Riboflavin also

antibiotics, nullo etc. - what works for you?

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Riboflavin also

Postby Ellie Girl » Tue Sep 04, 2012 1:00 pm

Hi All

Been a long time - long story but am back and fighting fit!

Very excited - I have had my 3rd lot of TMA results back from Dr Manning (last lot taken at the time of 'Food Doctor' when I was on a VERY restricted diet - this was September 2011) and although I am on a much broader diet, my TMA levels have dropped!

September 2011TMA - 14.5
July 2012 TMA - 11.6
'Normal' reference range 2.5 to 10.8

My TMAOxide range (which shows, I believe, if the FM03 enzyme is working) is 47.9 - reference range is 17 - 147. I don't have my last TMAO figure to hand but it was sonething like 25 - so it shows I am producing lower levels of odour (TMA) and higher levels of oxidised TMA (non-odourless). Hooray!

I've been wondering what I've done differently as I am now eating bread, potatoes, more cheese, loads more of everything including dairy (but still no meat, fish, nuts or pulses or coffee or chocolate or soya) and my levels have improved. Still not 'normal' but very close to. I have one or 2 bad days a month now, and some of that is due to my period, and some to my love of Jalapenos and white wine (I refuse to give up everything!) but I know when those days are going to happen.

Since September I have been having 100 mg Riboflavin (B2) in the morning and the evening, but also wth every meal, and following every meal 750mg charcoal. Dr Lachman thought 100mg with every meal might be excessive, but it really is the only thing I am doing differently. The body excretes excess B2 so it shouldn't be a problem.

I am TMAU 2 though - so I still have some FM03 function, even though it is impaired, but the tests show that it has improved. So if you are TMAU 2 and not trying it, do try it! It still doesn't help me with really stinky things but it's made a difference to what I can generally tolerate.

And I've gone from living on strawberries, carrots, apples and cucumbers to having a fairly healthy vegetarian diet - all my blood levels etc are with normal range - and I have enough energy now to run 10km every morning before work* and am cycling again. A far cry from losing weight at a rate of knots and having no energy to do anything.

Hope you are all well.

Ellie xx

*I slightly stuffed this up by going out with the girls on Friday and falling off my paltforms after too much wine and spraining my ankle, but hey ho, girls and their alcohol :-)
Ellie Girl
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Joined: Fri Dec 17, 2010 4:30 pm

Re: Riboflavin also

Postby egglover » Wed Sep 05, 2012 12:52 pm

That's such a positive story - I'm so pleased you've got your levels down so much. My doctor didn't tell me what my levels were so I'm going to ask him and then I can do a comparison in six months time to see if the diet/antibiotics are doing their thing.

I'm also taking b2 and Nullo but might stop them for a week as don't want them to interfer with the antibiotics.
Don't know if we can "name drop" but saw an advert for kerrygold cheese so off to the shops to see if I can get some. They claim their butter is produced from grass fed cows and believe their cheese is aswell. The thought of cheese on toast - heaven :D

ps good for you having a few too many glasses of wine. Think we deserve some pleasure in life! Hope the ankle gets better soon
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Re: Riboflavin also

Postby minnie » Mon Dec 03, 2012 8:54 pm

Hi Ellie,

That is great that your levels have reduced and that you have a more varied diet :D This has filled me with hope as my diet is very similar to your old diet and I am starving!

I have just been diagnosed finally after so many referrals to the wrong people. I didn't get to find out my tmau levels but my specialist said that there was a strong indication that I have it. I will ask for the results when I see him.

I am going to meet with the specialist for the first time after Christmas and he seems very keen on using anti-biotics. I was just wondering have you tried any anti-biotics and have they worked for you if you have?

I have been using charcoal as a quick fix but I'm not 100% sure if it is working. My specialist says that the majority of his patients found it to be ineffective. :?

All trial and error I guess!

Minne x
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Joined: Fri Jul 20, 2012 3:46 pm

Re: Riboflavin also

Postby Ellie Girl » Wed Dec 05, 2012 1:44 pm

Thanks both :-)

It's all trial and error, and I really hope it makes a difference for you!

My experience of charcoal is taking it with the meal, and taking it for about a week before there's a difference. I think the difference is marginal but I think for me it works at least a little. Be careful which you get though as the H&B charcoal has nut derivatives in it and that one really makes me pong like cabbage!

Last year I regularly had antibiotics (metranidazole and nemycin sulphate) and al though they seemed to help afterwards if I then stuck to the probiotocs and a restricted diet, I stank while I took them. Also you build up an immunity and they were giving me really bad stomach acid. I haven't taken any in a year and am going to try to avoid from now on. Although it might be a good place to kickstart - they do seem to help to get the bad bacteria levels down.

Good luck!

E x
Ellie Girl
Posts: 107
Joined: Fri Dec 17, 2010 4:30 pm

Re: Riboflavin also

Postby Ellie Girl » Wed Dec 05, 2012 1:44 pm

Egglover - Kerrygold? Is it vegetarian rennet? If so, I'm on it! :D Cheese on toast! Heaven!!

E x
Ellie Girl
Posts: 107
Joined: Fri Dec 17, 2010 4:30 pm

Re: Riboflavin also

Postby Rosie » Thu Dec 13, 2012 8:38 pm

Thanks for posting your encouraging news, Ellie. I've taken a course of antibiotics and am now taking a daily probiotic and B2, and I think it's making a difference (along with a more sensible diet... can't believe I used to eat meatballs all the time!). I've tried charcoal in the past and it didn't seem to help me much, although that was pre-diagnosis, but haven't tried nullo, does that work for you or anyone else reading this?

What still gets to me is stress - ugh! - and social situations make me panic, but with the party season upon us it's too bad... can't sit at home for the entire festive stretch. Does anyone here have a particular approach for coping with 'symptom inducing' situations? I try to keep a much closer eye on what I'm eating for about two days before an event, assuming that all the bad stuff will be metabolised and not hang around in my system, but sometimes I wonder if the choline is just in there waiting to attack at some inopportune moment. This really is a peculiar thing to live with.
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Re: Riboflavin also

Postby mel304067 » Tue Jan 08, 2013 12:25 pm

Hi all and happy new year!
I do everything you all do in terms of supps and antibiotics, apart from the probiotics. I use australian toothpaste, tongue gel aand mouthwash daily followed by their probiotic tablet you dissolve on your tongue and I've found these help. However no matter how strict I am with the regime if I'm faced with a stressfull situation my symptoms are almost instant. Its hard to get through a normal day when you want to avoid everyone! Before my monthly antibiotics I'd just avoid human contact for a few days every month.
Which probiotics do you all take?
P.s. I've tested positive for tmau and beleive I'm type 1 as I've beel like this for as long as I can remember :(
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Joined: Tue Nov 02, 2010 11:23 am

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