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A potential cure (Oral Microbiota Transplant)

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Lifelongsufferer
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Posts: 60
Joined: Mon Jul 18, 2016 6:09 am

A potential cure (Oral Microbiota Transplant)

Post by Lifelongsufferer »

Hi guys, I hope you're all well (as well as can be, anyway)

You may remember I wrote a post not long ago about Oral Microbiota Transplants as a potential cure.

The post can be found here: viewtopic.php?p=58053#p58053

The scientist I spoke to had told me he wanted to do further research but had difficulty obtaining funding from the NIH.

I thought that would be the last I heard of him until I received an email from him last week. The email was as follows:

"Dear *******,

This is Alex, we communicated a couple of months ago. Today I have received another e-mail from someone suffering from halitosis, like you. I am thinking that to make our funding application even more convincing, we could refer to your story and the stories of the others, for whom this therapy may become a solution.

You mentioned that you know other people with the same condition. Would you be able to share our paper with them and ask them to write a few sentences to me briefly describing their stories?

Sincerely,
Alex"

I then contacted him again to ask how much money they need the NIH to grant them and he told me around $45,000 (that they will not be drawing a salary from), which is apparently quite cheap lol!

I truly believe this is the solution so many of us have been seeking for years, and I will do anything in my power to make this a reality for us! We don't deserve to suffer like this, and I refuse to just accept my fate and live the rest of my life afraid to leave my home and disgusted at the way my own body is betraying me. I am a 22 year old girl and I am determined to have a family and get married and hopefully continue the career I had to leave due to this affliction, so It is imperative that I find a cure.

Please contact Alex, the scientist with your stories, or you can post them here and I will send them to him on your behalf. If you have posted your story on here before then you can just comment with a link and I will send it to him.

I really believe this could help many of us and I actually feel hopeful for the first time in years.

Thanks
Lifelong x


22 UK

Tonsils/adenoids removed
FESS surgery
Visited 3+ ENTs & 2 gastros.
Diagnosed w/ SIBO (hydrogen test)
Peroxide, metronidazole and Sodium Hypochlorite all worked for 2 weeks.

FODMAP, vegan and candida diet tried. Slight improvement.
Lifelongsufferer
Junior
Posts: 60
Joined: Mon Jul 18, 2016 6:09 am

Re: Cure....

Post by Lifelongsufferer »

Alex's contact details are as follows:

Alexander E. Pozhitkov
[email protected]
22 UK

Tonsils/adenoids removed
FESS surgery
Visited 3+ ENTs & 2 gastros.
Diagnosed w/ SIBO (hydrogen test)
Peroxide, metronidazole and Sodium Hypochlorite all worked for 2 weeks.

FODMAP, vegan and candida diet tried. Slight improvement.
Attraction
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Re: Cure....

Post by Attraction »

Please avoid writing cure in the title, unless you are reporting a real, proven one. A lot of people are going to click this and waster their time given we don't know the result of this method. Get it done yourself. We will patiently await if you've actually been cured. Thanks
Lifelongsufferer
Junior
Posts: 60
Joined: Mon Jul 18, 2016 6:09 am

Re: Cure....

Post by Lifelongsufferer »

Your passive aggression bewilders me, we are in the same boat so there's no need to be so rude, but I understand how awful your life must be so i won't hold it against you.

If you'd read what I wrote you'd see I can't "get it done" because the scientist doesn't yet have the grant from the NIH in order to proceed which is why I'm asking for my fellow sufferers to assist me by sharing their stories.
22 UK

Tonsils/adenoids removed
FESS surgery
Visited 3+ ENTs & 2 gastros.
Diagnosed w/ SIBO (hydrogen test)
Peroxide, metronidazole and Sodium Hypochlorite all worked for 2 weeks.

FODMAP, vegan and candida diet tried. Slight improvement.
Attraction
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Posts: 121
Joined: Sat Aug 27, 2016 2:40 pm
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Contact:

Re: Cure....

Post by Attraction »

Lifelongsufferer wrote:Your passive aggression bewilders me, we are in the same boat so there's no need to be so rude, but I understand how awful your life must be so i won't hold it against you.

If you'd read what I wrote you'd see I can't "get it done" because the scientist doesn't yet have the grant from the NIH in order to proceed which is why I'm asking for my fellow sufferers to assist me by sharing their stories.
What I wrote is true. You don't know if this method is a cure, but your title is "Cure...." for some reason. You just want extra clicks? Why exactly?! I don't find it funny that you claim to have a cure and then you give us something else.
Dead
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Re: Cure....

Post by Dead »

Lifelongsufferer i'm with you. This sounds like something that really could cure us. Hospitals are already performing Fecal microbiota transplants to cure bacterial imbalance in the gut. If the same thing can be done to the mouth, then it's a cure. I will email my story to him.
Attraction
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Re: Cure....

Post by Attraction »

Dead wrote:Lifelongsufferer i'm with you. This sounds like something that really could cure us. Hospitals are already performing Fecal microbiota transplants to cure bacterial imbalance in the gut. If the same thing can be done to the mouth, then it's a cure. I will email my story to him.
I'm not saying this post doesn't belong here, or couldn't be a cure. I'm saying don't claim it is a cure when you haven't even tried it.
Lifelongsufferer
Junior
Posts: 60
Joined: Mon Jul 18, 2016 6:09 am

Re: Cure....

Post by Lifelongsufferer »

Attraction wrote: What I wrote is true. You don't know if this method is a cure, but your title is "Cure...." for some reason. You just want extra clicks? Why exactly?! I don't find it funny that you claim to have a cure and then you give us something else.
I truly believe that this is what we have all been searching for. Why would it be "funny"? I have suffered from this terrible affliction all of my adult life, you aren't the only one and your victim mentality is not helping anyone. If you aren't interested in this post then simply refrain from commenting further.
22 UK

Tonsils/adenoids removed
FESS surgery
Visited 3+ ENTs & 2 gastros.
Diagnosed w/ SIBO (hydrogen test)
Peroxide, metronidazole and Sodium Hypochlorite all worked for 2 weeks.

FODMAP, vegan and candida diet tried. Slight improvement.
Lifelongsufferer
Junior
Posts: 60
Joined: Mon Jul 18, 2016 6:09 am

Re: Cure....

Post by Lifelongsufferer »

Dead wrote:Lifelongsufferer i'm with you. This sounds like something that really could cure us. Hospitals are already performing Fecal microbiota transplants to cure bacterial imbalance in the gut. If the same thing can be done to the mouth, then it's a cure. I will email my story to him.
I'm glad you see where I am coming from, Dead. It was when I heard about Fecal Microbiota Transplants that I decided to search and see if I could find anything for "Orla Microbiota Transplants" and that's when I came across alex's paper.

I really think this is the cure, as I've said previously, I don't think there is a "root cause" like an infected tooth for most of us because there are people who have rotten teeth and no BB! So, if we could receive a transplant of oral bacteria from one of those people who never even gets morning breath then surely our breath could always be fresh!

I'm really excited about this, and I hope everyone will get on board. After all, they are only asking for our stories to help strengthen their case for funding and sharing your story can be cathartic in itself!
22 UK

Tonsils/adenoids removed
FESS surgery
Visited 3+ ENTs & 2 gastros.
Diagnosed w/ SIBO (hydrogen test)
Peroxide, metronidazole and Sodium Hypochlorite all worked for 2 weeks.

FODMAP, vegan and candida diet tried. Slight improvement.
StillHoping
Sheriff
Posts: 441
Joined: Tue May 21, 2013 4:29 am
Location: Calgary, AB
Canada

Re: Cure....

Post by StillHoping »

Lifelongsufferer, this is a great idea and atleast worth a shot! I hope the members/visitors on this forum participate. I have already believe this is the main issue with the BB problem, soo its great seeing some researchers that are sympathetic and willing to help us.

Can you please send them my "story". Although I don't have much to say - I have had BB for 19 years [since I was 10 years old]. My father and one sibling [who believe he is now cured after a change in diet] also have BB - I believe we we inherited it from our father; maybe not genetically but for sure in the build up of our mouth/ tongue surface. I am more susceptible to dry mouth because of my rough tongue surface. My BB is usually a sour smell/takes on odour of any food eaten to create this weird foul odour, can resemble the smell of rotting meat when very bad. I believe I have tried literally EVERY single thing/product suggested on this forum lol
2012: Wisdoms remov
2015: Tonsils+adenoids remov
2017: TMAU1 & 2 Negative
2019: Internal biopsies normal
2019: Completed SIBO treatment
2020: DigEnzymes help but side effects
+ low fodmap/GERD diet also help
Lifelongsufferer
Junior
Posts: 60
Joined: Mon Jul 18, 2016 6:09 am

Re: Cure....

Post by Lifelongsufferer »

Can you please send them my "story". Although I don't have much to say - I have had BB for 19 years [since I was 10 years old]. My father and one sibling [who believe he is now cured after a change in diet] also have BB - I believe we we inherited it from our father; maybe not genetically but for sure in the build up of our mouth/ tongue surface. I am more susceptible to dry mouth because of my rough tongue surface. My BB is usually a sour smell/takes on odour of any food eaten to create this weird foul odour, can resemble the smell of rotting meat when very bad. I believe I have tried literally EVERY single thing/product suggested on this forum lol
Hey StillHoping!

Glad you're on board :)

I feel exactly the same way, I have tried so many things including a tonsillectomy, FESS surgery, numerous courses of antibiotics, dietary changes, countless visits to different dentists, visits to different ENTs. My oral hygiene is perfect and I've had this problem for such a long time, since I was about 11 I think, that I am sure it is some kind of bacterial imbalance which would explain why it just comes back or gets worse after antibiotics!

Could you list the different methods you've tried, and also tell me how this condition has affected your life?

I personally had such a huge loss of confidence that I've had to quit a job that paid very good money to start working for minimum wage. I have also had people on the tube cover their nose and look at me in disgust which makes me feel like a disgusting piece of shit. One woman asked me if I could brush my teeth before getting on the train! If only she knew I'd rinsed my mouth with bleach an hour before. Gum doesn't mask the smell at all, and it is literally room filling, the "who farted" comments are relentless and I have often lied and said I had because the embarrassment of farting doesn't compare to the smell of fecal matter coming from my mouth and nose. I have almost passed out on the rare occasions I have ventured out from holding my breath simply when people are within 2 foot.

I hope if we all share our similar stories, then maybe someone somewhere will take us seriously for once. Like you said, it's worth a shot! Perhaps if it was known just how debilitating this condition is and just how many people suffer then we could finally get closer to a cure. Who knows?
22 UK

Tonsils/adenoids removed
FESS surgery
Visited 3+ ENTs & 2 gastros.
Diagnosed w/ SIBO (hydrogen test)
Peroxide, metronidazole and Sodium Hypochlorite all worked for 2 weeks.

FODMAP, vegan and candida diet tried. Slight improvement.
StillHoping
Sheriff
Posts: 441
Joined: Tue May 21, 2013 4:29 am
Location: Calgary, AB
Canada

Re: Cure....

Post by StillHoping »

I totally get what you mean about the job thing; sometimes I wonder where I could've been if I didn't have this problem? I try to stick to jobs that do not require face to face interactions with clients. I'm always quiet and don't socialize with co-workers, they all probably just think I'm rude! But I would rather people think Im a bitch than deal with the nose rubs, looks of disgusts, offers for gum etc. I'm pretty good at my career and respected by supervisors but ofcourse it takes more than that to become successful - its basically impossible if you have bb.

The depression pretty much comes in waves, sometimes I'm like whatever it is what it is - then other times I don't even want to get out of bed. There have definitely been some suicidal points in my life. Although now, I'm trying to be more accepting that this could be something I need to deal with for the rest of my life and I just need to accept it. When I was younger I would get bullied about it at school, Id just chew gum and mints as much as I was able to until I was 21, then I discovered therabreath [I am in no way promoting this whatsoever!!]. Therabreath actually worked pretty good for me for about 3 years until I moved to another city for a better work opportunity and then the therabreath stopped working abruptly and the bb came back with a vengeance - thats when I joined this forum. To this day, I can't figure out why that happened - the only thing I can guess is that the new city has a much drier climate, to the point where people frequently get nose bleeds. Soo maybe thats when the pnd began and somewhow just made my body symptoms worse.

After joining this forum, I tried literally anything and everything lol honestly the list is too long and I can't remember it all. But basically you name it; Ive done it! I am one of those ppl who has been willing to try any home made remedies / buy new products: forever mint, water pik, peroxide, deworming, lemon water, zinc/ vitamins, probiotics etc etc etc. I think I was initially only Type 1 BB but somehow developed the other Types over the years, through horrible eating habits and alcohol abuse, and possibly the climate that I now live in.

As of right now, my goal for 2017 - is to focus on finding a natural solution for the dry mouth & pnd issues, changing my diet and sticking to it. Also, Ive been on the waitlist for TMAU testing for a long time, the test has finally been booked for next week. It will be interesting to see what the outcome of that is.
2012: Wisdoms remov
2015: Tonsils+adenoids remov
2017: TMAU1 & 2 Negative
2019: Internal biopsies normal
2019: Completed SIBO treatment
2020: DigEnzymes help but side effects
+ low fodmap/GERD diet also help
Attraction
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Posts: 121
Joined: Sat Aug 27, 2016 2:40 pm
Gender:
Contact:

Re: Cure....

Post by Attraction »

StillHoping wrote:I totally get what you mean about the job thing; sometimes I wonder where I could've been if I didn't have this problem? I try to stick to jobs that do not require face to face interactions with clients. I'm always quiet and don't socialize with co-workers, they all probably just think I'm rude! But I would rather people think Im a bitch than deal with the nose rubs, looks of disgusts, offers for gum etc. I'm pretty good at my career and respected by supervisors but ofcourse it takes more than that to become successful - its basically impossible if you have bb.

The depression pretty much comes in waves, sometimes I'm like whatever it is what it is - then other times I don't even want to get out of bed. There have definitely been some suicidal points in my life. Although now, I'm trying to be more accepting that this could be something I need to deal with for the rest of my life and I just need to accept it. When I was younger I would get bullied about it at school, Id just chew gum and mints as much as I was able to until I was 21, then I discovered therabreath [I am in no way promoting this whatsoever!!]. Therabreath actually worked pretty good for me for about 3 years until I moved to another city for a better work opportunity and then the therabreath stopped working abruptly and the bb came back with a vengeance - thats when I joined this forum. To this day, I can't figure out why that happened - the only thing I can guess is that the new city has a much drier climate, to the point where people frequently get nose bleeds. Soo maybe thats when the pnd began and somewhow just made my body symptoms worse.

After joining this forum, I tried literally anything and everything lol honestly the list is too long and I can't remember it all. But basically you name it; Ive done it! I am one of those ppl who has been willing to try any home made remedies / buy new products: forever mint, water pik, peroxide, deworming, lemon water, zinc/ vitamins, probiotics etc etc etc. I think I was initially only Type 1 BB but somehow developed the other Types over the years, through horrible eating habits and alcohol abuse, and possibly the climate that I now live in.

As of right now, my goal for 2017 - is to focus on finding a natural solution for the dry mouth & pnd issues, changing my diet and sticking to it. Also, Ive been on the waitlist for TMAU testing for a long time, the test has finally been booked for next week. It will be interesting to see what the outcome of that is.
Get off this fake cure thread and checkout the 2 proven cures I just posted. Water fasting has significantly improved my bb. When there is no food for bacteria to eat, they disappear. My tonsils used to smell 24/7 and now they don't smell AT ALL. I used to get sinus bb and now it's gone. My tongue is still white, but 20-30% less than before. I still have bb, but my oral hygiene has been absolutely terrible (I am staying inside during my fast, so I don't really do any oral hygiene unless i'm going out).

I went out a couple of days ago and used bleach mouthwash (as well as brushing, etc. of course) and to my surprise had 0 bb for about 20 minutes. That has NEVER happened before. After 20 minutes, it came back and I got a reaction.

If my oral hygiene was consistent (bleach daily, etc.) it is more likely the bb would be even less.

Finally, I also recently posted a REAL CURE for TMAU which actually works for me and has worked for many people. I HAD TMAU, and now it's gone!

Regards,
Attraction

P.S. This thread may very well be a cure, but it isn't proven. Jimmy, if you read this I suggest you change the title to something relevant. i.e. Oral Microbiota Transplant, or of that nature.
Lifelongsufferer
Junior
Posts: 60
Joined: Mon Jul 18, 2016 6:09 am

Re: Cure....

Post by Lifelongsufferer »

Thanks for sharing StillHoping, your story was hard to read because I can relate to it so much.

I am now at a point where I too am beginning to accept that this is something I will need to deal with for the rest of my life.

I will send this over to Alex now, and hope that others have done the same too. Feel free to PM me if you'd like to chat!

Lifelong
22 UK

Tonsils/adenoids removed
FESS surgery
Visited 3+ ENTs & 2 gastros.
Diagnosed w/ SIBO (hydrogen test)
Peroxide, metronidazole and Sodium Hypochlorite all worked for 2 weeks.

FODMAP, vegan and candida diet tried. Slight improvement.
Lifelongsufferer
Junior
Posts: 60
Joined: Mon Jul 18, 2016 6:09 am

Re: Cure....

Post by Lifelongsufferer »

Attraction wrote: Get off this fake cure thread and checkout the 2 proven cures I just posted. Water fasting has significantly improved my bb. When there is no food for bacteria to eat, they disappear. My tonsils used to smell 24/7 and now they don't smell AT ALL. I used to get sinus bb and now it's gone. My tongue is still white, but 20-30% less than before. I still have bb, but my oral hygiene has been absolutely terrible (I am staying inside during my fast, so I don't really do any oral hygiene unless i'm going out).

I went out a couple of days ago and used bleach mouthwash (as well as brushing, etc. of course) and to my surprise had 0 bb for about 20 minutes. That has NEVER happened before. After 20 minutes, it came back and I got a reaction.

If my oral hygiene was consistent (bleach daily, etc.) it is more likely the bb would be even less.
.
So, Attraction, you've not eaten for 14(?) days and you still have bad breath but if you rinse your mouth with bleach it's gone for 20 minutes? 20 minutes, seriously? You've gone a whole two weeks without food just to get 20 minutes of fresh breath...

What would you suggest we all do, not eat for the rest of our lives? I have tried to be pleasant but you are becoming intolerable. Please refrain from posting on this thread.
22 UK

Tonsils/adenoids removed
FESS surgery
Visited 3+ ENTs & 2 gastros.
Diagnosed w/ SIBO (hydrogen test)
Peroxide, metronidazole and Sodium Hypochlorite all worked for 2 weeks.

FODMAP, vegan and candida diet tried. Slight improvement.
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