New York Trimethylaminuria meetup group in need of an organizer

The New York TMAU meetup group on meetup.com was an innovative idea started 3 months ago to enable people in the New York area with body odor to get together, and had reached a membership of 7. At the moment it does not have an organizer, so it looks like anyone wishing to join and be the organizer can do so. Perhaps the page could be kept going by making the meetups less frequent than weekly to start with ? If an organizer is not found, the page will be deleted within the week. It seems a pity for the page to be deleted even if no meetings take place. To save the group, someone could even become the organizer and not organize any meetups, then it can be handed over to someone else when a volunteer arrives.

It would be good to see meetup.com used for body odor and halitosis groups in other cities. Usually those with an odor problem cannot smell others with the same condition.

Trimethylaminuria 'carrier' test

For the Trimethylaminuria phenotype test (urine test), it is common for the lab to suggest 'provoking' the symptom, usually by taking a choline dose before testing. The lab is checking if following happens :

choline - altered by gut bacteria to TMA - absorbed and how much is converted to TMAO

There is also a variation of the test for people to test and see if they are genetic 'carriers' of TMAU. This is done by taking a trimethylamine dose before doing the same test.

 TMA- how much is converted to TMAO ?

It's not known how many labs suggest this test, but the only person to write papers on this variation of testing suggests a 600mg dose of TMA should be enough to detect carriers. At 900mg, most people are expected to fail to convert enough to be classed as normal. At 600mg, only carriers and sufferers are expected to fail. Only sufferers are expected to fail lesser doses.

This paper tells of the background of coming to this conclusion of setting the level for detecting genetic carriers of TMAU, and again interestingly notes that 1% of random people tested 'failed' the carrier test. It is also noted that "80%" seems to be the 'cut-off' level in this study, whereas today this is probably set at "85%". The paper was published in 1995

An oral trimethylamine challenge test has been used to confirm the heterozygous status of patients with 'fish-odour syndrome'. By measuring the percentage of total urinary trimethylamine-related material excreted as the N-oxide, no discrimination could be made between obligate heterozygotes (parents of 'fish-odour syndrome' patients) (n = 15; 96 +/- 2%, range 92-98%) and control individuals (parents of unaffected children) (n = 16; 96 +/- 2%, range 93-99%) on a normal diet. However, after ingesting a trimethylamine load (600 mg base) the obligate heterozygotes were clearly distinguishable (76 +/- 3%, range 71-79%) from controls (95 +/- 2%, range 91-99%) (t-test; p <0.001). One of a hundred apparently normal volunteers who were subsequently challenged with trimethylamine had a N-oxidation capacity which fell within the range found among the obligate heterozygotes.

http://www.ncbi.nlm.nih.gov/pubmed/8750603

Thames Festival Meetup 2010

Click twice on embeded Carnival video
for additional footage

As I mention in previous posts, our meetup at the Thames Festival was a special occasion that provided us with a magnificent setting in which to meet very special people. There is such beauty in the distinct uniqueness in each of us just waiting to be released, and this meetup served as a place where our inner selves broke through in a liberating outburst of laughter, contentment, and peace. Stressed and tormented faces turn into a reflection of pure joy in this process, especially when after discussing our conditions with each other, we moved on to enjoy the festivities that surrounded us.

On Sunday, we were more actively involved in the events of the Festival as we walked from one end to the other. Although we had plenty of time to discuss protocols and experiences, we made it a point to just share the ‘here and now’ and to feel free to be moved by the music, laugh out loud at our friends' wittiness, feel total pleasure in the company of friends, and to simply rejoice in the moment. It was great fun to be in the company of people with the same ailment, and to feel as if though the condition was nonexistent, even if just for a while.

During the meetup one hears comments such as, “…it gave me a chill being amongst people who have the same problem and who understand…” A meetup acquires a special dimension when after much discussion of various odor-management protocols as well as the sadness and frustration that inherently come with these conditions, a second phase follows promoting healing by simply having fun together!

Invariably, this and other meetups turn out to be healing experiences, especially for people who rarely get the opportunity to feel such freedom. I hope this video gives every reader the opportunity to experience this liberation with us.

María de la Torre
President and Executive Director
MEBO Research
maria@meboresearch.org
www.meboresearch.org

HBRI no longer accepting samples for TMAU DNA testing

HBRI, founded and run by Dr John Cashman who has a long history in FMO3 research, has recently put a message on their TMAU page

Due to lack of program support, HBRI will not be accepting genotyping (blood) samples for TMAU testing after August 20, 2010.

We will continue to accept phenotyping (urine) samples.

This is very unfortunate, since HBRI kindly let people test directly, rather than having to convince a Dr to request the test. The only other currently known TMAU test lab in the USA is in Denver, but a Dr request is necessary and it is $600.

We keep a list of known TMAU test labs on our MEBO Research website, as well as on a page in this blog

Known TMAU test labs

Blog list of known TMAU test labs

Update : They are likely to start DNA testing again next summer when they have interns and new staff to run samples

Sunday at the London Body Odor / Halitosis meetup 2010

Hi Everyone,

Our wonderful sunny yet cool last day at the Festival seemed to have much more going on than the last three I have attended previously, or maybe the weather just gave us the opportunity to be more involved in Festival activities this time. Not only did we have the opportunity to discuss at the Tattershall Castle how to better understand and manage our respective conditions, which are not all the same and do not all benefit from the same protocols, we also went on a cruise on the Thames, saw a Carnival that displayed elaborate costumes and floats, listened to great music from India and Cuba here in England, hehe… There were various types of foods for all tastes to select from the wide variety of food stalls, and everyone had the opportunity to select from a varied selection of foods to eat according to each respective needs. The fireworks came with a bang with surreal colors against the dark sky at the closing of the celebration, with the “WOWs” and “Ooos”, applauses and whistles resounding throughout the Thames late into the night. What a beautiful day!

I took many pictures and videos that I will edit when I return to Miami to show everyone on this site and in Arun's forum. I hope it will give you the "good feel” of the event, and that you will enjoy them as much as we did.

All my love to all!
Maria

Saturday at the London Body Odor / Halitosis Meetup

Hi everyone,

It was a wonderful sunny yet cool day at the meetup. We met at the Tattershall Castle then we walked over to the aphitheatre and had all kinds of delicious foods and drinks as we listened to the music and shows that surrounded us. We had the perfect opportunity to meet in person some of the people we have shared so much with in the forum. We also had a representative of the Polish forum, Wizaz.com, who had heard about the meetup in this site. I am so happy to see that our international friends from around the world feels that we are all a very united community, and I wish to extend the same invitation to all of us to experience the joy of knowing what a powerful international force we can be to tell the world that we want and need answers to all the various conditions we have in our community through research.

I hope to see many old and new faces again tomorrow! Thanks to everyone for a very memorable time!

Maria

Annual pilgrimage to the London body odor & halitosis meetup

Maria

Hello there.  I'm sitting at the gate at Kennedy airport waiting to board for London.  Should get there to meet a few people to hang out for some coffee and tea.  

I'll be sending pics as I go along

Hope to see so many of my European friends! Please go so I can meet you!!!

Maria

London bound - to body odor meetup

Load that baggage

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1993 Mitchell TMAU paper : The fish odour syndrome: biochemical, familial, and clinical aspects

This is an interesting TMAU paper from 1993 by a TMAU expert mostly involved in studies that looked at biochemical aspect of TMAU amongst body odor sufferers, Dr Stephen Mitchell of London. Unfortunately he no longer seems to do such research.

Not much seems to have changed since 1993, apart from now they have a test for the genotype testing (DNA test), and also perhaps the 'reference range' in the urine test has come down to a lower level ? In this paper, most of the TMAU cases are regarded positive if their result was around 50% or less. Perhaps today, the borderline is set at around 85% ? The paper seems to have come about due to an article in a UK newspaper in 1991. It resulted in 187 body odor sufferers writing to Dr Mitchell, who then did a survey of them, including a TMAU urine test for 156 of them. Of the 156, 11 were regarded as obvious TMAU cases (using the reference range of the time).

Of the 11 TMAU cases, 6 of them had their parents do the TMAU 'carrier' test (taking 600mg of TMA), which they all 'failed'. Another interesting point is that the 11 cases has TMA levels in the 100's, which seems on the high side.

The fish odour syndrome: biochemical, familial, and clinical aspects.
Ayesh R, Mitchell SC, Zhang A, Smith RL.

Department of Pharmacology and Toxicology, St Mary's Hospital Medical School, (Imperial College), London.
Comment in:

BMJ. 1993 Oct 16;307(6910):1009.
BMJ. 1993 Sep 11;307(6905):639-40.
Abstract
OBJECTIVES: To study the biochemical, familial, and clinical features of the fish odour syndrome among subjects with suspected body malodour.

DESIGN: Subjects who responded to a newspaper article were screened for the fish odour syndrome by interview and biochemical tests. Families of subjects with the syndrome were tested if possible.

SETTING: St Mary's Hospital, London, and some interviews at subjects' homes.

SUBJECTS: 187 subjects (28 males) with suspected body malodour, of whom 156 (19 males) underwent biochemical tests. Five families of six of the subjects with the fish odour syndrome agreed to further tests.

MAIN OUTCOME MEASURES: Amounts of trimethylamine and trimethylamine N-oxide in urine collected over 24 hours under normal dietary conditions and for eight hours after oral challenge with 600 mg trimethylamine.

RESULTS: The fish odour syndrome was diagnosed in 11 subjects: the percentage of total trimethylamine excreted in their urine samples that was oxidised to trimethylamine N-oxide was < 55% under normal dietary conditions and < 25% after oral challenge with trimethylamine (in normal subjects > 80% of trimethylamine was N-oxidised). Parents of six of the subjects with the syndrome were tested: all showed impaired N-oxidation of excreted trimethylamine (< 80%) after oral challenge, indicating that they were heterozygous carriers of the allele for the syndrome. The syndrome was associated with various psychosocial reactions including clinical depression. CONCLUSIONS: The fish odour syndrome can be inherited in an autosomal recessive fashion. It should be considered as a possible causative factor in patients complaining of body malodour. 

Full paper : The fish odour syndrome: biochemical, familial, and clinical aspects

New HBRI FMO research paper

Dr John Cashman of the Human Biomolecular Research Institute in San Diego is probably the most prolific researcher (of the few researching) of the FMO group of enzymes. This month he has published another research paper. It looks as if it is to do with FMO enzyme sources for research labs, so likely has no direct connection with TMAU other than it may make research on the FMO enzymes easier in the future.

Oligomerization and kinetic characterization of human FMO3 and FMO5 expressed as maltose binding protein fusions.
Reddy RR, Ralph EC, Motika MS, Zhang J, Cashman JR.

1 Human Biomolecular Research Institute;
Abstract
The flavin-containing monooxygenase (FMO) family of enzymes oxygenates nucleophilic xenobiotics and endogenous substances. Human FMO3 and FMO5 are the predominant FMO forms in adult liver. These enzymes are naturally membrane-bound, and recombinant proteins are commercially available as microsomal preparations from insect cells (i.e., Supersome FMO). Alternatively, FMO3 has previously been expressed as a soluble protein, through use of an N-terminal maltose binding protein (MBP) fusion. In the current study, MBP fusions of both human FMO3 and FMO5 were prepared to >90% purity in the presence of detergent, characterized for biochemical and kinetic parameters, and the parameters were compared to those of Supersome FMO samples. Although MBP-FMO enzymes afforded lower rates of turnover compared with the corresponding Supersome FMOs, both types of FMO showed identical substrate dependencies and similar responses to changes in assay conditions. Interestingly, the FMO3 enzymes showed a 2-fold activation of k(cat)/K(m) n the presence of Triton X-100. Oligomeric analysis of MBP-FMO3 also showed disassociation from a high-order oligomeric form to a monomeric status in the presence of Triton X-100. This report serves as the first direct comparison between Supersome FMOs and the corresponding MBP-fusions, and the first report of a detergent-based activation of k(cat)/K(m) that corresponds to changes in oligomerization.

The full paper can be read for free here:
http://dmd.aspetjournals.org/content/34/1/19.long

One interesting note was that FMO5 seems to be quite abundant in the small intestine. It does not seem to be known what role FMO5 plays, although often people with TMAU feel they have mild 'gut issues'. Perhaps FMO5 plays a detoxifying role in the gut, without which the ecology tends to get unfavorably 'out of control'

Update : It now seems it is unlikely FMO5 has an important role in humans. It seems to be very 'substrate specific' and deals with very few substrates, and although the RNA may be found in adult human cells, this does not mean it turns into FMO5 protein.

Diverse languages Body Odor Forums

It is so inspiring to be establishing contact with the various body odor groups throughout the world as we become an even bigger and ever growing international community. With the wonders of the various online translation programs, such as Google translate, that translates webpages for us, and iGoogle gadget (translates into 34 languages), we can read each other’s posts and learn from each other.

We have recently been contacted by a representative of a Polish language forum, ‘Wizaz, Unpleasant smell of leather, even washing’ that has about 40 members who have a Fecal Body Odor condition. The focus of Wizaz is primarily Fecal Body Odor (FBO) as opposed to TMAU. This Polish forum has been making reference to posts in this, our blog, and they are always welcome to write a piece for this site of any thoughts they may wish to share with us.

The representative of this forum has expressed interest in getting any information from us regarding research in Fecal Body Odor, SIBO, and Leaky Gut Syndrome. On the flip side, I also invite all our readers to visit their site, especially a very interesting topic done by one of their members, gelo1987, who writes quite an extensive list of products recommended for an antifungal diet on Post #93, and #97. So far, the forum has 43 pages of interesting posts.

It is a pleasure to be a part of this great and diverse international community!

As previously posted in our blog we have also been in touch with one of the Italian Body Odor, Il forum di bodyodor forum member, who has contacted us, and we now share important information with each other through our forums, blogs, and email correspondence. We have also been in contact for some time now with the Yahoo Spanish Forum, Síndromes de olor corporal (can read posts by membership only, though). And last, but not least, the Spanish Board in the Body Odor Support Forum.

Are there any other communities in other parts of the world who have an online site that would like to be in contact with us as well? If so, please email me. Uniting this way makes us stronger in numbers and may hopefully assist us in grant-seeking campaigns for research effort, not to mention just how much we can learn from each other!

It is a pleasure to be a part of this
great and diverse international community!

María de la Torre
President and Executive Director
MEBO Research
maria@meboresearch.org
www.meboresearch.org