Gene mutation causes chronic bad breath

[mauricio]

dunno dude, did you have consistent heart burn, Chest pain and Abdominal pains? I think these are the basic symptoms of Hiatal Hernia.

I do, chest pain in particular.

Either way, I hope this cures your BB problem for good. This will be an awesome news.

Thanks a lot, I'm at the beginning tho now, we'll see how I can get rid of it.

What did you do to get it diagnosed? Any specific specialty physician or surgeon who looked into it?

Yes, a gastroenterologist had me get tested with endoscopy, I had to insist on it.
I only got the result of the examination, this is done immediately after undergoing it, you get a tube down your throat as you know.
The words and phrasing in the medical report, although short, are rather technical so the doctor who performed the examination explained to me I have this condition. Now I should get the medical report back to the gastroenterologist so we can decide how to treat it. Truth is I've already decided for a long fast, something he will obviously not agree on thus I won't tell him, but I still need to work for one month and I'll probably take some antacids to keep the pain under control.

This video says it has 4 types.


https://www.youtube.com/watch?v=Dvxb4AI_KHo

Yes, thanks for sharing, I'm trying to gather as much infos as possible on the subject, it's a condition I've always overlooked, can't say I've completely processed this yet, guess my mind just can't get used to have years of suffering explained with an examination that takes five minutes.
Just to be clear the medical report doesn't indicate whether I've type 1,2,3 or 4 but I don't believe this is something that's usually reported in these short post-examination documents. But that's definitely one of the reasons I'll probably gonna hear the gastroenterologist's opinion again.
I was/am a bit reluctant to book another appointment cause it costs €120, I know I'm being a bit cheap but I'm not earning much and the doctor and I definitely don't share the same opinion on diets.

Hope this helps.

[mauricio]

Not that I'm any longer interested in this route but what do you know, an actual email from prof Wevers:

LS,
Thank you for raising this question. Our lab in Nijmegen only accepts requests for this gene testing when requested by a medical doctor / general practitioner.
For the test we should receive a tube of uncentrifuged EDTA blood plus a formal request. The request should be done by your doctor and he/she can use our website to request the relevant DNA test of the SELENBP1 gene. This link will show the way how to request the test: https://order.radboudumc.nl/en/products ... -halitosis

In case this gives any problems please let me know. The costs of this test will amount to 385 Euro/person. The results of the investigation will be reported back to your doctor. Please let me know whether any questions remain on the procedure.

best regards

ron wevers

See, absolutely no need to waste 700€ in Amsterdam, and your doctor can request this.

[KL123]

Not that I'm any longer interested in this route but what do you know, an actual email from prof Wevers:

LS,
Thank you for raising this question. Our lab in Nijmegen only accepts requests for this gene testing when requested by a medical doctor / general practitioner.
For the test we should receive a tube of uncentrifuged EDTA blood plus a formal request. The request should be done by your doctor and he/she can use our website to request the relevant DNA test of the SELENBP1 gene. This link will show the way how to request the test: https://order.radboudumc.nl/en/products ... -halitosis

In case this gives any problems please let me know. The costs of this test will amount to 385 Euro/person. The results of the investigation will be reported back to your doctor. Please let me know whether any questions remain on the procedure.

best regards

ron wevers

See, absolutely no need to waste 700€ in Amsterdam, and your doctor can request this.

But the doctor has to be licensed in Holland or anywhere in the Europe.
I doubt if he is going accept a request from a doctor in United States? Can we ask him this?

[mauricio]

The doctor has to be in your country, can you think of anything more absurd than living in US and having to have a dutch GP you don't know making the request for such testing. KL you definitely owe me a dinner after this, you don't even have to travel, just send the request and the sample and you'll be done with it, I've saved you a few thousands bucks



little update on my situation, went to see the gastroenterologist with the endoscopy medical report, the hiatal hernia doesn't seem to be big enough to get surgery which honestly I was hoping for to be done for good. Instead, I've to take a course of medications, I'll keep you posted.
Honestly have zero confidence in that dude, keeps asking me about meat, depression, and claimed the symptoms I describe are not consistent with endoscopy findings, overall very bad attitude. We are at a point when we pay and docs pretend patients to self diagnose correctly? I don't know, just fed up with this.
As I've said I can't fast right now cause I still have to do some weeks of work then we'll see.

[petalpetal]

i also just had a reply from ron regarding test. i asked for clarification if the doctor needs to be in netherlands and he confirmed no, just a registered doctor. feels equally awkward going to my doctor, asking for a test i've found online... i am imagining an eye roll and for him to tell me that i am not a doctor

[KL123]

The doctor has to be in your country, can you think of anything more absurd than living in US and having to have a dutch GP you don't know making the request for such testing. KL you definitely owe me a dinner after this, you don't even have to travel, just send the request and the sample and you'll be done with it, I've saved you a few thousands bucks



little update on my situation, went to see the gastroenterologist with the endoscopy medical report, the hiatal hernia doesn't seem to be big enough to get surgery which honestly I was hoping for to be done for good. Instead, I've to take a course of medications, I'll keep you posted.
Honestly have zero confidence in that dude, keeps asking me about meat, depression, and claimed the symptoms I describe are not consistent with endoscopy findings, overall very bad attitude. We are at a point when we pay and docs pretend patients to self diagnose correctly? I don't know, just fed up with this.
As I've said I can't fast right now cause I still have to do some weeks of work then we'll see.

Yes dude, Lunch is never a problem. If nothing else, I will send you a gift card.
Now, did you tell your GI about oral malodor symptoms that could be caused by hiatial hernia?

[KL123]

i also just had a reply from ron regarding test. i asked for clarification if the doctor needs to be in netherlands and he confirmed no, just a registered doctor. feels equally awkward going to my doctor, asking for a test i've found online... i am imagining an eye roll and for him to tell me that i am not a doctor

Who did you get the reply from?
I am going to consult a local doctor who specializes in genetic therapy, and see if he can place this order for me?

[Freshhope]

Can’t wait to see if anyone here test positive for this gene mutation . Kl 123, petal, Mauricio any of you been tested for tmau?

[mauricio]

@KL
yes I'm taking medications prescribed by the GI.
You don't need a doc that specializes in genetics, your GP can sign the request.

@Freshope
I have not. Why would I test for that, don't have that kind of issues.

[Freshhope]

Fair enough. I just thought since it’s in the odour causing condition it would be worth getting it checked . I only have bb and not much body odour but will push for some tmau testing in the future just for peace of mind

[KL123]

@KL
yes I'm taking medications prescribed by the GI.
You don't need a doc that specializes in genetics, your GP can sign the request.

Yeah, I wanted to involve a genetic specialist in an effort to bring some sorta awareness about Chronic Halitosis into the gene therapy field here in the United States. It will be like dropping a small drop of water into an empty and dry bucket.

What kinda medication are you taking and are there any initial results?

[mauricio]

Fair enough. I just thought since it’s in the odour causing condition it would be worth getting it checked . I only have bb and not much body odour but will push for some tmau testing in the future just for peace of mind

People I know who have bb have absolutely normal body odor.

What kinda medication are you taking and are there any initial results?

so far: Esomeprazole (PPI), I'm only on day 5, no improvement.
from tommorow I'll add Levosulpiride (Prokinetic agent).

My GP had prescibed Esomeprazole before I went the second time to see the gastroenterologist who added Levosulpiride as well.

[mauricio]

Well the hiatal hernia route failed, just thought I would update. I'm researching the processes described in the Glutathione thread, which are actually related to the subject of this thread.


KL123 have you taken this damn dna test))?