Bloodbourne Halitosis

[Ghana3]

If you have nasal bad breath, it will fill your room, car office, doesnt need To be a bloodborne or Tmau issue imo;

[simple]

There are TONS of conditions that lead to bloodborne halitosis (and other types of VOCs can be found in breath too). Hypermethioninemia is a rare one and frequently goes together with neurological presentation.
A more common cause - Selenbp1 mutation leads to elevated dimethyl sulfide too. Selenbp1 mutation is very likely overrepresented in this forum’s population. It is relatively common in general population too. The reasons why barely anyone with this condition knows about it lies with the complexity and costs of genetic tests (and accuracy too!).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5742538/

This paper is in free access, so everyone can read it too. Good place to start your journey on understanding bloodborne halitosis.

If someone wants to know whether they have hypermethioninemia (before embarking on treatment), they should do a urine test for extended amino acids profile. Unlike Selenbp1 mutation it can be ruled out easily and with certainty. Majority here are more likely to have the latter (Selenbp1 mutation) than the former (hypermethioninemia).

However, I’m just touching a tip of an iceberg, really.

Also, for anyone with extraoral halitosis, I suggest reading a thread “sulfurous, fecal or other bb”.

[KL123]

I'm not sure how many of us expel room filling bb that can be smelled yards away even when your mouth is closed but I am in that club. I've always ruled out blood bourne halitosis for some reason that I cannot even think of right now. Perhaps because it just sounded impossible and far fetched. But after doing some research last night and learning more and more about what causes us to expel such toxic gases it only makes since now. There is a metabolic disorder known as Dimethylsulfidemia which is an excess of a chemical called Dimethyl sulfide in the blood. Our hearts pump blood and oxygen into our lungs and in this transaction of gases Dimethyl sulfide if in excess can also be expelled through the lungs and on the breath. Dimethylsulfidemia is usually caused by Hypermethioninemia which is an excess an amino acid called methionine. Basically, with methionine not being broken down properly the amino acid can be synthesized from methionine into Dimethyl sulfide. Dimethyl sulfide odor is said to vary depending on the concentration from rotten cabbage, musty, moldy yeasty, to sweetly fecal and highly unpleasant. Because Dimethyl sulfide is an irritant toxic gas this may explain ppl's reactions such as coughing, sneezing, clearing sinuses, etc. Dimethylsulfidemia can also be the reason for fecal body odor when TMAU has been ruled out or sometimes in combination with TMAU sufferers. There are no other signs of Dimethylsulfidemia other than odor problems as well as with hypermethioninemia. From what I've read high dose vitamin b6 (Niacin) can be used sometimes with some good results but on rare occasions.

So the good news is that for us room filling, nose and mouth bb sufferers researchers have found the cause for mostly all cases. But the bad news is that there is really no cure out or any reasonable suggestions or theories on what might work other than b6. Currently, MEBO is doing research on this so hopefully we will find something out soon.

Here is a video from MEBO explaining more:
http://www.youtube.com/watch?v=y9Xkr-IIBgY

Already posted this quite a few times.

Looks like both studies are related.

https://www.ru.nl/english/news-agenda/n ... thanethiol.

[Beenhereforeva]

Stillhoping, are the enzymes working still? Check out this article. This is what we all have!!! https://www.radboudumc.nl/en/news/2017/ ... bad-breath
This is why our breath improved with diet changes but what diet changes specifically, nobody says.

[StillHoping]

Stillhoping, are the enzymes working still? Check out this article. This is what we all have!!! https://www.radboudumc.nl/en/news/2017/ ... bad-breath
This is why our breath improved with diet changes but what diet changes specifically, nobody says.

I'm reading through your posts and I think you are confusing HopefulOne and I together. But yes I have found digestive enzymes that really help me but for some reason, they make me extremely bloated. I tend to use it only when I have to go out, and yes it still helps me.

The article you posted and genetic theory makes sense. Especially for my case, as I have a parent with even worse BB. I plan to try the Mcdougall Diet that Jimi suggested next!

[Beenhereforeva]

Stillhoping, are the enzymes working still? Check out this article. This is what we all have!!! https://www.radboudumc.nl/en/news/2017/ ... bad-breath
This is why our breath improved with diet changes but what diet changes specifically, nobody says.

I'm reading through your posts and I think you are confusing HopefulOne and I together. But yes I have found digestive enzymes that really help me but for some reason, they make me extremely bloated. I tend to use it only when I have to go out, and yes it still helps me.

The article you posted and genetic theory makes sense. Especially for my case, as I have a parent with even worse BB. I plan to try the Mcdougall Diet that Jimi suggested next!

I didn’t realize how many times I confused the names.
The enzymes make you bloated but do they help reduce the bb?

[dianess]

This selenbp1 thing is like a death sentence, even tmau is manageable with diet and stuff

[KL123]

This selenbp1 thing is like a death sentence, even tmau is manageable with diet and stuff

Oh yeah baby.
We are in for a very long haul.

Our best bet is more and effective exploration in the medical field of genetic therapy. Perhaps down the road, our future generations may see a ray of hope. But for us, we might take it to our deathbeds.

At this stage of my life, I only and only wish if I had NEVER gotten married or have had kids.
Yes, kids are a great blessing and a great joy - but not very much so, when you pass on this defective gene to them, and then watch them suffer.

[dianess]

This selenbp1 thing is like a death sentence, even tmau is manageable with diet and stuff

Oh yeah baby.
We are in for a very long haul.

Our best bet is more and effective exploration in the medical field of genetic therapy. Perhaps down the road, our future generations may see a ray of hope. But for us, we might take it to our deathbeds.

At this stage of my life, I only and only wish if I had NEVER gotten married or have had kids.
Yes, kids are a great blessing and a great joy - but not very much so, when you pass on this defective gene to them, and then watch them suffer.

Personally, I hope that my case has nothing to do with genetics, since absolutely no one in my family has bb. Not even grandparents, old aunts, cousins - Im the only one, who got extremely lucky ))))

Even if not genetic therapy, maybe they will come up with some kind of regiment (diet, special supplements), which can be a cure for this, I hope. I dont have children and Im nowhere near to that lol, but I totally understand your point and its just really sad, I truly hope that real answers and solutions will come sooner than we think

[KL123]

This selenbp1 thing is like a death sentence, even tmau is manageable with diet and stuff

Oh yeah baby.
We are in for a very long haul.

Our best bet is more and effective exploration in the medical field of genetic therapy. Perhaps down the road, our future generations may see a ray of hope. But for us, we might take it to our deathbeds.

At this stage of my life, I only and only wish if I had NEVER gotten married or have had kids.
Yes, kids are a great blessing and a great joy - but not very much so, when you pass on this defective gene to them, and then watch them suffer.

Personally, I hope that my case has nothing to do with genetics, since absolutely no one in my family has bb. Not even grandparents, old aunts, cousins - Im the only one, who got extremely lucky ))))

Even if not genetic therapy, maybe they will come up with some kind of regiment (diet, special supplements), which can be a cure for this, I hope. I dont have children and Im nowhere near to that lol, but I totally understand your point and its just really sad, I truly hope that real answers and solutions will come sooner than we think

well... if you know that the cause of your chronic halitosis is not genetic, and hopefully also not a faulty liver, then perhaps there are some ways to counter the issue.

What have you done so far to investigate the issue, what else have you ruled out, and what kind of remedies have you tried?

[Ghana3]

Oh yeah baby.
We are in for a very long haul.

Our best bet is more and effective exploration in the medical field of genetic therapy. Perhaps down the road, our future generations may see a ray of hope. But for us, we might take it to our deathbeds.

At this stage of my life, I only and only wish if I had NEVER gotten married or have had kids.
Yes, kids are a great blessing and a great joy - but not very much so, when you pass on this defective gene to them, and then watch them suffer.

Personally, I hope that my case has nothing to do with genetics, since absolutely no one in my family has bb. Not even grandparents, old aunts, cousins - Im the only one, who got extremely lucky ))))

Even if not genetic therapy, maybe they will come up with some kind of regiment (diet, special supplements), which can be a cure for this, I hope. I dont have children and Im nowhere near to that lol, but I totally understand your point and its just really sad, I truly hope that real answers and solutions will come sooner than we think

well... if you know that the cause of your chronic halitosis is not genetic, and hopefully also not a faulty liver, then perhaps there are some ways to counter the issue.

What have you done so far to investigate the issue, what else have you ruled out, and what kind of remedies have you tried?

Well genetic test ( Tmau selenbp1 etc.) are easily available online we can be fixed about our condition in couple weeks; Unfortunetly unless someone got cured, we wont know the exact cause of halitosis or i guess we would cure it. Now halitosis could originate from many other ways than genetics & u mention countering the issue what do you mean by that

[dianess]

Oh yeah baby.
We are in for a very long haul.

Our best bet is more and effective exploration in the medical field of genetic therapy. Perhaps down the road, our future generations may see a ray of hope. But for us, we might take it to our deathbeds.

At this stage of my life, I only and only wish if I had NEVER gotten married or have had kids.
Yes, kids are a great blessing and a great joy - but not very much so, when you pass on this defective gene to them, and then watch them suffer.

Personally, I hope that my case has nothing to do with genetics, since absolutely no one in my family has bb. Not even grandparents, old aunts, cousins - Im the only one, who got extremely lucky ))))

Even if not genetic therapy, maybe they will come up with some kind of regiment (diet, special supplements), which can be a cure for this, I hope. I dont have children and Im nowhere near to that lol, but I totally understand your point and its just really sad, I truly hope that real answers and solutions will come sooner than we think

well... if you know that the cause of your chronic halitosis is not genetic, and hopefully also not a faulty liver, then perhaps there are some ways to counter the issue.

What have you done so far to investigate the issue, what else have you ruled out, and what kind of remedies have you tried?

Tbh Im still a bit afraid that it's something related to genetics and Im saving money to do whole genome sequencing in the future, even if everything is alright with metabolism - its still beneficial to do such a test imo
Beside typical things like visit to dentist, improving oral hygiene, trying "random" supplements which are recommended for bb etc - I have tested negative for SIBO. I'm also scheduled for liver function tests and another blood tests - hormones, deficiencies will be checked. I'm also waiting for my visit to gastroenterologist. And on the other hand I'm also waiting for tonsillectomy (I know that it didn't cure almost anybody and blabla)
I also went vegan and gluten-free, and since I have a bit of free time soon - Im about to try water fasting. I'm also interested in parasite cleanse, but have to read about it more

[dianess]

Personally, I hope that my case has nothing to do with genetics, since absolutely no one in my family has bb. Not even grandparents, old aunts, cousins - Im the only one, who got extremely lucky ))))

Even if not genetic therapy, maybe they will come up with some kind of regiment (diet, special supplements), which can be a cure for this, I hope. I dont have children and Im nowhere near to that lol, but I totally understand your point and its just really sad, I truly hope that real answers and solutions will come sooner than we think

well... if you know that the cause of your chronic halitosis is not genetic, and hopefully also not a faulty liver, then perhaps there are some ways to counter the issue.

What have you done so far to investigate the issue, what else have you ruled out, and what kind of remedies have you tried?

Well genetic test ( Tmau selenbp1 etc.) are easily available online we can be fixed about our condition in couple weeks; Unfortunetly unless someone got cured, we wont know the exact cause of halitosis or i guess we would cure it. Now halitosis could originate from many other ways than genetics & u mention countering the issue what do you mean by that

I dont know if you meant by 'easily avaiable' - sites as 23andme or ancestry but I'm not sure whether the results from them will tell you if you have tmau or selenbp1 mutation. Only genetic tests for these mutations (at clinics etc) or whole genome sequencing can tell you that, and still - its just expensive

[Ghana3]

My point was if you really want To know if either Selenbp1 or TMAU is causing your halitosis, you ll be able To know by tests; the issue with non genetic oral/extra oral halitosis is that most of us there been trying To find the exact cause for years & decades for some, but could not find the rooting cause of our breath malodors;

If i either tested positive for TMAU/Selenbp1 knowing than these are causing my halitosis, i believe it would be easier To focus on one target to find the cure or decrease the malodor;

[KL123]

My point was if you really want To know if either Selenbp1 or TMAU is causing your halitosis, you ll be able To know by tests; the issue with non genetic oral/extra oral halitosis is that most of us there been trying To find the exact cause for years & decades for some, but could not find the rooting cause of our breath malodors;

If i either tested positive for TMAU/Selenbp1 knowing than these are causing my halitosis, i believe it would be easier To focus on one target to find the cure or decrease the malodor;

Yes I agree.
I think one of challenges is, TMAU test is not widely available ..and perhaps 99% of the doctors don't even know what the heck is this?
They are simply unaware of this medical condition.

And SelenBP1 can be done only in ONE lab in the entire whole world.

So, we will see how can we get tested easily for either one of those?