Bad Breath Halitosis Forum

My main symptom before my tmau diagnosis a year ago was bad breath. I had already done loads of diets but none as harmful as the ones I have tried to do since my tmau diagnosis.

I don't want to scaremonger but I'm seriously worried about the fact that tmau sufferers are given a sheet with a list of low choline foods which we try to follow and, for those of us whose odour is stubborn, we end up eliminating virtually everything to the extent that we could cause ourselves damage later on in life. I have read that non-tmau sufferers using this site also restrict their diet excessively.

I read an article by the UK's Duchess Camilla which explained that people following restricted diets can start off the beginnings of osteoporosis. Her mother died of osteoporosis. I didn't realise this disease was potentially lethal! Her poor mum had osteoporosis so badly that she was too bent over to eat or even breathe properly. She died in agony. Camilla was upset by the ignorance and dismissiveness of some of the doctors she dealt with so she has started to raise awareness of the importance of a balanced diet to avoid this condition.

I imagine/hope everyone takes calcium supplements already but I would still urge people to not restrict their diets too much. My chiropractor advised me to take fish oil, even if it worsened my odour, as he thought I was lacking in these. I have been taking Higher Nature Organic hemp seed oil for a week (not brave enough for fish oil yet) as I am off work. I feel much better for it. It makes sense; if we don't give our bodies the fuel they need to work properly then many processes and functions will be jeopardized as a result.

Even if we find an improvement in odour with a restricted diet, I don't think it is good to restrict our food intake excessively. Taking supplements may not even guarantee our health; some vitamins/minerals can be difficult to absorb in tablet form, I think. I know it is hard to absorb iron unless you take vitamin C simultaneously, for example. I don't think we should simply eliminate foods from our diets. We need more signatures on that MEBO RESEARCH PETITION to ensure our views get heard and research gets done. I can just imagine a teenager with tmau restricting their diet to 3 or 4 foods on that diet sheet and doing harm to their bodies in the long term. I know that women who opt for hysterectomy (to decrease their odour at menstruation time) also increase their chances of developing osteoporosis.

I've said it before and I'll say it again: restrictive diets can be harmful. The tmau protocol needs to be questioned.

Before diagnosis a year ago, I was healthy but smelly. Now I am unhealthy and smelly. Be careful everyone with following diets. Our health is a gift and tmau, bad breath or body odour should not get in the way of that. We already have enough to deal with!

...I know exactly what you mean by healthy but smelly because the exact thing happened to me, the first thing that wakes me up in the morning is the pain and it is constant...in past I was hardly feeling the pain in my knees...sometimes I wish I that I never wake up again because I cannot bare it anymore

malory wrote: Before diagnosis a year ago, I was healthy but smelly. Now I am unhealthy and smelly. Be careful everyone with following diets. Our health is a gift and tmau, bad breath or body odour should not get in the way of that. We already have enough to deal with!

So the tmau diet is no longer curbing the odor ?
I think there is a Lot that is misunderstood about our situations . Personally , I no longer believe that we need to eat most of the food we are told we should for optimal health . A Calcium supplement has caused my Mom to have worse bone issue than without them .

I see what you're saying Malory . Many of us though may not have a good support system of family , friends, work,,etc to make us feel socially acceptable when we are odorous . For many of us ,as bad as it sounds , the odor can take priority over everything due to the massive stresses it creates in us. Catch 22 ? Yes ,This whole thing is a delicate balance for most of us .

The other day i was thinking about someone with BO/BB seeking counseling for the stresses it creates . How difficult if would be to do this. The counselor/shrink would be in discomfort . The person getting counsel would constantly be thinking about the discomfort they are causing the counselor . Another catch22 .

The balance is in the lessor of 2 evils i guess for each of us. If my diet causes me to be 20% less healthy but curbs 80% of my odor ,i'll take that route . If its more like 80% less health for only 20% less odor ,you're right ,thats not feasible . In either case ,periodic checks should be made , as well as more research .

My last check the petition had 260 signature . When Jimi says he may close this site ,I joined the mebo forum & breathandbodyodor board and found it to be very sparse . Love to see more support out there for us . More pasting that petition link all over the place . 50,000 is a long ways away .

hi Deebo

I have never curbed my odour with diet. I only know that eating many/most foods makes it much worse. for this reason I stick to raw vegetables when at work.

sorry to hear about your mum! Maybe supplements can be more harmful than we realise. It would be good if we could eat healthily and get all our nutrients from our food but. .

Counsellors - I've seen 3 plus one cognitive behaviour therapist and one hypnotherapist. I never held back at all because I reasoned that it was part of their job so tough luck if I stank. What's more, they all said I didn't smell (one of them was blatantly lying) so I figured 'well if that's your line, then let me play along and act as if I don't'. Being more relaxed may have reduced my odour but, on some occasions, I am sure they lied.

Although the MEBO RESEARCH CHARITY is well established, the MEBO forum is new so, as you say, still sparse. Let's hope more people sign up. We shouldn't have to self-harm in an effort to have normal lives.

http://www.bloodbornebodyodorandhalitos ... nding.html

Clara, I've just read all your earlier posts so I can understand your torment. I wish you were in the UK so we could meet but i believe you are in Sweden. I am horrified to hear of your suffering. It sounds like you should focus on getting healthy and not even think of bb for a while. You need to get yourself strong physically and mentally before you can battle bb.

I've found very minimal relief from elimination diets throughout my 14 years with bb. The most useful things I find now are;
relaxation (yoga); limiting interactions and eating a more varied diet on my days off work and meet-ups with other sufferers.

During the last TMAU meet-up a few of us went on a crowded tube/underground train to go home. I would never have been brave enough to get on a crowded train on my own but I felt safe with these friends and made myself relax. Nobody reacted to any of us and we did talk a bit as well. Now, whenever I have to get a train or bus which is crowded I think of that moment and visualise it strongly and tell myself 'I got on a crowded train once before and I didn't smell. I didn't smell because I was relaxed and felt safe and with friends I could trust. I did it that day so I can do it again today, right now, because I am in control and, even if I do smell, this moment will pass...' Counsellors can tell you positive phrases to repeat to yourself or do guided visualisation techniques with you but the most powerful tools I have have been given were given by fellow sufferers. The most powerful phrase for Neruo Linguistic Programming is simply: THIS IS NOT MY FAULT and THIS MOMENT WILL PASS. True, the difficult moments will be repeated constantly and this is tiring for us but these moments are not all we have.

I wish you all the best in getting healthy, Clara. Look after yourself. Please get in touch if you are ever in London.

And sign up if you haven't already:
http://www.bloodbornebodyodorandhalitos ... nding.html

@Malory
Thanks for your advice.I really felt better reading your comments...yes, I am both physically and mentally in bad condition.I agree with the meditation, lowering stress helps with body functions though it is not easy when you are jobless and having bb and pain all day but I do my best to stay calm.

I am currently taking several herbs daily and believe that they are helping with the smell, I am trying to add one cooked meal every day including veggies or potatoes to make my stomach get used to cooked food again. I am somehow limited because I am living in a shared place , I do not have my own kitchen or other stuff and also searching for a job and a house and studying for the exams with zero money makes all the things complicated for me.

That is great that you have met with other bb guys, I wish I was there...

In light of the dangerous diets people are following in desperate efforts to cure themselves, I am going to target the British NPSA led by Sir Liam Donaldson (former Chief Medical Officer in the UK), to ask them to examine the safety of the treatment protocol/dietary advice presented to TMAU sufferers.

The NPSA consists of:

National Research Ethics Service which protects the wellbeing of research patients within the NHS and
National Reporting and Learning Service which aims to reduce risks to patients receiving NHS care.

With this in mind, our slant should be about concerns regarding the TMAU treatment protocol itself and the need for further research to be carried out. Obviously, we are not criticising the doctors who treat us or expressing distrust in them. We are merely raising questions about the treatment with a view to instigating further research.

Even if you manage your symptoms safely, consider the young child/teenager who:
a) will wander around undiagnosed for who knows how long, thus risking their mental health
b) when/if diagnosed with TMAU, will be more susceptible to restricting their diet to an exaggerated degree thus causing damage to the body.
c) will need to take repeated antibiotics for the duration of his/her life (70+ years!!)

Knowing that Sir Liam will be sympathetic to our overusing strong antibiotics such as flagyl/metronidazole and Neomycin, I suggest we raise these concerns. I also think we should mention the risk of s*****e/mental illness in those individuals whose doctors are unaware of bloodbourne/systemic breath/body odour conditions and, not only fail to diagnose TMAU, but insist their patients have halitophobia/olfactory reference syndrome etc..I also think we should mention the fact that restricted choline intake can lead to a nutritionally deficient diet which can cause irreversible damage to people's bodies - osteoporosis and the like.

SO, ON 28TH NOVEMBER, AS WE ENTER THE SEASON OF GOODWILL TO ALL, LET'S E-MAIL OUR CONCERNS ABOUT THE TMAU TREATMENT PROTOCOL AND EXPRESS THE NEED FOR FURTHER RESEARCH AND AWARENESS.

The address is: [email protected]
Letters to : Sir Liam Donaldson, 4-8 Maple street, London W1T 5HD.

(Anyone is welcome to join the campaign, regardless of tmau diagnosis or not. We use the TMAU treatment protocol as a starting point but any research/awareness which results will affect all malodour sufferers.)
If you would like me to send your letter together with some I already have, as a group, please PM me for e-mail address.

Mal . You GO !! Should we send emails on the 28th ? If so I will try and add a note in this sites calendar . What you're saying about our current understanding of diet and its many pitfalls either way is on point . I'm getting some of the worst reactions Ever in the past days . The body adapts and rebels i guess. I for 1 am with you and will push for my Dr's to get IT together for our Long term heath . I'm going to the Dr in a few days on my own dime .I'm positive but I really anticipate more cluelessness by Dr's as we all have seen . Gonna try and stay in the Doctors office as long as i can to get the point across how odor needs attention and deep research .

BTW , what type of Dr would one see for TMAU or other chronic odor ?

Thanks for the reply and the enthusiasm. So glad to know I'm not talking to myself!

Yes on 28th November we can all e-mail, from wherever we are and whatever our condition as long as our message is unanimous and clear: experimenting with restrictive diets to cure any odour condition can be harmful and repeated antibiotics are also harmful.

MEBO Research will have more info about the type of doctors people with BO see. I've seen gastroenterologists etc. but for all the help I got sometimes, I may as well have seen the canteen supervisor!