My son thinks his odor level has rel... 
mpdela
16 y
4,689
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Hello everyone,
I was a little sad yesterday because my son came home from work with alot of anxiety about having bad breath. He was close to having a panic attack.
I think that his emotional state may very well be contributing to him having A LITTLE halitosis, and you can only smell it yesterday if he talks at a very close proximity to you. I think what has happened to him is that when he had the extreme odor that would fill a room with just his presence, he didn't smell it at all because it was all inside of him. Now that he doesn't have a high level of smelly toxins in his gut and blood, at least not to the degree he had before, he can now smell his own breath just breathing through his nose, even if other people can't smell anything.
He said that his goal is to not have any odor whatsoever, and that he won't give up the fight until he achieves this goal. I agreed with his goal and efforts, but I did point out that many people lead normal healthy lives in good relationships and in their jobs with just a little bad breath.
I pointed out to him that his father, brother, and I think that he has progressed tremendously with this NIH regimen for TMAU, but that there are 2 things he has not done exactly as they recommend.First, he has not done the antibiotic treatment exactly as prescribed even though his doctor has already given him the prescription for it. NIH recommends neomycin as the most effective antibiotic for TMAU, and he can't just take one or 2 doses and stop the treatment because that will only make the bacteria stronger and more resistant to antibiotics in the future. He has to do the complete treatment for 7 days as prescribed.
Second, he's been using dulcolax and/or castor oil as a laxative, and NIH recommends enulose (lactulose solution) as the best laxative for TMAU because it not only treats constipation, but it also treats encephalopathy (not that he has encephalopathy, thank God) by reducing (smelly) blood ammonia levels. I think that this blood ammonia caused by TMAU and poor intestinal cleansing may be contributing to his halitosis. So, he went to the pharmacy last night and purchased Neomycin and Enulose. I'm certain this will help him eliminate the remnants of his odor.So... this episode led me to take note of how just about everyone in this forum says that they believe their odor increases with the cleansing process.
***I WONDER IF IT'S THAT THE ODOR INCREASES OR THAT YOUR SENSE OF SMELL RETURNS AFTER YOUR SYSTEM HAS SIGNIFICANTLY CLEANSED.***
Unfortunately, this is when some people stop their regimen, and go back to the way they were. I think that it is essential that you have a reliable source to give you feedback on the degree of your odor. Use a scale of 1 to 10 (10 being the worse possible), and ask them to categorize the degree of your odor.
I would say that my son's odor used to be a definitely 10+ in the past before doing the NIH treatment plan, but yesterday it may have been at a 2. He didn't smell the 10+, but he smelled the 2. At a level 2, as long as he hadn't stood too close to people when he spoke, no one would have noticed it at all.
Hope this helps everyone who struggles with their cleansing process.
mpdela
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- Re: My son thinks his odor level has... #94042
16 y
3,932
MoreThis is a reply to # 1,145,870Advertisement
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”I was surprised by the effectiveness of it, and I wasn’t hungry.”
I think you are right about the good/bad point. Good reactions and bad reactions seem to make me smell. The worst part is, I can't be sure what is good or bad. Probiotics make me smell, for example. So do Antibiotics . Die-off makes me smell (which I presume is good). But garlic makes me smell (which I associate with a possible sulfur-eating bacteria issue. Garlic is also a big user of the FMO3 enzyme, I think). The question is, are they good or bad reactions ? I think its a bit like cleaning out a pool of clear water with mud at the bottom. Once you try to clear it up, the water becomes muddy. I couldn't say this is a universal rule though. At the moment I don't think it is.
Hopefully this is one of the riddles we will solve over time.- Re: My son thinks his odor level has... mpdela
16 y
4,069
This is a reply to # 1,146,685Hi 94042,
What indicator do you use to determine whether you smell?
rhaps when you are emitting the strongest odor is precisely when you don't smell it, and as your body is getting cleaner, then you do smell it. In other words, when your odor is a 10 (most smelly), your sense of smell is so overwhelmed and the odor is so familiar to you, that you can't detect it (as opposed to a different scent in its absence). But when your odor ist at 2, you can probably smell it intermittently with fresh air, and then you do smell it.
It's always good to have feedback from a reliable source. Especially one that can use the scale of 1 to 10 (or any other scale) to measure your odor.
mpdela- Re: My son thinks his odor level has... #94042
16 y
3,863
This is a reply to # 1,146,828Advertisement
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”I was surprised by the effectiveness of it, and I wasn’t hungry.”
those are good points. I was judging it myself :) Most of us, whether its (likely) family or partners who would be reliable sources, can't be smelt by those people. I think this is another of these sad parts of the problem; if we had someone who could be a 'reliable source', we could track our situation.
That said, in the BBC TMAU documentary, the mother could smell her young son, so it looks to me like some kin can smell the tma smell, for example. I can smell of fish very occasionally (through my skin, e.g. on the akins diet), but I was currently thinking that since I smell it, it can't be that common a part of my odor. Which sort of ties in with the point you were making regards smelling ability too. I had never thought of the scenario it could be my nose detecting it better. I don't think this is the case for me, but it might be.
It would be great if there was some sort of home detection device. Maybe ph paper would be some use for tma detection, but I was mostly in the normal range, I think.- Re: My son thinks his odor level has... jessecursed
16 y
3,788
This is a reply to # 1,146,947I agree, I have had the same problem in that people living with me tend to not smell my odor and therefore conclude that I have it all in my head! The reality is that they are use to it and therefore fail to sense the mal-odor. My older sister who has a very strong sense of smell even was unable to smell my odor when she lived with us.
Now here comes the proof for the above statements. My older sister recently moved out to another state (job related) and so she is only able to visit once a month. Every single time she visits us, she cover her nose when sitting near me (all the time 100%), my parents have approached her to ask if she smells any odor coming from me, but she lies and say no not at all! I can’t believe this she is trying to me nice to me but indirectly she is making be go crazy :-(...
Also wanted to add this in that when ever I pass a odorous area (example indoors (bathroom) or outdoors (garbage truck)) MY BODY IS ABLE TO KEEP THAT SCENT WITH ME FOR THE WHOLE DAY!!! Making my problem even worse...I know it sounds crazy but this TMAU thing is a bizarre disease.
Jesse
- Re: My son thinks his odor level has... jessecursed
16 y
3,788
- Re: My son thinks his odor level has... #94042
16 y
3,863
- Re: My son thinks his odor level has... mpdela
16 y
4,069
- UPDATE on my son's odor relapsed mpdela
16 y
5,356
This is a reply to # 1,145,870Advertisement
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”I was surprised by the effectiveness of it, and I wasn’t hungry.”
Hello everyone,
About 5 days ago, I started this post, and I appreciate your feedback very much.
Well, my son started the neomycin 500 mg three times a day (dosage prescribed by his Internal Medicine doctor) 4 days ago. He had avoided taking antibiotics, since he doesn't like taking them unless absolutely necessary. However, he felt he really needed to because he wants to completely eliminate his odor to be totally odor-free.
Since the last day of his work-week was Saturday (his days off are Sundays and Mondays), he took 2 TBSP (30ml) of lactulose (dosage prescribed by his Internal Medicine doctor) on Saturday night before going to bed, and by Sunday evening (yesterday), after he had spent all day in and out of the bathroom, his odor was completely gone! We were all so happy to see that he was able to talk to each of us close to our face releasing as much air as he wanted AND THERE WAS NO ODOR!!!
Yesterday evening, once he finished having all his bowel movements, he took 60 billion Viable Probiotic Cells (acidophilus) and he's going to complete his 7-day treatment with neomycin, to make sure the bad bacteria dies off. He’ll probably have to take more probiotics, especially after he finishes the 7-day antibiotic treatment.
I don't recommend to my son or anyone else antibiotics treatment on a regular basis, but the lactulose (laxative) every once in a while as needed could help the gut not accumulate the odorous bacterial activity.
Here is where we initially got the info on how to cleanse the intestines. It’s all under http://www.genetests.org/servlet/access?db=geneclinics&site=gt&id=888... , which I understand to be a branch of the National Institute of Health (U.S.), and the University of Washington (Seattle, Washington).
Even though this website is geared toward the treatment of Trimethylaminuria, under the Management section entitled Treatment of Manifestations, it recommends a regimen for intestinal cleansing and deodorizing that has also worked on altered gut bacteria. In the section on intestinal cleansing entitled Suppression of intestinal production of trimethylamine, it recommends, “A short course of antibiotics to modulate or reduce the activity of gut microflora… Three antibiotics with different target organisms have been used: metronidazole, amoxicillin, and neomycin. Neomycin appears to be the most effective in preventing formation of trimethylamine from choline… Laxatives, such as lactulose, to decrease intestinal transit time may also reduce the amount of trimethylamine produced in the gut”. Lactulose is the recommended laxative because, “lactulose also works by reducing the absorption of ammonia from the gut”. http://www.netdoctor.co.uk/medicines/100001447.html
I also like the section entitled Use of acid soaps and body lotions. It also recommends the supplements that this forum has been talking about under the section Sequestering of trimethylamine produced in the gut, “When taken as dietary supplements, activated charcoal (750 mg twice daily for ten days) and copper chlorophyllin (60 mg three times a day after meals for three weeks) decrease the concentration of free trimethylamine in the urine”. Again, this is all referring to TMAU treatment, but the activated charcoal and copper chlorophyllin deodorizes and removes odorous toxins, so it works even if you don’t have TMAU.
If you have difficulty displaying this, then you can go the long way by going to http://www.genetests.org/ click on the GeneReviews tab, Enter Trimethylaminuria in the search box, then click on the Reviews tab, and on the left hand menu, click on Management to the section entitled Treatment Manifestations.
I do hope that this info helps people who may not have TMAU, but an altered gut bacteria issue.
mpdela
- Re: UPDATE on my son's odor relapsed microflora
10 y
2,521
This is a reply to # 1,148,938mpdela,
your son is so lucky to have such a wonderful mom like you :)
I think your idea of the odour levels being highest when we cant smell it and vice versa makes complete sense.
When you havent got reliable people to give feedback it can be so difficult to judge odour levels, so I am so grateful for your post.
I wonder if your son gets any altered taste in his mouth when his breath is odourous? Because I dont usually smell a breath odour when people cover their nose but I can sometimes taste something wrong in my mouth.
I was considering using my prescription for neomycin soon, and surfed the net for inspiration and found your post, so I suppose thats my answer! I will buy some lactulose as well, on your recommendation. Im just so annoyed I havent got anyone to give me really useful feedback to make the experience more useful to me and others here.
I hope your son finds some relief with his current protocol xxx
- Re: UPDATE on my son's odor relapsed microflora
10 y
2,521
- Re: My son thinks his odor level has... #94042
16 y
3,932
