Re: Has anyone tried the NIH recommended treatment for TMAU?

Hi jennyc,

I don't know if you live outside the U.S., so if you do, please e-mail the TFnetwk@aol.com for country-specific information. 

If you do live in the U.S. as I do, I have more info on this.  You can mail a urine sample to some of the labs that test for TMAU. They do charge a fee, and you can check the websites of each individually to see how much. My son requested the kit online from Dr. Preti, with the Monell Chemical Senses Center.
http://www.monell.org
and click on the Primetime/TMAU link.

You can also request a free information packet directly from the non-profit TRIMETHYLAMINURIA FOUNDATION, and all they ask for is a self-address stamped envelope. You need to include your name/address and stamps ($2.00 in stamps - no cash, checks or money order, just the stamps) in an envelope and they will rush it out to you. Their email address is TheTFnetwk@aol.com .

TRIMETHYLAMINURIA FOUNDATION
P O BOX 3361
GRAND CENTRAL STATION
NEW YORK NY 10163
PH: 212-300-4168
The TF is a 501 3 (C ) non-profit corporation

Here are the labs that test for TMAU. This info was given to me by the TF.

Where to Get Tested

Below is a listing of diagnostic testing facilities (if you live outside the US , please e-mail theTFnetwk@aol.com for country-specific information). We recommend that you contact the lab nearest you and request the testing protocol and kit.

1. Human BioMolecular Research Institute (HBRI), San Diego , CA

Go to
http://www.hbri.org
and click on the TMAU link for further information.

2. Monell Chemical Senses Center, Philadelphia , PA

Go to
http://www.monell.org
and click on the Primetime/TMAU link.

Monell is a diagnostic testing facility where you can make an appointment to go in person for testing; however, there is currently a six-month wait. Therefore, if you would like to be tested now, contact Monell for a home-testing kit. Send in your samples now and, if desired, you can also make an appointment for a later date.

3. University of Colorado at Denver Health Sciences Center, Denver, CO

To request information about testing protocol and kits, e-mail susan.tjoa@uchsc.edu.

4. Metabolic Lab, University of Arkansas for Medical Sciences, Little Rock , AR

Contact Ms. Jan Woodall or Ms. Fran Soderberg at (501) 364-1311 (6:30 AM - 6:30 PM)

There is a Medical Geneticist available at this facility (if you live in the area). You can make an appointment to go in person for testing and after care. Contact the office of Dr. Stephen G. Kahler, M.D. - Ph: (501) 364-2966;
http://www.UAMS.org.


Only the urine test (phenotyping) is needed to diagnose TMAU. However, the blood test (genotyping) provides helpful information about the genetic aspects of your TMAU. Only HBRI and Monell perform BOTH urine and blood tests. U of Colorado and U of Arkansas conduct ONLY urine analysis.

How to Get Tested

Call the center of your choice and order the testing kit. Request that the protocol be mailed or faxed to you or your doctor. Or, make an appointment to have testing conducted at Monell.

Regardless of which facility conducts the testing, please alert the staff of any medications you are taking and/or illnesses you have, and CLOSELY FOLLOW ALL TESTING INSTRUCTIONS. Failure to do so may render your samples unusable, slow the testing and analysis processes, or result in a false diagnosis. Additionally, it is crucial that you do not change your diet prior to being tested: Doing so may cause a falsely negative test result.

Before shipping your samples, please notify the receiving lab that your specimens are on their way. Do not ship on a Friday or Saturday: The sample will sit somewhere over the weekend, the ice will melt, and the specimen will likely be useless.

Also note: These diagnostic testing centers are labs; as such, they are not staffed like doctors’ offices, nor are they intended to provide the same level and extent of service. Therefore, please understand that, due to the volume of inquiries, it is not possible for the personnel to communicate frequently with patients: their time needs to be and is better spent testing your samples. Be patient, and try to utilize the TMAU Foundation and its listserv or your doctor for routine testing and diagnostic questions.

Hope this helps you and keep in touch to let us know how it's going for you. 

mpdela