydrofolate.Dont like them at all, still I seem to be indicated for it accordingto the tests. I must add that in the beginning they didnt seem to create problems.For me the SAM, TMG, B12, other bvitamins have given confusingresults.Initially good then wearing off or giving oposite results.Any thoughts?Per Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Was lab result in blood levels or urine? Low in blood is not always relaible. We are a family with MTHFR 2 mutations and out of the 5 of us blood was with in Quest " norma " l at high end. But Urine was very high MB12 has really helped whole family. The MTHFR we are finding in surprising numbers at our center may be because it is now part of our standard work up instead of " next step " since Quest is now doing. Debbie > > > > We had my son on MB12 shots for about a year. I didn't see anything > > and my son has not made any progress this year. He seemed ever so > > slightly angry with the shots and that did not go away with a period > > of time but it was so slight I thought it could be my imagination. We > > were encouraged to continue the shots because my son has the MTHFR > > genome. We tried him on the nasal spray about three times. Each time > > his mood got really bad for the whole day so I stopped. I decided to > > discontinue the shots too. I just got back a lab test. It says that > > his Methylmalonate is on the low end of the reference range. (There > > is no abnormal low for this marker.) I know that high methylmalonate > > could indicate a need for MB12 but could low then not mean that he > > does not need it? And afterall, he did not respond positively. > > > > His Formiminoglutamate (FIGLU) is high in the yellow-red zone. Does > > this mean he needs more Folinic Acid? He already gets 800 mcg from > > Kirkman's and he is about 40 pounds. Should I give more? He seems > > ever-so-slightly better with it. > > > > Any other insights into this? > > > > Hope > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Yes, there was folinic but he responds well to folinic. Hope > > > > We had my son on MB12 shots for about a year. I didn't see anything > > and my son has not made any progress this year. He seemed ever so > > slightly angry with the shots and that did not go away with a period > > of time but it was so slight I thought it could be my imagination. We > > were encouraged to continue the shots because my son has the MTHFR > > genome. We tried him on the nasal spray about three times. Each time > > his mood got really bad for the whole day so I stopped. I decided to > > discontinue the shots too. I just got back a lab test. It says that > > his Methylmalonate is on the low end of the reference range. (There > > is no abnormal low for this marker.) I know that high methylmalonate > > could indicate a need for MB12 but could low then not mean that he > > does not need it? And afterall, he did not respond positively. > > > > His Formiminoglutamate (FIGLU) is high in the yellow-red zone. Does > > this mean he needs more Folinic Acid? He already gets 800 mcg from > > Kirkman's and he is about 40 pounds. Should I give more? He seems > > ever-so-slightly better with it. > > > > Any other insights into this? > > > > Hope > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 My son has a really mixed response to TMG - a combination of miraculous and scary. I wish we could keep the miraculous and trash the scary. Hope > > > > > > We had my son on MB12 shots for about a year. I didn't see anything > > > and my son has not made any progress this year. He seemed ever so > > > slightly angry with the shots and that did not go away with a period > > > of time but it was so slight I thought it could be my imagination. We > > > were encouraged to continue the shots because my son has the MTHFR > > > genome. We tried him on the nasal spray about three times. Each time > > > his mood got really bad for the whole day so I stopped. I decided to > > > discontinue the shots too. I just got back a lab test. It says that > > > his Methylmalonate is on the low end of the reference range. (There > > > is no abnormal low for this marker.) I know that high methylmalonate > > > could indicate a need for MB12 but could low then not mean that he > > > does not need it? And afterall, he did not respond positively. > > > > > > His Formiminoglutamate (FIGLU) is high in the yellow-red zone. Does > > > this mean he needs more Folinic Acid? He already gets 800 mcg from > > > Kirkman's and he is about 40 pounds. Should I give more? He seems > > > ever-so-slightly better with it. > > > > > > Any other insights into this? > > > > > > Hope > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 urine > > > > > > We had my son on MB12 shots for about a year. I didn't see > anything > > > and my son has not made any progress this year. He seemed ever so > > > slightly angry with the shots and that did not go away with a > period > > > of time but it was so slight I thought it could be my > imagination. We > > > were encouraged to continue the shots because my son has the MTHFR > > > genome. We tried him on the nasal spray about three times. Each > time > > > his mood got really bad for the whole day so I stopped. I > decided to > > > discontinue the shots too. I just got back a lab test. It says > that > > > his Methylmalonate is on the low end of the reference range. > (There > > > is no abnormal low for this marker.) I know that high > methylmalonate > > > could indicate a need for MB12 but could low then not mean that he > > > does not need it? And afterall, he did not respond positively. > > > > > > His Formiminoglutamate (FIGLU) is high in the yellow-red zone. > Does > > > this mean he needs more Folinic Acid? He already gets 800 mcg > from > > > Kirkman's and he is about 40 pounds. Should I give more? He > seems > > > ever-so-slightly better with it. > > > > > > Any other insights into this? > > > > > > Hope > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Could this mean that the folinic is pooling in the body and there is a blockage and he isn't processing the folinic? Maybe the Yasko genetic tests might give you answers? Gayatri > > > > > > We had my son on MB12 shots for about a year. I didn't see anything > > > and my son has not made any progress this year. He seemed ever so > > > slightly angry with the shots and that did not go away with a period > > > of time but it was so slight I thought it could be my imagination. We > > > were encouraged to continue the shots because my son has the MTHFR > > > genome. We tried him on the nasal spray about three times. Each time > > > his mood got really bad for the whole day so I stopped. I decided to > > > discontinue the shots too. I just got back a lab test. It says that > > > his Methylmalonate is on the low end of the reference range. (There > > > is no abnormal low for this marker.) I know that high methylmalonate > > > could indicate a need for MB12 but could low then not mean that he > > > does not need it? And afterall, he did not respond positively. > > > > > > His Formiminoglutamate (FIGLU) is high in the yellow-red zone. Does > > > this mean he needs more Folinic Acid? He already gets 800 mcg from > > > Kirkman's and he is about 40 pounds. Should I give more? He seems > > > ever-so-slightly better with it. > > > > > > Any other insights into this? > > > > > > Hope > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 The first thing I would try is Methylcobalamin. You said you tried B12 shots which is cynocobalamin and probably intramuscular. Try MB12 sub-q or MB12 Intranasal from Coastal Compounding (or other MB12 friendly pharmacy) and see what happens. I would start there and report back. - Stan > > > > > > We had my son on MB12 shots for about a year. I didn't see anything > > > and my son has not made any progress this year. He seemed ever so > > > slightly angry with the shots and that did not go away with a period > > > of time but it was so slight I thought it could be my imagination. We > > > were encouraged to continue the shots because my son has the MTHFR > > > genome. We tried him on the nasal spray about three times. Each time > > > his mood got really bad for the whole day so I stopped. I decided to > > > discontinue the shots too. I just got back a lab test. It says that > > > his Methylmalonate is on the low end of the reference range. (There > > > is no abnormal low for this marker.) I know that high methylmalonate > > > could indicate a need for MB12 but could low then not mean that he > > > does not need it? And afterall, he did not respond positively. > > > > > > His Formiminoglutamate (FIGLU) is high in the yellow-red zone. Does > > > this mean he needs more Folinic Acid? He already gets 800 mcg from > > > Kirkman's and he is about 40 pounds. Should I give more? He seems > > > ever-so-slightly better with it. > > > > > > Any other insights into this? > > > > > > Hope > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Nasal/sub-q folinic and oral folinic are two different animals. I would try it without the folinic in the spray just to rule that out. - Stan > > > > > > We had my son on MB12 shots for about a year. I didn't see anything > > > and my son has not made any progress this year. He seemed ever so > > > slightly angry with the shots and that did not go away with a period > > > of time but it was so slight I thought it could be my imagination. We > > > were encouraged to continue the shots because my son has the MTHFR > > > genome. We tried him on the nasal spray about three times. Each time > > > his mood got really bad for the whole day so I stopped. I decided to > > > discontinue the shots too. I just got back a lab test. It says that > > > his Methylmalonate is on the low end of the reference range. (There > > > is no abnormal low for this marker.) I know that high methylmalonate > > > could indicate a need for MB12 but could low then not mean that he > > > does not need it? And afterall, he did not respond positively. > > > > > > His Formiminoglutamate (FIGLU) is high in the yellow-red zone. Does > > > this mean he needs more Folinic Acid? He already gets 800 mcg from > > > Kirkman's and he is about 40 pounds. Should I give more? He seems > > > ever-so-slightly better with it. > > > > > > Any other insights into this? > > > > > > Hope > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Would appreciate very much the information as to where to purchase TMG and what is the full name spelled out. I had a folder for TMG and DMG and cannot find it. Thanks, Sam. Re: High FIGLU, low Methylmalonate > My son has a really mixed response to TMG - a combination of > miraculous and scary. I wish we could keep the miraculous and trash > the scary. > > Hope > > >> >> Hi there >> Im a male with mcs/cfs. >> >> I have methylmalonic acid in low range(low end of green) 9,9 <= 19 >> I have Figlu on far red 17,9 <= 9 >> >> I did take a few B12 shots a few years ago. >> I have tried folinic acid and tetrahydrofolate. >> I seem to get OCD symptoms on the folic and tetrahydrofolate. >> Dont like them at all, still I seem to be indicated for it according >> to the tests. >> >> I must add that in the beginning they didnt seem to create problems. >> For me the SAM, TMG, B12, other bvitamins have given confusing >> results.Initially good then wearing off or giving oposite results. >> >> Any thoughts? >> >> Per >> >> >> > A very important question based on your test results. Was there >> folinic in the spray? >> > >> > - Stan >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 www.kirkmanlabs.com --- Sam wrote: > Would appreciate very much the information as to > where to purchase TMG and > what is the full name spelled out. I had a folder > for TMG and DMG and > cannot find it. Thanks, Sam. > > > Re: High FIGLU, low > Methylmalonate > > > > My son has a really mixed response to TMG - a > combination of > > miraculous and scary. I wish we could keep the > miraculous and trash > > the scary. > > > > Hope > > > > > >> > >> Hi there > >> Im a male with mcs/cfs. > >> > >> I have methylmalonic acid in low range(low end of > green) 9,9 <= 19 > >> I have Figlu on far red 17,9 <= 9 > >> > >> I did take a few B12 shots a few years ago. > >> I have tried folinic acid and tetrahydrofolate. > >> I seem to get OCD symptoms on the folic and > tetrahydrofolate. > >> Dont like them at all, still I seem to be > indicated for it according > >> to the tests. > >> > >> I must add that in the beginning they didnt seem > to create problems. > >> For me the SAM, TMG, B12, other bvitamins have > given confusing > >> results.Initially good then wearing off or giving > oposite results. > >> > >> Any thoughts? > >> > >> Per > >> > >> > >> > A very important question based on your test > results. Was there > >> folinic in the spray? > >> > > >> > - Stan > >> > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Trimethylglycine and Dimethylglycine. http://www.kirkmanlabs.com/products/dmg_tmg/dmg_tmg_index.html Anne > > >> > > >> Hi there > > >> Im a male with mcs/cfs. > > >> > > >> I have methylmalonic acid in low range(low end of > > green) 9,9 <= 19 > > >> I have Figlu on far red 17,9 <= 9 > > >> > > >> I did take a few B12 shots a few years ago. > > >> I have tried folinic acid and tetrahydrofolate. > > >> I seem to get OCD symptoms on the folic and > > tetrahydrofolate. > > >> Dont like them at all, still I seem to be > > indicated for it according > > >> to the tests. > > >> > > >> I must add that in the beginning they didnt seem > > to create problems. > > >> For me the SAM, TMG, B12, other bvitamins have > > given confusing > > >> results.Initially good then wearing off or giving > > oposite results. > > >> > > >> Any thoughts? > > >> > > >> Per > > >> > > >> > > >> > A very important question based on your test > > results. Was there > > >> folinic in the spray? > > >> > > > >> > - Stan > > >> > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Anne, many thanks for your quick answer!!!! Have a good night, Sam. Re: High FIGLU, low >> > Methylmalonate >> > >> > >> > > My son has a really mixed response to TMG - a >> > combination of >> > > miraculous and scary. I wish we could keep the >> > miraculous and trash >> > > the scary. >> > > >> > > Hope Quote Link to comment Share on other sites More sharing options...
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