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Thursday, June 13, 2013

Stats last 3 months from RareConnect

We have received the following message on behalf of the RareConnect team from Robert Pleticha, Online Community Manager.

Dear TMAU patient advocates,

We've been looking over how people use and find the TMAU community on and wanted to share some statistics with you. Please share this with others if you think they might be interested. We'll be sending you these updates every quarter. We're always open to your ideas on how we can improve the community, or add new information...just send us an email. I'd like to thank all of you for your contributions during the webinar series and answering patient questions on the community. Let's keep this great momentum going, let us know how we can help.

TMAU community on RareConnect: (English version)

Since its creation the TMAU community has:

3 patient groups featured

165 members in total

23 testimonials

18 articles

62 forum topics

5 webinars

Data below is from the last 3 months - March12th - June 12th

Who has visited the TMAU Community over the past 3 months?
3547 unique visitors

What do they do when they visit?
These visitors visit 3,05 pages on average

These are the most visited pages of your community:

Where are visitors coming from?
Top 10 countries with most visitors:

1. United States 1,346
2. United Kingdom 386
3. France 197
4. Spain 194
5. Italy 183
6. Canada 158
7. Mexico 111
8. Australia 64
9. Colombia 58
10. Peru 52

How are people finding the community on search engines?

Top 10 keywords (the words people use on a search engine to find the community):

  1. tmau
  2. trimethylaminuria
  3. trimetilaminuria
  4. tmau diet
  5. tmau cure
  6. trimethylaminuria diet
  7. rareconnect
  8. tmau forum
  9. triméthylaminurie régime alimentaire
  10. low choline diet tmau

How did visitors find the community?
1. google 3,598
2. (direct) 544
3. 205
4. bing 55
5. ask 54
6. 38
7. yahoo 37
8. 35
9. babylon 30
10. aol 25
MEBO encourages sufferers, families, and experts to visit and participate in posting and conducting webinars sponsored by RareConnect.


María de la Torre
Founder and Executive Director

  A Public Charity
A EURORDIS and NORD Member Organization (em português)
MEBO's Blog (English)
El Blog de MEBO (español)


Anonymous said...

I've been taking kelp and zinc together and have seen some wonderful results so far, not sure how long it will last, but so far so good.

Jun 13, 2013, 6:32:00 PM
Maria de la T., Founder and Executive Director, MEBO Research said...

I looked up the nutritional data of kelp,, and it seems to be have minerals, like Calcium, iron, and mostly magnesium. It also seems to contain Omega-3 fatty acids and Omega-6 fatty acids.

I don't know what the recommended dosage is for any of these, but I read that "Magnesium ion in large amounts is an ionic laxative, and magnesium sulfate (common name: Epsom salt) is sometimes used for this purpose. So-called "milk of magnesia" is a water suspension of one of the few insoluble magnesium compounds, magnesium hydroxide. The undissolved particles give rise to its appearance and name. Milk of magnesia is a mild base commonly used as an antacid, which has some laxative side effect." Again, I don't know if the dose you are taking in kelp is high enough to serve as an intestinal cleanser, or at least to help you be regular.

Full evacuation of bowels is a very important part of odor-management. it also allows probiotics to work better.

In the 4Rs protocol as described by Cass Nelson-Dooley, Clinical Consultant at Metametrix in Part 2 of her interview for this blog, for the last R (Repair), she recommends to consider L-glutamine, essential fatty acids, zinc, panthothenic acid and vitamin C.

So, your consumption of zinc and kelp seem to be consistent with what experts recommend. I hope the benefits last. And even if you might get odor symptoms later, at least you know that zinc and kelp are beneficial for you, and then you can try to see what else could have produced symptoms. Hopefully, this benefit will be long lasting.

Do you know more information about kelp that you can share with us?

Jun 13, 2013, 7:10:00 PM
crystal said...

I have been reading the web and kelp is good for iodine deficiencies and a overall good mineral and nutrient supplement. I prayed and prayed and continue to pray I'm amazed this is the 1st time in over 25 years that I am able to eat shrimp or seafood and anything and not have the take flagyl or metrogel these items never really killed the smell but it was something to use as a weapon. I'm not sure if it is the flagyl or the zinc because I have taken them both before separate but never together. I take 2 kelp 150 mcg and 1 zinc 100 mg daily and the results are perfect I smell good.

link for kelp

link for zinc

My entire body feels different my head, my adrenaline, it's like my entire body is going thru a change I've been to the doctor 3 times because not feeling 100 percent and 1st she said my tsh (thyroid) levels were low then she said read the test results wrong that my iron was low and I took iron pills for 6 weeks and she told me all was normal then she said I didn't have to take them anymore and that's when I experimented with Kelp and Zinc. Its only been about 2 weeks and all is still well with no meds no embarrassment and can in a staff meeting not paranoid.

Jun 16, 2013, 7:21:00 PM
Anonymous said...

Zinc plays a role in supporting digestive enzymes. It is believed by some that its less about what we eat, and more about lack of digestive enzymes to properly deal with what we eat, and food sensitivities. Magnesium is thought to improve body odor as well, could be why kaopectate and pepto eliminate the odor from feces.......

Jun 17, 2013, 11:12:00 AM
Anonymous said...

Boost diet anon,

Jun 17, 2013, 11:19:00 AM
Hopefulbbbo said...

Me too! I'm sooooo happy

Sep 14, 2014, 9:01:00 PM
Hopefulbbbo said...

I feel clear and free. My eyes are no longer burning from the gasses coming from my nose, mouth and body. The smell is gone. My coworkers are looking at me as if I'm crazy for finally nit having the odor. What's in the zinc and kelp that's doing this????

Sep 14, 2014, 9:04:00 PM
Camille Pierre said...

Hello is anyone still taking the kelp n zinc combo? Does it still work for you?

Jul 29, 2015, 10:22:00 AM
Anonymous said...

Hello is anyone still taking the kelp and zinc combo. Does it still work for you?

Jul 29, 2015, 10:23:00 AM
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