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A fellow sufferer's success story

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malory
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A fellow sufferer's success story

Post by malory »

The author of this success story has given me permission to reproduce his findings here. This ex-sufferer's symptoms were initially halitosis and IBS. Let's hope his work can help somebody.

I'm interested in connecting with professionals and practitioners who work on systemic odor so that I can share my story, educate others, and improve health outcomes for sufferers. To my knowledge, I am the first documented case of Citrobacter Freundii and Enterobacter Cloacae producing systemic body odor.

My symptoms began following a standard course of Keflex in April 2011. The odor was transient; common triggers included most foods and coffee, moving after a period of rest (i.e., waking in the morning; leaving a movie theater), and/or during increased heart rate (i.e., exercise; social anxiety). On average, I would experience between 5-10 "eruptions" per day, depending on my diet and schedule.

The odor would present itself over several seconds (<5 seconds), emerging in my urine, feces, arm pits, and up my throat. It was an "explosive" onset that smelled distinctly acrid. Later that year I tested negative for TMAU at the University of Colorado at Denver.

Subsequent stool tests by Doctor's Data in October, 2012 revealed an overgrowth of sulphite-reducing bacteria (C. Freundii) and ammonia-producing bacteria (E. Cloacae). Two courses of antibiotics (Flagyl + Tetra-Sulpha) have been curative. After 20 months, I am odor-free!
The test results were as follows:

Expected/Beneficial Flora-
1+ Bacteroides fragilis group
4+ Bifidobacterium spp.
3+ Escherichia coli
NG Lactobacillus spp.
2+ Enterococcus spp.
1+ Clostridium spp.
NG = No Growth

Commensal (Imbalanced) Flora-
1+ Alpha Hemolytic strep
4+ Hemolytic Escherichia coli

Dysbiotic Flora-
4+ Citrobacter Freundii
4+ Enterobacter Cloacae

No yeast isolated. Rare microscopic yeast (None-Rare is normal).

Negative for ova or parasites. All of the biomarkers for intestinal inflammation (Lysozyme, Lactoferrin, White Blood Cells, Mucus) were in normal ranges. My digestion and absorption (Elastase, Fat Stain, Muscle Fibers, Vegetable Fibers, and Carbs) were also in normal ranges. My Secretory IgA was high: 321 (reference range is 51-204mg/dL) and signifies a heightened immunological response, possibly due to the fact that my body has been filtering hydrogen sulfide gas and possibly ammonia for the past twenty months!

Everything else, including short chain fatty acids and intestinal health markers (Red Blood Cells, pH, and Occult Blood), was in normal ranges.

I am skeptical that accumulating data, on its own, would be helpful to the community. Numbers can only be interpreted within the framework of a hypothesis. In my case, we ordered this specific test based on a hypothesis - and supporting evidence - that an overgrowth of sulphite-reducing bacteria may produce systemic malodor.

It is likely that similar cases exist, however the bacteria and metabolites may themselves be different. The key lesson, for me, is that TMAU2 is one variety among a larger spectrum of dysbiotic conditions that produce a range of volatile malodorous compounds (trimethylamineuria, sulfur, ammonia, and perhaps many others).


By coincidence, I tested with the same lab in 2009, although my test was less comprehensive than the author of this success story. My results are below;
I went to a very expensive private 'nutritional and gut specialist' in Harley Street, London and they recommended and arranged the Doctors Data Comprehensive Parasitology stool X2 test. At the time of the test I was taking copious amounts of Dr Ohira's probiotics.


BACTERIOLOGY
Bifidobacterium 4+
E.coli spp. 2+
Lactobacillu spp. 4+
Enterococcus spp. 4+

Imbalances: Haemolytic E.coli 4+

MYCOLOGY
no yeast isolated

PARASITOLOGY
Many blastocystis hominis
Many dientamoeba fragilis

Neg: Giardia Lamblia
Neg: Cryptosporidium(EIA)

Explanatory notes:
"...one or more of the beneficial bacteria are low in this specimen. Beneficial flora include Lactobacillus, Bifidus, Enterococcus sp. and beneficial E.coli....the beneficial flora of the GI have thus been found useful in the inhibition of microbial pathogens... healthy levels of each of the benficial bacteria are indicated by either a 3+ or 4+ (0 to 4 scale) ...When imbalanced flora appear (my haemolytic e.coli) , it is not uncommon to find inadequate levels of one or more of the beneficial bacteria and/or a fecal pH which is more towards the alkaline end of the reference range. It is also not uncommon to find Haemolytic or NLF E.coli with a concomitant deficiency of beneficial E.coli and alkaline pH, secondary to a mutation of beneficial e.coli in alkaline conditions..."

Recommended treatment was metronidazole, iodoquinol, tetracycline or wormwood herbs, black walnut, oregano, grapefruit seed extract.

I used herbs first of all but, after research (Bad Bugs website-Jackie Delaney), used really strong antibiotics (furoxona/furazolidone, secnidal, nitazoxinide) which I had to order from Australia. I had to use paromomycin 6 months later to kill the remaining parasites.

I never experienced any odour relief (even temporarily) using antibiotics and then did lots of diets and natural treatments to attempt to heal the gut but...


halitosisux
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Post by halitosisux »

Malory I've sticked this because I don't understand why nobody has made a single comment. I'll keep it stickied for a while
happylife05
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Post by happylife05 »

May i know more details please? Malory i would like to talk to you if possible. Please send a personal message if possible.

What type of stool tests were they? Do we need to ask them to test for these specific bacteria or would they generally do it? Also i'm interested in finding what other intestinal bacteria imbalance can cause malodor so that i can get tested for those.

I have a constant stomach pain and doctor says it may be b'coz of H.Pylori. I was on PPI inhibitors twice, need to get a stool test done to check if my H.Pylori is gone but, i still have stomach pain. Had TMAU test done at denver lab and it came negative.


Big Thank You for the post!
Earlier i used to have odor from Breath, body, sweat and armpits but, recently my urine started smelling real bad ( i need to take a immediate shower after i pee, otherwise even i can't tolerate that smell). As the person in this story i was on lot of antibiotics since my childhood to cure Bronchitis, Aasthma, chronic cold and fever.
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Shit4Breath
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Post by Shit4Breath »

Antibiotics seem to be the common thread amongst alot of us chronic bb sufferers. It would be a good idea to start a poll on the site to see just how many of us actually had taken several rounds of antibiotics (even in childhood) before developing bb. I've long suspected dybosis as my cause.
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mike987
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Post by mike987 »

I'd like to know more about this test too.

What was the test called, and why was it ordered? Could this be ordered anytime?


I wonder if fecal transfer would have been a sufficient solution too.
happylife05
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Post by happylife05 »

Is there any other way to reach out to Malory?
bbreathking
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Post by bbreathking »

happylife05 wrote:May i know more details please? Malory i would like to talk to you if possible. Please send a personal message if possible.

What type of stool tests were they? Do we need to ask them to test for these specific bacteria or would they generally do it? Also i'm interested in finding what other intestinal bacteria imbalance can cause malodor so that i can get tested for those.

I have a constant stomach pain and doctor says it may be b'coz of H.Pylori. I was on PPI inhibitors twice, need to get a stool test done to check if my H.Pylori is gone but, i still have stomach pain. Had TMAU test done at denver lab and it came negative.


Big Thank You for the post!
Earlier i used to have odor from Breath, body, sweat and armpits but, recently my urine started smelling real bad ( i need to take a immediate shower after i pee, otherwise even i can't tolerate that smell). As the person in this story i was on lot of antibiotics since my childhood to cure Bronchitis, Aasthma, chronic cold and fever.
WOAHH !! breath, body , sweat , armpits and pee too holly shit dude... And I thought I had problemss
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deebo
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Post by deebo »

[/quote]
WOAHH !! breath, body , sweat , armpits and pee too holly shit dude... And I thought I had problemss[/quote]
this is often how systemic malodor presents itself .
Halisux Thanks for sticky-ing this man .
S4B during a webinar asked that exact question as I have suspected it also about antibiotics Causing chronic malodor . Dr Shepard said it was indeed plausible .
Happylife05 , I will email Malory .I'm very interested to maybe contact this person directly . Keflex is the exact antibiotic i was given long term . Curious ! :|
malory
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Post by malory »

I got the test via a 'nutritional specialist/naturopath' to test for parasites and candida. It was a comprehensive (2 sample) stool test screening for a variety of micro-organisms. The guy who took the Keflex had an even more comprehensive stool test (involving 3 stool samples) which was ordered by a doctor in the US.

As I am in the UK, I only used this lab because the naturopath strongly recommended it, and I did not continue for long with the naturopath as I realised the company was more interested in my money than genuinely helping me find a solution.

I know there must be many labs in the US doing these tests, and I can't vouch for this particular one I used. As my samples were sent from the UK via a medical contact of the naturopath I saw, I did pay a lot of money (over £200) for the test but the process may be much simpler if you are in the US.

To answer your question, happylife, you would need to request a comprehensive stool test which would screen you for several micro-organisms. The man who cured himself did a lot of research and experimentation himself and then formed a hypothesis which he then presented to a physician. This led to his stool test. I don't know if you can simply contact the lab and ask for a test but there is no harm in trying. As I said in my former post, the lab I used was called Doctor's Data, but it would be interesting to know if there are other reliable labs out there as well.
malory
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Post by malory »

The man who developed odour after taking Keflex has sent me the following e-mail to clarify things:

First and foremost, I am, in no way, promoting or advertising Doctor's Data. To my knowledge, there are a several private labs in the United States who provide similar testing, including Metametrix, Great Plains Lab, and Genova Diagnostics. My samples were collected at home and mailed to Doctor Data's labs in Illinois. The test cost approx. $300 and I received my results in 4 weeks. The test must be ordered by a physician.

It's important to note that I had previously undergone a stool test in the Canadian public system without any significant results. However, this public test was very limited in its scope. I was motivated to undergo a more comprehensive analysis for the following reasons:

First, I encountered an article in New Scientist about researchers at Cambridge who successfully altered the bacterial content of their patients guts to include a large quantity of sulphite-reducing bacteria. Crucially, this was accomplished with a diet high in refined carbohydrates similar to my own. I also found references in various medical journals to the (over)growth of sulphite-reducing bacteria in the human intestine, as I had access to pubmed journals at the time.

Citation: Gail Vines, 'A Gut Feeling', New Scientist, vol 159 issue 2146 - 08 August 1998, page 26,
http://www.newscientist.com/article/mg1 ... eling.html. The article is behind a paywall. Thankfully, you can read it in full on this forum: http://forum.lowcarber.org/showpost.php ... ostcount=4.

Second, I began a series of self-experimentations that strengthened my bacterial hypothesis. For one, the onset of my malodor coincided with IBS symptoms and halitosis, neither of which I had previously experienced. Both of these conditions are caused / exacerbated by the metabolic byproducts of bacteria (for instance, the sulfur produced by sulpite-reducers is a known contributor to IBS, colitis, and Crohn's).

For more information on the types of aerobic and anaerobic bacteria that might be implicated in systemic body odor and/or chronic halitosis, consult this interview with Cass Nelson-Dooley of Metametrix: http://www.bloodbornebodyodorandhalitos ... elson.html. It corroborates the article by Gail Vines cited above.

Third, I noticed that variations in the intensity of my malodor correlated with behavioral changes that altered the bacteria in my gut. This past summer, I began taking a potent prebiotic with high amounts of FOS and inulin, which dramatically worsened my symptoms within a 48 hour window. I now understand that soluble fiber, such as FOS, is a major food source for Citrobacter Freundii, the sulphite-reducing bacteria implicated in my condition.

For these reasons, I decided to undergo the test. Doctor's Data confirmed my suspicions. The laboratory incubated three different fecal samples taken on three consecutive days and then measured the relative growth of the bacterial species present in the samples. Their results revealed that I had no growth of lactobaccili strains, which are some of the most important beneficial flora, and major overgrowth (indicated as 4+) in C. Freundii and E. Cloacae.

These results are not conclusive, in part because they only reveal the composition of the given stool samples and relative growth of its constituent bacteria. It is a "snap shot" at best, not a thick description of the entire contents of a digestive tract. Nevertheless, in my case, these results were accurate and very helpful. The laboratory also tests the susceptibility of the sampled bacteria to a variety of antimicrobials in order to identify resistances and possible curative medications. My C. Freundii and E. Cloacae were both susceptible to Flagyl (i.e., Metronidazole) and Trimeth-Sulpha.

Ultimately, I believe that a significant number of sufferers have a condition that is partially or, as in my case, entirely bacterial in nature. Their symptoms can be attenuated or possibly eradicated entirely with a combination of antibacterials, probiotics, and dietary changes. Given that this is a bacterial condition, it is also possible for the dysbiotic bacteria implicated to regrow with time and therefore for symptoms to resume.

These tests are descriptive, not prescriptive. The lab cannot provide a diagnosis, nor does the stool sample provide a conclusive analysis of each and every bacterial strain present in the intestines. Far from it. Nevertheless, IF the results isolate HIGH amounts of bacteria that are known to produce volatile organic compounds (sulfur, ammonia, etc.) as a metabolic byproduct, THEN we have a compelling basis for a hypothesis rooted in dysbiotic intestinal flora.
happylife05
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Post by happylife05 »

Thank You, i will let you know what my doctor thinks about this. He is mostly cooperative and supporting to me. He researched online and asked me to get tested for TMAU in denver lab. It came negative.

So in my stool tests, they should basically look for overgrowth of bacteria, producing volatile organic compunds (Ammonia, sulphur).
HigherThoughts
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Post by HigherThoughts »

So essentially the cure for this person was a combination of 2 antibiotics? Did he take the antibiotics regularly for 20 months or was it some sort of intervals within those 20 months?
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Post by Jenny »

Hi Malory, I wanted to know if you could look back at your test results to see what your Secretory IgA number was.

I just took the same test and similar to the cured poster, my Secretory IgA was extremely high. It was 480. And even though no Dysbiotic flora was found, this proves that my body is fighting a serious infection. Likely a bacteria infection since no yeasts or parasites were found.

I had a mild case of strep throat when I took the test so I'm not sure if it's just that infection or something else.

I'm planning to get treated for the strep throat, and then possibly try Flagyl for my chronic bb in the near future. I have no BO or nasal issues. Only chronic fecal bb that can fill up a room when I talk.
malory
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Post by malory »

I'm sorry Jenny but they didn't measure my Secretory IgA at all. I ordered the test via a third party and only did the 2 stool sample test. I did the test 4 years ago so maybe I've lost a page of it , but i don't think so.

The only thing I'm focusing on now is my lack of beneficial E-coli and I am trying to re-establish it with the German probiotic called MUTAFLOR. I know it can take many weeks to recolonise the gut but I had to stop the treatment early because of its high cost. I hope to return to it soon.
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Post by Jenny »

Thanks Malory. Hopefully others can take this test too to see if there's anything we all have in common.
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