A possible subset of CFS with a smelly symptom

This week I got an email from activist in another under served medical condition, she wrote ” Preliminary microbiome results are most similar to CFS. “. In another sense, it’s may be a variation of SIBO. There is a DNA component (as there is with CFS, FM, IBS).

A list of common symptoms include:

  • Fatigue
  • Anxiety
  • Especially temperature sensitivity,
  • Presence sensitivity, “sometimes all it takes is another person coming next to me before I get extremely hot and a prickly sensation comes over my body, this usually comes with the odor getting worse for a few moments and it’s not related to anxiety as once I get these symptoms I’ll look around and then realize someone is there”
  • General malaise
  • Randomly getting very tired
  • Recurrent sore throat
  • Bruxism
  • Difficulty processing information at times.

Some web links

Despite being known for 3000 years, still little understanding.  Trimethylamine is common in most food. it can be created by bacteria from almost any food, especially rich in protein; indoles (foods such as Brussel sprouts) inhibit enzyme “deodoryzing” trimethylamine in our liver. And, worst of all, almost nothing is known about trimethylaminuria-negative cases


  • CLINICAL CHARACTERISTICS:Primary trimethylaminuria is characterized by a fishy odor resembling that of rotten or decaying fish that results from excess excretion of trimethylamine in the urine, breath, sweat, and reproductive fluids. No physical symptoms are associated with trimethylaminuria. Affected individuals appear normal and healthy; however, the unpleasant odor often results in social and psychological problems. Symptoms are usually present from birth and may worsen during puberty. In females, symptoms are more severe just before and during menstruation, after taking oral contraceptives, and around the time of menopause. [2015]
  • “The fish malodor syndrome (also known as the fish odor syndrome and trimethylaminuria) is a metabolic disorder characterized by the presence of abnormal amounts of the dietary-derived tertiary amine, trimethylamine, in the urine, sweat, expired air, and other bodily secretions. Trimethylamine itself has the powerful aroma of rotting fish, and this confers upon the sufferer a highly objectionable body odor, which can be destructive to the personal, social, and work life of the affected individual… known since 1000BC from Mahabharata (Indian Epic)” [2001]
    • “George Preti has been working on it for 30+ years, but as his latest paper showed they can’t connect even the most severe case of TMAU to one gene” from reader
  • ” Our studies include patients who have been referred to us after being examined by numerous clinical specialists with no identification or relief from their problem. This is due in part to the intermittent nature of many of these problems as well as an apparent lack of knowledge concerning many of these metabolic problems and their relation to oral symptoms.” [1992]
  • “Individuals with the metabolic disorder trimethylaminuria may sporadically produce malodors despite good hygiene. The psychosocial impact of trimethylaminuria can be considerable. However, trimethylaminuria is difficult to diagnose without specialized tests, in part because odor production is diet-dependent, and malodors may not be present during medical examinations. Thus, the prevalence and demographics of trimethylaminuria remain unclear… Consistent with previous reports, women, particularly African American women, were significantly overrepresented among trimethylaminuria-positive patients.” [2011] – Same situation as with CFS/FM — more women than men.
    • “not necessarily – our pilot programs had more men, men are more likely to take risks, pay for experimental tests and test new treatments” reader

Clinical Studies

Current Treatment

“Treatment of manifestations: Dietary restriction of: Trimethylamine (present in milk obtained from wheat-fed cows) and its precursors including choline (present in eggs, liver, kidney, peas, beans, peanuts, soya products, and brassicas [Brussels sprouts, broccoli, cabbage, cauliflower]), lecithin and lecithin-containing fish oil supplements; Trimethylamine N-oxide (present in seafood [fish, cephalopods, and crustaceans]); Inhibitors of FMO3 enzyme activity such as indoles (found in brassicas). Use of: Acid soaps and body lotions to remove secreted trimethylamine by washing; Activated charcoal and copper chlorophyllin to sequester trimethylamine produced in the gut; Antibiotics (metronidazole, amoxicillin, and neomycin) to suppress production of trimethylamine by reducing bacteria in the gut; Riboflavin supplements to enhance residual FMO3 enzyme activity. Prevention of secondary complications: Planning and monitoring of diet to ensure that the daily intake of choline and folate meets recommendations for age and sex; no restriction of dietary choline during pregnancy and lactation. Agents/circumstances to avoid: Foods with a high content of precursors of trimethylamine or inhibitors of FMO3 enzyme activity (seafoods: fish, cephalopods, and crustaceans), eggs, offal, legumes, brassicas, and soya products; food supplements and “health” foods that contain high doses of choline and lecithin; drugs metabolized by the FMO3 enzyme; circumstances that promote sweating (exercise, stress, and emotional upsets). ” [2015]

  • “Dr. Shephard now admits dietary restrictions are even more complicated – other food compounds that should be avoided are Ergothioneine, betaine. And the network of microbes messing up with it is quite large ” – reader

New Symptoms Added for this subset

The following overlap in some cases, and do not in others

  • Comorbid: Malodor
    • Any type of odor problem of uncertain origin
  • Comorbid: Trimethylaminuria
    • Ideally with a positive test
  • Comorbid: Proximity triggered Malodor
  • Comorbid: Chronic Halitosis
    • A differentiation (see [2007])
  • Autonomic Manifestations: Chemical Smelling Urine (atypical)

If the CFS diagnosis masked reporting malodor, please update your symptoms.

For new Malodor readers with uBiome