Current wait time for MEBO TMAU Test Results

It is frequently difficult for sufferers to decide to test for trimethylaminuria,(trimethylamine in urine test.)

Questions that frequently come to mind are,

1. How do I ask my doctor for the test (where available)? What do I do if he or she doesn't take me seriously and won't order the test for me if required by a National Health Service or private medical insurance?
2. Is testing going to be expensive?
3. Is the testing process very complex, and consequently does it have a greater possibility for error?
4. The urine TMAU Test requires a choline challenge to increase my odor symptoms to their maximum. Do I really want to subject myself to this? How long will it take for the odor to decrease back to at least my normal, or for me to ever get rid of it altogether?
5. How accurate is the urine test?
6. Once the decision is made and the sufferers submits urine samples, the most important question becomes, "How long will it take for me to get my results?"

These are all very valid questions and concerns, and there are many possible answers depending on what country one lives in and how cost effective it is for the lab to analyze a batch of samples. It is potentially very costly for the lab to stop whatever other work performed by the instrument to then use it to analyze our urine samples. Therefore, in an effort to keep the price of testing down for sufferers and to address the cost effectiveness of the test to sufferers and lab, MEBO and the lab arrived at an agreement for tests to be performed when there are enough samples in a batch to to merit setting up the instrument to analysis the samples. For this reason, MEBO has agreed to send them 15 to 20 samples at a time in one batch, so they can take advantage of any opportunity within a month's period to send MEBO back the results.

Below is a brief time table of Batches 1 through 10.

BATCH #1: (40 SAMPLES) were sent to the lab on July 18, 2012, the lab received it the following day, and MEBO received the results on August 22nd.

BATCH #2: (24 SAMPLES) were sent to the lab on September 14, 2012, received the following day, and MEBO received the results on October 17th.

BATCH #3: (22 SAMPLES) were sent to the lab on November 15, 2012, received the following day, and MEBO received the results on December 5th.

BATCH #4: (15 SAMPLES) were sent to the lab on February 24, 2013, received the following day, and MEBO received the results on March 4th.

BATCH #5: (20 SAMPLES) were sent to the lab on March 28, 2013, received the following day, and MEBO received the results on April 24th.

BATCH #6: (20 SAMPLES) were sent to the lab on June 3, 2013, received the following day, and MEBO received the results on June 26th.

BATCH #7: (16 SAMPLES) were sent to the lab on September 24, 2013, received the following day, and MEBO received the results on October 29th.

BATCH #8: (15 SAMPLES) were sent to the lab on January 13, 2014, received the following day, and MEBO received the results on January 31st.*

*Due to the Arctic blast that pushed subzero temperatures into the Midwest and Eastern US in December 2014 and January 2014, UPS warned of shipment delays due to interrupted service, so MEBO delayed in shipping the kits to the lab to protect samples.

BATCH #9: (15 SAMPLES) were sent to the lab on March 20, 2014, received by the lab the following day, and MEBO received the results on April 23rd.

A lab in Brazil, DLE-Medicina Laboratorial, has joined the MEBO Urine TMAU Test Program and commenced testing on January 6, 2014. Once they collect a batch of samples, they will ship them to MEBO in Miami, thus expediting the creation of the 15 to 20 samples required for MEBO to ship batches to the lab. DLE also performs FMO3 genetic testing. This is the first South American lab that we have found that will carry out TMAU testing.

BATCH #10:MEBO has received 14 samples since March 21st, including the 7 samples sent by the lab in Rio de Janeiro, DLE. Hopefully, we will receive at least one more set of samples next week so that the batch can be shipped to the lab on Thursday, May 15th to be received by the lab on Friday, May 16th.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
MEBO's Blog (English)
El Blog de MEBO (español)

MEBO Brasil - Blog (Portuguese)

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MEBO TMAU Test Program Results: BATCH #9

Click on icon to see chart

The MEBO Research TMAU urine test program was launched in June 2012, and to date, 187 tests have been analyzed. The results of Batch #9 TMAU urine tests were received on April 23, 2014, and the 15 individuals tested received their respective results the same day as soon as MEBO received all the results on a spreadsheet from the lab.

The results of each batch seem to be different from each other. The more tests are performed, the better we get a clearer picture of averages.

If you have tested with MEBO, in order to best compare your personal results to the other results, please see the comparison chart, which presents the highest to lowest figures per category, TMA, TMAO, TMA/TMAO Ratio.

The only way to confirm the genetic form of TMAU originally positive urine test is with a DNA test. See article written by Drs. Elizabeth Shephard and Ian Phillips, "Differential Diagnosis" in NCBI, NIH pages.

1. Of the 15 samples in Batch #9
• three (3) were indicative of Primary TMAU (TMAU1)
• none (0) of Secondary TMAU (TMAU2)
2. Of the 15 samples in Batch #8
• three (3) was indicative of TMAU1
• four (4) of Secondary TMAU (TMAU2)
3. Of the 16 samples in Batch #7
• one (1) was indicative of Primary TMAU
• five (5) was indicative of TMAU2

For more information on previous Batches and test results, please see all the posts with keyword, TMAU Test Results.

How to test for TMAU through MEBO :

HOW TO ARRANGE FOR MY TMAU TEST
Click here
TMAU Test Requisition Form

No additional cost throughout the test process will be incurred
after initial payment of test & round trip shipping

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

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at no extra cost to you.
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MEBO TMAU Test Program Results: BATCH #8

Click on icon to see chart

The MEBO Research TMAU urine test program was launched in June 2012, and 172 tests have been analyzed. The results of Batch #8 TMAU urine tests were received on January 31, 2014, and all the individuals tested received their respective results within two days after MEBO received all the results in a spreadsheet from the lab.

Of the 15 samples in Batch #8, three were indicative of Primary TMAU (TMAU1) and four of Secondary TMAU (TMAU2), as compared to Batch #7, which had only one TMAU1 and five TMAU2. The results of each batch seem to be different from each other. The more tests are performed, the better we get a clearer picture of averages.

As noted in the comparison chart, which presents the highest to lowest figures per category, TMA, TMAO, TMA/TMAO Ratio, the following are the averages of all the results of 172 tests:

Primary TMAU (TMAU1) Positives: 8.14% (14 of 172)*

Secondary TMAU (TMAU2) Positives: 28.49% (49 of 172)

TOTAL TMAU POSITIVE: 36.62% (63 of 172)

TOTAL NEGATIVE FOR TMAU: 63.37% (109 of 172)

*Please note that 4 of the 14 TMAU1 positive results are repeats by the same people who wanted to see if TMA decreased with the TMAU odor-managment protocol. Even though their TMA levels decreased, the TMA/TMAO Ratio remained in the Above Normal Range, and thus indicative of Primary TMAU. Therefore, Primary TMAU, consisting mostly of genetic causes, is still considered a rare disorder with 5% or less (5 in 10,000 people).

The only way to confirm the genetic form of TMAU originally positive urine test is with a DNA test. See article written by Drs. Elizabeth Shephard and Ian Phillips, "Differential Diagnosis" in NCBI, NIH pages.

Although it took longer to get the test results for Batch#8 due to extreme arctic weather conditions in the Eastern and Midwestern US this winter, thankfully, no samples were damaged, thanks to the care and patience of everyone involved.

For more information, please see all the posts in this blog regarding, the TMAU Test Results.

How to test for TMAU with MEBO :

HOW TO ARRANGE FOR MY TMAU TEST
Click here
TMAU Test Requisition Form

No additional cost throughout the test process will be incurred
after initial payment of test & round trip shipping

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

get New Posts by EMAIL : Enter your email address :

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MEBO RESEARCH : First five years

If we can accomplish so much with only will power, one can only imagine what we can attain with proper funding!

MEBO is a sufferer–founded patient advocacy international Public Charity, with a fully volunteer staff. Everything MEBO has accomplished these past 5 years has been the result of volunteer work from sufferers, families, and experts in spite of the medical conditions sufferers battle with on a daily basis. Many are unemployed, underemployed, or experience job insecurity, since the odor becomes a liability at the workplace. Nonetheless, the strong spirit of sufferers propels the MEBO Mission as we grab on to hope in the pursuit of change brought about by research and by raising social awareness.

If we can accomplish so much with only will power, one can only imagine what we can attain with proper funding!

Since this PowerPoint was created, the new DLE TMAU Urine Test Program was launched by DLE-Medicina Laboratorial in Brazil, on January 6, 2014 for patients who wish to pick up their kits in person at the Sao Paulo or Rio labs, and kits are shipped within Brazil. It is hoped that the test will be extended to other countries in South America in the future.

Thanks to everyone in our community for playing a role in this movement!

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

get New Posts by EMAIL : Enter your email address :

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BRAZIL TMAU Urine Test Program to be launched 06 January 2014!

Original em português

It is with great enthusiasm that I announce that a partnership has been formed with DLE- Medicina Laboratorial in Brazil to launch the first TMAU Urine Test in Latin America with MEBO Research on January 6, 2014. DLE has offices in two cities in Brazil, where anyone interested in doing the test can purchase their kit in person. Below is a program Introductory Letter from the DLE Administration addressed to our community. Please refer to the DLE website for additional information.

Patient information will not be disclosed by DLE to MEBO with the shipment of urine samples. Each patient’s samples will have a kit number that MEBO will use to give the test results on a spreadsheet to DLE. In turn, DLE will deliver the results to each patient according to their standard procedures.

Initially, the TMAU Urine Test provided by DLE will be available to the Brazilian public effective January 6, 2014, and eventually, we hope it will be extended to other countries as well. We extend our most deeply felt gratitude to the DLE administration for providing this service to our community.

INTRODUCTORY LETTER FROM DLE ADMINISTRATION:

"Since 1986, DLE-Medicina Laboratorial has been processing specialized tests with new technologies and new analytical methods. Many of these tests are related to rare diseases with affected individuals encountering many obstacles, frequently for many years, before arriving at a diagnosis, as is the case for persons with Trimethylaminuria (TMAU).

In February 2013, DLE incorporated the FMO3 gene sequencing test, reducing its cost by 40%, which allows more patients to have access to genetic diagnosis.

In an ongoing effort to promote accessibility to persons with rare diseases, DLE has partnered with MEBO Research to provide the Trimethylaminuria urine test for potential research throughout the Brazilian territory. The test will become available on January 06, 2014.

This test allows for a diagnosis of both Primary Trimethylaminuria (TMAU1), Trimethylaminuria linked to FMO3 gene, and Secondary Trimethylaminuria (TMAU2), which is secondary to other medical conditions. This test can also be used to monitor the progress of treatment.

This diagnostic test examines the excretion levels in urine of trimethylamine (TMA), which is responsible for the odor, and of trimethylamine N-Oxide (TMAO) 12 hours after a choline load (choline tablets provided in the sample collection kit).

How do I prepare for the test?

The day before urine collection, the patient should avoid eating foods that may interfere with the test. In addition, it is important to rule out a urinary tract infection, which can alter the levels of trimethylamine.

Test results turnaround time

is approximately 60 working days, subject to change based on the need for a minimum number of samples required to complete a batch in order to be analyzed.

To arrange for the TMAU Urine Test,

simply contact a DLE branch, DLE- São Paulo or DLE - Rio de Janeiro, to pick up a sample collection kit. The cost of the test is R$800,00 to be paid in full when picking up the kit.

For customer convenience, the sample kit can be shipped to and picked up from the client’s home in all Brazilian states by our specialized logistics, at an additional flat rate of R$200,00. Before ordering the kit, one should check available shipping logistics to your home by calling 4020-8080, local calling charges apply, or email us at canaldocliente@dle.com.br.

For more information, please visit our website, dle.com.br/tmau."

RIO DE JANEIRO dle@dle.com.br Av.NSde Copacabana 1018 7th / 8th floors Rio de Janeiro / RJ CEP 22060-002 Tel: (21) 3299-3000 Fax: (21) 2521-9928

SAO PAULO  dlesp@dle.com.br Mato Grosso Street, 306 Shop 7 - Morumbi  São Paulo / SP  CEP 01239-040  Tel: (11) 2114-6440  Fax: (11) 2114-6441

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María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

get New Posts by EMAIL : Enter your email address :

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A EURORDIS and NORD Member Organization

MEBO TMAU Test Program Results: BATCH #7

TMAU TEST RESULTS : BATCH #7

M

Click on icon to see chart

EBO has received the TMAU Test Results of Batch #7 from the lab on a spreadsheet, identifying each participant with his or her kit number. In turn, MEBO has transposed these results to individual reports, and has emailed each participant his or her respective test results. In addition, these results have been added to the Chart that presents the highest to lowest figures per category, TMA, TMAO, TMA/TMAO Ratio. By seeing where one's figures fall in this chart compared to others', one can get a better picture of how strong symptoms are, whether one might have Primary or Secondary TMAU, and what additional test or treatment may be indicated.

On page 2 and 3 of the test results report given to each test participant, there is a write-up by Professor Elizabeth Shephard, PhD on TMAU and its odor-management protocol, to facilitate communications about the test results and TMAU with their respective physicians for follow-up treatment. For more information on TMAU, please see the handout on TMAU for Rare Disease Day, February 29, 2012, written by Professor Elizabeth Shephard, PhD, for MEBO.

For more information, please see all the posts in this blog regarding, the TMAU Test Results.

How to test for TMAU with MEBO :

HOW TO ARRANGE FOR MY TMAU TEST
Click here
TMAU Test Requisition Form

No additional cost throughout the test process will be incurred
after initial payment of test & round trip shipping

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María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

---

SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

Use your credit card to make your donation.

A EURORDIS and NORD Member Organization 

TMAU Test to India low $300/USD includes shipping

MEBO INTERNATIONAL 
TMAU TEST PROGRAM

Low $300/USD all-inclusive Test Experience
To most parts of India

Only $100/USD more for 2 test over time
in same shipment

A limited time offer for the MEBO TMAU Test to India at a reduced rate is currently available. In addition, the 2nd kit for TMAU Testing over time Option for an additional $100/USD and the Two Payment Plan Option are offered. For your personal quote, please fill out the Requisition Form below.

MEBO Research International
TMAU Urine Test

Trimethylaminuria TestRequisition Form

SEE UPDATES HERE
$150plus
shipping costs
for 1 on test,
$250plus
shipping costs
for 2 tests over time.
TWO PAYMENT PLAN OPTION
Send email to maria.delatorre@meboresearch.org to arrange, AFTER filling out Requisition Form, please..

TMAU Phenotype Test
Instruction Sheet

(supplied with test-kit)

TMAU Test
Results Form

sent via email

For Questions and Answers, see

MEBO's Interactive
Q & A Forum

Test analysis will normally occur in batches of 15 to 20

María


María de la Torre
Founder and Executive Director

  A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

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Use your credit card to make your donation.

SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online at no extra cost to you.
MEBO gets small commission from Amazon.

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Batch#6 Results and More Options MEBO TMAU Test Program

NEW TEST AND PAYMENT OPTIONS

$150 plus shipping for ONE TEST
$250 plus shipping for TWO TESTS OVER TIME

MEBO INTERNATIONAL TMAU TEST PROGRAM

Click on icon to see chart

As the results of Batch #6 arrived, patterns begin to emerge. The most significant pattern in particularly is noted when persons repeated their test two or three times over time. Below is a brief portrayal of various cases:

1. Changing the length of time between intake of choline pills and sample collection: Sufferers modified on their second test, since they had noticed that their odor became stronger a few hours after they had already taken the sample the first time. Some, not all, had a different results.
2. Some sufferers had been on a low choline diet for a long time (sometimes years) prior to doing their test, and a one-time dose of choline pills was not sufficient to produce a positive results. However in some cases, the second time around, consuming a diet higher in choline for a longer period of time prior to taking the choline pills seemed to "saturate" their bodies with TMA, resulting in a positive test result.
3. Other persons chose to test a second time waiting for the moment when they were certain that the odor was strongest, especially under certain personal conditions. The negative results of the first, and positive results of the second tests were indicative of intermittent TMAU.
4. An other persons' second TMAU Test reconfirmed to them that they do not have Primary or Secondary TMAU, and most likely, do not have intermittent TMAU. These sufferers are the ones who most need additional research to understand other causes of breath and body odor conditions.
   
   

As a result of the above-mentioned experiences, it appears that it would be more beneficial to sufferers for MEBO to offer various testing and payment options, and effective immediately, the following will be offered:

TEST OPTIONS:

Test Option #1: One test kit for $150 plus round trip shipping cost.

Test Option #2: Two test kits to test over time, for $250 plus round trip shipping cost.

NOTE : If you have already done your TMAU Test through MEBO, you can test again for $100 plus round trip shipping.

PAYMENT OPTIONS:

Payment Option #1: Payment in full using initial invoice sent by MEBO.

Payment Option #2: Two payment option, with the minimum first payment to cover round trip shipping cost, and the second payment prior to the samples being analyzed.

HOW TO REQUEST TEST OPTIONS

Anyone interested in taking advantage of any of the option noted above, would first need to fill out the TMAU Test Requisition Form, and send me an email informing of any any Option #2 you may prefer.

HOW TO ARRANGE FOR MY TMAU TEST
Click here
TMAU Test Requisition Form

No additional cost throughout the test process will be incurred
after initial payment of test & round trip shipping

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María


María de la Torre
Founder and Executive Director

  A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

---

SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online at no extra cost to you.
MEBO gets small commission from Amazon.

Use your credit card to make your donation.

A EURORDIS and NORD Member Organization