Hi

I listened in on some of the conference call today for about an hour and I think the idea of having a generic questionnaire for people with TMAU and other undiagnosed odour issues would be real progress in terms of research and finding a cure.

Arun – what you had to say today was really informative. I think I mentioned before that I recently had a follow up appointment after my TMAU diagnosis and the consultant mentioned that he would be interested in compiling feedback from his patients to document individuals’ symptoms and effective/ineffective diets/supplements.
His details are: Dr Lachman, Charles Dent Metabolic Unit, National Hospital for Neurology and Neurosurgery, UCLH in London. I can contact him this week and ask him about what type of data needs to be included. Do you think it might be useful to also distribute the questionnaire at testing clinics?

Mpdela – I love your idea of providing a united forum for everyone. I know that you, Cabel, Arun, Sandy and many others have been instrumental in sharing information through different media and I totally appreciate that there is already so much info distributed on the various sites.
I think like a lot of people, I hadn’t heard of TMAU until I read about it online after a bit of googling and there seems to be a wealth of information and misinformation :) but although there are some great sites out there like MSN, Yahoo and Curezone, it would be amazing to have one cohesive resource which would consolidate information from a variety of areas and inform at an international level although I do agree that it is important for the existing sites to provide a more personal support forum.

Do you think it would be possible to also include some of the following on your blog or if not maybe we could post it on any of the other sites if that's more appropriate. I’m happy to help to compile some of this:

• A link to the USDA Database for the Choline Content of Common Foods but also a separate database containing information on the choline content of food by portion rather than per 100g. I mentioned this to my nutritionist and she said she’d try and find out about this and she’s currently working on a new diet sheet
• A downloadable list – which people can update - of which food additives and preservatives should be avoided - including a list by brands of foods which are low in choline or don’t contain additives and preservatives
• Recipes/diet plans for low choline nutritional meals – I’ll post the one I get from the clinic. I’m happy to compile a spreadsheet of this but it would also be nice if people could add their own to this as well
• Regimes which people have tried and tested. I really found the info you posted before about your son’s diet plan and medication so helpful - and all the other advice that others have shared
• Links to suppliers of effective dietary supplements and PH balanced hygiene products by geographical area

It would also be great so see information for friends/family on how best to provide support! I agreed with everything you said before about this being recognised as a medical condition and I think it’s really important to educate other people about this as well as ourselves. I do think it would be useful to have a resource on advice for employers. I know Sandy mentioned that it’s better to speak to HR and co-workers upfront but I think it would also be really helpful to have some kind of documentation IN ADDITION TO THIS if only to assure HR/colleagues that this condition is a result of illness and not poor hygiene and that we’re not a health hazard! I didn't get to here Cheryl on the call today unfortunately as I couldn't stay on for that long so I'm not sure if this information exists already.

Anyway I just wanted to thank you all again for your efforts. It feels like there’s a lot of positive action going on at the moment! :)


Arun and others in the UK - I think a UK call would be great. I’ve had a look online and found the following links:


http://www.powwownow.co.uk/



http://www.conferencenow.co.uk/overview/index.html


I think they’re both about 5p/minute which is cheaper than BT MeetMe but there may be other ones available – or Skype?

Best wishes

Marx

Mpdela,
Firstly, sorry for not replying earlier. I started a new job on Monday after a 4 week holiday and have come home tired each evening and crawled straight into bed!
Wow, you have been reading my posts so earnestly, how flattering! Gosh 25 months! I didn’t realize I had been away so long.

Mpdela, I do like your idea of a Blog and would be happy to provide a scientific input to ensure that our efforts are not in vain. I did create a questionnaire on the Yahoo Trimehylaminuria Group site but think you have the wrong site address. Try the following link instead:-


http://health.groups.yahoo.com/group/Trimethylaminuria/database


As you can see, the questionnaire is in 2 parts. Ideally, I wanted these to be combined into one table but anyway this questionnaire just serves as an example of the type of questions we should be asking. As you can see, not many people bothered to complete the survey.

Also, a guy called Ben has produced a table for Body Odor sufferers on his site. It lists what people have tried and its effect:-


http://health.groups.yahoo.com/group/bodyodorgroup/database?method=reportRows...


A Group specific to breath odor have also produced a questionnaire/survey for their group and this has been completed already by it’s very diligent members. I think we should draw on their experiences by first talking to Jimi and Larc on the following message board:-


http://www.badbreathhalitosis.com/phpBB2/viewtopic.php?t=1202


We may want to expand the input of the blog to badbreathhalitosis.com so that we have 4 groups represented (MSN, Yahoo, Curezone and Badbreathhalitosis). It would be amazing if this combined effort by all the odor groups succeeds in uniting the 4 forums.

What do you think mpdela? Should we consult our brother Groups and ask them if they will work with us to achieve this common goal?
Arun