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anti-TMA pill in a year or 2 ? (scroll 12 mins)

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MEBO - UBIOME study 2018



MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


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TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

Tuesday, November 6, 2012


3rd Webinar TMAU Webinar number 3

The above is the 3rd TMAU webinar held by Eurordis/ in association with TMAU advocates.

Guest speakers : Dr Robin Lachmann, and his unit dieticians Charlotte Ellerton and Heidi Chan

Transcript of part of the presentation:


It doesn’t really matter whether you have the genetic form of the disease or the acquired form of the disease or some other reason…, the management is the same. What we need to try to do to not cure the disease, but treat the disease and control the symptoms is reduce the amount of trimethylamine (TMA) in the body. (7:56 – 8: 16)

All the TMA that’s coming into the body is really coming from the gut...we need to try to reduce that amount of TMA coming into the body from the gut.
The body itself doesn’t make TMA at all in any measurable quantity. All the TMA that’s coming into the body is really coming from the gut in the first place. All the blood in the gut goes and collects it up and goes to the liver because the liver is the main metabolic organ. It’s responsible not just for detoxifying things, but also for extracting nutrients and most of the other important metabolic processes that go on. So all this TMA is normally efficiently delivered to the liver, where it is effectively turned into trimethyline-N-oxide (TMAO), and there is no problem. In trimethylaminuria (TMAU), at least some of it [TMA] will get through the liver and into the circulation into the rest of the body, and that’s what leads to symptoms. To treat those symptoms, we need to try to reduce that amount of TMA coming into the body from the gut. (9:08)

There is some TMA present in the diet itself in things like fish and shellfish, and it’s simply a matter of cutting those out of your diet. This would be simply straightforward, but unfortunately, it isn’t that easy. There are other source of TMA, and in fact, most of the TMA coming into the body from the gut isn’t coming in through the diet at all, it’s actually being made in the gut itself… The gut is full of billions and billions of bacteria, and we have billions of thousands different species of bacteria, and they are a very important part of our digestive system – we wouldn’t be able to digest our food without them.

Some of these normal colonic bacteria, and as part of their metabolism they take a chemical in the diet called choline and use it as part of their metabolism, and after consuming choline, the bacteria’s waste product is TMA, which the bacteria secretes back into the gut where it is taken up into the body. TMA is chemically very similar to ammonia. So it’s actually choline in the diet that is being acted upon by these bacteria that is probably, normally the largest source of TMA in the body.(11:24)

We don’t just need a diet that is low in TMA, fish and shellfish, but it also has to be low in choline, and it becomes much more restrictive. You can’t cut choline out of your diet all together…but you can cut foods that are high in choline to limit the amount of choline in your diet. (12:00)

if we knew exactly which bacteria they were, and we had tools that were specific enough to go in and specifically take those away and leave everything else behind, now that would be the ideal treatment.
Other forms of treatment…Addressing the issue of the bacteria in the gut that converts choline into trimethylamine. The gut…is full of bacteria and contains a mixture of bacteria and some of the bacteria are producing TMA from choline.

Now if we knew exactly which bacteria they were, and we had tools that were specific enough to go in and specifically take those away and leave everything else behind, now that would be the ideal treatment. But unfortunately, we are not in this position, for two reasons,
  1. Actually, we don’t know which bacteria are actually producing TMA. We know roughly which group of bacteria they are, they are called the anaerobes, but we don’t know exactly which ones, and that’s a big group of bacteria.
  2. Even if we did know which they were, we simply don’t have the tools that are specific enough to go in and take that one or two species of bacteria and leave all the rest behind.

if the bacteria are exposed to antibiotics chronically, [the bacteria] will get resistant to them.
With antibiotics, we do have a much more broad spectrum that kill a wide range of bacteria. And so, what we can use is a group of antibiotics that are particularly active against these anaerobic bacteria, and we can give a course of antibiotics a couple of weeks, which are longer than most courses used to treat an ordinary infection, but we want to have as much effect as we can on the gut. And after two weeks of these antibiotics, there basically are fewer bacteria in the gut…and there would be less TMA produced in the gut.

We can’t keep people on antibiotics forever, many antibiotics wouldn’t be good for you in the long run, and in any case, the bacteria, if they are exposed to antibiotics chronically will get resistant to them. So after a course of antibiotics, we have to stop; and over time, unfortunately, bacteria will do what they do, which is that they will gradually, or even quite quickly, multiply and you’ll be right back where you started, with pretty much the same mix of bacteria you had before, producing a larger amount of choline.(16:04)


after the antibiotics, when we have a gap in the gut flora,...those probiotics will quickly fill up that space that we’ve made.
We can intervene again to try to change the balance of the bacteria in the gut away from those that produce TMA with hopefully the bacteria that don’t. This is where the role of probiotics comes in, with probiotic bacteria preparations, like Bifidobacterium, acidopholus, lactobacillus, and we know that they don’t produce TMA, so at this point after the antibiotics, when we have a gap in the gut flora, we get people to actually take probiotics, and then those probiotics will quickly fill up that space that we’ve made. Once the glass [gut] is full again, there isn’t room for the other bacteria to divide so quickly with luck, we’ll be able to get a long-lasting alteration in the gut flora so that there are fewer of the TMA-producing bacteria. And if at the same time you are following a diet that is low in choline, you are feeding them less choline, and these two approaches, the diet and probiotics, will work together to bring down the levels of TMA, or at least we hope that they will. (17:12)

we can also use it [the TMAU urine test] to monitor the response to treatment.
Now the advantage of having the urine test is that we can measure the TMA levels after a high choline load to show that they’ve got TMAU, but we can also use it to monitor the response to treatment. So when we see people on diet, we can again repeat the TMA levels to see where the levels are, and we can then try antibiotics again… And this is quite important because it actually turns out that there are a lot of people with TMAU are never aware of the odor themselves, and only under certain specific circumstances. This isn’t at all uncommon with odors, we get used to odors very quickly when we are exposed to them every day. So it’s very important to be able to give people feedback and prove to them that we are keeping levels down; and they should be more confident about what they do in their everyday life. (17:57)


VITAMIN RIBOFLAVIN (VIT B2): Can certainly be very useful in some patients. Like nearly every enzyme in the body, FMO3 has a co-factor it needs to make them work efficiently, and many of these co-factors are vitamins, and that’s what vitamins do in the body… Now if you’ve got a normally functioning FMO3 enzyme, now there’s more than enough riboflavin in the everyday diet for it to work properly. But in TMAU, where we know that the enzymes for some reason are not working properly, there are some patients who respond very well to be given…about 100mg/day, which are the sort of tablets you can buy at health food stores. We recommend that everybody try these for a few weeks to see if it has any effect…(19:01)

These don’t actually get absorbed into the body at all; they act solely within the gut. The idea is that they bind not just TMA, but a number of small volatile molecules within the gut, and stop them from being absorbed in the body. Now charcoal is something we use in the hospital emergency department when we see people come in having taken overdoses or poisoning because it will bind to all sorts of small molecules in the drug. So if you are on prescription meds, it’s very important to be careful with charcoal to make sure that it doesn’t interact with the drugs you are on, or that you take it when away from other tablets. (19:41)

Copper Chlorophillin is presumably acting in a similar manner. There is much scientific evidence behind either of these…with the idea that it will bind to smaller molecules that might give some kind of odor. (20:05)

Dr Robin Lachmann PhD FRCP
Consultant in Metabolic Medicine
Charles Dent Metabolic Unit
National Hospital for Neurology and Neurosurgery
London, England

NORD Member Organization


Margaret H said...

I found this piece very interesting and informative. Lets hope it doesn't take too long before they come up with a permanent solution.

Nov 8, 2012, 3:37:00 AM
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