Trimethylaminuria (TMAU) Community

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Cure for Secondary TMAU? - Kelp and Zinc?

Hello,

I am 16 years old (17 next month) and I have had secondary TMAU for six months (Sept. 2016) Now that may not seem like a long time to you, but top that off with the stress of being in school, extracurriculars, and graduating next year.

I feel like I cannot take this anymore. It has changed my life for the worse and I don't know what to do. I have tried everything from chlorophyll, lemon, acv, (mostly topical underarm stuff), topical acne medication (w/BP 10%) and I even switched to natural deodorant because I thought that would solve the issue. (Even more stuff. My list could fill a book)

Alas, It didn't. Here I am, still sitting at my desk writing to you guys about my struggles with TMAU. I do have one question though. Since I do not have PRIMARY TMAU, have you found a cure for SECONDARY TMAU yet? My odor seems to be ranging from onion, urine, fbo, and sometimes an odd fishy smell when I wake up in the mornings.

Like you, I have good hygiene. I take a shower twice a day. Once in the mornings and once at night. Sometimes, I take up to three showers per day because having TMAU has made me super paranoid. I have already been to my doctor and she prescribed me with Drysol which made my underarms red (for the thousandth time).

I know that one user on here, Smiley has tried kelp and zinc and that worked for her. I would like to know what you guys have tried and what works for you. (I will be trying zinc and kelp and will post the results)

Hopefully I didn't rant too much. I feel so depressed right now. Thank you so much for all of your comments. Stay strong

God bless you all. We will all get through this. :)

-S

P.S: I haven't exactly had this for thirty years like some of you have, but I do know your struggles. Trust me, I've been there (and I still am there.)

*virtual hug*

hi sophia. I'm just new here and also have secondary tmau it started with me around my 18th year, I am quite discovered that perfumes deodorants, scented shower gels smell rather strengthened than resolves, I'm going to start with a low choline diet fragrance free pH neutral conditioners from neutral and active charcoal (Norrit) you also have stuff to sweat some five days to work syndeo, do not give up and try despite your problems, smoky

So you have taken the test for TMAU? If you have nt gotten the actual diagnosis I would just take the test to know for sure. Do you feel the odor gets worse based on the foods you eat? Do you have any other health problems besides odor? As far as deodorant I think the all natural baking soda based one are really good! I personally use smitch deodorant the fragrance free one. Maybe you have an increase bacteria under your arm try washing with Hiblicens in combo with your fave body wash and the. apply a baking soda based deodorant. Also add a really good quality probiotic for a couple of week and see where your at. Let me know how it goes
jackiemerie478@gmail.com

Hi Merei478,

I have not been tested for TMAU, but I'm thinking it might be bromhidrosis. I can only smell myself in extreme cases which is when I sweat a lot of do not take showers. I do have this urine smelling BO that will not go away. I did have a kidney stone at the age of ten, so I am coming to the conclusion that I might not have TMAU, but bromhidrosis. Why do I smell like urine though? What does this mean?

I have washed with Hibicliens and used baking soda along with Schmidt's in Rose + Vanilla and they did not work, bit I am willing to continue with Schmidt's.

Since I am so young, I have come to the conclusion that this might be a hormonal problem and bromhidrosis. What could lead to my BO smelling like urine though? This isn't right. I am very confused. Sorry for so many questions and theories. If you have any ideas, that would be great. I definitely have urine smelling BO coming from my underarms.

-S

Try just getting the fragrance free one. Sometimes depending on our body chemistry or internal issues some scents just smell worse on us. Yes you are very young and hormones may play a role. Did you tell your Dr to just check your kidneys again? Can your family smell it? They can come along wit your DR and just reconfirm that there is indeed an odor. Maybe see an endocronologist to see if they can help balance hormones. Also of course try getting a good probiotic. Maybe also try apple cider vinegar for your kidneys.

Also get tested for tmau to just rule it out. Just to get that out of your head that you have it, It can mess with you no knowing for sure. I am still awaiting my results and i took the test in feb :(
Do you have a strong odor downstairs when you pee? You may just have a UTI.

I have been to my doctor, but she just perscribed me with Drysol which irritated my underarms. My Mom and sister claim they cannot smell me but they always make sniffing noises when they are around me. I have used ACV on my underarms but not for my kidneys. I will try that. My family thinks I am crazy and they say they cannot smell anything.

Fragrance free sounds like a good idea.

Thank you for your help. :)

-S

You welcome! Also remember the probiotics! :) I feel like everything starts at the gut! Please let me know how it goes! Urine is not a normal scent and I am sure your mom knowing your history with kidneys I doubt she would lie.

Ah, yes! I just saw your last reply. In fact, I do have a very strong odor "downstairs". This is why I thought that I had a kidney issue. Someone also told me that I smelled like urine. I thought about having a UTI, but I didn't want to self diagnose myself. My urine smells very strong when I pee. Sorry for the TMI.

I had something similar happened to me where i smelled very strong downstairs and got a comment stated that it smlled like chloline( I assumed she meant ammonia) I did get diagnosed with UTI shortly after and got on antibiotics and then got on probiotics and no issue with my urine or private area at all! I still tested for tmau during that time. I still get reactions with sniffling and coughing but they have honestly lessoned. Maybe also try drinking alot of water and have drs. check your ammonia levels.

What brand of probiotics do you use? I just ordered the 'Garden of Life' 50 billion probiotics for women on Amazon. Did your TMAU symptoms lessen?

I use these. They are really good.
https://www.amazon.com/PB-ProBiotic-Acidop...

I have nt been diagnosed with TMAU but I felt like it helped so much with my odor in general. I got it originally because I heard Acidophilus is super good to prevent UTI and overall vaginal health and I can attest to that as I did get checked for a UTI again as a precaution and nope i didnt have one. I really like this one though so if you ever want to try it, its not too pricey either.

if you buy acidophilus you need to put in frigde right away as the longer out if you get the right kind...it will start not to work.....also 50bilion is not enough you need 145billion 2/3 times a day therse are speailist probiotics and do cost money.....but again can help.....;.)

Yes I put mine in the fridge. And I feel like as long as it is in the billions it is fine. It takes a couple of weeks/months to start seeing results.

yes best way so many things will be needed buts def one of them.....what others things do you take?

Probiotic is it. I had a severe allergic reaction to chlorophyll it catapulted my odor and severely messed up my stomach. I took it back on Dec and my stomach is still not the same but it was so much better than before. Will be seeing a specialist soon. I also took a tmau test in feb, still waiting for my results. I ve tried a lot of stuff tho like charcoal, digestive enzymes, acv, just zinc alone. But I didn't see much of a difference at least not like how well the probitoic worked.

Thunderstrike I am curious how you arrived to that particular number - 145 billion CFU?

Some probiotics like PROGURT or Optima etc are sourced from HDS (human digestive strains) and are not soil based or plant based. HDS are naturally occurring in the gut microbiota. Progurt claims that you will get 1 trillion CFU per sachet or capsule. Please go to progurt.com to learn more about their products. It is quite pricey though.

You have tried it?

hi yes there are spieal porbotics by ferring the company that has 145billon live strains in it they recommend 3 a day its very costly but combineing it with treatments and diet could help slow or possablie trate this illness no garants that it will,,,,

MEREI478 I did not try progurt because it is expensive. If you go to their website, they offer at least 3 different kits. One kit has a yoghurt making machine in the package. I know I can't afford it.