Guest guest Posted October 1, 1999 Report Share Posted October 1, 1999 I would think that if you give mega doses of certain B's you will become deficient in the others. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 One reason might be that when the docs recommend something like riboflavin it is so much higher than any complex would be - like we get 10,000 mcg of Biotin which is 2500% of the RDA and most B complex vitamins have around 20-30% of the RDA for Biotin. Even if the Complex pill was 100%, we would need 250 of them to get the same huge dose of Biotin and that would be an overdose of ones that are fat-based (like B6). Kathy ª¿ª Why only " some " B vitamins? > > > > > I am just wondering why doctors only recommend some B vitamins for mito (ribovlavin, B12, etc), and not an > entire B-complex? It has long been known that B vitamins need to be taken together in order to work > effectively. But my son's doctor recommended only riboflavin. Seems silly to me. I mean, why not give > him the entire complex, giving the riboflavin a better chance to do its job? > > Just curious. > > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 , I know what you mean. One time a Dr. told me I had a B2 dependency disorder and told me to take a huge amt. of it which I did. In a few days my bottom lip swelled into a huge blister and I thought it was going to burst and then remembered what you said (you need all the Bs together as they are synergistic) so got a bottle of multi-Bs and took the whole dang bottle that day. Lo & behold I had that thing happen where the light comes on in my brain and I had " feelings " as I describe it (I think it is when my nervous system starts working right and the nerves connect right to each other?). Of course I can't afford or swallow a whole bottle of B vit. every day. Also, sometimes something like this will work one time and not the next. But on the other hand, I know we had a test done in TX at a Univer. where they tested various nutrients against white blood cells and they told us we could only take a minimal amt of biotin, B2, and B3 or we got worse and our cells sucked up 4 times the normal amt of calcium (for those who weren't on this list when I have shared this). We already knew this as we'd tried mass amts of each of these and knew the ill effects. Even tho we have symptoms of low levels of these nutrients, we couldn't take even the normal amt without having getting worse so therefore to me the TX test proved a block in this pathway. Boys are hyper-gotta run...... S. Why only " some " B vitamins? > > > > >I am just wondering why doctors only recommend some B vitamins for mito (ribovlavin, B12, etc), and not an >entire B-complex? It has long been known that B vitamins need to be taken together in order to work >effectively. But my son's doctor recommended only riboflavin. Seems silly to me. I mean, why not give >him the entire complex, giving the riboflavin a better chance to do its job? > >Just curious. > > > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/2/99 5:00:53 PM Pacific Daylight Time, sfitzger@... writes: << If that is the case, how does one determine which B vitamins to take? Is there a blood test? wrote: >> I contacted a nutritional biochemist and had Karlys blood sent for an analyst and also her fatty acid screen. Then she told me which supplements her body was deficient in. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Heidi and , Precisely. Also the mode of administration makes a difference like I get no help from from B12 orally but the shots help with spontaneous bruising, depression, and canker sores/tongue ulcers. B1 by mouth is OK but the shots are like 10 times as effective and in fact a large enough dose one day " broke things open for me mentally " as have other nutrient IVs, but again no one can get nutrient IVs everyday or 2 either. People who first get into nutrient therapy think if they find the symptoms of a nutrient deficiency they should just take more of that one, not understanding the metabolic blocks. S. > Re: Why only " some " B vitamins? > > >> >> >>Hi , >> Not positive here but I think it is because different vitamins work >differently depending on the defect. >>For instance, my daughter was originally put on riboflavin (B-2) and it >made her worse. However, thiamin >>(B-1) has helped her a great deal. Anyway, I know that does not help much >but that is the reason my daughter >>can not go on a B complex because some of the B's make her much >worse....not to mention as someone else said. >>she would need a million pills(well, not that much but it would feel like a >million!) to make up for the high >>dosage of thiamin that she takes. :-) >>Heidi >> >>>>Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/2/99 9:30:20 PM Central Daylight Time, jscb@... writes: > Hi Everyone, > Excuse my ignorance, but can't you just ask your regular doctor or > dietician to order the lab work? Sue, I can't speak for anyone else but for " us " it's a matter of getting the correct test names and ranges/values. Our PCP is a " sweetheart " of a guy and his staff is terrific at getting things done. I'd trust him without a doubt on treating " the family " for regular illnesses/well check-ups but I gotta say the one and only " problem " I have is that he's either too busy to " research " for himself OR maybe I'm just too impatient ...could be a bit of both??? At any rate I " bring " info in and we " kick " it around a bit then usually he orders the tests ... his biggest " concern " in doing this is that nobody " around " here knows how to interpret the results once we get them back. Oh well not a perfect situation but at least " we " are trying <wee smirk> Hope everything is going well over there in your neck of the woods Take care and best wishes from an Elf in TN... Romona mom to Tori, Zach and Cory http://members.aol.com/elf808 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Hello again , Our doctor initially put my daughter on one B vitamin at a time for a week and then took blood. He determined by her blood levels which was working(B-1), which did not make a difference, and which made her worse(in our case B-2). It was more of a trial and error process for a few weeks until we had the proper adjustments. Heidi Steve, & Fitzgerald wrote: > > > If that is the case, how does one determine which B vitamins to take? Is there a blood test? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Hello again , Our doctor initially put my daughter on one B vitamin at a time for a week and then took blood. He determined by her blood levels which was working(B-1), which did not make a difference, and which made her worse(in our case B-2). It was more of a trial and error process for a few weeks until we had the proper adjustments. Heidi Steve, & Fitzgerald wrote: > > > If that is the case, how does one determine which B vitamins to take? Is there a blood test? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Hello again , Our doctor initially put my daughter on one B vitamin at a time for a week and then took blood. He determined by her blood levels which was working(B-1), which did not make a difference, and which made her worse(in our case B-2). It was more of a trial and error process for a few weeks until we had the proper adjustments. Heidi Steve, & Fitzgerald wrote: > > > If that is the case, how does one determine which B vitamins to take? Is there a blood test? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 , The only way I determined the nutrients was to try large doses of each individually and see how we reacted. Some of these were done on purpose, some by direction from various Drs who thought they had our problems worked out to things like pellegra, etc. and some were accidental like the B3 I gave Clay for a migraine and knocked him out cold. We then did the TX white blood test which the Univ. sold to a private lab and they have now watered down to appear to be worthless for this purpose now to me. They have told me they do not (or are not allowed to-can't remember which) tell you if you can only take a certain amt. of a nutrient, only if you are deficient in one. This doesn't even make sense to me with the original test. If you have a cell and you feed it a nutrient and then watch what it does, you would know how it handles that nutrient I would think. If problems develop with one you would know there is a membrane or some other problem preventing it's absorption or something preventing it's proper use. My thoughts and understanding. If you are interested in this lab and test: SpectraCell Laboratories www.spectracell.com They actually do a lot more than just that one test which I think is very valuable and interesting. I wish to heck tho that they would revert to the original testing. I think it would be a lifesaver literally for some of these metabolic issues. S. Re: Why only " some " B vitamins? >> > >> > >> >> >> >> >> >>Hi , >> >> Not positive here but I think it is because different vitamins work >> >differently depending on the defect. >> >>For instance, my daughter was originally put on riboflavin (B-2) and it >> >made her worse. However, thiamin >> >>(B-1) has helped her a great deal. Anyway, I know that does not help much >> >but that is the reason my daughter >> >>can not go on a B complex because some of the B's make her much >> >worse....not to mention as someone else said. >> >>she would need a million pills(well, not that much but it would feel like >> a >> >million!) to make up for the high >> >>dosage of thiamin that she takes. :-) >> >>Heidi >> >> >> >>>>Brought to you by www.imdn.org - an on-line support group for those >> >affected by mitochondrial disease. >> >> >> > >> >> > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 , The only way I determined the nutrients was to try large doses of each individually and see how we reacted. Some of these were done on purpose, some by direction from various Drs who thought they had our problems worked out to things like pellegra, etc. and some were accidental like the B3 I gave Clay for a migraine and knocked him out cold. We then did the TX white blood test which the Univ. sold to a private lab and they have now watered down to appear to be worthless for this purpose now to me. They have told me they do not (or are not allowed to-can't remember which) tell you if you can only take a certain amt. of a nutrient, only if you are deficient in one. This doesn't even make sense to me with the original test. If you have a cell and you feed it a nutrient and then watch what it does, you would know how it handles that nutrient I would think. If problems develop with one you would know there is a membrane or some other problem preventing it's absorption or something preventing it's proper use. My thoughts and understanding. If you are interested in this lab and test: SpectraCell Laboratories www.spectracell.com They actually do a lot more than just that one test which I think is very valuable and interesting. I wish to heck tho that they would revert to the original testing. I think it would be a lifesaver literally for some of these metabolic issues. S. Re: Why only " some " B vitamins? >> > >> > >> >> >> >> >> >>Hi , >> >> Not positive here but I think it is because different vitamins work >> >differently depending on the defect. >> >>For instance, my daughter was originally put on riboflavin (B-2) and it >> >made her worse. However, thiamin >> >>(B-1) has helped her a great deal. Anyway, I know that does not help much >> >but that is the reason my daughter >> >>can not go on a B complex because some of the B's make her much >> >worse....not to mention as someone else said. >> >>she would need a million pills(well, not that much but it would feel like >> a >> >million!) to make up for the high >> >>dosage of thiamin that she takes. :-) >> >>Heidi >> >> >> >>>>Brought to you by www.imdn.org - an on-line support group for those >> >affected by mitochondrial disease. >> >> >> > >> >> > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 , The only way I determined the nutrients was to try large doses of each individually and see how we reacted. Some of these were done on purpose, some by direction from various Drs who thought they had our problems worked out to things like pellegra, etc. and some were accidental like the B3 I gave Clay for a migraine and knocked him out cold. We then did the TX white blood test which the Univ. sold to a private lab and they have now watered down to appear to be worthless for this purpose now to me. They have told me they do not (or are not allowed to-can't remember which) tell you if you can only take a certain amt. of a nutrient, only if you are deficient in one. This doesn't even make sense to me with the original test. If you have a cell and you feed it a nutrient and then watch what it does, you would know how it handles that nutrient I would think. If problems develop with one you would know there is a membrane or some other problem preventing it's absorption or something preventing it's proper use. My thoughts and understanding. If you are interested in this lab and test: SpectraCell Laboratories www.spectracell.com They actually do a lot more than just that one test which I think is very valuable and interesting. I wish to heck tho that they would revert to the original testing. I think it would be a lifesaver literally for some of these metabolic issues. S. Re: Why only " some " B vitamins? >> > >> > >> >> >> >> >> >>Hi , >> >> Not positive here but I think it is because different vitamins work >> >differently depending on the defect. >> >>For instance, my daughter was originally put on riboflavin (B-2) and it >> >made her worse. However, thiamin >> >>(B-1) has helped her a great deal. Anyway, I know that does not help much >> >but that is the reason my daughter >> >>can not go on a B complex because some of the B's make her much >> >worse....not to mention as someone else said. >> >>she would need a million pills(well, not that much but it would feel like >> a >> >million!) to make up for the high >> >>dosage of thiamin that she takes. :-) >> >>Heidi >> >> >> >>>>Brought to you by www.imdn.org - an on-line support group for those >> >affected by mitochondrial disease. >> >> >> > >> >> > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Hi Everyone, Excuse my ignorance, but can't you just ask your regular doctor or dietician to order the lab work? Sue ( & Jack)-worn out parents to the greatest kids on earth-- Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker -7: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 From what I could figure out this is a good first line test, but what is in the blood versus what the cells actually use can sometimes be 2 different stories, hence the value of the white blood cell testing. S. Re: Why only " some " B vitamins? >From: Dillr@... > >In a message dated 10/2/99 5:00:53 PM Pacific Daylight Time, >sfitzger@... writes: > ><< > If that is the case, how does one determine which B vitamins to take? Is >there a blood test? > > wrote: >> > >I contacted a nutritional biochemist and had Karlys blood sent for an analyst >and also her fatty acid screen. Then she told me which supplements her body >was deficient in. > > > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 From what I could figure out this is a good first line test, but what is in the blood versus what the cells actually use can sometimes be 2 different stories, hence the value of the white blood cell testing. S. Re: Why only " some " B vitamins? >From: Dillr@... > >In a message dated 10/2/99 5:00:53 PM Pacific Daylight Time, >sfitzger@... writes: > ><< > If that is the case, how does one determine which B vitamins to take? Is >there a blood test? > > wrote: >> > >I contacted a nutritional biochemist and had Karlys blood sent for an analyst >and also her fatty acid screen. Then she told me which supplements her body >was deficient in. > > > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Believe me, they aren't interested and furthermore don't know what to do with it after they get the results. (That is for most, sure some do!). Also, like I said blood work showed I had sufficient amts. of like B1 and B12 in my bloodstream but the shots have been lifesavers so obviously the cells (or something) in my body is not making use of what's in the bloodstream. S. Re: Why only " some " B vitamins? > > >Hi Everyone, > Excuse my ignorance, but can't you just ask your regular doctor or >dietician to order the lab work? > >Sue ( & Jack)-worn out parents to the greatest kids on earth-- >Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker >-7: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach >tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Believe me, they aren't interested and furthermore don't know what to do with it after they get the results. (That is for most, sure some do!). Also, like I said blood work showed I had sufficient amts. of like B1 and B12 in my bloodstream but the shots have been lifesavers so obviously the cells (or something) in my body is not making use of what's in the bloodstream. S. Re: Why only " some " B vitamins? > > >Hi Everyone, > Excuse my ignorance, but can't you just ask your regular doctor or >dietician to order the lab work? > >Sue ( & Jack)-worn out parents to the greatest kids on earth-- >Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker >-7: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach >tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/2/99 7:20:04 PM Pacific Daylight Time, Elf808@... writes: << Thank you so very much )) Romona >> You are welcome. I hope it turns out good for you too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 In a message dated 10/2/99 7:30:22 PM Pacific Daylight Time, jscb@... writes: << Excuse my ignorance, but can't you just ask your regular doctor or dietitian to order the lab work? >> Yes, you probably could. But, we live in a small town and our family doctor is good but, his knowledge of extensive fatty acids and blood chemistry is limited. Dr. Kane dose her daily work in this type of research so that is why we chose to do this route. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Wow...thanks for the information! You know, it's ironic, but I ordered a stack of information from Kane's company, Body Bio, just a couple of weeks ago. I heard about her regarding autisim. When I read the packet, I became skeptical. In addition, I couldn't figure out just who and how you are supposed to get blood drawn for this test. I know my pediatrician would laugh in my face if I asked her to do this. But from what you all say, this is worthwhile and I am definitely going to have it done on . Thanks again! Dillr@... wrote: > From: Dillr@... > > In a message dated 10/2/99 7:07:42 PM Pacific Daylight Time, Elf808@... > writes: > > << > , > How did you go about contacting a nutritional biochemist ? They aren't > exactly listed in the Yellow Pages <wee smirk>at least not here in Tenn. > Please when you get a chance would ya mind sending the " secret " s on making > that connection?!! THANKS EVER SO MUCH > 10-02-99 21:01Take care and best wishes from an Elf in TN...Romona >> > > I heard about Dr. Kane from some others that were using her testing. > So far I am pleased. Here is a number you can call and ask for a free > information packet about the testing. . Her company is called > BodyBio. She will work with your family physician or any doctor you choose. > You will get copies of the blood work sent to you and your doctor. > > If you have more questions just ask. > > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Wow...thanks for the information! You know, it's ironic, but I ordered a stack of information from Kane's company, Body Bio, just a couple of weeks ago. I heard about her regarding autisim. When I read the packet, I became skeptical. In addition, I couldn't figure out just who and how you are supposed to get blood drawn for this test. I know my pediatrician would laugh in my face if I asked her to do this. But from what you all say, this is worthwhile and I am definitely going to have it done on . Thanks again! Dillr@... wrote: > From: Dillr@... > > In a message dated 10/2/99 7:07:42 PM Pacific Daylight Time, Elf808@... > writes: > > << > , > How did you go about contacting a nutritional biochemist ? They aren't > exactly listed in the Yellow Pages <wee smirk>at least not here in Tenn. > Please when you get a chance would ya mind sending the " secret " s on making > that connection?!! THANKS EVER SO MUCH > 10-02-99 21:01Take care and best wishes from an Elf in TN...Romona >> > > I heard about Dr. Kane from some others that were using her testing. > So far I am pleased. Here is a number you can call and ask for a free > information packet about the testing. . Her company is called > BodyBio. She will work with your family physician or any doctor you choose. > You will get copies of the blood work sent to you and your doctor. > > If you have more questions just ask. > > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Wow...thanks for the information! You know, it's ironic, but I ordered a stack of information from Kane's company, Body Bio, just a couple of weeks ago. I heard about her regarding autisim. When I read the packet, I became skeptical. In addition, I couldn't figure out just who and how you are supposed to get blood drawn for this test. I know my pediatrician would laugh in my face if I asked her to do this. But from what you all say, this is worthwhile and I am definitely going to have it done on . Thanks again! Dillr@... wrote: > From: Dillr@... > > In a message dated 10/2/99 7:07:42 PM Pacific Daylight Time, Elf808@... > writes: > > << > , > How did you go about contacting a nutritional biochemist ? They aren't > exactly listed in the Yellow Pages <wee smirk>at least not here in Tenn. > Please when you get a chance would ya mind sending the " secret " s on making > that connection?!! THANKS EVER SO MUCH > 10-02-99 21:01Take care and best wishes from an Elf in TN...Romona >> > > I heard about Dr. Kane from some others that were using her testing. > So far I am pleased. Here is a number you can call and ask for a free > information packet about the testing. . Her company is called > BodyBio. She will work with your family physician or any doctor you choose. > You will get copies of the blood work sent to you and your doctor. > > If you have more questions just ask. > > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Our neurologist also told us that B6 could be a problem for those with neuropathy so she didn't want us taking it. Our mito doc also suggested that we only use the individual b vitamins and add them at the dosages of each that was appropriate. When we tried B complex she and I both had an increase in symptoms. We have difficulty with B2, B5 (pantothenic acid) and respond to the others well. But it takes major mega doses of the Biotin and we couldn't take the complex because of that either. jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Our neurologist also told us that B6 could be a problem for those with neuropathy so she didn't want us taking it. Our mito doc also suggested that we only use the individual b vitamins and add them at the dosages of each that was appropriate. When we tried B complex she and I both had an increase in symptoms. We have difficulty with B2, B5 (pantothenic acid) and respond to the others well. But it takes major mega doses of the Biotin and we couldn't take the complex because of that either. jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Our neurologist also told us that B6 could be a problem for those with neuropathy so she didn't want us taking it. Our mito doc also suggested that we only use the individual b vitamins and add them at the dosages of each that was appropriate. When we tried B complex she and I both had an increase in symptoms. We have difficulty with B2, B5 (pantothenic acid) and respond to the others well. But it takes major mega doses of the Biotin and we couldn't take the complex because of that either. jeannine Quote Link to comment Share on other sites More sharing options...
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