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Thursday, February 14, 2013

Florida TMAU Support Group

FLORIDA TMAU SUPPORT GROUP
Date: February 16, 2013 & March 16, 2013
Time: 12noon to 3pm


Hosted by: Hilda Postell

Location: Calvary Christian Academy
1687 W. Granada Blvd (at I-95 and State Rd 40, Just West of Walmart)
Ormond Beach, FL 32174

**The support meeting will be held in the Fellowship Hall. The school is on the property of Calvary Christian Center.
Please RSVP at email hpostell@rocketmail.com or if you do not have an email address, please call (386) 492-4076 so that your name can be added to the guest list.

During this support group we will discuss your concerns about TMAU and how to possibly make living with TMAU a little easier. You will be surrounded by other individuals who are having many of the same issues as you.

Here are a list of Cities near the Ormond Beach, Florida area

Cocoa approx 1 hr 10 mins
Daytona Beach 12 mins
Deland 36 mins
Deltona 40 mins
Gainesville 1 hr 55 mins
Jacksonville 1hr 20 mins
Kissimmee 1 hr 29 mins
Lakeland 1hr 58 mins
Melbourne 1 hr 30mins
Merritt Island 1 hr 25 mins
New Smyrna 34 mins
Ocala 1 hr 25 mins
Orlando 1hr 3 mins
Palm Coast 32 mins
Port Orange 24 mins
Rockledge 1 hr 17 mins
Sandford 50 mins
St. Augustine 53 mins
Tampa 2 hrs 17 mins
Titusville 1hr
Winter Park 1 hr 7 mins

*Check Google Maps for directions

12 comments:

Anonymous said...

In a room full of people diagnosed with tmau during these support group meet ups, can you detect the odors suffers complian of with your human nose. 10% of people had odors and of all people tested very few test positive, most test negative for tmau. Can you create meet ups for people with odors detected by the human nose who test negative for tmau please. I will fly to anyone in research willing to meet up. Maybe the 10% of tmau suffers with odors detected by the human nose also have another condition that does cause odor. Maybe tmau does not create odor detected by the human nose. If only a machine can smell your odor than your odor is not life crippling.....does everyone at monell have a defectivevnose...or a nos sovused to tmau odors that they no longer recognise the odors???

Feb 15, 2013, 8:17:00 AM
Maria de la T., Founder and Executive Director, MEBO Research said...

Your statement is a perfect example of the inaccuracy and inconsistency of the olfactory system, collectively and individually. According to the statistics of all tests done in the UK from 1997 to 2012, which we have received from Nigel Manning, the Principal Clinical Scientist, Dept of Clinical Chemistry, Sheffield Hospital UK, approximately 30% test positive for Primary or Secondary TMAU, http://www.bloodbornebodyodorandhalitosis.com/search/label/Manning This means that you have missed 20% of persons who emit an odor that a significant amount of human olfactory systems detect for the sufferer to be concerned, which you have missed. It is important to note that this Sheffield lab has one of the most, if not the most restrictive reference range for normal levels than labs in the US and other countries that tests for TMAU. It is also important to note that most if not all persons diagnosed with TMAU, have been told by a family member, doctor, or stranger, that they do not smell, and that it’s all in their heads.
In regards scientific literature on the sensitivity of human olfactory system, the age for optimum olfactory capacity is around 33-34 years, since it is at this time that the olfactory sensitivity is still sufficiently intact. There is a decline in olfactory sensitivity starting in the thirties. Therefore, I can’t detect odors in my late 50s as I used to in my 30s. In fact, hormonal changes in pregnancy while I was in my 30s produced in me a hyperosmia that made my daily life very difficult with strong reactions of nausea and vomiting. While it is an “interesting” notation whether an expert, or anyone else for that matter, detects the odor or not, it is most certainly not scientific enough to arrive at a diagnosis or to dismiss the impact one’s odor has on his or her social life. Simply stated, the scientific/medical system need to rely on more scientific diagnostic tests and not the human olfactory system. This is because everyone’s olfactory system does not have the same sensitivity nor does on individual have the same degree of sensitivity throughout his or her life. Therefore, as a result, one’s odor may be very disruptive amongst any given social situations and not others. http://www.bloodbornebodyodorandhalitosis.com/2011/01/do-they-smell-me-or-not.html

Feb 15, 2013, 8:54:00 AM
Anonymous said...

Thank you.... I am simply asking a question most less educated in the medical field would ask. My fear is people report not smelling the odor so we will not be taken seriuosly. Even doctors I fear would ask the same question I just did. Please know I am not discrediting anyone. With internet we take people at their word that they odors. I read online a researcher met a group of individuals who reported under arm odors, but the researcher reporter that in the majority of people he could not detect abnormal underarm levels at a social distance. My fear is we will be discredited with all the reports from researchers not being able to detect odors with their human nose.

I can 100% of the time smell my odor and so can every single person in my personal life, strangers, and everyone in the medical community with no intermittent phase. I am willing to occur all cost to meet with any researcher for any amount of time. Maybe using one of us as a guinee pig would help..I will use all my reources to pay for any testing for known odor cuasing conditions. Maybe try to get a doctor and lab to test a small group to rule stuff out your self and stop internet self diagnosis and guessing.......maybe you will gain more answers if you smell the odor from a person then run a battery of tests on that person.

Feb 15, 2013, 9:53:00 AM
Maria de la T., Founder and Executive Director, MEBO Research said...

I understand why you would have this concern, as do all of us sufferers have the same concern about just how much society detects our odor. I think that smelling patients for research purposes would give interesting data of both, the capacity of the olfactory system of the person smelling, and the odor emitted by the patient. If the person who is trying to detect the odor does smell it, it is significant that this person attempt to describe the type of odor detected. Thanks to this effort as well as common-day social experiences, it has been determined that many, if not most, TMAU sufferers don’t always (usually) smell of fish, but of something else. This raises the question of whether there are other chemicals involved, and possibly other metabolic deficiencies and genetic causes of body odor, thus leading research in the right direction.

Nonetheless, I strongly urge all sufferers to not use an expert’s olfactory system as a guide to whether to test for TMAU or not to test. I base this on the fact that in Cheryl Marshall’s documentary of her experience with TMAU, her mother and husband said they didn’t detect her odor. And on the same documentary, even Dr. Fennessey in his interview said that he doesn’t detect the scent of TMA at all; instead, TMA just makes his eyes tear. So, yes, it’s an interesting question whether one or more scientists/medical doctors smell you (maybe not so interesting if they don’t detect the odor other persons detect), but I wouldn’t rely on this factor to deter me from doing the actual TMAU test.

Feb 15, 2013, 10:46:00 AM
Anonymous said...

I tested negative for tmau. The researchers who report not being able to smell odors I am guessing are ofcall different ages. And there is more than 1 person trying to detect the odor. If 5 people of different ages can ot sell anything chances are ther is nothing he human nose can smell. I hope we can find causes other than tmau. I know e have to explore all options to learn and rule in and out. I hope all resources to not go to tmau only to find tmau does not produce odors detectable by the human nose. I understand resewrching tmau ven if proven to not detec odors by the human nose will help rule thins in and out and help tmau suffers find answers they search for. Thank you I look foward to reading as more is learned.

Feb 15, 2013, 11:02:00 AM
Anonymous said...

anon , where are you located ?
Are you in the Facebook group ?
The 'odorless gas' theory is something a few of us has speculated on . If you asked researchers to isolate the tma voc's in a lab, it would have a strong smell to the nose and to a device .
J

Feb 16, 2013, 6:21:00 AM
Anonymous said...

Hello thank you for the comment. The more we all brain storm even with devils advocate the closer we are to answers. I am not on face book. I prefer to remain anon....for now at least. I still question how accurate tmau testing is. False negatives?????? The test is taken 12 hours after choine ingestion......that's a long time and all bodies metabolize at different rates. I thought about retesting with 24 hour urine collection and plan to do so soon. I will post the results when I get them in the blog...

Feb 16, 2013, 9:19:00 AM
blogcontributor2 said...

Hi Anon

You make interesting points about the TMAU test. I think people can be negative for a number of reasons :

1 : The reference range of the lab may be set too low. This makes it too hard to fail'. At Arkansas the TMA level is set at around 8 and my belief is that the TMAO % should be set at around 90%, perhaps even more.

2 : I think 24 hour test may be a good last option too. I am not totally sure of this, but perhaps it will catch people that are otherwise missed. If you do the test this way, usually the lab requires to know the total urine collected.

3 : I agree I suspect there are people who may be false negatives, perhaps quite a few. I don't know why this is, especially after a choline load. I would prefer if the test was a 'TMA load' so that it doesn't depend on bacteria, but TMA is hard to find. Personally I think TMAU is merely a biomarker and that the real problem is with all FMO3 substrates, but I guess TMA should be a good biomarker of FMO3 function.

Feb 16, 2013, 9:46:00 AM
Anonymous said...

I was born with this persistant constant odor that never goes into a remission or odor free phase even for 1 second of my life. I am always able to smell the odor and so are all in the medical community and my personal life...so I strongly suspect something other than just bacteria....again I say I tested negative for tmau. I agree maye a metabolc fmo3 gene defect while some happe to also have tmau most do not... if they could find funding to biopsy someones liver. if the researchers could team up with a doctorhospital and lab it might be exremly usefull....I am other wise healthy and would offe up my liver for biopsy..as I am sure many more in the community would as well.

Feb 16, 2013, 2:13:00 PM
Anonymous said...

Would you please tell me how to find the face book group? Thanky You.......

Feb 17, 2013, 9:14:00 AM
blogcontributor2 said...

Hi anon. The facebook TMAU group is private. You need to be invited. You could add Maria as a friend and ask her to invite you. http://www.facebook.com/maria.delatorre.39545

Feb 20, 2013, 9:11:00 PM
Anonymous said...

I have been dealing with this since I was in high school I am 32 years old now by the grace of god I have a job that i deal with people and its been hard. I have bad anxiety and it's really hard to go out. I have the same problem that I can not smell myself so I do not know when I smell. I ordered online this pills called Devrom and I think that this pills made me smell myself for the first time. I smelled like Rotten Bananas or trash and one day I was admitting the smell of tuna. I will keep using these pill because at least I can spray myself and the air around me when I smell something

Jun 29, 2015, 7:49:00 AM
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