Maggs

[Arun Nagrath]

Maggs wrote:-

Hi Arun
I will ask Dr Gillette for some different antibiotic on my next visit. I will also print your post and show him what you are suggesting if that’s ok with you?

Yes, that's fine Maggs, you may print my post and show Dr Gillette. I'm sure he may be apprehensive about prescribing 2 week courses of these antibiotics but this is the protocol Dr Lachmann uses and there are many papers suggesting 2 week antibiotic courses in their protocol. However, it is important to look out for any allergic reactions to these antibiotics and to consult your doctor if you become unwell.

Although we don't know for sure the full range of gut bacteria involved in secondary trimethylaminuria, I think the anaerobic bacteria may be major culprits. This is why metronidazole (which treats anaerobic bacteria) was so effective in your case, making you odour-free after just 2-3 days. However, the early nausea it causes you may mean that you could never receive a 2 week course.

Do you have a link to where I can purchase those probiotics? I still find it very strange that I can never smell anyone at the meet ups because I could smell my late father who also had the same problem as me. I also find it strange that I have tmau2 and not tmau1 because I’m sure I was born with this condition. I can’t remember not ever having it.

Amazon keep the Ultimate Flora Critical Care 50 Billion:-

www.amazon.co.uk/Renew-Life-Ultimate-Critical-Billion/dp/B000CMKC5Y/ref=sr_1_1?ie=UTF8&qid=1316894493&sr=8-1

The Genestras HMF Intensives probiotic seems to come from America but try Googling it to see if there are any UK suppliers:-

www.vitaliving.com/product/hmf-intensive-(30-caps)/117.aspx

Thanks for the ‘Meet up’ Arun, as usual it was great fun and I’m happy that I ended up coming. Hopefully next year I will be able to make it a longer weekend. Its a shame Marie and the other American members couldnt make it-maybe next time

Yes, I think future years will be better because Snoopy is better organising the Meetups. Maggs, can you email me all your TMAU results. I won't quote any personal details like Surname, Consultant, NHS number etc. I want to see if we can see if TMAU2 is very obvious from your results. It would be a learning experience for us.
Arun

[air66]

Hi Arun
Let me ask you something.
It seems to me that when it comes to antibiotics you always speak only about TMAU2. Do you think that antibiotics may not help in case of TMAU1 ? You may want to consider that even with TMAU1 bacteria play a significant role, despite the lack of flavin in these sufferers. Or I'm thinking wrong?

I started taking antibiotics but I think I have TM1 and do not know whether to go on. I take them for two days and did not notice any change except for side effects. So I would rather stop taking them if there is no chance they can help me.

Thanks

[Arun Nagrath]

Air66 wrote:-

It seems to me that when it comes to antibiotics you always speak only about TMAU2. Do you think that antibiotics may not help in case of TMAU1? You may want to consider that even with TMAU1 bacteria play a significant role, despite the lack of flavin in these sufferers. Or I'm thinking wrong?

It's possible the body bacterial flora may be changed in TMAU1 sufferers but I don't know to what extent this may affect their odour. Have you read anything about this in any articles Air66? If so, perhaps you can give us a link to the article.

There have been many cases seen of people with primary tmau also having secondary tmau. Antibiotics would certainly be useful in these cases.

I started taking antibiotics but I think I have TM1 and do not know whether to go on. I take them for two days and did not notice any change except for side effects. So I would rather stop taking them if there is no chance they can help me.

Which antibiotics were you taking? I have noticed that people with TMAU2 who take metronidazole often show an early response, (odour disappears within 48 hours)
Arun

[air66]

Here I read:

meboresearch.org/trimethylaminuria.html

" Both TMAU1 and TMAU2 can be controlled with periodic antibiotic therapy as well as dietary choline restriction of eggs, liver, beans, carnitine (meat), and TMA rich foods (seafood). The odor effects of TMA may also be reduced by activated charcoal or copper chlorophyllin tablets to adsorb TMA in the gut and the use of pH5 skin creams to neutralize TMA in sweat. "

The above seems logical since in both cases, tmau1 & tmau2, , the bacteria is responsible for the production of trimethylamine, albeit in somewhat different ways.

I take metronidazole (brand name Orvagil) and we will try to take him for some time more, because otherwise I would be forever asked if he could help me or not. The problem is I do not have anyone to ask about my smell (from the well-known reasons), and can rely only on indirect reaction of environment which is unreliable.

And of course, thanks to my "luck" I could have some other condititon other than tmau or in conjunction with tmau. For me low-choline diet helps with other odors but I always have some basic fecal odor that can not reduce. So maybe I have tmau with a variation or in combination with some other problem. We'll see if it can be improved with antibiotics (and chlorophyll, which I get after two months of waiting because I'm at the end of the world).

Or it`s just a plain tmau. It is hard to tell.

www.bloodbornebodyodorandhalitosis.com/2009/03/part-2-of-interview-with-nigel-manning.html
"There may be other conditions like TMAU which are caused by an unusual gut flora as well as a lack of a detoxifying enzyme. Unfortunately we only have the ability to test for TMA at the moment."

Alex

[Working on it]

Thanks for your response Arun. I saw my doctor on Wednesday and he refused to write an antibiotic prescription for me without a diagnosis. He did, however refer me to a gastroenterologist. Hopefully the gastro will at least be able to smell me.

[maggie]

Hello Arun, thanks for the link for the probiotics. I will email you a copy of my tmau results. I used to have a copy on my pc but can’t find it,so as soon as Ive worked out how to use the scanner I will get it over to you.

I’m going to try 7 days on the Metronidazole and see what happens-I will try and tolerate the sickness.

[Arun Nagrath]

Alex,
You quoted:

"Both TMAU1 and TMAU2 can be controlled with periodic antibiotic therapy"

You would expect the % of TMAU1 sufferers who also have TMAU2 to be really small since these have different causes. However, a much higher than expected number have this. These are the cases of TMAU1 who would need antibiotics.

You mentioned that you want to try antibiotics:

The problem is I do not have anyone to ask about my smell (from the well-known reasons), and can rely only on indirect reaction of environment which is unreliable.

Normally, doctors will not prescribe this if there is no firm diagnosis of infection such as TMAU2 due to bacteria in the gut.I know it is tempting to try antibiotics but if you can not smell yourself then relying upon other peoples' response is likely to produce uncertainty if you get a temporary response (where the odour disappears for only 2-3 days). You may miss this very important diagnostic step altogether and wrongly come to the conclusion that antibiotics have no effect.

You have quoted:

"There may be other conditions like TMAU which are caused by an unusual gut flora as well as a lack of a detoxifying enzyme. Unfortunately we only have the ability to test for TMA at the moment."

Yes, definitely! This is why I have named this Subforum "Odours that respond to Antibiotics" instead of TMAU2.
Arun

[Arun Nagrath]

Maggs wrote:-

I’m going to try 7 days on the Metronidazole and see what happens-I will try and tolerate the sickness. I will email you a copy of my tmau results.

Maggs, are you sure? This may make you feel really sick - won't this affect your work? Did someone advise you to do this (eg doctor). I don't take metronidazole because I get the same nausea problem as you (pretty common side-effect).

Thank you very much for emailing me your test results from when you were first diagnosed with secondary trimethylaminuria. Let us discuss these now and see if we can learn from this:-

Sample date: 2006
Urine Creatinine: 9.4 mmol/L
TMA: 29.6 micromol/mmol creat (ref 1.5 - 11.0)
TMAO: 534.1 micromol/mmol creat (ref 17.0 - 147.0)
TMA/TMAO: 0.06 (0.01 - 0.21)

Now the first thing I can see is that the TMA/TMAO ratio is perfectly normal showing that you don't have TMAU1. In other words, you have normal TMA oxidation in the liver.

So, now let's look for TMAU2. Well this is seen from your urinary TMA which is 29.6 and is thus higher than 11.0

My conclusion is that your high urinary TMA is due to either of the following:-

1 Too much TMA being produced in the gut (ie Secondary TMAU)

2 Due to taking a choline load - the normal range quoted (ref 1.5 - 11.0) is for people who have not received a choline load. It is for the general population who have eaten normally

Maggs, out of these 2 conclusions, I think the first is correct since your odour shows a very definite response to antibiotics.

Now I note that Dr Manning added the following remarks below the results:-

"Eradication of the bacterial overgrowth by a short course of antibiotics (eg metronidazole, amoxicillin or neomycin) should eliminate the excessive TMA. Further antibiotic therapy may be necessary in cases where a structural bowel problem (eg blind loop) causes enterobacterial concentration".

Maggs, in this report from 2006, Dr Manning speaks of a short antibiotic course. Whereas presently, TMAU2 seems to be treated more aggressively as per Dr Lachmann's comments below:-

"We normally rotate 2 week courses of diferent antibiotics. We use Neomycin 500 mg four times a day for 2 weeks, or Metronidazole 400 mg three times a day for 2 weeks or Co-amoxiclav (contains Amoxicillin) 250/125 1 tablet three times a day for 2 weeks. Only take one antibiotic at a time. We recommend being off antibiotics for at least 6 weeks between courses. Probiotics can be useful between the antibiotics".

Dr Lachmann prescribes the following. The rotation is a bit complicated to express but basically only ONE antibiotic is prescribed at any one time.

If A = amoxicillin, M = metronidazole, N = Neomycin

Then the rotation goes:-

A,M,A,N,A,M,A,N,A,M,A,N ....long-term with a 6-8 week gap between each antibiotic. In this way, a metronidazole course is not taken more often that twice a year. Also, neomycin is not taken more than twice a year. This rotation reduces the chance of bacterial resistance.

Maggs, I believe your condition could be improved by aggressive treatment with the right antibiotics (ones that allow you to complete a course without making you feel sick).

Perhaps your doctor might like to email Dr Lachmann for his opinion if he feels he would like to give the rotating schedule of antibiotics a try.

Neomycin and metronidazole are used in every rotating schedule of antibiotic I have come across for TMAU2. Obviously, metronidazole may need to be replaced with another antibiotic if the nausea/ vomiting is severe. I think the choice of replacement antibiotic is a bit arbitrary since, as Dr Lachmann says:-

"Until we know exactly which bacteria are producing TMA and can quantify them, antibiotics are going to be a blunt instrument used blindly".

Arun Nagrath
MRPHARMS.

[maggie]

Hi Arun,
Yes you’re right it is complicated!!! Dr Gillett told me years ago that Metronidazole are the best antibiotics to take for tmau2 and this was found out just by trial and error -so I guess it backs up Dr Lachmans comment about a blunt instrument.

No-one has advised me to try a longer course of Metronidazole, I just think I should try it before I try another antibiotic. Who knows it may work longer then a few days! Dr Gillette gives me a year’s supply to keep for emergencies because Metronidazole are not licensed (as you will know) for PWTMAU so my GP won’t prescribe them. I may ask him for a mixture just to keep in my drawer.
Maggs

[Arun Nagrath]

Maggs,
Yes it's a real shame that we both have such a big problem taking metronidazole.

By all means, give it a proper try but if your side-effects are anything like mine, completing a decent course might be difficult.

When I took metronidazole, I was fine the first 2 days but then it made me feel nauseous. By day 3 I had vomiting and diarrhoea so this meant that even if I continued with the course it would probably go straight through me instead of getting absorbed.

I was prescribed it as part of my treatment for Crohn's disease and not for my odour condition. But I got a hint from one of the hospital staff that it was helping my odour. Unfortunately, since I can't smell myself, I have never been able to verify this.
Arun

[malory]

Such a brilliant thread.

I was really interested in what you were telling me at the meet-up Maggs (thanks Arun for the great meet-up last month!) and i decided to experiment with antibiotic therapy. I'd already taken 2 courses of antibiotics (paromomycin, nitazoxanide, furazolidone, secnidal) to eliminate gut parasites about 2 or 3 years ago. As I'd found no odour relief whatsoever while taking them, i was very reluctant to take further antibiotics for my TMAU even though I was strongly encouraged by Dr Lachmann to take neomycin for 14 days.

I combined 4 sessions of ozonetherapy with antibiotic therapy last month. I had ozone gas (via the rectum) to kill the anaerobic bacteria. I had this once a week throughout September. The day prior to the ozone treatment I fasted for 24 hours and took a laxative called Citrafleet which, maybe due to the saccharin in it, made me really smell on the day of fasting.

I had a very minimal relief of symptoms after my initial ozone treatment during which time i was doing a raw diet and taking B2. I couldn't cope with a raw diet and menstruation at the same time so I introduced potatoes, cooked aubergines and courgettes,

I then started taking neomycin 500g 4x a day. At first it made me feel a bit nauseous but nothing too bad. By the end of the course I had completely adapted to taking the antibiotics and didn't even feel nauseous any more. I followed a non-gluten, minimal choline diet throughout. On day 2 of taking neomycin I had no reactions and I felt sure the whole thing would be successful. On day 3 of neomycin, ( continuing a strict diet and having now had 2 ozone treatments) I had some reactions. I completed the complete course of antibiotics and 2 further ozone treatments (taking care not to take the antibiotics when under the effects of the laxatives) but found no further relief.

I regret taking the antibiotics as they did not help me and I am not wholly convinced by the theory of antibiotic rotation; I think the bacteria I harbour are tough and resistant to everything!

I will not take antibiotics again. Who knows what damage they are doing to my body. Good luck to all of you whose bodies respond to antibiotics; maybe I am a freak among freaks - nothing seems to affect my odour. I just know it is even worse if I eat and much much worse before menstruation.

I was diagnosed a year ago and my tma level is down but my odour the same. (The reactions I receive are often very clear indeed.) Now I intend to maintain the diet and B2 but the antibiotics - NO WAY!

Do we have a separate thread for results? Here are mine anyway in case they are of interest. I haven't had a test since doing the antibiotics therapy.

Oct 2010 (choline load):
TMA 31.9*
YMA-n-oxide 40
TMA/TMA-n-oxide 0.80*
urine creatinine 7.3

Jan 2011 (after diet and B2):
TMA 12*
YMA-n-oxide 43.3
TMA/TMA-n-oxide 0.28*
urine creatinine 3

July 2011 (diet and B2):
TMA 12.9*
TMA-n-oxide 102.4
TMA/TMA-n-oxide 0.13*
urine creatinine 1.7

[kelly]

Yes, this is a really interesting thread.

Like you Malory I do not believe that the antibiotics help me either they just make me feel ill.I believe that my bacteria are too strong to make a difference and that the antibiotics just add another smell to the mix!

For example I took some smelly antibiotic tablets for acne over a number of months, in the end I smelt just like them (I could smell that on myself as well),

I know I often smell of what I have just eaten as people often will comment like a smell of toast, chocolate, pizza etc.
After taking the Ne..... antibiotics at the end of the course I took probiotics and smelt it myself as it was went into my stomach.

So for me this just makes thing worse too.

Interesting Malory that at least your processing of TMA keeps reducing over time with the diet,

Kelly

[kelly]

Malory
Are you TMA1 or TMA2 out of interest,
Kelly

[healinghappens]

Malory and kelly - I also do not believe antibiotics help me at all. But I'm one of those ones who can't get a doctor to take me seriously because I don't present odor when I'm at the appointment. So I don't even have a diagnosis of what is causing my odor. I believe mine has morphed into a cow manure smell since I have had a urinary tract infection recently. Just finished taking antibiotics for that, and I don't think it did anything but make my smell worse, and now there is NOTHING I can eat - not even raw foods - that doesn't cause me odor. I can smell myself - but I still don't think I experience the odor like others do.

So, Arun, sorry I never replied before because you had asked me - nope - I don't think antibiotics help me. I'm deathly afraid of them and they make me VERY sick. More than nauseous. They totally knock me out, and I have vivid nightmares when I'm on them.

I'm glad to know I'm not the only one who has such trouble with antibiotics.

[malory]

Hi Kelly
I requested a genetic test twice but was first told it would make no difference to the treatment so not to bother. I have now had the genetic tmau1 test (July 2011) but the result is not ready yet...