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Re: Gene mutation causes chronic bad breath
Posted: Tue Jun 23, 2020 1:09 am
by Freshhope
I do believe we have a genetic issue either selenbp1 or tmau or undiscovered. In the selenbp1 study they did refer to cabbage like smell but I think they were trying to be nice. I’d describe mine as fecal. They did get a reduction with metronidazole like most of us.
Re: Gene mutation causes chronic bad breath
Posted: Thu Jun 25, 2020 1:20 am
by mauricio
KL123 wrote: Tue Jun 16, 2020 1:02 am
I think the patient felt better on day 3 but the docs already advised him to complete 14 days even after feeling better before that.
And I think the patient felt a lot better after that.
The patient as in one of your family members?
Re: Gene mutation causes chronic bad breath
Posted: Thu Jun 25, 2020 1:22 am
by mauricio
Freshhope wrote: Tue Jun 23, 2020 1:09 am
I do believe we have a genetic issue either selenbp1 or tmau or undiscovered. In the selenbp1 study they did refer to cabbage like smell but I think they were trying to be nice. I’d describe mine as fecal. They did get a reduction with metronidazole like most of us.
You mean cooked cabbage and feces have similar odors.... the stuff I read in here.
Re: Gene mutation causes chronic bad breath
Posted: Fri Jul 03, 2020 11:03 am
by mauricio
So.. there's seem to be a somewhat surprising twist for those who thought the dutch clinic would dna test us, I've just emailed them for dates availability:
Thank you for your message. We do not do DNA tests, this is not necessary.
We do the halitoses consultation according to our protocol. Doctor Winkel assessess which examinations are needed, only then can a proper diagnosis be made. The costs are as they are, see the price list.
You can only make an appointment by phone.
Availability can then be discussed
wtf

the whole point of getting tested there was the dna test and now this came up.
The first step is testing if you have intra-oral or extra-oral halitosis .
This can be done at
www.kvpa.nl.
If you have extra-oral halitosis than maybe, not always , it is necessary to test for SELENBP1.
Best regards and have a nice Christmas.
Edwin Winkel
This was Dr Winkel's reply from December.
I think I've just saved myself a trip to Holland and €700 in useless tests.
Re: Gene mutation causes chronic bad breath
Posted: Sat Jul 04, 2020 8:36 pm
by Jimi Stein
be carefull it is just another scam Katz clone....they just want to lure you in with DNA stories etc...and when you come and pay they will say it is not necessary.....
strangely they told you in advance by email what will happen.....big mistake from their side, because obviously you are very naive person who would go there to some scam bullshit clinic
Re: Gene mutation causes chronic bad breath
Posted: Sun Jul 05, 2020 10:32 am
by mauricio
This is a credited uni professor, found this very strange. I've contacted him again to inquiry further, even invited him for a Q&A, reply was 'not interested', no explanation on why it was initially stated dna testing was possible.
Re: Gene mutation causes chronic bad breath
Posted: Tue Jul 07, 2020 2:38 am
by KL123
mauricio wrote: Fri Jul 03, 2020 11:03 am
So.. there's seem to be a somewhat surprising twist for those who thought the dutch clinic would dna test us, I've just emailed them for dates availability:
Thank you for your message. We do not do DNA tests, this is not necessary.
We do the halitoses consultation according to our protocol. Doctor Winkel assessess which examinations are needed, only then can a proper diagnosis be made. The costs are as they are, see the price list.
You can only make an appointment by phone.
Availability can then be discussed
wtf

the whole point of getting tested there was the dna test and now this came up.
The first step is testing if you have intra-oral or extra-oral halitosis .
This can be done at
www.kvpa.nl.
If you have extra-oral halitosis than maybe, not always , it is necessary to test for SELENBP1.
Best regards and have a nice Christmas.
Edwin Winkel
This was Dr Winkel's reply from December.
I think I've just saved myself a trip to Holland and €700 in useless tests.
If I was you, I would definitely call them and use this SPECIFIC TERM, "Hello, I am interested in having a SELENBP1 testing done. Please provide information about how can I get tested for SELENBP1"?
The term "DNA testing" might have threw them off, and obviously they do not perform any DNA or SELENBP1 testing at this dental clinic.
From what I understand (and I may be wrong), this clinic will evaluate you to see if you are good candidate for SELENBP1. And if yes, they will refer you to Radboud University lab. And this initial consultation should not cost you €700.
If this still doesn't get you the right answer, then call the Radboud and attempt to speak directly with professor Huub Op den Camp at 31 (0)24 365 2657, and request him to walk you through the process of getting SELENBP1 testing.
Yes, it is quite possible that the cause of your bb is not exactly SELENBP1 so perhaps you are not too much upbeat about it. And rightly so, because the symptoms of SELENBP1 seem not to be common with your case, however, for me personally, I am 99% sure that I am a good candidate for this testing. I just can't get to this clinic due to the current covid environment,
Re: Gene mutation causes chronic bad breath
Posted: Wed Jul 08, 2020 10:04 am
by Freshhope
It’s interesting to me that even if my bad breath is not curable. It’s still so tempting to know what is the cause. I guess it also gives you an area to focus on the symptoms
Re: Gene mutation causes chronic bad breath
Posted: Thu Jul 09, 2020 1:31 am
by mauricio
KL123 wrote: Tue Jul 07, 2020 2:38 am
If I was you, I would definitely call them and use this SPECIFIC TERM, "Hello, I am interested in having a SELENBP1 testing done. Please provide information about how can I get tested for SELENBP1"?
The term "DNA testing" might have threw them off, and obviously they do not perform any DNA or SELENBP1 testing at this dental clinic.
This is exactly what I've done, only via email, so it should have been much easier to avoid 'misunderstandings'.
This is the last time I'm commenting on this, I've spent enough time on the matter.
KL123 wrote: Tue Jul 07, 2020 2:38 am
From what I understand (and I may be wrong), this clinic will evaluate you to see if you are good candidate for SELENBP1. And if yes, they will refer you to Radboud University lab. And this initial consultation should not cost you €700.
if you say so.
it makes perfect sense to spend 700€ at an ordinary dental clinic in Amsterdam only to get tested in Nijmegen, at whose expense I can only guess given that in over 10 emails with professors and clinic staff this still wasn't clear.
KL123 wrote: Tue Jul 07, 2020 2:38 am
If this still doesn't get you the right answer, then call the Radboud and attempt to speak directly with professor Huub Op den Camp at 31 (0)24 365 2657, and request him to walk you through the process of getting SELENBP1 testing.
professor Huub Op den Camp told me to write to Professor Ron Wavers, I've posted that email in here, the one with the list of foods with methionine, professor Ron Wavers never answered my email.
Re: Gene mutation causes chronic bad breath
Posted: Thu Jul 09, 2020 6:14 pm
by KL123
mauricio wrote: Thu Jul 09, 2020 1:31 am
KL123 wrote: Tue Jul 07, 2020 2:38 am
If I was you, I would definitely call them and use this SPECIFIC TERM, "Hello, I am interested in having a SELENBP1 testing done. Please provide information about how can I get tested for SELENBP1"?
The term "DNA testing" might have threw them off, and obviously they do not perform any DNA or SELENBP1 testing at this dental clinic.
This is exactly what I've done, only via email, so it should have been much easier to avoid 'misunderstandings'.
This is the last time I'm commenting on this, I've spent enough time on the matter.
KL123 wrote: Tue Jul 07, 2020 2:38 am
From what I understand (and I may be wrong), this clinic will evaluate you to see if you are good candidate for SELENBP1. And if yes, they will refer you to Radboud University lab. And this initial consultation should not cost you €700.
if you say so.
it makes perfect sense to spend 700€ at an ordinary dental clinic in Amsterdam only to get tested in Nijmegen, at whose expense I can only guess given that in over 10 emails with professors and clinic staff this still wasn't clear.
KL123 wrote: Tue Jul 07, 2020 2:38 am
If this still doesn't get you the right answer, then call the Radboud and attempt to speak directly with professor Huub Op den Camp at 31 (0)24 365 2657, and request him to walk you through the process of getting SELENBP1 testing.
professor Huub Op den Camp told me to write to Professor Ron Wavers, I've posted that email in here, the one with the list of foods with methionine, professor Ron Wavers never answered my email.
From what I heard, professor Ron Wevers has retired.
So you might wanna call back Professor Huub to see how this testing can be done?
And I don't think I saw your email with list of foods high in methionine. Can you send me a pvt message with that list? Thanks
Re: Gene mutation causes chronic bad breath
Posted: Thu Jul 09, 2020 8:46 pm
by Jimi Stein
mauricio wrote: Sun Jul 05, 2020 10:32 am
This is a credited uni professor, found this very strange. I've contacted him again to inquiry further, even invited him for a Q&A, reply was 'not interested', no explanation on why it was initially stated dna testing was possible.
he just does not care obviously...
Re: Gene mutation causes chronic bad breath
Posted: Fri Jul 10, 2020 9:23 pm
by KL123
Jimi Stein wrote: Thu Jul 09, 2020 8:46 pm
mauricio wrote: Sun Jul 05, 2020 10:32 am
This is a credited uni professor, found this very strange. I've contacted him again to inquiry further, even invited him for a Q&A, reply was 'not interested', no explanation on why it was initially stated dna testing was possible.
he just does not care obviously...
I wouldn't be surprised to know if some big pharma has already purchased the rights on this research or whoever have funded this research in the first place, has now put some sorta restrictions to further getting it out after the initial publications?
It's all about money.
Re: Gene mutation causes chronic bad breath
Posted: Sat Jul 11, 2020 12:35 pm
by mauricio
KL123 wrote: Thu Jul 09, 2020 6:14 pm
And I don't think I saw your email with list of foods high in methionine. Can you send me a pvt message with that list? Thanks
https://www.brendadavisrd.com/methionin ... cted-diet/
KL123 wrote: Fri Jul 10, 2020 9:23 pm
I wouldn't be surprised to know if some big pharma has already purchased the rights on this research or whoever have funded this research in the first place, has now put some sorta restrictions to further getting it out after the initial publications?
It's all about money.
cut the BS KL
update: I just got diagnosed with hiatal hernia, total cost for examination: €80, so long €700-for-a-useless-visit-clinic!
Re: Gene mutation causes chronic bad breath
Posted: Sat Jul 11, 2020 7:38 pm
by KL123
mauricio wrote: Sat Jul 11, 2020 12:35 pm
KL123 wrote: Thu Jul 09, 2020 6:14 pm
And I don't think I saw your email with list of foods high in methionine. Can you send me a pvt message with that list? Thanks
https://www.brendadavisrd.com/methionin ... cted-diet/
KL123 wrote: Fri Jul 10, 2020 9:23 pm
I wouldn't be surprised to know if some big pharma has already purchased the rights on this research or whoever have funded this research in the first place, has now put some sorta restrictions to further getting it out after the initial publications?
It's all about money.
cut the BS KL
update: I just got diagnosed with hiatal hernia, total cost for examination: €80, so long €700-for-a-useless-visit-clinic!
dunno dude, did you have consistent heart burn, Chest pain and Abdominal pains? I think these are the basic symptoms of Hiatal Hernia.
Either way, I hope this cures your BB problem for good. This will be an awesome news.
What did you do to get it diagnosed? Any specific specialty physician or surgeon who looked into it?
This video says it has 4 types.
https://www.youtube.com/watch?v=Dvxb4AI_KHo
Re: Gene mutation causes chronic bad breath
Posted: Sun Jul 12, 2020 4:03 pm
by petalpetal
i have contacted prof wevers directly a couple of times over the past months and his college has also forwarded my email to him, but no reply. hmmm
hoping he will reply soon to see if can get tested through this team