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my background (long and detailed)

Posted: Mon Apr 09, 2012 6:01 pm
by LisaLisa
I realize it seemed very suspicious of me to suddenly pop up on the Lufenuron thread, so I thought I'd do an intro post. I don't like to give out very much personal info on the Internet, so sorry if I don't give many details about my life.

I'm in my early 30s, and have had BB for around 15 years. It seems to have gotten progressively worse through the years. Currently, it is constant, severe, room-filling odor which comes from my mouth and nose. I have many smells, such as skunk, burning rubber, fecal, extreme garlic, rotten food, cigar, barn, car exhaust, and some I just can't describe. I can't normally smell my breath, but I catch whiffs of it through backdraft, or sometimes when I rub my nose, and when I wake up in the morning sometimes my bedroom smells bad. I can also taste my breath on occasion, especially when I put a mint in my mouth. When the mint is in my mouth my tongue tastes bad at first. I don't have a heavy coating on my tongue (but I still scrape it). Mints and gum don't seem to hide my BB, but I still use them to feel fresher.

I've tried many different diets (everything from low-carb to raw) and none seem to have a positive effect. However, if I eat crappy processed foods full of starch or sugar it makes my breath worse. I've tried a lot of drugs, mainly antibiotics. No antibiotic, either prescribed or ordered online, has ever had an effect on my BB. When KeepTrying was around I tried his anitbiotic/antifungal therapy, but it did nothing. I went on h.pylori triple-therapy treatment even though I twice tested negative for it. I've also tried many alternative/natural drugs (MMS, colloidal silver, charcoal, chlorophyll, probiotics, various vitamins, etc) as well as a ton of "fresh breath" products.

I've always had good oral hygiene. I saw a dentist about 6 months ago after not seeing one for several years, and he said my teeth and gums were nearly perfect, way better than most of his other patients. I've had my wisdom teeth and tonsils/adenoids removed. I have acid reflux and gasto-intestinal problems, but no pnd or anything else. I'm on a PPI for the reflux. I've been to multiple dentists, a periodontist, my GP, a couple ENTs, and a GI doc. No help from any of them.

Reactions: I've had lots. the usual nose-rubbing and sniffing (why do they sniff if it smells so damn bad????), disgusted faces, covering noses, stepping away. I've never had anyone tell me to my face, but I definitely hear them talking about me. "What smells in here?" "Do you think she knows her breath smells?" "Phew, that lady stinks". "Who farted?' "It smells like --insert various odor-- in here".

I guess that's about it. Now I'm just waiting for the Lufenuron to arrive, and if that doesn't work I don't know what else I can do.

Lisa

Posted: Tue Apr 10, 2012 3:40 pm
by Phantasist
From what you describe, the bad breath seems to be related to the acid reflux, the gastro-intestinal problems or both. The Lufenuron would only help if you have Candida Albicans in your system. If you do have an overgrowth of Candida, it's probably in your small intestine or colon. But you did mention that you have been to a gastroenterologist, and I would think that any digestive problems should have been detected.

Posted: Tue Apr 10, 2012 6:16 pm
by LisaLisa
Hi Phantasist. I agree that my reflux and GI issues are likely suspects.

Regarding reflux: my BB appeared years before any reflux symptoms did. Also, the odor has become progressively worse, but as far as I can tell my reflux hasn't progressed at all. But mainly, I don't want to accept that reflux is the cause because that would leave me potentially doomed to BB for the rest of my life, and I don't want to live the rest of my life this way.

As far as the GI issues: the gastroenterologist I saw was basically a giant d-bag. The reason I had the appointment was because despite the PPI, I was getting breakthrough heartburn and was concerned about esophageal erosion (which he shrugged off as impossible since I was on a PPI). During the visit he asked about my bathroom habits (urgency, 2-3 bouts of diarrhea each morning), and again brushed it off as "probably" just mild IBS. He didn't feel the need to run any tests or prescribe anything. I didn't bring up my BB concerns because he was being such an ass and I just wanted out of there. I'd like to see another GI doc but am currently uninsured.

I have no reason to believe I have an issue with Candida. Yes, I can check off most of the symptoms on the Candida quizes, but so can most people. What can I say; I'm desperate, tired, and vulnerable to blind hope. The worst thing that could come out of experimenting with Lufenuron is that I rule out Candida as a cause.

Posted: Tue Apr 10, 2012 6:30 pm
by Gooner
Someone will correct me if this is wrong but didn't a lady post on here that she was cured following a hysterectomy?

You seem to have ruled out the common causes so looking at something like a hormonal imbalance might be a worthwhile exercise. Just a thought.

Re: my background (long and detailed)

Posted: Tue Apr 10, 2012 6:36 pm
by halitosisux
LisaLisa wrote:it is constant, severe, room-filling odor which comes from my mouth and nose. I have many smells, such as skunk, burning rubber, fecal, extreme garlic, rotten food, cigar, barn, car exhaust, and some I just can't describe.
Have you tested for TMAU?
These are common odours associated with TMAU and secondary acquired TMAU.

Posted: Tue Apr 10, 2012 6:38 pm
by LisaLisa
Hi Gooner. I did read that thread. I think it's doubtful that it's hormonal for me, because I had both ovaries removed due to lady problems when I was 30. I will look into hormones if Lufenuron doesn't help. As I recall the DIM supps were fairly expensive though?

Posted: Tue Apr 10, 2012 6:46 pm
by LisaLisa
Halitosisux,

No, I haven't tested for TMAU. I did try a low-choline diet along with the recommended supplements for a couple months, but had no change. I would very much like to be tested. The doctor I see now is at a low-cost community health clinic. I guess it's worth asking her if she can run the test, but I will need to save up for a few months because from what I understand it's expensive?

Thanks for your suggestion.

Posted: Tue Apr 10, 2012 8:21 pm
by halitosisux
Lisa, the thing is, even people who are confirmed with a type of TMAU, can find that they are unable to make much difference with supplements and low-choline diet. Have you tried taking a high choline diet or taking choline supplements to see whether they make your problem worse?

If they make it worse then that's a good indication that it may be TMAU related.

Posted: Thu Apr 12, 2012 8:03 pm
by Susie
Lisa,
I'm pretty sure it's the reflux causing at least part of it. I have lots of reflux and I get most of the same smells you listed. I did have bb before the reflux, but only a fecal smell not all the others and as soon as the reflux started that's when I got the other smells and that's when it started traveling a great distance.

I sent you a pm.

Posted: Fri Apr 13, 2012 9:18 pm
by LisaLisa
Sorry I had to take a break for a few days when I saw all the negative remarks about Lufenuron coming in. (By the way I received mine today and just took my first dose)

Susie: really??? I've never met anyone with the same variety of smells as me. I did not get your PM, by the way. :(

Hali: I did some reading on TMAU and decided not to pay for a test. Since the odor is released through saliva, sweat and urine, I don't see how I can fill a room with my mouth closed. Plus I don't see the point, because even if I have it, it's kind of like a death(breath) sentence, isn't it? I may try a choline load at a later time, just to see what happens.

Posted: Sat Apr 14, 2012 12:15 am
by Susie
Hey Hali,
Can you help me???? I have pm to send and they just sit in my outbox and won't send? Do you know what is wrong?

Posted: Sat Apr 14, 2012 12:16 am
by Susie
Lisa,
I'm trying to send that pm....please let me know if you get it.

Posted: Sat Apr 14, 2012 8:45 am
by halitosisux
Susie, I get confused at times with the message system on here. I'm not quite sure how it all works, but I think the message gets sent eventually, as long as it's gone thru into one of the messaging outboxes, sent-box etc.

My box says I have 65531 messages unread :-k

Posted: Sat Apr 14, 2012 8:57 am
by halitosisux
Lisa, with TMAU the odour is also released from the gas exhanges in the lungs from the bloodstream.

Personally, I'd rather know if I had TMAU than not know it. Gene therapy, Genetically modified bacteria, gut chemical absorbers and neutralizers - there's loads of ways this problem can eventually be combatted. And in the meantime many people already find ways to reduce and control the odours, with diet and supplements and gut flora control.

Posted: Sat Apr 14, 2012 12:44 pm
by LisaLisa
Susie: I got your PM and replied, thank you!

Hali: Thank you for the clarification. It was late at night and I must have been reading at all the wrong sites. They all seemed to say saliva, sweat and urine only. Do you have a website or two that you'd recommend for accurate, up-to-date info on TMAU and similar disorders? Thanks!