Gene mutation causes chronic bad breath

[KL123]

Yes I'm going to email them once again as I've to know if all these are mandatory or before the SELENBP1.

Reply:

Thank you for your message.

The Oral Chroma is performed during a halitosis consultation. With this consultation the cause of the halitosis (bad breath) will be traced.

It's not posible to do the Oral Chromeor dna test without a consultation.

So it's about US$700 to do the test.
Can you ask them how to begin? Do we need make an appointment to see them in Netherlands? Is there any other cost of a physician fee or any related cost?

[mauricio]

So it's about US$700 to do the test.
Can you ask them how to begin? Do we need make an appointment to see them in Netherlands? Is there any other cost of a physician fee or any related cost?

might be lower if not all tests are necessary.
yes, you need an appointment; you can book via email or phone. there shouldn't be any other costs such as physician fee.

[tired3826]

I want whatever kind of nasal+oral bb y'all have to where you think you can survive an 11+ hour flight from the US to Amsterdam. They seriously landed a plane and threw a homeless man off for BODY ODOR. Just imagine all the breaths you take in a second in recycled airplane air. Maybe if you fly business-class...

Just search for the best research hospital in your area or in the biggest city in your state/country. Every state has a major university; every state has a public medical school that doctors attend. And on the off chance that you live in like the one state that doesn't, I promise you the state next to it does.

Mine is $1600. I could shop around, but I hate driving, and they are 20 min away. You know the gene you're looking for; I find it better to ask doctors for general testing than to go in for one specific thing. They'll think you're crazy. Also, having a full record of all genes on paper from a legitimate university hospital in the US will be a great baseline for all future testing and research efforts in your personal quest to be bb-free, and for all diseases. Those are records that everyone would readily accept.

I read about those guys in the Netherlands; they are amazing for doing this work, but they don't have a cure, so what's the point in going SPECIFICALLY to them. I don't need any "oral chroma" tests to confirm that I actually have bb. Just ask the guy in the cubicle next to me.

[Jimi Stein]

yes what is the point....

[KL123]

yes what is the point....

Obviously, there is a good chance that one may find a direction and perhaps focus his/her attention, time, money and resources on this avenue only?

Right now, most of us are totally lost as to exactly what the F is causing it? We are looking into every direction to see a glimpse of hope.

What a freaking curse !

[mauricio]

I read about those guys in the Netherlands; they are amazing for doing this work, but they don't have a cure, so what's the point in going SPECIFICALLY to them. I don't need any "oral chroma" tests to confirm that I actually have bb. Just ask the guy in the cubicle next to me.

This isn't about oral chroma, of course there's other clinics that have that instrument, this is about having us tested for SELENBP1, not something very easy to find where I live, I can guarantee you that. In fact, as I've already pointed out, my symptoms fit more a GERD problem that this dna issue.
At this moment I've literally my esophagus, upper throat and tongue on fire, in no part of those research papers I've read about SELENBP1 patients experiencing this issue of mine. As KL I'm totally lost as to what's the cause, now more than ever as I never experienced this burning thing before. I'd happily fast for 10-15 days but I've to work now so it's not possible. I'm trying to eat only fruit and I'm on day 2, hope this problem is going to subside soon as it's becoming unbearable.

[mauricio]

So after a couple of days on OJ the burning has subsided a lot, still present tho. However today I had a melon and of course it got stuck in my throat.
This really seem to me like a case of Eosinophilic Esophagitis/Schatzki's Ring(thanks to who posted a video about it in here) rather than SELENBP1.

[Thomas]

you are looking too far. indeed it can be an esophagus problem but it can be treated and no need for surgery

[mauricio]

Today I had to eat solid cooked food as I was just feeling too weak at work, I'm really feeling like s*it now. And this was only after 3 days on some OJ and melon, can't imagine what a 40 days fast feels like....
@Thomas
I think a long enough fast could fix my issue, problem is, aside from the cost, the after-fast cause I haven't been able to keep up with a veg raw diet tho I've never had a high power blender nor a juicer which I think can help a lot.

[Jimi Stein]

raw food will not work if you do not eat it 100% all the time....and almost nobody accomplishes that....better stay with vegan.....at least you will get improvement and you will not feel hungry

[petalpetal]

If know the clinic info, I can contact them and put it in my schedule in 2020 to visit Holland and visit the clinic to get the testing done.

Sorry I thought I had linked it before, here's the link: https://www.kvpa.nl/
I'm yet to receive a reply to my message tbh, I'll email them once again in a few days as it's likely they were on a break for Xmas/NYE.

what did you message them? i want to contact them to see if i can be tested, but it seems so random to contact them, they look like another 'breath clinic' - not sure what to ask.

[petalpetal]

mauricio wrote: ↑Thu Jan 02, 2020 3:13 am
KL123 wrote: ↑Wed Jan 01, 2020 2:56 am

If know the clinic info, I can contact them and put it in my schedule in 2020 to visit Holland and visit the clinic to get the testing done.
Sorry I thought I had linked it before, here's the link: https://www.kvpa.nl/
I'm yet to receive a reply to my message tbh, I'll email them once again in a few days as it's likely they were on a break for Xmas/NYE.
what did you message them? i want to contact them to see if i can be tested, but it seems so random to contact them, they look like another 'breath clinic' - not sure what to ask.

[mauricio]

The clinic has the university professor who worked on the paper doing the test, in that it seems rather different than your usual breath clinic, I mean they have to perform the dna test after all. I've read you live in UK so this isn't going to be very expensive at all. What do you mean not sure what to ask, if you are committed you book a visit, that's all. I just asked about the costs, nothing strange, that's what they do there.

[KL123]

This isn't about oral chroma, of course there's other clinics that have that instrument, this is about having us tested for SELENBP1, not something very easy to find where I live, I can guarantee you that. In fact, as I've already pointed out, my symptoms fit more a GERD problem that this dna issue.
At this moment I've literally my esophagus, upper throat and tongue on fire, in no part of those research papers I've read about SELENBP1 patients experiencing this issue of mine. As KL I'm totally lost as to what's the cause, now more than ever as I never experienced this burning thing before. I'd happily fast for 10-15 days but I've to work now so it's not possible. I'm trying to eat only fruit and I'm on day 2, hope this problem is going to subside soon as it's becoming unbearable.

Obviously you might have done your research and I am no doctor but this condition seems somewhat familiar to me as one my family members had these symptoms. The doctors tried to tackle it as acid reflux. And from what I remember, this is the protocol that was prescribed. Over the counter Nexium capsules. Once in the morning on empty stomach with a full glass of water and no foods for at least hour. This was presrcibed for 14 days straight.

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.

[KL123]

This isn't about oral chroma, of course there's other clinics that have that instrument, this is about having us tested for SELENBP1, not something very easy to find where I live, I can guarantee you that. In fact, as I've already pointed out, my symptoms fit more a GERD problem that this dna issue.
At this moment I've literally my esophagus, upper throat and tongue on fire, in no part of those research papers I've read about SELENBP1 patients experiencing this issue of mine. As KL I'm totally lost as to what's the cause, now more than ever as I never experienced this burning thing before. I'd happily fast for 10-15 days but I've to work now so it's not possible. I'm trying to eat only fruit and I'm on day 2, hope this problem is going to subside soon as it's becoming unbearable.

Obviously you might have done your research and I am no doctor but this condition seems somewhat familiar to me as one my family members had these symptoms. The doctors tried to tackle it as acid reflux. And from what I remember, this is the protocol that was prescribed. Over the counter Nexium capsules. Once in the morning on empty stomach with a full glass of water and no foods for at least hour. This was presrcibed for 14 days straight.

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.

I think when I talk about SELENBP1, I don't really intended to diagnose anyone or enforce this cause of BB on other members. And even if I did it, it must've been unintentional.
My personal fixation on SELENBP1 is based on the reason that the patient involved into this research had all the classical symptoms that I had. And one of the major ones is, immediate family members also suffer from BB.
And as I said, we have it in my siblings and then I also passed it on to my children. And personally, I got it from my father.

I think almost no one in this board (or very few members) are this unfortunate to have this in their family, so it's quite likely that their cause is something other than SELENBP1, like yourself. And I am always interested to listen the experience of others.