Maggs

[Arun Nagrath]

Malory,
I'm pleased you find the thread interesting.

Paromomycin closely resembles neomycin although the dosage and duration to treat gut parasites is probably nothing like the equivalent dose/duration of neomycin to treat gut trimethylamine producing organisms.

I would recommend antibiotic treatment only via a doctor who is well versed with the side-effects of the antibiotic concerned. Drugs in the neomycin/ paromomycin can be very dangerous (deadly) to people who are allergic to them.

Let us have a look at your TMAU results Malory and see what we find:-

Malory, can you tell me the units after your TMA and TMAO results. I need these in order to make sensible interpretation of your results. Does it say micromol/mmol creatinine ?

Everyone can post their TMA results on this thread. Eventually we will create a new thread just for the results and explanatory remarks.

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

Jan 2011 (after diet and B2):
TMA 12*
TMA-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

Was your neomycin course taken after July 2011?

Looking at the TMA results in all your tests, I can see that it was raised (above 11.0) in Oct 2010 but subsequent results were almost normal.

Looking at your TMA/TMA-n-oxide ratios, this was well raised (above 0.21) on the first occasion but your ratio from July 2011 is normal! This result looks very confusing to me. I am puzzled how your oxidation can change so much (improve) with time, as if you had primary TMAU initially but it miraculously disappeared a year later. Vitamin B2 is known to boost residual FM03 function but I can't imagine it would be this effective in improving oxidation.

Perhaps your choline load may provide a clue? What was your choline load in Oct 2010. How about on Jan 2011 and July 2011? (what did you eat on each occasion?)

I don't think an excessive choline load on the first occasion is a possible explanation because your TMAO figure is not unduly high. Equally, an inadequate choline load on subsequent occasions does not explain these results either (TMAO figure is not unduly low).

What remarks did the doctor make on your TMAU test results on each occasion? What was your doctor's conclusion about the change in results with time?

You say:-

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!

It doesn't appear as if your TMA levels correlate well with your odour. I have seen many people with this same lack of correlation.

[Working on it]

Hi Arun,

I started metronidazole on wednesday... 500mg twice a day. I experienced mild nausea, light headedness and hives (just a couple) on the first day, but nothing after that.

By friday, my odor was pretty bad as indicated by the reactions of the people around me. I was really holding out a lot of hope for the antibiotics, but I have an interview next week and can't chance over-the-top odor right now-- so I will have to stop.

Based on the fact that my odor got worse during the 3 days that I took it, do you think there is any benefit in completing a 14 day course? Could this be a case of -- it gets worse before it gets better?

[tintin10]

Hi Working on it,
Sorry to hear about your predicament. I tired a fourteen day heavy duty course of metronidazole a while ago to no avail. Strangely despite a slight metalic taste in my mouth I got absolutely no reactions from it either good or bad.
Anyway what i'd like to say is that if your odour has increased from the drug that could actually a good sign as apparently when the bad bacteria starts to die off a person's odour tends to get worse. I would be very careful about stopping the medication now if you don't mind me saying as by introducing the antibiotic into your system but not giving them a chanve to kill off the problem bacteria properly then there's always a very strong possibility the bacteria will be able to develop a resistance to the drug in the future.
I think that's whats happened to me as i took a very small dose of metronidazole last year. It didn't do me much good then and now I feel I'm resistant to the drug. If you stop now you may severly limit the chance of metronidazole doing you much good in the future.

[malory]

Thanks for the reply Arun. Let me fill in the units:

Oct 2010 test (after a choline load/more or less my previous, healthy, vegetarian diet):

TMA 31.9* umol/mmol creat (reference range 2.5 -10.8)
TMA-n-oxide 40 umol/mmol creat (17 - 147)
TMA/TMA-n-oxide 0.80* (0.05-0.21)
urine creatinine 7.3 mmol/L

January 2011 (after 3 or 4 months of low choline diet and B2 but test taken during menstruation):
TMA 12* umol/mmol creat (2.5-10.8)
TMA-n-oxide 43.3 umol/mmol creat (17-147)
TMA/TMA-n-oxide 0.28* (0.05-0.21)
urine creatinine 3 mmol/L

July 2011 (after 8 months of low choline diet and B2, ozonetherapy in March):
TMA 12.9* umol/mmol creat (2.5-10.8)
TMA-n-oxide 102.4 umol/mmol creat (17-147)
TMA/TMA-n-oxide 0.13 (0.05-0.21)
urine creatinine 1.7 mmol/L


Neomycin was taken after these tests (Sept 2011).

In July, the dr. could not comment on whether I was tmau1 or tmau2 but I am waiting for FMO3 genotyping results.
He said "the urine in January was actually very good with a trimethylamine down to12umol/mmol of creatinine and TMA:TMA-n-oxide ratio of 0.28. ...I think she should be very encouraged by the fact that her trimethylamine level has been able to come right down with dietary treatment. Despite this she feels her symptoms are still not well controlled. I gave a prescription for 2 wks of Neomycin. "

[Arun Nagrath]

Workingonit,
I guess by now you have had 5 days of your metronidazole course. I think it is okay for you to stop now if there is no benefit and the odour has got worse.

If your condition responds to antibiotics I would have expected you to show a huge improvement by now. Clearly this is not the case and the worsening may make you more anxious for the interview. I don't think this is a case of it getting worse before it gets better.
Arun

[Arun Nagrath]

Malory,
If Trimethylaminuria patients' odour was entirely about trimethylamine levels then I would expect a good correlation between TMA and the odour others perceive. However, there are many gases involved. This can be seen by the fact that patients rarely smell just of fish or ammonia.
Arun

[Arun Nagrath]

Healinghappens,
You said:

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.

There are many here who show no benefit with antibiotics and some say it made their odour worse. I think the worsening is temporary though, what do you think Healinghappens?

I think the people who show no benefit with antibiotics either don't have TMAU2 or the bacteria are not sensitive to the antibiotics
Arun

[Working on it]

Thank you for your input Tintin and Arun. I actually stopped taking the metronidazole after 3 days. After reading a few other posts, I realize that I should have continued on a low choline diet while taking it-- I did not. Sometimes I become overly optimistic about things -- as in, this one will be the miracle cure. Anyway, I think I may try it again in the near future while continuing with the diet.

[healinghappens]

Arun - Agreed! I think the worsening is probably only temporary. Yeah, I'm thinking my problem is probably not TMAU. But there do seem to be an awful lot of us with heaps of trouble tolerating antibiotics. BUT I do hope that MANY more might find relief with them under proper doctor care.

[twtwtw]

I am thinking about doing a course of Metronidazole soon and was wondering if i am to take probiotics during the course or right after. Probably a dumb question but this is all so new. Thanks

[mona]

I want to know when is it best to take antibiotics?
is it BEFORE taking probiotics or AFTER?

I want to avoid killing the probiotics with antibiotics

[Tupac Shakur]

Nov 6, 2014 20:43:32 GMT mona said:

I want to know when is it best to take antibiotics?
is it BEFORE taking probiotics or AFTER?

I want to avoid killing the probiotics with antibiotics

This thread is dead as is this website.I recommend using Curezone for a much more active community, albeit small.Anyways to answer your question it's best to not take anti-probiotics to begin with.But if you must I read that its best to take probiotics after your done using anti-biotics otherwise you would just be killing any good probiotics you put in since AB kill both good and bad bacteria.

[mona]

Thanks.
I have noticed a disgusting smell or taste in my mouth all day today. It tastes/smells like I just ate some fried eggs. I had some cheese yesterday and today. I usually don't have dairy so I'm pretty sure the cheese is what's causing that taste/smell.

I also noted that my breath smelled extra bad to other people AND myself today (despite taking an antibiotic which usually helps with my breath but doesn't eliminate the breath odor). Even after rinsing with mouthwash and brushing. Hopefully this bad breath will go away after I finally stop eating dairy today but I doubt it since it usually takes me some time (a few days) to get rid of the toxins in my body from eating the dairy and some weeks to get rid of the tonsil stones I get on my tonsils from eating dairy. But I just LOVEEEEE dairy :-( so it's hard for me to give it up.
The worst part is that when I have dairy (which causes the tonsil stones) I get strong fecal breath. Lately, I had been eating dairy and had no side effects for a few days but now it seems I have an excess build up of toxins from eating dairy in me. (the old bait and switch!)

Anyways, I tried taking an antibiotic today to help with the body odor and bad breath and it did help (it eliminated my body odor) but my breath was still smelly. I detected a slight fecal odor from myself after dinner but it seems to be related again to the tonsil stones and a possible slight NASAL odor that has also been an issue for me (this nasal odor I believe is caused by a deviated septum AND candida. What a terrible mix!).

I can tell I have a variety of issues going on at once because..
In the past I took antifungals while on the candida diet and noticed the body odor/bad breath disappered during and returned when I broke the diet.

But during the days I was odor free on the candida diet, I still showed some odd symptoms.
Example:

1) an Ammonia smell (could be from TMAU or Parasites)
2) strong fecal body odor after a bowel movement, that strongly lingers for hours then dies down through out the day (could be from SIBO or hemrrhoids?)

on the days I didnt have a bowel movement I didn't smell :-) VERY ODD but very clear. My body is saying THERE'S SOMETHING GOING WRONG WHEN YOU HAVE A BOWEL MOVEMENT. So I plan on having a doctor look into that soon to find out whats going on.

In may of 2014, the ammonia smell took a terrible turn and became a very STRONG URINE SMELL that smells like OLD URINE and my armpits started smelling like ONIONS (sounds like parasites AND candida). So to combat this, I am now taking antibiotics with l-arginine and l-ornithine (which helps the liver remove excess ammonia). Together these 3 things are working at controlling the odor. I think I have parasites but I haven't tried anything to kill them. But I believe the fact that I had positive results taking l-ornithine and l-arginine is a clear sign that I have have TMAU (because some tmau suffers have reported smelling like urine) AND/OR parsites. These are the only two explanations I have found for a non kidney/liver disease related problems related to increased ammonia/urea and a urine Body Odor (my recent blood tests showed that both organs are working perfectly).

So the body odor/bad breath I am experiencing seems to be 3-4 different issues teaming up to cause a very disgusting and terrible problem. Perhaps stronger than most people's on this board.

But luckily I have my nose to help me gage my odor (yes, I can smell myself often but not always) AND others' reactions which are the most accurate.

Right now what helps is taking the l-arginine and l-ornithine for the excess ammonia, antibiotics for the TMAU, and for the candida I am doing nothing because it would require me to go on a special diet and take an antifungal (I really hate doing the candida diet/treatment). I found a way to stop the nasal odor/bad breath and bowel movement smell back in 2013 by squirting BETADINE in my BUTT after a bowel movement with a dropper and then using a seperate dropper to do the same with my nose but this method stopped working after a few days. I have told one doctor about this situation and he said he didnt smell anything. Wow.. a waste of a doctors visit.

more details:

The first thing I notice on the candida diet is that the post nasal drip I always have and the nasal odor both disappear along with the body odor and the coughing/comments from others/the nose covering by starngers when I speak or walkby/enter a room and the symptoms only return when I break the candida diet/stop taking the antifungals. I plan on being tested for TMAU sometime soon, getting a scan of my nasal cavity, having dental cleanings and fillings done, having a colonoscopy and exploring possible natural ANTIBIOTIC options so that I do not build a resistance to antibiotics. So far with GOD'S GUIDANCE, I found a product from New Zeland called MANUKA HONEY which could be used as a NATUAL ANTIBIOTIC. I believe God/Jesus/The Holy Spirit has been trying to lead me to this discovery for a very long time. I think this because a long time ago, I became interested in living in Hawaii. Then after visting there and living there for almost a year I became interested in NEW ZEALAND for not much of any reason and with a native culture there called the MAORI. I was very very interested in the MAORI's culture and ways. After all this I come to find out (AFTER I FIND OUT ABOUT MANUKA HONEY) that the MAORI have been eating manuka honey for ages. It's a staple in their diet. Pretty cool how God works everything out, isn't it?

So I went and did some reasearch and I found a local retailer that sells real manuka honey in the usa (careful there are a lot of fake manuka honey resellers!). It's at trader joes and is branded as a trader joes product. It's called "Trader Joe's Manuka Honey". I think it's in a green bottle so if your odor responds to antibiotics why dont you try some manuka honey? They say bacteria never builds a resistance to this honey in particular so that's also a big plus.
I am going to try it soon, I just need the cash to get it. I WILL UPDATE EVERYONE ON THE RESULTS!

GOD BLESS YOU ALL
AND I PRAY WE ALL FIND A CURE!