Intermittent fecal/sulfur breath odor

Posted by pbleonar @pbleonar, Jun 8, 2017

After scouring the web, I’m certain I’m not the only person with this problem, and not the only person who’s been told they were imagining it. Anyway, the issue is I have intermittent odors when I talk (yes, I’ve been to the dentist 10+ times– all say my oral hygiene is on point and xrays and inspections showed nothing). The only time it’s practically non-existent is when I eat an unhealthily low-carb diet. Like others online, I’ve had CT scans, Barium swallows, endosocopy/colonoscopy, screening for parasites (getting one more from an IDS before crossing that off my list). All showed up negative. I tested positive for SIBO, but after researching that for the past 3 years, I’m certain SIBO is more of a symptom than a primary causal problem. Furthermore, even when I treated SIBO with heavy antibiotics, it did absolutely nothing for my breath– and yes I was cleared of SIBO after a couple rounds of work. yet, the moment I eat carbs, I still get a “did someone just s*it themselves?” comment.

I guess what I’m getting at is I’m tired of doctors just saying it’s IBS and SIBO and then proceeding to do zero investigating afterwards. I want to get down to the root cause of this, but most doctors are either too apathetic or too incompetent to do anything. Are there any researchers who specialize in studying and diagnosing hard to find problems in the GI tract? Between the 3 GI docs, 2 ENTs, 2 NDs and 1 IDS, I just can’t take normal doctors anymore. I want my life back and I want a specific root cause so I can work on progressing from there.

Further notes: Diarrhea actually cleared up when I ate junk food and I had zero bloating, albeit the odor remained.

Xifaxan and neomycin did nothing for the odor, nor did the elemental diet. I actually think the elemental diet made the smell as bad or
worse than before.

*******Nitazoxanide********** worked wonders for the month I was on it. Solid stools even with foods that normally cause my ibs to flare up.
It’s exactly the reason I felt there was more going on to everything than just SIBO and IBS.

Please try oil of oregano, grapefruit seed oil, zymex ll & make sure to take probiotic on empty stomach right before bed. I can't stress enough how much these could help you. If you see a functional med dr or natural path dr they probably really can help you.

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I saw a new GI in March. Well, I actually spoke with the nurse practitioner and the doctor came in for a couple of minutes and diagnosed my problem as esophageal spasms rather than GERD. So off with the acid reflux meds and onto Amitriptyline to stop the spasms. I've been on the meds for about 7 weeks and once again, disappointment as I smell the fart odor here and there. Even after 15 years, I look around to see if it's someone else, car fumes and one of my cats farting, but nope, rotten egg odor is coming from me.

I volunteer and yesterday I was helping out a woman and her father. Talked with them for a couple of hours and everything was going along normally. Then all of sudden as I was talking, they both looked down and the father stepped away from me. I didn't smell the odor this time, but I knew, yep, another intermittent escape of noxious odor.

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I have this same exact problem. I've been told I smell like rotten eggs, sewage and poop. It is socially crippling. There are certain things that make it worse, for example, if I have an alcoholic drink, eat beans/hummus, bananas, chocolate, fried foods or drink lemon water and certain teas. I would say the alcoholic drinks are the worst for me – after 2 minutes of consuming a drink I emit the odor and it's just continuous from there (with several comments of "who farted").

Another odd thing is when I have a cold or sinus infection, the smell is absolutely horrendous….it fills a room and people can smell me from many feet away.

The crazy thing about all of this is that I can rarely smell it. There was a time when I went back in my car after being out of it for a couple of minutes and I smelled it then.

Some other info – my tongue is always a light white color with white chunks in the back. I've had a two candida tests (a swab from my tongue and one from a stool analysis), but they were negative.

I'm pretty sure this is related also – my thumbs and pointer nails have beaus lines (horizontal grooves). Recently had blood work done and I'm not deficient in anything. My doctors do not know what they are from (asked my regular doctor and dermatologist about them). Also, my hair became very thin and is always shedding.

Digestion related issues: I sometimes have heartburn and am constipated occasionally.

Some other background info – a year ago I was tested positive for SIBO and I was treated with Xifaxin for two weeks. The smell never went away. I believe I do have some sort of dysbiosis (maybe hydrogen sulfide dysbiosis), but I think it's a different bacteria than what was tested when I was tested for SIBO. The test results showed an increase towards the end of the test (which I have read can be a false positive).

My life is a nightmare because of this. It makes me depressed and literally not want to do anything. Going to work everyday or doing anything socially is a struggle. I'm on a mission to solve this. I'm going to order a stool analysis test and will hopefully gain some insight into what's going on. If I come across any answers or anything that helps, I promise I will post it here.

Liked by kao

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I believe I have a response worthy of analysis, as it is I have had the very same problem and for several years I was made to believe the smell was from a sinus related issue. So I spent countless sessions at the ENT and dentist but never considered my persistent digestive issues.

For the smell , it comes out of your lungs from the air you breathe. As humans, we exhale over 10,000 times a day of which most of the gases are odorless such as Carbon dioxide and a whole other variety. Individuals can sometimes emit foul odor through their breath as a result of compromised bodily functions. In our case, we are emitting Volatile Sulfur Compounds (gases) as result of food break down in our stomach. Naturally these sulfur compounds are excreted via our colon as flatulence but under certain conditions they are rather absorbed in the small intestine into our blood stream. Gases in our blood stream can only be expelled via our lungs hence our breath …. meaning the very air you exhale from your lungs will occasionally smell due to these food breakdowns. Your actual breath will still be intact not smell. Simply put, you are kinda farting from your nostrils and mouth after eating a gassy smell food. This is very different from bad mouth odor and also your sense of smell is now biased due to constantly exhaling these sulfur

For the condition , it is evidently LEAKY GUT SYNDROME an under studied health topic in the health community and in most cases you may be having other health related symptoms like in the case of SIBO and IBS. SIBO is most likely the starter symptom which in it self is very difficult to treat as it tends to reoccur. This eventually leads to Leaky Gut, so your gut is more often than not going to be leaking this abominable gases into your blood steam especially after a high fiber meal.

Possible solution, we need to heal our gut lining to prevent it from leaking these excretes in to our blood stream.Therefore we need to give our gut a break from a fiber rich diet while supplying it with healing foods to repair damaged linings and possible malfunctioning of the small intestine. A low fiber diet will reduce bacteria activity in the gut and ultimately reduce gas production in the gut. In turn the intermittent exhalation of Sulfur gases will reduce at it isn’t absorbed in the gut Most importantly, we need to heal our gut into its core functions which is absorption of nutrients and not toxins released by too much bacteria activity in the gut. There’s no one solution to this problem and we aren’t going to be instantly cured seeing as this condition manifested gradually.

I believe stress is a huge factor in this condition, in my case I was in college and under huge stress and was eating a high fiber diet to maintain my health. Chronic stress leads to low production of digestive acids which is responsible for keeping bacteria levels in our digestive system in check. Coupled with a high fiber diet I was prepping my gut for a case of Sibo , which being difficult to differentiate from IBS and a delayed diagnosis eventually lead to my leaky gut. I have been stressed about the odor issue for so long and only ate a healthy diet which is usually rich in fiber but these conditions only exasperated the problem. Now I know better thanks to God making my constant diligent research into this problem conclusive. Now I have began my journey towards healing. Which is simply relax and enjoy your life you body will heal itself as God intended of course maybe with a little direction.

P.S
Treat Sibo and Leaky gut with the respect medication and diet and lots of patience. Not only will you abate your symptoms but also help your entire health in the long run.

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@kanaazpereira

Welcome to Connect, @gethealthy1977. I completely understand how frustrating and uncomfortable your symptoms must make you feel. The causes of halitosis (bad or odorous breath) can both be intraoral (from the oral cavity itself), or extra oral (may include various systemic diseases and use of certain medications). https://www.mayoclinic.org/diseases-conditions/bad-breath/symptoms-causes/syc-20350922

Recent evidence from research suggests that a better strategy to overcome bad breath/sulfurous odor may be more about nurturing helpful bacteria in the mouth than about destroying germs and their by-products.

– Knockout mice help find gene for bad breath https://www.sciencedaily.com/releases/2017/12/171219133617.htm
– Halitosis: Current concepts on etiology, diagnosis and management https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4813452/

Are you concerned that you may have eaten something or picked up some bacteria from your trip to Costa Rica?

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Kanaaz Pereira, can you get someone to review any of this? I've visited the Mayo Clinic. I've seen three different specialties there. All of them keep feeding me the idea that it's just the way the body is and to accept it. They recommended some breath tests and ended the conversation with something always summed up as "accept it and live with it". I want someone who specializes in finding the source of VSCs. I'd pay anything to get it.

Haphazardly going to different doctors at the mayo clinic isn't working. I want someone that's knowledgeable on the subject because I'm tired of waiting long periods of time only to have them dismiss it. It's easy for them to say that's the way it is, and it's incredibly frustrating having to hear it time and again without any serious inquiry into it.

I'm begging you. I want them to take it seriously, and if they don't know, have them send it to someone who might know.

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@pbleonar2

Kanaaz Pereira, can you get someone to review any of this? I've visited the Mayo Clinic. I've seen three different specialties there. All of them keep feeding me the idea that it's just the way the body is and to accept it. They recommended some breath tests and ended the conversation with something always summed up as "accept it and live with it". I want someone who specializes in finding the source of VSCs. I'd pay anything to get it.

Haphazardly going to different doctors at the mayo clinic isn't working. I want someone that's knowledgeable on the subject because I'm tired of waiting long periods of time only to have them dismiss it. It's easy for them to say that's the way it is, and it's incredibly frustrating having to hear it time and again without any serious inquiry into it.

I'm begging you. I want them to take it seriously, and if they don't know, have them send it to someone who might know.

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Hi @pbleonar2 I haven't had time to read what your problem is – but I just finished 2 (separate weeks of evaluation/consults at Mayo – and am VERY disappointed, rather disgusted; in fact. They actually did diagnose my problem – or what seems to be a big part of it, and while I know from my own research and info that other centers make available to the public – that my problem is quite treatable.. and in many people, good resolution of symptoms can happen…. in fact. I've had a positive response to the first round of antibiotics I was put on. however, from what experts in this area do, I should have a little longer course, and possible another AB, based on the type of bacteria I have. However my GI doc, who is a Fellow, appears to have no interest in "fixing me", nor looking at any of the research or information from a major center that Specializes in SIBO., nope, he wants me to go to a "chronic pain program"… and as you say, "learn to live with it'! I'm thinking ,, WHAT? You're giving up already? I haven't even had a chance to go through a decent treatment protocol, and i wrote these concerns to him along with the fact that I am getting sick from the Miralax he wants me to take (BAD for SIBO), which I told him before… he thinks constipation is causing my pain.. I KNOW it isn't.. I now know the SIBO is likely making me constipated at times.. but now I have diarrhea thanks to his "treatment". The he got mad because I was asking him to many questions on the portal (I thought he might want feedback on how I was responding.. I asked for a prescription for something for my SIBO protocol that he actually suggested, and 2 weeks, I can't get him to answer.

I told the urgent care Doc (I had so much diarrhea I was really dehydrated).. she said, get a different doctor, and go to Cleveland Clinic.. She said that's what Mayo does.. you see the people in training.. that's why you don't see anyone who "specializes" you your problem (I don't know the initials.. it would help if people write things out maybe. if you don't know SIBO, I will). I've heard Cleveland Clinic is really good for GI problems from several other people, so I'm thinking of going there next.

It's probably not popular b/c this is Mayo's site, but maybe the feedback is something they need, and if they want to improve their GI care, they'll listen. It's terrible I (and my insurance company) have paid them over 20K , and I'm on the internet coming up with my own treatment protocol, found a SIBO diet from Cedars-Sinai in LA (they sent me to a dietician who knew NOTHING, told me to eat three times a day and eat a lot of Fiber (EXACTLY the opposite of what us SIBO people should do… LOW fiber for us), so she gave me BAD advice.

I hate to say it, but after 3 bad experiences, I'd move on. Don't know where you live, but Cleveland Clinic is in midwest, so maybe close. The SIBO centers are on east and west coasts, I'm trying to see if I can get someone local to write scripts for me. But it's really sad.. that there is treatment for me.. and the doctor won't write the scripts.. and I told him I was miserable… on Aug 21. This is substandard care, IMO.

And no, I don't want to "live with it", that was why I came there.. I have a treatable problem, and I think there are other things that could be ruled out. The GI Fellow also didn't have correct information about some other things.

Other places, you make an appointment with a specialist, and see them. I wouldn't mind seeing a Fellow (someone still training) if they were open minding and wanted to learn and were open the idea that there is so much to know nowadays one doctor can't even know it all, and work with me… HE could actually learn a lot too, which is what he is supposed to be doing. But he doesn' t give a damn (sorry can I say that), it seemed to fit. After all, he doesn't get paid for answering questions on the portal. I should drive 4 hours and make an appointment, so he can charge me $400 to write a prescription. That is crazy.

You can't change people, if the docs aren't taking you seriously they aren't going to change. Like the one I saw. I don't bother to waste my time. Cut your losses. I learned the hard way, spend too many years with docs like that, and all I did was lose years of my life. Check into the Cleveland Clinic… you shouldn't have to beg for decent care.

Good luck and I'm with you..
Oh.. FYI.. I just met a retired Family Practice doc who has SIBO (my problem) and was looking for info.. I sent him my collection (I've done a LOT of research).. he's actually written a book and has a website calling "managing your doctor".. it's all about what i've been kvetching about .. and he agrees is a huge problem with the medical system.. he wants to help people learn how to be their own advocates , how to be assertive about getting care… …I just ordered it, looks fabulous! You can also write him on website.. doesn't look like many people do, but he's interesting in hearing stories from people who have had to basically help themselves b/c the system didn't….
https://managingyourdoctor.com/

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@elle1233

Hi @pbleonar2 I haven't had time to read what your problem is – but I just finished 2 (separate weeks of evaluation/consults at Mayo – and am VERY disappointed, rather disgusted; in fact. They actually did diagnose my problem – or what seems to be a big part of it, and while I know from my own research and info that other centers make available to the public – that my problem is quite treatable.. and in many people, good resolution of symptoms can happen…. in fact. I've had a positive response to the first round of antibiotics I was put on. however, from what experts in this area do, I should have a little longer course, and possible another AB, based on the type of bacteria I have. However my GI doc, who is a Fellow, appears to have no interest in "fixing me", nor looking at any of the research or information from a major center that Specializes in SIBO., nope, he wants me to go to a "chronic pain program"… and as you say, "learn to live with it'! I'm thinking ,, WHAT? You're giving up already? I haven't even had a chance to go through a decent treatment protocol, and i wrote these concerns to him along with the fact that I am getting sick from the Miralax he wants me to take (BAD for SIBO), which I told him before… he thinks constipation is causing my pain.. I KNOW it isn't.. I now know the SIBO is likely making me constipated at times.. but now I have diarrhea thanks to his "treatment". The he got mad because I was asking him to many questions on the portal (I thought he might want feedback on how I was responding.. I asked for a prescription for something for my SIBO protocol that he actually suggested, and 2 weeks, I can't get him to answer.

I told the urgent care Doc (I had so much diarrhea I was really dehydrated).. she said, get a different doctor, and go to Cleveland Clinic.. She said that's what Mayo does.. you see the people in training.. that's why you don't see anyone who "specializes" you your problem (I don't know the initials.. it would help if people write things out maybe. if you don't know SIBO, I will). I've heard Cleveland Clinic is really good for GI problems from several other people, so I'm thinking of going there next.

It's probably not popular b/c this is Mayo's site, but maybe the feedback is something they need, and if they want to improve their GI care, they'll listen. It's terrible I (and my insurance company) have paid them over 20K , and I'm on the internet coming up with my own treatment protocol, found a SIBO diet from Cedars-Sinai in LA (they sent me to a dietician who knew NOTHING, told me to eat three times a day and eat a lot of Fiber (EXACTLY the opposite of what us SIBO people should do… LOW fiber for us), so she gave me BAD advice.

I hate to say it, but after 3 bad experiences, I'd move on. Don't know where you live, but Cleveland Clinic is in midwest, so maybe close. The SIBO centers are on east and west coasts, I'm trying to see if I can get someone local to write scripts for me. But it's really sad.. that there is treatment for me.. and the doctor won't write the scripts.. and I told him I was miserable… on Aug 21. This is substandard care, IMO.

And no, I don't want to "live with it", that was why I came there.. I have a treatable problem, and I think there are other things that could be ruled out. The GI Fellow also didn't have correct information about some other things.

Other places, you make an appointment with a specialist, and see them. I wouldn't mind seeing a Fellow (someone still training) if they were open minding and wanted to learn and were open the idea that there is so much to know nowadays one doctor can't even know it all, and work with me… HE could actually learn a lot too, which is what he is supposed to be doing. But he doesn' t give a damn (sorry can I say that), it seemed to fit. After all, he doesn't get paid for answering questions on the portal. I should drive 4 hours and make an appointment, so he can charge me $400 to write a prescription. That is crazy.

You can't change people, if the docs aren't taking you seriously they aren't going to change. Like the one I saw. I don't bother to waste my time. Cut your losses. I learned the hard way, spend too many years with docs like that, and all I did was lose years of my life. Check into the Cleveland Clinic… you shouldn't have to beg for decent care.

Good luck and I'm with you..
Oh.. FYI.. I just met a retired Family Practice doc who has SIBO (my problem) and was looking for info.. I sent him my collection (I've done a LOT of research).. he's actually written a book and has a website calling "managing your doctor".. it's all about what i've been kvetching about .. and he agrees is a huge problem with the medical system.. he wants to help people learn how to be their own advocates , how to be assertive about getting care… …I just ordered it, looks fabulous! You can also write him on website.. doesn't look like many people do, but he's interesting in hearing stories from people who have had to basically help themselves b/c the system didn't….
https://managingyourdoctor.com/

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I'm desperate because this is all tertiary care has given me so far. I understand them when they say dysbiosis is difficult. What they seem to dismiss is the idea that there is some 'thing' that's causing the dysbiosis. While I'm sure the guy I saw is content on insisting dysbiosis just magically appears sometimes, I am not. There's a reason for the problem. Your body's microbiome doesn't just go off kilter from isolated stressful incidents. Whether it's tropical sprue or some furtive parasitic organism, something is causing all of this.

Personally, I think it's just apathy among doctors. They face large volumes of patients and they don't have time to devote investigative work for diagnostic testing to arrive at a lucid conclusion. And I understand it. I get it. I work in a bureaucratic system myself. BUt I'm willing to pay funnel extra money into this for more serious inquiries from doctors and they're staunchly set on sticking with whatever idea they've inculcated in their head.

I'm tired of this and I'm tired of being told to live with it. I guarantee if they had the same problem and had to stick with the same strict diet day in and day out, they certainly wouldn't be so damned smug with their closed-minded conclusion. I get the microbiome is a complex system, but it DOESN'T just go off and do it's own thing permanently without something else affecting it. Parasitic infection, hypochlorohydria, tropical sprue, and many other things can impact the microbiome– and if they're not addressed the problem never goes away.

So again, I'm begging this organization to address the topic, and if they can't come up with something cogent and collected to answer it with, send us someone outside the clinic that can address it and start recommending more detailed testing. This has been a 7 year nightmare, and it's absolutely ridiculous how many doctors are quick to dismiss this. And if I raise my voice during the interview when they start being dismissive, then I"M the problem.

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@pbleonar2

I'm desperate because this is all tertiary care has given me so far. I understand them when they say dysbiosis is difficult. What they seem to dismiss is the idea that there is some 'thing' that's causing the dysbiosis. While I'm sure the guy I saw is content on insisting dysbiosis just magically appears sometimes, I am not. There's a reason for the problem. Your body's microbiome doesn't just go off kilter from isolated stressful incidents. Whether it's tropical sprue or some furtive parasitic organism, something is causing all of this.

Personally, I think it's just apathy among doctors. They face large volumes of patients and they don't have time to devote investigative work for diagnostic testing to arrive at a lucid conclusion. And I understand it. I get it. I work in a bureaucratic system myself. BUt I'm willing to pay funnel extra money into this for more serious inquiries from doctors and they're staunchly set on sticking with whatever idea they've inculcated in their head.

I'm tired of this and I'm tired of being told to live with it. I guarantee if they had the same problem and had to stick with the same strict diet day in and day out, they certainly wouldn't be so damned smug with their closed-minded conclusion. I get the microbiome is a complex system, but it DOESN'T just go off and do it's own thing permanently without something else affecting it. Parasitic infection, hypochlorohydria, tropical sprue, and many other things can impact the microbiome– and if they're not addressed the problem never goes away.

So again, I'm begging this organization to address the topic, and if they can't come up with something cogent and collected to answer it with, send us someone outside the clinic that can address it and start recommending more detailed testing. This has been a 7 year nightmare, and it's absolutely ridiculous how many doctors are quick to dismiss this. And if I raise my voice during the interview when they start being dismissive, then I"M the problem.

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Google making Natto. It’s excellent for the gut. Also take vitamins D3 and K2. I buy K-vitamins.com

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@pbleonar2

I'm desperate because this is all tertiary care has given me so far. I understand them when they say dysbiosis is difficult. What they seem to dismiss is the idea that there is some 'thing' that's causing the dysbiosis. While I'm sure the guy I saw is content on insisting dysbiosis just magically appears sometimes, I am not. There's a reason for the problem. Your body's microbiome doesn't just go off kilter from isolated stressful incidents. Whether it's tropical sprue or some furtive parasitic organism, something is causing all of this.

Personally, I think it's just apathy among doctors. They face large volumes of patients and they don't have time to devote investigative work for diagnostic testing to arrive at a lucid conclusion. And I understand it. I get it. I work in a bureaucratic system myself. BUt I'm willing to pay funnel extra money into this for more serious inquiries from doctors and they're staunchly set on sticking with whatever idea they've inculcated in their head.

I'm tired of this and I'm tired of being told to live with it. I guarantee if they had the same problem and had to stick with the same strict diet day in and day out, they certainly wouldn't be so damned smug with their closed-minded conclusion. I get the microbiome is a complex system, but it DOESN'T just go off and do it's own thing permanently without something else affecting it. Parasitic infection, hypochlorohydria, tropical sprue, and many other things can impact the microbiome– and if they're not addressed the problem never goes away.

So again, I'm begging this organization to address the topic, and if they can't come up with something cogent and collected to answer it with, send us someone outside the clinic that can address it and start recommending more detailed testing. This has been a 7 year nightmare, and it's absolutely ridiculous how many doctors are quick to dismiss this. And if I raise my voice during the interview when they start being dismissive, then I"M the problem.

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Sounds like we are coming from the same place 🙂
It is difficult.. but that is why (in my case) I thought going to a major center would help.
I agree with your conclusions I talked about, and it's true. You have to find a doctor who is interested enough want to investigate your problem and learn, or be open to you bringing them information (i.e. in my case I have gotten a good treatment protocol from a major center that specializes in my problem, and just asked the doc if we could try it – it's from a major center, based on research, not from some unknown quack). I was ecstatic when I met Dr. Neustatter, who says there is so much to know nowadays, so much information, even one doctor can't know it all! I thought my doc would be happy that we had something to try. Instead, apparently it "offended' him and he is just ignoring me now, not responding to any messages through that portal system we are supposed to use to communicate. I asked him for a prescription for something that he had even listed as a possibility, and it's been 2 weeks and I've heard nothing. In the meantime, I'm suffering, and he knows it, because I told him. That's just brutal! I can't even believe it!

And sadly, that has also been my experience, if you try to stand up for yourself, or disagree with them (and I am very diplomatic, try to be polite and sensitive), you get branded a "problem" patient, and yes, you are the problem.

I'm glad (from the sound of you – that you still have the 'fight' in you, and haven't given up! We know our bodies! There is help out there. It's a long journey in getting to it, and you have to find it all on your own.

I'm going to have to read back to try to understand your history/ problem if I can, and if any of what I've learned applies to you I'll pass it on. You are not the "problem", and don't ever let anyone make you feel that way! This is a problem with our healthcare system, and you are not alone, in fact; your experience is all too common.. hence Dr. Neustatter's website and book.

Well, good luck trying to get help from Mayo.. let me know how it goes. I don't think they would want to send someone from outside the clinic b/c I guess they would think that wouldn't be good for their image (when actually I would be impressed by that). All the competition and 'politics's. I think you have to go get that help, but you can certainly try and see.. and yes, I agree they should! I know I even mentioned to my Dr I would be happy to switch to another doctor if he found me too "difficult" (I didn't want to say my case, I was trying to give him an easy 'out'.. and maybe I'd get someone more interested in my problem, that's fine. But he just won't answer me at all, he's just shut me off. That's really frustrating, when I feel I was going out of my way to be 'nice' to him, and you know what, I shouldn't even have to do that. Now I don't even know what is going on.

So where are you at? Do you have more appointments? Have you written to anyone asking for help, have you gotten any answers?

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14 years and counting. Devastated to hear Mayo Clinic wasn't any help. I fantasize about having enough money to see specialists at Mayo. Had brunch with an old friend, we go back to middle school and she knew me before this problem. I could see her moving back from me as I was speaking. I hate having to ensure I'm not in people's faces when I with them. I need to find a new job but can't bare having to interact with new people.

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@pbleonar2

I'm desperate because this is all tertiary care has given me so far. I understand them when they say dysbiosis is difficult. What they seem to dismiss is the idea that there is some 'thing' that's causing the dysbiosis. While I'm sure the guy I saw is content on insisting dysbiosis just magically appears sometimes, I am not. There's a reason for the problem. Your body's microbiome doesn't just go off kilter from isolated stressful incidents. Whether it's tropical sprue or some furtive parasitic organism, something is causing all of this.

Personally, I think it's just apathy among doctors. They face large volumes of patients and they don't have time to devote investigative work for diagnostic testing to arrive at a lucid conclusion. And I understand it. I get it. I work in a bureaucratic system myself. BUt I'm willing to pay funnel extra money into this for more serious inquiries from doctors and they're staunchly set on sticking with whatever idea they've inculcated in their head.

I'm tired of this and I'm tired of being told to live with it. I guarantee if they had the same problem and had to stick with the same strict diet day in and day out, they certainly wouldn't be so damned smug with their closed-minded conclusion. I get the microbiome is a complex system, but it DOESN'T just go off and do it's own thing permanently without something else affecting it. Parasitic infection, hypochlorohydria, tropical sprue, and many other things can impact the microbiome– and if they're not addressed the problem never goes away.

So again, I'm begging this organization to address the topic, and if they can't come up with something cogent and collected to answer it with, send us someone outside the clinic that can address it and start recommending more detailed testing. This has been a 7 year nightmare, and it's absolutely ridiculous how many doctors are quick to dismiss this. And if I raise my voice during the interview when they start being dismissive, then I"M the problem.

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Dear Pbleonar,
I suffer from the same condition and feel your pain. I've been to countless doctors and have even seen a psychiatrist who thought it was all in my head. I've been diagnosed with SIBO. What ever I have is causing the SIBO. I suffer from breath that smell like a fart, feces and butt odor. When under stress the smell come out in different parts of my body. I'm on a round of rifaxin which I've taken in the past and did not work. I believe that it is a parasitic. I visited South America got food poisoning and haven't been the same since. This condition is effecting my life traumatically. I don't like to go out, because of the constant comments. I am a teacher. The kids refer to me as dragon breath. They cover their noses when I speak or put their hoods over their face. No one wants to sit next to at meetings. The staff whispers and talks about me behind my back. The principal is trying to get rid of my despite being a great teacher. I've tried so many things. I have a 3 drawer cabinet full of supplements that don't work. I just tired! I really concerned about losing my job because they think it's a hygiene issue when I take two showers a day. I'm so tired of the medical community not taking this issue seriously. It seems like there should be an easy fix. So many people suffer from this condition, I don't understand why people are ignoring us.

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@smelly1

Dear Pbleonar,
I suffer from the same condition and feel your pain. I've been to countless doctors and have even seen a psychiatrist who thought it was all in my head. I've been diagnosed with SIBO. What ever I have is causing the SIBO. I suffer from breath that smell like a fart, feces and butt odor. When under stress the smell come out in different parts of my body. I'm on a round of rifaxin which I've taken in the past and did not work. I believe that it is a parasitic. I visited South America got food poisoning and haven't been the same since. This condition is effecting my life traumatically. I don't like to go out, because of the constant comments. I am a teacher. The kids refer to me as dragon breath. They cover their noses when I speak or put their hoods over their face. No one wants to sit next to at meetings. The staff whispers and talks about me behind my back. The principal is trying to get rid of my despite being a great teacher. I've tried so many things. I have a 3 drawer cabinet full of supplements that don't work. I just tired! I really concerned about losing my job because they think it's a hygiene issue when I take two showers a day. I'm so tired of the medical community not taking this issue seriously. It seems like there should be an easy fix. So many people suffer from this condition, I don't understand why people are ignoring us.

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Treatment of SIBO doesn't always take. You may need to take multiple rounds of antibiotics. In addition, you have to watch what you eat as the wrong types of food may bring the bacteria overgrowth.

A friend has SIBO, received antibiotic treatment and still has to stay on top of it and what she eats. However, she doesn't suffer from bad or fecal breath.

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@pinkbird

I have this same exact problem. I've been told I smell like rotten eggs, sewage and poop. It is socially crippling. There are certain things that make it worse, for example, if I have an alcoholic drink, eat beans/hummus, bananas, chocolate, fried foods or drink lemon water and certain teas. I would say the alcoholic drinks are the worst for me – after 2 minutes of consuming a drink I emit the odor and it's just continuous from there (with several comments of "who farted").

Another odd thing is when I have a cold or sinus infection, the smell is absolutely horrendous….it fills a room and people can smell me from many feet away.

The crazy thing about all of this is that I can rarely smell it. There was a time when I went back in my car after being out of it for a couple of minutes and I smelled it then.

Some other info – my tongue is always a light white color with white chunks in the back. I've had a two candida tests (a swab from my tongue and one from a stool analysis), but they were negative.

I'm pretty sure this is related also – my thumbs and pointer nails have beaus lines (horizontal grooves). Recently had blood work done and I'm not deficient in anything. My doctors do not know what they are from (asked my regular doctor and dermatologist about them). Also, my hair became very thin and is always shedding.

Digestion related issues: I sometimes have heartburn and am constipated occasionally.

Some other background info – a year ago I was tested positive for SIBO and I was treated with Xifaxin for two weeks. The smell never went away. I believe I do have some sort of dysbiosis (maybe hydrogen sulfide dysbiosis), but I think it's a different bacteria than what was tested when I was tested for SIBO. The test results showed an increase towards the end of the test (which I have read can be a false positive).

My life is a nightmare because of this. It makes me depressed and literally not want to do anything. Going to work everyday or doing anything socially is a struggle. I'm on a mission to solve this. I'm going to order a stool analysis test and will hopefully gain some insight into what's going on. If I come across any answers or anything that helps, I promise I will post it here.

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Same here. I have done a list of things to solve this. Have you had any luck?
3 upper endo's
gall bladder removed
tonsils removed
stopped eating red meat
I take probiotics
floss after each meal
monthly detox
gargle with salt and peroxide after each meal
Nothing works!

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@smelly1

Dear Pbleonar,
I suffer from the same condition and feel your pain. I've been to countless doctors and have even seen a psychiatrist who thought it was all in my head. I've been diagnosed with SIBO. What ever I have is causing the SIBO. I suffer from breath that smell like a fart, feces and butt odor. When under stress the smell come out in different parts of my body. I'm on a round of rifaxin which I've taken in the past and did not work. I believe that it is a parasitic. I visited South America got food poisoning and haven't been the same since. This condition is effecting my life traumatically. I don't like to go out, because of the constant comments. I am a teacher. The kids refer to me as dragon breath. They cover their noses when I speak or put their hoods over their face. No one wants to sit next to at meetings. The staff whispers and talks about me behind my back. The principal is trying to get rid of my despite being a great teacher. I've tried so many things. I have a 3 drawer cabinet full of supplements that don't work. I just tired! I really concerned about losing my job because they think it's a hygiene issue when I take two showers a day. I'm so tired of the medical community not taking this issue seriously. It seems like there should be an easy fix. So many people suffer from this condition, I don't understand why people are ignoring us.

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I feel the same way! I was actually thinking about getting funds together and paying a doctor to do research.

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@msacctnt

Same here. I have done a list of things to solve this. Have you had any luck?
3 upper endo's
gall bladder removed
tonsils removed
stopped eating red meat
I take probiotics
floss after each meal
monthly detox
gargle with salt and peroxide after each meal
Nothing works!

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Dear msacctnt,
If so many people suffer from the exact same symptoms why is it so hard for the medical community to believe us and take us seriously. It's not hard to do research, the patients are right here!

Liked by kao

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