Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 I am going to start taking riboflavin, per my newest doctor's advice. Anyone take it now? What dosage? Is it on the mito cocktail list? I recall that B complex was on the list, and niacin, but don't remember if riboflavin was on separately. Has anyone found any chewable or liquid forms? Thanks, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 RH, Dr. Cohen had me taking 400 mg's of B-2 in the morning and 200 mg's at night. There are B complex vitamins but you won't find enough B-2 in there. I haven't tried to find it in liquid of chewable, but you can find many in liquid at Vitamin World---- some places it's called Puritan's Pride. Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 400 mg a day every day all at once. It has been a REAL important addition for my daughter and I with our migraine headaches. Yes, it is considered to be part of the mito cocktail by most. No chewable or liquid that I am aware of. Another good thing about it, it is one of the few cheap supplements suggested. It will make your pee bright yellow and may have a strong odor the one time you go to the bathroom after taking the dose. ohgminion wrote: >I am going to start taking riboflavin, per my newest doctor's advice. >Anyone take it now? What dosage? Is it on the mito cocktail list? > >I recall that B complex was on the list, and niacin, but don't >remember if riboflavin was on separately. > >Has anyone found any chewable or liquid forms? > >Thanks, >RH > > > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 Riboflavin has been a part of the mito cocktail since the 80s. I started taking riboflavin in 1988 at the suggestion of Wortmann, MD, a metabolic myopathy expert. At that time there were a few reports in the literature about riboflavin helping patients with defects in beta oxidation (which I have). It is cofactor for a number of beta oxidation pathways. I had a remarkable response to riboflavin and have not heard of any other patient with this response. In 1988 I was having attacks of muscle breakdown on average one every ten days. Milder attacks were incapacitating for 3-4 days, more severe ones took weeks to recover. Obviously, sometimes I didn't fully recover before the next one hit. When I started riboflavin, I had NO attacks of muscle breakdown for 6 months. This had never happened before. I also had a major reduction in muscle pain (best pain pill I've ever had!) and increased strength and activity tolerance. Riboflavin saved my functional life at that time. It did NOT halt progression, but it put me way back up the hill. I also have to credit riboflavin for opening the door to further testing for OXPHOS and ultimately the second diagnosis. As you know, riboflavin is also a cofactor for OXPHOS pathways, and partly because I was so riboflavin-responsive, I was urged to have another muscle biopsy. My son also responded remarkably to riboflavin and it allowed him to complete his education. Wortmann and others set up some studies for me to document the biochemical effects of the riboflavin, along with Carnitor. Each was studied separately through a 3-biopsy study, pre and post treatment. Riboflavin did significantly increase my ATP and nucleotides in muscle, though both remained well below normal. We also did some informal, unpublished studies re riboflavin and my glucose/insulin response. Off ribo, my GTT glucose and insulin levels are abnormally high. On ribo the upper end of the glucose curve normalized, though it still dropped to 30 something at 4 hours. My hyperinsulinism also was significantly reduced, though still many times higher than normal. There are reports of a few other patients with beta oxidation defects, such as glutaric aciduria, where riboflavin has either normalized or greatly improved an abnormal glucose curve. Possibly we are unusually response to riboflavin because we have a broad mitochondrial defect that impairs many pathways, and ribo is a cofactor for many of those pathways. Boosting those impaired pathways clearly benefited us in a major way. (It does not help with my migraines, however.) Hope you get at least some help. Definitely worth a try, and I have rarely heard of adverse reactions. Barbara > Riboflavin - vitamin B2 > > I am going to start taking riboflavin, per my newest doctor's advice. > Anyone take it now? What dosage? Is it on the mito cocktail list? > > I recall that B complex was on the list, and niacin, but don't > remember if riboflavin was on separately. > > Has anyone found any chewable or liquid forms? > > Thanks, > RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 Hi, The only place I've found plain B2 was at GNC...it was also surprisingly cheap there too....like $4 for a bottle of 100 or more. From the replies to your question....it looks like we need to increase Dewayne's dosage. Take care. Lynda R. Riboflavin - vitamin B2 I am going to start taking riboflavin, per my newest doctor's advice. Anyone take it now? What dosage? Is it on the mito cocktail list? I recall that B complex was on the list, and niacin, but don't remember if riboflavin was on separately. Has anyone found any chewable or liquid forms? Thanks, RH Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 I order mine from Puritan's Pride. rose farm wrote: >Hi, >The only place I've found plain B2 was at GNC...it was also surprisingly cheap there too....like $4 for a bottle of 100 or more. From the replies to your question....it looks like we need to increase Dewayne's dosage. Take care. >Lynda R. > Riboflavin - vitamin B2 > > > I am going to start taking riboflavin, per my newest doctor's advice. > Anyone take it now? What dosage? Is it on the mito cocktail list? > > I recall that B complex was on the list, and niacin, but don't > remember if riboflavin was on separately. > > Has anyone found any chewable or liquid forms? > > Thanks, > RH > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 I buy Optimum and special order them a dozen at a time through our Wal-Mart pharmacy. They can get them overnight or in 2 days. Optimum is manufactured by Magno-Humphries. We chose this brand because they seem to have fewer binders and break down more quickly for absorption. You can buy them online but then you pay shipping. http://www.magno-humphries.com/categories.asp?a=r&Id=2 Barbara > Re: Riboflavin - vitamin B2 > > I order mine from Puritan's Pride. > > > rose farm wrote: > > >Hi, > >The only place I've found plain B2 was at GNC...it was also surprisingly cheap > there too....like $4 for a bottle of 100 or more. From the replies to your question....it > looks like we need to increase Dewayne's dosage. Take care. > >Lynda R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 Thank you (and others) so much for the info! I guess I'm a bit afraid because B-100 complex gave me a problem, but I certainly understand that taking it separately could be a great thing for me. Take care, RH > > Riboflavin has been a part of the mito cocktail since the 80s. I started > taking riboflavin in 1988 at the suggestion of Wortmann, MD, a > metabolic myopathy expert. At that time there were a few reports in the > literature about riboflavin helping patients with defects in beta oxidation > (which I have). It is cofactor for a number of beta oxidation pathways. I > had a remarkable response to riboflavin and have not heard of any other > patient with this response. In 1988 I was having attacks of muscle breakdown > on average one every ten days. Milder attacks were incapacitating for 3-4 > days, more severe ones took weeks to recover. Obviously, sometimes I didn't > fully recover before the next one hit. When I started riboflavin, I had NO > attacks of muscle breakdown for 6 months. This had never happened before. I > also had a major reduction in muscle pain (best pain pill I've ever had!) > and increased strength and activity tolerance. Riboflavin saved my > functional life at that time. It did NOT halt progression, but it put me way > back up the hill. I also have to credit riboflavin for opening the door to > further testing for OXPHOS and ultimately the second diagnosis. As you know, > riboflavin is also a cofactor for OXPHOS pathways, and partly because I was > so riboflavin-responsive, I was urged to have another muscle biopsy. My son > also responded remarkably to riboflavin and it allowed him to complete his > education. > > Wortmann and others set up some studies for me to document the biochemical > effects of the riboflavin, along with Carnitor. Each was studied separately > through a 3-biopsy study, pre and post treatment. Riboflavin did > significantly increase my ATP and nucleotides in muscle, though both > remained well below normal. > > We also did some informal, unpublished studies re riboflavin and my > glucose/insulin response. Off ribo, my GTT glucose and insulin levels are > abnormally high. On ribo the upper end of the glucose curve normalized, > though it still dropped to 30 something at 4 hours. My hyperinsulinism also > was significantly reduced, though still many times higher than normal. There > are reports of a few other patients with beta oxidation defects, such as > glutaric aciduria, where riboflavin has either normalized or greatly > improved an abnormal glucose curve. > > Possibly we are unusually response to riboflavin because we have a broad > mitochondrial defect that impairs many pathways, and ribo is a cofactor for > many of those pathways. Boosting those impaired pathways clearly benefited > us in a major way. (It does not help with my migraines, however.) > > Hope you get at least some help. Definitely worth a try, and I have rarely > heard of adverse reactions. > > Barbara > > > Riboflavin - vitamin B2 > > > > I am going to start taking riboflavin, per my newest doctor's advice. > > Anyone take it now? What dosage? Is it on the mito cocktail list? > > > > I recall that B complex was on the list, and niacin, but don't > > remember if riboflavin was on separately. > > > > Has anyone found any chewable or liquid forms? > > > > Thanks, > > RH > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Is B2 in the B5o Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 B2 is in B 50 Complex, but only 50 mg. My girls currently take 200 mg of B2 four times/day and B 50 Complex twice/day. The high dose B2 has made a significant difference in the number of migraine headaches they get. MitomomX3@... wrote:Is B2 in the B5o Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 FYI, I had a problem with B-50 and B-100 also. Not sure which B or whether it was the combo. Barbara > Thank you (and others) so much for the info! I guess I'm a bit > afraid because B-100 complex gave me a problem, but I certainly > understand that taking it separately could be a great thing for me. > > Take care, > RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 http://www.swansonvitamins.com/ is my favorite for price and availability, including more expensive stuff. Swanson Premium Brand [store-brand, their cheapest, in green plastic bottles] Vitamin B-2 (Riboflavin) Item# SW018 100 Mg 100 Caps $2.39 Steve D. > Date: Thu, 20 Oct 2005 15:21:49 -0700 > > Subject: Re: Riboflavin - vitamin B2 > > I order mine from Puritan's Pride. > > > rose farm wrote: > >>Hi, >>The only place I've found plain B2 was at GNC...it was also surprisingly >>cheap there too....like $4 for a bottle of 100 or more. From the replies >>to your question....it looks like we need to increase Dewayne's dosage. >>Take care. >>Lynda R. >> Riboflavin - vitamin B2 >> >> >> I am going to start taking riboflavin, per my newest doctor's advice. >> Anyone take it now? What dosage? Is it on the mito cocktail list? >> >> I recall that B complex was on the list, and niacin, but don't >> remember if riboflavin was on separately. >> >> Has anyone found any chewable or liquid forms? >> >> Thanks, >> RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 The doc who diagnosed me I am supposed to take 100 mg three times a day. I seldom do just because I am not good at taking stuff and have mild symptoms. But it, the Qgel, and Carnitor do help greatly when I take them along with the 1000 mg vitamin C I am supposed to take four times a day. Someone on the mito kids list posted that they get a liquid cherry flavored riboflavin. she posted the name of the I believe manufacturer. I cannot find it in my email though--it was posted a couple of days ago or even a week ago. Janet Sample Riboflavin - vitamin B2 I am going to start taking riboflavin, per my newest doctor's advice. Anyone take it now? What dosage? Is it on the mito cocktail list? I recall that B complex was on the list, and niacin, but don't remember if riboflavin was on separately. Has anyone found any chewable or liquid forms? Thanks, RH Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2005 Report Share Posted October 28, 2005 Thank you Janet, I found this, it sounds similar but not sure if it is the same thing: http://www.amazon.com/exec/obidos/tg/detail/-/B0001ITURA/103-3567420- 0036606?v=glance Here is the company's website (company is HoneyCombs Industries), they sell a lot of single vitamins in liquid form. https://secure5.nexternal.com/shared/StoreFront/default.asp? CS=honeycombs&BusType=BtoC&Count1=232341945&Count2=149482369&CategoryI D=2&Target=products.asp 100 mg three times a day seems like a lot according to the RDA (yes, I know RDA's are notoriously low and of course we are treating a medical condition). I'll probably start on 100 mg total per day. I did see on their website that you can buy 1, 8, or 16 oz. of it (I only saw 1 oz. available through Amazon). There are 408 mg/ounce. There's a lot of glycerine in it, I wonder if that would increase motility a bit (or too much LOL). I also found B2 powder from LEF: http://www.lef.org/newshop/items/item00092.html Sounds like the powder might be more cost-effective (and amenable if anyone would want it for tube feeding). Thanks, RH > > The doc who diagnosed me I am supposed to take 100 mg three times a day. I seldom do just because I am not good at taking stuff and have mild symptoms. But it, the Qgel, and Carnitor do help greatly when I take them along with the 1000 mg vitamin C I am supposed to take four times a day. > > Someone on the mito kids list posted that they get a liquid cherry flavored riboflavin. she posted the name of the I believe manufacturer. I cannot find it in my email though--it was posted a couple of days ago or even a week ago. > > Janet Sample > Riboflavin - vitamin B2 > > > I am going to start taking riboflavin, per my newest doctor's advice. > Anyone take it now? What dosage? Is it on the mito cocktail list? > > I recall that B complex was on the list, and niacin, but don't > remember if riboflavin was on separately. > > Has anyone found any chewable or liquid forms? > > Thanks, > RH > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2005 Report Share Posted October 28, 2005 RH Just some more info on subject. Several docs recommend 400mg of B2 to help with migraines. I take mine all at once. Large doses cause the urine to be very yellow and smell, so most I know take it at dinner or bedtime to be able to get rid of the smelly urine before meeting the world. I spoke with a researcher from CA who is now in MI. He researched B2 as a migraine proventer. He said that they used amounts as high as 1200 mg. He said it seems to either work or not work, but is safer than the meds they usually use if it does work. I'm not suggesting that anyone do any of this without a doctor's input. laurie > Thank you Janet, I found this, it sounds similar but not sure if it > is the same thing: > > http://www.amazon.com/exec/obidos/tg/detail/-/B0001ITURA/103-3567420- > 0036606?v=glance > > Here is the company's website (company is HoneyCombs Industries), > they sell a lot of single vitamins in liquid form. > > https://secure5.nexternal.com/shared/StoreFront/default.asp? > CS=honeycombs&BusType=BtoC&Count1=232341945&Count2=149482369&CategoryI > D=2&Target=products.asp > > 100 mg three times a day seems like a lot according to the RDA (yes, > I know RDA's are notoriously low and of course we are treating a > medical condition). I'll probably start on 100 mg total per day. > > I did see on their website that you can buy 1, 8, or 16 oz. of it (I > only saw 1 oz. available through Amazon). There are 408 mg/ounce. > There's a lot of glycerine in it, I wonder if that would increase > motility a bit (or too much LOL). > > I also found B2 powder from LEF: > http://www.lef.org/newshop/items/item00092.html > > Sounds like the powder might be more cost-effective (and amenable if > anyone would want it for tube feeding). > > Thanks, > RH > > > > > > > The doc who diagnosed me I am supposed to take 100 mg three times a > day. I seldom do just because I am not good at taking stuff and have > mild symptoms. But it, the Qgel, and Carnitor do help greatly when I > take them along with the 1000 mg vitamin C I am supposed to take four > times a day. > > > > Someone on the mito kids list posted that they get a liquid cherry > flavored riboflavin. she posted the name of the I believe > manufacturer. I cannot find it in my email though--it was posted a > couple of days ago or even a week ago. > > > > Janet Sample > > Riboflavin - vitamin B2 > > > > > > I am going to start taking riboflavin, per my newest doctor's > advice. > > Anyone take it now? What dosage? Is it on the mito cocktail > list? > > > > I recall that B complex was on the list, and niacin, but don't > > remember if riboflavin was on separately. > > > > Has anyone found any chewable or liquid forms? > > > > Thanks, > > RH > > > > > > > > > > > > Medical advice, information, opinions, data and statements > contained herein are not necessarily those of the list moderators. > The author of this e mail is entirely responsible for its content. > List members are reminded of their responsibility to evaluate the > content of the postings and consult with their physicians regarding > changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who > sends one is automatically moderated or removed depending on the > severity of the attack. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2005 Report Share Posted October 28, 2005 Thanks Laurie, Dr. Garganta (Dr. Korson's colleague) at NEMC told me to try taking riboflavin, but didn't give me any guidelines, I am waiting to hear about test results from her soon. I'll make sure to ask her how much to take, I think I can wait until I hear about my results. Take care, RH > > RH > > Just some more info on subject. Several docs recommend 400mg of B2 to > help with migraines. I take mine all at once. Large doses cause the > urine to be very yellow and smell, so most I know take it at dinner or > bedtime to be able to get rid of the smelly urine before meeting the > world. > > I spoke with a researcher from CA who is now in MI. He researched B2 > as a migraine proventer. He said that they used amounts as high as > 1200 mg. He said it seems to either work or not work, but is safer > than the meds they usually use if it does work. > > I'm not suggesting that anyone do any of this without a doctor's input. > > laurie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2005 Report Share Posted October 28, 2005 Hi RH, As you know I am a patient of Dr. Korson's and he told me to continue to take the B2. It was my MDA Neuro who first put me on the B2. When I saw Dr. Korson he increased my dosage. I am now taking up to 600mgs. It really helps keep my migraines at bay, it doesn't stop them completely, but they have decreased. I have been on B2 for almost 4 yrs. now. You can always email or call Dr. Garganta and ask her what dosage she wants you to start at, if you think it might be awhile until your test results are back. Hugs, Ann-Marie At 12:07 PM 10/28/2005, you wrote: >Thanks Laurie, Dr. Garganta (Dr. Korson's colleague) at NEMC told me >to try taking riboflavin, but didn't give me any guidelines, I am >waiting to hear about test results from her soon. I'll make sure to >ask her how much to take, I think I can wait until I hear about my >results. > >Take care, >RH ---------- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.1.362 / Virus Database: 267.12.5/150 - Release Date: 10/27/2005 Quote Link to comment Share on other sites More sharing options...
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