a fellow sufferer's success story

[malory]

The author of this success story has given me permission to reproduce his findings here in the hope that it will 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).