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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
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at UK Findacure conf 2020

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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

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TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Sunday, May 24, 2015

Herbal Hill Deodorising Products : A new venture

Herbal Hill is a new brand of deodorising products developed by Trinzyme. The following introductory statement has been constructed by Trinzyme and The MEBO UK rep Karen, about Herbal Hill products. Herbal Hill is learning and eager to get feedback.


As it is a new venture, Herbal Hill is very much wanting to know 2 things in particular :
How much interest there is to buy Herbal Hill products ?
And for feedback  

Herbal Hill pre-order survey  : please complete the survey
It would be helpful if the survey was completed by 28 May
But it can be done anytime     

Statement :

New Herbal Hill Deodorising Products Line
Available in US/Canada
Other continents to follow

At last, we have a set of highly effective deodorising products specifically designed for our needs! After meticulous research, laboratory testing and human trials, Trinzyme has created a collection of lotions, oils and creams which combat the odorous compounds given off by members of our community, under the brand name ‘Herbal Hill’ (see link below). Although these products are not a therapeutic and will not actually cure odour conditions, they will help control the strong, offensive odours given off by most TMAU and metabolic malodour sufferers, and also should help those with a range of other body odour issues. The products have been trialed by a range of people with odour disorders, and many have commented on the efficacy of the pleasantly creamy underarm deodorant, in particular. One athlete with body odour issues (included in the trial) stated that clothes and armpits were intact and beautifully deodorised even after 4 hours of intense cardiovascular exercise! All have been especially impressed with the subtle, lingering fragrances of the products and the fact that they really cater for our needs; without parabens and containing predominantly natural ingredients such as virgin coconut oil, tea tree oil and green tea, these products will be extremely popular amongst those with odour problems and the general public alike.
The website describes instructions for the ‘average’ person.  Those with body odour issues may simply need to apply with more frequency, to find out what works for them.

These products are not based on pH, though they have a neutral pH. They have extremely strong deodorising capabilities.

There are four products currently on offer:

Underarm Cream – Maximum underarm deodorising protection. Unscented and hypoallergenic.  A small amount of cream is rubbed in to the skin under the armpit for long-lasting protection.  The cream has been reported to be useful on other patches of the body for which there are prone to sweat and odour, such as the top of the back/back of the neck and chest area, but not internally.

Deodorising body lotion – this body lotion is also highly deodorising, but with a light fresh unisex scent formulated to spread easily all over the body.

Foot Deo Cream – Especially for ‘problem feet’, this product has been formulated with tea tree oil (which is an excellent anti-fungal and anti-bacterial). The tea tree imparts a wonderful fresh scent suitable for both men and women, and has maximum deodorising protection. Rubbed in at night before bed-time to freshly washed feet, it should help keep your feet smelling and looking good throughout the day.

Deodorising Plant Tonic body oil – the plant tonic is also highly deodorising, with a fresh unisex green tea and citrus scent, suitable for everyone. The plant tonic can be rubbed in to hair and the body, and used as a massage oil as desired.

Herbal Hill Website : www.herbalhill.org
Contact Herbal Hill : via the email form on the website
pre-order survey :  Herbal Hill pre-order survey

More details to follow.

Please see the Comments on this post, 
and feel free to participate in this discussion.

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37 comments:

Unknown said...

Is this what trinzyme has been working on? Is this the therapeutic?

May 24, 2015, 3:37:00 PM
blogcontributor2 said...

Hi Steph. No it's not the therapeutic. It's something Trinzyme have been working on as a side project that may help in the meantime.

I think possibly the idea is that any money raised will go to the Trinzyme therapy project, as it needs a lot of funding.

May 24, 2015, 3:42:00 PM
Maria de la Torre said...

Steph,

Many sufferers have donated to the Trinzyme project for the TMAU Therapeutic Research, which is still ongoing. Yet, independent of this research, Trinzyme has also developed a new brand of deodorizing products called Herbal Hill after meticulous research, laboratory testing and human trials. These are highly effective deodorizing products specifically designed to help control body odor symptoms, especially with body malodor sufferers in mind as opposed to just ‘normal’ people. Herbal Hill is not likely to cause skin allergies because of its natural ingredients. These products are a collection of lotions, oils and creams for underarm odor, foot odor, and generalized body odor (not to be taken internally).

The products have been trialed by a range of people with odor disorders, and many have commented on the efficacy of the pleasantly creamy underarm deodorant, in particular. One athlete with body odor issues (included in the trial) stated that clothes and armpits were intact and beautifully deodorized even after 4 hours of intense cardiovascular exercise! All have been especially impressed with the subtle, lingering fragrances of the products and the fact that they really cater for our needs; without parabens and containing predominantly natural ingredients such as virgin coconut oil, tea tree oil and green tea, these products will be extremely popular amongst those with odor problems and the general public alike.

May 24, 2015, 4:28:00 PM
Anonymous said...

I have visited the site and there seems to be no options to buy the product. Does anyone know if these products are available for sale and if so, where can I get the products from?

May 24, 2015, 5:06:00 PM
blogcontributor2 said...

It's at an early stage but the products should be available in the US/Canada very soon. We will let you know. Other continents may take longer. Possibly on Amazon and other shopping channels.

It would help if everyone interested filled out the survey to get an idea of the numbers interested

May 24, 2015, 5:12:00 PM
Unknown said...

Sounds like a promising avenue to help raise money and of course doesn't just need to be marketed to bo sufferers but anyone can use!
Are there any other side interests if trinzyme? Or any other main interests?
I would (and will) buy these new skin products. As most of us, I'm a huge fan of trying new scents and hygiene products.

May 24, 2015, 5:37:00 PM
Maria de la Torre said...

At this time,these are the 4 Herbal Hill products Trinzyme is working on. It's not easy to get products out on the market because of the costs associated with patents, research consumables, and general costs incurred in running experiments. This is not to say that in the future, additional products won't be offered, but not in the foreseeable near future.

May 24, 2015, 5:47:00 PM
Maria de la Torre said...

Also, I would like to make clear that the total donations made to date to the Trinzyme TMAU Therapeutic Research Project of £1,266.81 = $1,960.57 has not been used for the Herbal Hill program. MEBO and the scientists are fully cognizant that it was donated for the TMAU Therapeutic project, and we respect this fact.

May 24, 2015, 5:51:00 PM
Maria de la Torre said...

Please fill out the survey if you think you are going to be interested in purchasing any of these products. Our scientist is waiting to see the show of interest for her to determine how much of the compounds she needs to purchase to create the products. So it is VERY IMPORTANT for as many people that are interested in purchasing to express their interest in the survey. The greater the demand, the lower the price, and the more supplies we will have ready for sale.

May 25, 2015, 11:44:00 AM
Anonymous said...

I have completed the survey. I really really do hope these products will be a great help for us sufferers. I was wondering will these products be of low Ph and have they been tested on Tmau sufferers?

May 25, 2015, 6:55:00 PM
Maria de la Torre said...

I will ask our scientist who developed this product for people with odor conditions.

May 25, 2015, 11:56:00 PM
Maria de la Torre said...

Anonymous, the scientist tells us that the products have been tested on Tmau and other body odour sufferers. It appears to work best on mild and moderate, and those who have a constant odour, rather than the extremely strong occasional 'burst-type'.
At the least, the products do appear to help manage the odour for many -even if it just lessens the odour somewhat. In this way, for many, it will be part of their efforts to help manage the odour issues.

They are not based on pH. The products have extremely strong deodorising capabilities.

May 26, 2015, 7:13:00 AM
Maria de la Torre said...

We don't want people disappointed. Our hope is that these will help. It is invariable that they may not help everyone at every moment, and the diet and the rest of the protocol should be maintained. This is not a cure, but rather a good support for the odor-management protocol, thus, it is invariable that they may not help everyone, and some much more than others.

May 26, 2015, 7:16:00 AM
Maria de la Torre said...

These products are not based on pH, though they have a neutral pH. They have extremely strong deodorising capabilities.

May 26, 2015, 8:22:00 AM
Anonymous said...

Thanks for the quick response Maria. I'm looking forward to trying these products out. One last question if you don't mind answering.. Are the profits going towards the ongoing research?

May 26, 2015, 1:40:00 PM
Anonymous said...

I would probably purchase the product and see how well it works, and if it works well, then i'm with it, but if not, then i would discontinue the use, also, i would like to think that these products would only mask the odor problem, i think we need to get to the sources of the problem, and thats within, because that seems to be where it originates. I'm willing to try anything one, but if its a waste, then i will discontinue it, and just wait for the internal approach.

May 26, 2015, 4:58:00 PM
Anonymous said...

The website has 'buy now' button but no registration form. Do they do delivery to UK..?

May 27, 2015, 5:08:00 AM
blogcontributor2 said...

Re Are the profits going towards the ongoing research?

My understanding is that the idea is that Herbal Hill will help in funding ongoing research but I am not sure yet. I'm afraid I don't have precise details. I will get back to you.

May 27, 2015, 10:03:00 AM
blogcontributor2 said...

Re The website has 'buy now' button but no registration form. Do they do delivery to UK..?

I think they are trying out the paypal button just now, so it's not officially 'open'. I think currently it can only be used by US accounts as there are a few regulations to take care of in the UK.

May 27, 2015, 10:05:00 AM
Maria de la Torre said...

Sorry for the delayed reply on my part. Once the program is in a profitable state, part of the proceeds will be used for the ongoing TMAU therapeutic research. However, the program must get off the ground, and that requires investments, which much be taken care of first before it gets to a profitable level.

May 27, 2015, 6:20:00 PM
Maria de la Torre said...

Unfortunately, this product cannot officially be sold or distributed in the UK or Europe because of regulations. We still have to wait a while longer before we can. If possible, perhaps some may be available at the meetup in London in July. Currently, all efforts are being made to follow regulatory process to be able to sell and distribute in the UK and Europe.

May 27, 2015, 6:28:00 PM
Maria de la Torre said...

Basically, EU regulations are much more stringent than those in the USA and Canada, and therefore, these products are not yet available for purchase in the UK/Europe. All necessary measures are being taken to deal with EU regulations so that it will become available to all.

May 27, 2015, 6:31:00 PM
Anonymous said...

I see today that the pay now option is available with registration and payment. Is this correct for those of us in the US?

May 27, 2015, 7:29:00 PM
Anonymous said...

Thanks to both of you for your replies. I guess the UK people will have to wait little longer. We waited most of our lives so I'm sure we can wait few more days :).

May 28, 2015, 6:30:00 AM
Anonymous said...

These products will be good for the time being until the cure is found. Having said that, even if these products do help people manage their odour, the researchers still shouldn’t stop for in search of a cure. Because only after a cure people can live a normal life without any restrictions. These products may help the body odour but there’s still the question of the breath.

Also, I feel people should still contribute towards the research fund even if it’s as little as $£1- $£5 when they can. If we get more funds then surely the research will continue without delay.

May 28, 2015, 6:56:00 AM
Anonymous said...

my problem is, every pharmaceutical company says that they can do this and they can do that, but if u don't get to the root cause of a problem, we will forever be dishing out dollars after dollars like i am right now on things thats not working, i'm not here to make anyones pockets fat, i'm here to find something thats going to work for me, and i mean not mask my situation, but get to the root cause of the situation, u can come out with all kinds of products that will mask a situation, but if it doesn't get to the root cause of it, then masking it will only break your wallet, because u have to continue doing it over and over and over again, we need someone to get to the root cause, and give us what we need...sorry but this has gone on way to long without someone having something.

May 28, 2015, 3:53:00 PM
Maria de la Torre said...

Hi Anonymous. It is precisely because all sufferers, including myself, feel as you expressed here that MEBO was created. Some sufferers decided to take action and proactively pursue research for proper diagnosis and treatment for each and every type of odor condition. You are welcome to join us in taking action and proactively do the same. You can refer to my introductory letter that I wrote in April 2008, in which I express the same thing you are expressing. I just had enough of not having the opportunity to have a thorough diagnostic process available to me and other sufferers, having only one TMAU odor-management protocol that doesn’t work for everyone, with no significant research in sight that would give us any real hope for the near future.

With many volunteers throughout the world, MEBO stood up in only a matter of a few years, raised awareness, and supported in a very proactive way the launching of new research to design a lasting treatment and hopefully a cure. You are encouraged to also take the initiative, as many sufferers have, of finding concrete ways to find the proper diagnostic process, treatment, and cure. Please feel free to give a concrete strategy of how you personally can help accomplish everything you are asking for.

As we’ve been told, the current Trinsyme research program will take a few years to come to a decisive conclusion, and hopefully to provide sufferers with an effective treatment. In an effort to help sufferers reduce their symptoms during this wait time, one of the scientists involved in the TMAU therapeutic research put together a few products, Herbal Hill products, to help sufferers in controlling their symptoms until the big research project is concluded.

No one is persuading sufferers to try them, or to regularly use them, and sufferers are most certainly not obligated to do so. It is a personal choice.. However, those interested now have an opportunity to try these products to see if it works for them as it did to many in human trials that took place in the UK. Even so, our primary focus and hopes lie on the UK research for a TMAU therapeutic.

May 29, 2015, 5:56:00 PM
Anonymous said...

I just ordered a product from the Herbal Hill website. The Paypal link functioned,
to my surprise, so I ordered the body lotion! I hope it will actually be shipped--by the way, the shipping cost was over nine dollars. If the lotion helps of course it will be worth it.

Jun 4, 2015, 2:55:00 AM
Anonymous said...

I just received my products in the mail today. The products I ordered were the body lotion and underarm cream. I put a little bit of the body lotion on my arm to see how it feels and it's very fluffy and has a nice scent. Not sure about how well it works for odor control- obviously because I have yet to wear it out and about on a stinky day...I will update though if anyone wants to know. It actually got here sooner than I thought it would. (I'm in the US)

Jun 8, 2015, 8:53:00 PM
Anonymous said...

When did you order it? I ordered 11 days ago.

Jun 8, 2015, 11:48:00 PM
Anonymous said...

I ordered mine June 1st and it got here last night. I would think yours wouldn't take much longer? Do you live in Australia? Maybe that's why?

Jun 9, 2015, 11:51:00 AM
Anonymous said...

No I live in Florida. They said it was sent out on June 1st. I guess I am just anxious. It didn't come today so hopefully in the next two days. I hope they don't have to resend it.

Jun 10, 2015, 1:25:00 PM
Anonymous said...

By the way how was it shipped to you: US postal, UPS, FEDEX, DHL ect.

Jun 10, 2015, 1:48:00 PM
Anonymous said...

Okay, I did finally get the products today. Will comment later how effective they are for me.

Jun 11, 2015, 1:29:00 PM
Anonymous said...

Sorry, I wasn't on here for a couple days. Glad to hear you got yours! :0) I'll check back and see what you think of the products and commenting about my experience as well. Crossing my fingers that we find them very helpful.

Jun 13, 2015, 12:22:00 AM
Anonymous said...

I think this is great news for the TMAU community to have these products, I have ordered two items so far.

Jun 21, 2015, 6:57:00 PM
Anonymous said...

Delivery to Australia possible?

Jun 24, 2015, 6:42:00 PM
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