Sharon
Junior Member
Posts: 73
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Post by Sharon on Jul 4, 2011 1:47:43 GMT
I have been having great success for my TMAU by taking B2 also known as Riboflavin. It has allowed me to increase my diet significantly. Has anyone else with TMAU tried taking it faithfully?
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Post by NiceFlavor on Jul 4, 2011 16:10:22 GMT
What dosage do you take daily and how long did it take to get a noticable effect?
I too feel it helps much better that chlorophyll or charcoal but I am not taking it long enough to be sure..
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Post by Arun Nagrath on Jul 4, 2011 18:12:24 GMT
Hey Sharon, As you know, B2 is essential for the functioning of FM03 and many other enzyme systems in the body. I remember doing some research and a big posting on B2 some years back. I Googled my name and it just popped up! Here is the posting:- Hi, I have noticed that a number of people have now had a good measure of success on taking B2 and I would like to add some tips and advice which may help get the most out of this vitamin supplement. Perhaps it is easier for me to do this in a questions and answers format:-
1 What type of odor conditions does B2 help with and how well does it work?
Well, currently Dr Eileen Treacy is looking specifically into the use of B2 (riboflavin) in patients with Trimethylaminuria. It has also recently started being recomended by researchers in the field... Clearly, it has good effect in some people. It is early stages yet and we will know more about it's place when Dr Treacy publishes her results.
My findings are that even people who do not appear to have symptoms of trimethylaminuria may derive benefit from it! I have seen this in people who have just an intermittent strong underarm sweaty odor and no breath odor and no increase in odor after consuming substantial quantities of choline-rich foods. These people have reported approximately an 80% reduction in odor.
2 What dose should one take and is it safe?
The people I know who have tried this have used doses of 100mg four times a day (sometimes more). This dose has been given to patients undergoing a trial on the use of B2 in migraine prophylaxis and it has generally been well tolerated.
Doses of 400 milligrams daily for four months were found to cause diarrhea and polyuria in two out of 28 subjects who participated in a migraine prophylaxis study. Riboflavin supplements impart a yellow-orange discoloration to urine. This color has no pathological implication. Other possible side-effects at this dose are that it can cause B-complex imbalances, dark urine, nausea, and vomiting.
I have got the following information from an excellent article on B2 and here is a link to it:-
www.gettingwell.com/drug_info/nmdrugprofiles/nutsupdrugs/rib_0263.shtml
PHARMACOKINETICS
The maximal amount of riboflavin that is absorbed from a single oral dose appears to be about 27 milligrams.
A significant percentage of large intakes of riboflavin—greater than 30 milligrams in a single dose—is excreted in the feces.
DOSAGE AND ADMINISTRATION
Doses of riboflavin greater than 30 milligrams should be taken in divided doses.
Okay, so what does this mean? It means taking 100mg four times a day may waste some B2. If the brand of B2 you buy is cheap in your store then that really doesn't matter. However, if it is expensive then you may want to half the tablets and take just half a tablet 4 times a day.
The doses are a bit arbitrary so I wouldn't worry about taking exactly 400mg in a day. However, if you have a lot of fibre in your diet then I would go for a higher dose (100mg 4 times a day) as some will be lost in the stools.
3 Should I take B2 with other vitamins (eg B complex)?
Well I have read 2 things about this. These include:-
a) Vitamin b2 works with vitamins B1, B3 and B6 (aswell as other non-B vitamins eg vitamin C); consequently vitamin B2 should be ideally taken as part of a B complex supplement. Normally it is recomended to buy a riboflavin B2 product that contains other B vitamins as well as they work synergistically.
Okay, here is my advice about all this:-
Whilst it is rational to take B2 as part of a B complex supplement, there is a difference in the various preparations of vitamin B complex. Vitamin B complex contains B1 (thiamine), B2 (riboflavin), B3 (niacin), B5 (pantothenic acid), B6 (pyridoxine), B12, Folic acid and Biotin. However, high strength vitamin B complex (such as B-50 complex) also contains Choline Bitartrate, Inositol, and PABA.
Yes, that's right B-50 complex contains choline so avoid that preparation if you have trimethylaminuria! Quite honestly, the important thing is initially just to see if the B2 works so I would say for new people trying it for the first time just take the B2 by itself for a couple of weeks. If it helps then think about whether or not you want to add vitamin B complex aswell. B2 has been tried by itself at these high doses for migraine sufferers for a few months so it should be relatively safe in the short-term.
Also, remember that we are temporarily treating a particular condition with higher levels of one particular nutrient. This is what the research is about so adding other things (vitamins, minerals etc) may confuse the results.
b) B2 should be combined with a roughly similar quantity of B6?
If this were true, then this would mean taking large doses of this. I do not advise this since there have been concerns about possible toxicity resulting from prolonged use of B6 at high dosage. These concerns have not yet been resolved.
Disclaimer - the above information is true to the best of my knowledge. If you have any concerns about taking B2 then you should wait for Dr Treacy to publish her findings on the subject or see your doctor before trying the supplement.
I hope that helps answer some questions.
Arun
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jcc34
Junior Member
Posts: 86
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Post by jcc34 on Jul 4, 2011 20:16:19 GMT
Thanks Arun
I've been taking B2 in the form of a B complex containing 50 mg B2 two times per day so a total of 100mg B2. I haven't noticed a difference in odour or an improvement in my chapped lips (which is supposed to be a sign of B2 deficiency) however I have had some discolouration in my urine which may or may not have been the B2 from the complex.
I'm wondering if some of us are able to absorb and utilise much more than the 27mg in one go stated, because perhaps we need it to support our overworked FM03 enzymes. I'm going to increase the dosage shortly and see what happens.
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Post by Arun Nagrath on Jul 4, 2011 20:46:34 GMT
Jcc34, Actually that is an excellent point. I must admit, 27mg is the average amount absorbed by patients who had a totally different condition. Excessive dietary fibre and excessive alcohol consumption will both reduce the absorption of B2. It is possible that in our group, we may need doses of up to 100mg to be certain that we are getting the maximum amount absorbed.
2 guys I know who had strong underarm odour experienced a huge reduction in odour when taking dosages of 100mg 4 times a day. These were not people with TMAU and, I must admit, I was quite surprised.
I think the chapped lips is about more than B2 dude. I recently had terribly dry cracked lips for ages and they would sometimes bleed where they got cracked. I took Multibionta 50+ just 1 tablet daily. Believe me, within 5 days the difference was incredible! Within 2 weeks they had healed COMPLETELY. These tablets contain very little B2 (only 1.6mg per tablet!)
Dude, it would take ages to examine all the constituents of this tablet to see what many of us (especially those who get chapped lips as secondary symptoms) are deficient in. But this is what these tablets contain:-
Average Values Per Tablet %RDA
Vitamin A 800 µg RE 100 Vitamin D 5 µg 100 Vitamin E 10 mg α-TE 100 Vitamin C 60 mg 100 Thiamin (Vit B1) 1.4 mg 100 Riboflavin (Vit B2) 1.6mg 100 Niacin 18 mg NE 100 Vitamin B6 2 mg 100 Folic Acid 200 µg 100 Vitamin B12 1 µg 100 Biotin 0.15 mg 100 Pantothenic Acid 6 mg 100 Calcium 90 mg 11 Phosphorus 38 mg 5 Iron 5 mg 36 Magnesium 45 mg 15 Zinc 5 mg 33 Iodine 100µg 67 Manganese 0.4mg * Chromium 25 µg * Molybdenum 25 µg * Selenium 30 µg * Chloride 4.5 mg * Potassium 5 mg * Bilberry Extract 1 mg equivalent to fresh Bilberry 100 mg * Ginseng extract 20 mg equivalent to Ginseng Root 80 mg * Lutein 100 µg * TriBion Harmonis Probiotic Cultures 10 million * Lactobacillus gasseri PA 16/8, Bifidobacterium bifidum MF 20/5, Bifidobacterium longum SP 07/3.
Oh btw, anyone who things I have shares in Multibionta, ofcourse I have, don't you know I own the company! ;D
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Sharon
Junior Member
Posts: 73
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Post by Sharon on Jul 4, 2011 21:37:26 GMT
Thank for the post Arun and jcc34. Somewhere I have a TMAU article on it and I was also advised to try it. I take it following a meal so it acts like an enzyme on that meal I just ate.
What I notice is that as long as my urine is very yellow it works best. So I take it alone, not in a multivitamin. Mine is a 100mg tablet I now take after lunch and another after supper. If my urine isn't pretty yellow I take another after breakfast.
Arun according to your article I am still below the 400 mg level that caused some people diarrhea and polyuria.
An additional point is that some foods can remain in your gut for days so you need to maintain the level daily and keep a pretty yellow urine constantly. It should be safe like this because it is water soluable.
It is not a cure but a big help for me. Yes it also has helped my dry lips!!!
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Post by Arun Nagrath on Jul 4, 2011 21:53:15 GMT
Sharon, the safety information is that less than 10% of patients on dosages of 100mg 4 times a day got diarrhoea or polyuria. So, if need be, you can even increase to 100mg 4 times a day. However, if you are experiencing good symptom reduction at this dose then you may not see any big benefit in increasing the dose, but only add more side-effects.
Glad it worked for you. I find it hard to know if these things work for me as I can never smell myself.
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Sharon
Junior Member
Posts: 73
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Post by Sharon on Jul 5, 2011 2:50:02 GMT
Arun I try to keep it as low as I can. Have bad memories of patients that were on just IV's with vitamins. Their sweat smelled of the vitamins. Like I said it has helped but is no cure. I still follow the diet but eat larger portions. Sharon, the safety information is that less than 10% of patients on dosages of 100mg 4 times a day got diarrhoea or polyuria. So, if need be, you can even increase to 100mg 4 times a day. However, if you are experiencing good symptom reduction at this dose then you may not see any big benefit in increasing the dose, but only add more side-effects. Glad it worked for you. I find it hard to know if these things work for me as I can never smell myself.
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gabby
Junior Member
Posts: 68
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Post by gabby on Jul 6, 2011 1:54:03 GMT
Hi Sharon,
I've had success but cannot pin it down to one thing specifically. I take 50mg with each meal and 100 mg twice a day with my other supplements. My multi gives me the other b vitamins, and I take 1/2 twice a day. Definitely doesn't seem to hurt!
Gabby
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kitty
New Member
Posts: 18
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Post by kitty on Jul 6, 2011 22:36:14 GMT
I too think that B2 has helped me. I've been taking Multibionta for years, and a course of 12 packets of VSL#3 more recently (@ 1 or 2 daily). I had great improvement, but could still detect faint fish odour on my hands after a choline-y food item. I started to take 100g B2 with the M/bionta, when I read that it helped dry lips, which I've suffered for years. I cannot detect any fish smell now, and have started to eat fish and steak. I even had salad nicoise with tuna, egg, and anchovies nothing I didn't think that I needed B2, as I'm diminished Tmau 2, and was told that my liver function was normal..I'm not taking VSL now but will continue with the B2 and see what happens...kittyx
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kitty
New Member
Posts: 18
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Post by kitty on Jul 6, 2011 22:39:45 GMT
Sorry, edit didn't work. Make that 100mg of B2
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Post by malory on Jul 7, 2011 12:48:37 GMT
I've never tried multibionta but I'm willing to have a bash at it. I've only been doing 200mg of B2 a day which makes my urine a lovely sunflower colour but has no effect on my odour. So now I'm going to up the dosage to 400mg of B2 and split up the doses throughout the day. 'Holland and Barrett' here I come...again...
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Post by Arun Nagrath on Jul 7, 2011 18:37:41 GMT
Kitty, Which of the things you have been taking do you think produced the greatest improvement?
Was it the Multibionta, B2 or the VSL#3 ? What dose of VSL#3 do you take? Is the VSL#3 expensive at the dosage you take?
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Post by Arun Nagrath on Jul 7, 2011 18:56:03 GMT
Malory, Yes, both of the 2 guys who benefited from B2 could smell their own odour and they did notice a huge drop after taking the B2 at a dosage of 100mg 4 times a day.
Since neither of these guys had TMAU, I am trying to think up a hypothesis to see if we can predict which cohort of patients the B2 is likely to benefit most.
One hypothesis is that B2 most benefits those patients who can smell themselves. I don't know if this hypothesis is true. Is there anyone on this site who can not smell themselves (ever) yet benefited from vitamin B2?
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Post by Arun Nagrath on Jul 7, 2011 18:59:38 GMT
Since I can never smell myself, I am wondering if the Multibionta that helped my chapped lips might also have helped my odour. If anybody tries it, please do let me know if they think it has helped their odour.
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