any suggestions? 
#151025
11 y
2,086
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so again i still have the smell and i went to the gyn for an exam everything clear ph 4.2 no yeast or bacterial vaginosis stds. Im out of ideas for what to try. i use wipes after i go to the bathroom, spray some stuff and put tons of powder all to no avail. i dont want to be so lonely anymore, this really sucks. noone wants to hang out with a smelly person to be quite frank. my bloodwork from the gp also came back normal. even if i use hibiclens peroxide whatever the smell is still there. i took probiotics, liquid chlorophyll, chlorohpyll tablets, magnesium, devrom, activated charcoal followed the protocol on mebo for tmau with the vit b2 as well. i tested negative for tmau by a long shot from mebo. at least if i knew what was causing it i could treat it.
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- Re: any suggestions? BhsiahRD
11 y
1,899
This is a reply to # 2,035,976I have the same problems. I wish l knew what to tell you but I don't even know how to help myself. I keep trying different stuff and nothing works. I'm just super depressed and feel suicidal. If you ever find out something that absolutely works , let me know. Good luck and hang in there, someone somewhere has gone through this and has the answers we seek. We just have to wait.
- Re: any suggestions? hadenuff29
11 y
2,192
Cure Bad Breath!
Herbal cure for bad breath
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This is a reply to # 2,036,020Juice fasting or Water Fasting regularly for a year, followed my multiple colonics and colon cleansing. Regular probiotics and a mutli vitamin and some enzymes. Thats your answer, you really need to quit wasting your money on quick fix products. Those people prey on people like us. You need to be patient and start treating the body holistically. In a year I'm telling you now you'll be much better off for it.
No one will ever ovecome this in a week or a month, it takes time to repair the damage and get the body functioning correctly.
Beleive me I have tried it all, Fasting is the best thing we can do.
Good luck
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- Re: any suggestions? BhsiahRD
11 y
1,779
Cure Bad Breath!
Herbal cure for bad breath
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This is a reply to # 2,036,023Do u have info on how to get started on these fastings? When I try to fast I get a headache and not a small one either- Re: any suggestions? BhsiahRD
11 y
1,733
Cure Bad Breath!
Herbal cure for bad breath
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This is a reply to # 2,036,209You can't blame ppl for trying to help themselves no matter what they try! This condition can cause suicide because of all the shame and humiliation it brings . I will try damn near anything to be rid of it
- Re: any suggestions? BhsiahRD
11 y
1,733
- Re: any suggestions? #151025
11 y
1,781
This is a reply to # 2,036,023Hello
My point to the whole "cleanse my body through juicing and fasting" is this i was born smelling, thats probably the freshest my body has been. i do see a point in that maybe certain foods are contributing to the odor, like maybe dairy or fructose or something if i had that specific food digestion problem or allergy. i have tested negative for all food allergies from my naturopathic doctor. however starting today im starting to try cutting out dairy for a week. do you recommend eating 80% vegetables and fruits and 20% organic chicken, nuts and legumes, what is your regimen? Thanks
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- Re: any suggestions? zulu
11 y
1,771
Cure Bad Breath!
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- Re: any suggestions? badluck beauty
11 y
1,852
This is a reply to # 2,036,530Answer: It's not living I asked the same thing on this forum along time ago...
Honestly I don't care what yall say cleaning up your diet doesn't work for everyone especially people who were already vegetarians...
- Re: any suggestions? badluck beauty
11 y
1,852
- Re: any suggestions? BhsiahRD
11 y
1,779
- Re: any suggestions? hadenuff29
11 y
2,192
- Re: any suggestions? zoogirl020
11 y
1,848
Cure Bad Breath!
Herbal cure for bad breath
Fast and Painless Constipation Relief
Oxygen Bowel Cleanser
Hulda Clark cleanses
Wormwood, Clove, Clarkia, Turmeric, Epsom Salt, Uva Ursi, Goldenr...
This is a reply to # 2,035,976please read my post about the elimination diet. again, you are not alone. i have been on this boards trying to get a skype group, or a private fb group but honestly, no one wnats to support each other. to get well we also need to feel well mentally. and being alone, feeling alone.. only gets you deprssed.- Re: any suggestions? badluck beauty
11 y
1,855
Cure Bad Breath!
Herbal cure for bad breath
Fast and Painless Constipation Relief
Oxygen Bowel Cleanser
This is a reply to # 2,036,030there is a support group on Facebook.... I don't know about a Skype group... but i talk to a couple of people on Skype though...
- Re: any suggestions? badluck beauty
11 y
1,855
- Re: any suggestions? WanderingWinter
11 y
1,898
This is a reply to # 2,035,976Hey - I'm new here but thought I would reply because I know exactly what you're saying. I've suffered from this embarrassing condition for about 18 years and it sucks. When I first started getting teased at school, I went straight to the doctor to get tested for BV etc, but there was nothing wrong with me. I was too embarrassed to pursue it any further.
I've only just become really proactive in the past year after doing a lot of research online and finding out about TMAU and the like. I went to a couple of doctors last year - one did a whole bunch of bloods and found nothing wrong and another laughed at me when I told him that people make my life hell because I supposedly smell like dead fish - neither doctor could smell anything. Neither can my family or my partner (he thinks I'm imagining it) or one of my lecturers at university who I talked to when I was at my wit's end. Like you, I've tried all the usual measures like charcoal, chlorophyll, b2, probiotics, ph balanced soap, avoiding too much choline... nothing seems to help.
I've found that my anxiety is a major trigger - I don't sweat but I start to feel hot and panicky can kind of feel this aura of panic surround me. :-/ Obviously, never knowing if I stink or not is a huge anxiety trigger. I'm going to try and build up the courage to see yet another doctor and see if they'll prescribe me some anti anxiety meds and see if that will make a difference.
You're not alone. :) I hope so much that a cure is found for this in our life-time - I can't imagine living the rest of my life being ostracised for something that's not my fault. If people only knew how hard we try not to offend their senses with this issue, I wonder if they'd be any more compassionate.- Re: any suggestions? draheraw
11 y
1,873
This is a reply to # 2,036,047Hi WanderingWinter I can feel and relate to your frustration because of the foul odors that come frm our bodies and breath. I like you do not want to offend others with the smells that come frm my body. And it's even more of a concern because of my christian training, background, and the organization that I belong to. The God that I worship and belong to lovingly reminds me through His Word, the Bible, not to offend others with my words and so how much more so with offensive smells! However, WanderingWinter as you and I and others know, these offensive odors are no fault of our own. Chronic BB, BO, TMAU and the like are a way of life with those suffering from this terrible disorder. All any of us can do at this point is keep searching for ways to reduce the odors that we have. Who knows in this system of things in which we live, there may one day be a cure for this "thorn in the flesh" that we have concerning horrific body and breath odors that "seem" to be out of our control.
In the line of spiritual activity that I engage in, it is paramount that I continue to look for ways to keep my odors at bay, because I'm around people all the time.
I've found something that works for me and that is the drinking of black tea (Tetley's Premium British Blend Black Tea). I've also included Dannon's Activia lowfat yogurt in my "arsenal" to relieve or alleviate the embarrassing odors that emit frm my body and that can literally fill a whole room. These two products along with a simple balanced meal plan has tremendously reduced my odors. I truly have my life back thanks only to my God and Friend, Jehovah....I know one day soon, terrible disorders and diseases like what we endure and suffer with will be no more (Isaiah 33:24; Revelation 21:4,5)...Also, if you would like to know how I go about using black tea and activia yogurt I will be happy to share that information with you.
- Re: any suggestions? draheraw
11 y
1,873
- Re: any suggestions? danielxmiller
11 y
1,881
This is a reply to # 2,035,976I'm from the peeling lips forum, so I don't have this condition...but I did do some things before to myself that have improved a lot of the smells on my body. I don't know if it will help you or not, but you're welcome to give it a try...
I became a very natural person about a year and a half ago, and stopped using all commercial cleansing products. In fact I don't use any type of soap/shampoo at all in the shower. I was scared at first, but after talking to a lot of people on facebook and drmomma.org I realized all of the products are actually really bad for you, and we never used them when we were first on this planet, let alone just a couple hundred years ago.
Have you tried JUST using water to rinse off in the shower? Eliminating EVERYTHING except an all natural tooth paste? I find the more products you use, the worse it gets, like when I tried to get rid of acne. My Acne didn't clear up until I STOPPED using all these Acne products. It sounds really crazy, but it makes sense in my mind now...yes I do still use a deoterant (I get it at whole foods, it's the JASON - Aloe Vera brand). This may take a while before your body normalizes itself from all of the chemicals in the cleansing products you've been using, but it just might help.
Also I'm sure your diet is playing a role in it as well...and quite possibly the water you are drinking. Bottled water isn't good for you and the best option right now appears to be water that is filtered on the sink (keep in mind your skin absorbs water in the shower as well so a whole house filter would be ideal but expensive). If you can find a natural spring that is THE BEST water in the world http://www.findaspring.com
I still haven't had the chance to get to one, but I plan on it soon.
I wish you the best, and just keep in mind there are SO MANY conditions out there that people don't realize, my lip condition for example...not fun :( if you want to take a look at my condition and what we are doing to find a cure go to http://www.cureforpeelinglips.com
...once you band together you will find an answer.
Hope this helps you a little bit, my friend.
-Daniel- Re: any suggestions? draheraw
11 y
1,658
This is a reply to # 2,037,003Hi danielxmiller, thank you very much for leaving your forum "briefly" :), to give us some of your insight and reminders on the dangerous chemicals that are in our oral (toothpaste, mouthwashes or rinses) and body cleansers (soaps, shampoos, conditioners, lotions, etc.) Also, what about the products that we clean or wash our clothing in. What wonderful enlightening information and reminders for those of us who would like to go "natural"...it makes so much common sense. It's awful enough that the body has to contend with the chemicals in our food, water and the air, something we, to a degree we have no control over. However, there are life-changing, positive choices and decisions that we can and must make in our life when it comes to one's physical, mental, emotional and spiritual health and well-being, that we DO have control over: that is things we put into our body and topically on our body. I applaud you for your efforts in taking care of and taking charge of your health and that what you are doing is working for you and that it will possibly work for others as well. Also, thank you again for unselfishly taking "time out from your forum" to assist us here at the BODY ORDOR forum. It's truly appreciated.
I don't do the "organic" thing. But that's another issue and topic I will discuss if anyone wants to know why. Keep up the good work. Every bit of positive information that can help just one person is truly valuable. Thank you again danielxmiller. I will try to make time to view those 2 websites also, take care. - Re: any suggestions? #151025
11 y
1,706
This is a reply to # 2,037,003Hello
Thanks for your suggestions on how to treat this disorder. I had 2 doctors now tell me just to use water in the shower not soap. i also received a list from the gyn to use a mild detergent not tide or cheer, no bleach or softeners such as bounce fleecy on the undergarments. i think even with the water only im screwed. there is no cure for this shit. i will keep living my life as a hermit reject of society.- Re: any suggestions? draheraw
11 y
1,763
This is a reply to # 2,037,089Hi, Affliction, It's a good thing to stay away from products that have fragrances and perfumes in them. Reason being is the chemicals and fragrances I've found in my case seem to magnify and increase the odors coming from my body. The more natural and chemical free a product is, the better it is for our disorder I truly believe this. Case in point: Have you ever smelled someone who "stank" so bad that you could smell the cologne or perfume that they used try to mask their Body Odor with!?...It's enough to make you gag and pass out!...So I try to see myself in that same scenario. Anything with fragrances, a lot of chemicals, and I say alot of chemicals because some "natural" products might have a few chemicals and preservatives in them, anything with perfumes in them I try to avoid. You have to be a LABEL reader :). Affliction, I'm smiling as I type this message, because I know you don't have to live your life as a hermit in isolation. I smile because I had the same feelings you have. I wanted people to stay away frm me and I wanted to stay away from them. Not so much that I might offend them, but I stayed away so I would'nt come out of a serious "gang banger bag", get mad and hurt someone with my words or worse with something else. Now since I've become a christian and changed my way of thinking, my attitude, disposition, actions and since took on a new, fresh outlook on life, my life has been changed for the better....I now concern myself with NOT OFFENDING others with this depressing disorder...so I work hard at trying to keep my odors at bay. Affliction, you know what I do to do that; you've seen my posts. I've made up in my heart and mind that this is my lot in life at this point; so now what am I gonna do about it? I have chosen to take charge and do what I can....
Also, do not leave GOD out of the equation, for He is the main ingredient when it comes to us sticking to our goal of not giving up and dealing with this "thing" so that we are not to overwhelmed and saddened.
Affliction, hang in there, keep your head and chin up and do not give up so quickly or yield to isolation. That is the worst thing you can do. Stop what you are doing right now and go take a good long look at yourself in the mirror. Tell yourself or say to yourself as you peer into that mirror, with all the gusto you can muster up and say: "Affliction, You are not giving up to the point of being a hermit!, I am NOT going to isolate myself from others because Im gonna do what it takes, short of hurting or endangering my health, to lick this thing! I'm a good person and I deserve to enjoy life too. I know I will have down times and life will be a huge bowl of lemons at times, but I'm determined to make lemonade out of those lemons and move on. I will not give up in my search in remedying my problem!".
Affliction say these things to yourself while looking in that mirror and keep those words in your heart and mind. That's what I do to keep myself focused so that I don't drown in self-pity and then give up on enjoying my life whether people want to be around me or not, whether they say mean nasty things about me. I have scriptural reasons for having a hope and bright outlook on the future, for being optimistic about life in general, plus my close relationship with GOD helps to steady me and anchor me during my sad times. Take care.- Re: any suggestions? #151025
11 y
1,822
This is a reply to # 2,037,115I agree it's good to stay away from too much chemicals. I've put so much chemicals on my body that I think I'm near toxic and it's dangerous I know but when you're so desperate just for one day of not smelling at an important time...you try things.I do not make myself a hermit I believe. I actually go out there and try to go out with people despite being treated so bad when im there i wonder why i went and despite being given excuses 90% of the time. in spite of it sometimes i invite myself. but ive become even more a hermit since my odor got worse 6 years ago and life is almost unbearable. on top of that im sick in a few different ways. this bo things is just awful, i wouldnt even wish it on my worst enemy.
- Re: any suggestions? #151025
11 y
1,658
This is a reply to # 2,037,115I'm starting a new thing I'm going soap free in the areas where there's odor for a few days. im thinking maybe theres a small chance im allergic to soap which is causing the smell. i dont know because ive used many soaps even gentle ones and theres still a smell even "soap free" products but its worth a shot if 2 docs told me. im not even going to use wipes for a few days just water.
- Re: any suggestions? draheraw
11 y
1,788
This is a reply to # 2,037,260Good evening Affliction, you're never know until you experiment and see if it's the soap. If you are allergic to soap products, that may be the culprit that aggrevates or increases your odors. I use dove (white) unscented. I also use natural products that don't have to many additives to them and I try to use and find fragrance free products. It's hard to tell if you don't experiment with different methods and different products. It's hard to tell what's working and what's not if you're using to many products at one time. So space them out if you are. Also, Affliction keep a daily log of what's workin and what's not. After a meal or eating and drinking a beverage see if you or others can smell you. Keep good notes because they can be the missing pieces to the puzzle of what's causing or triggering the odor and making it worse. Once you see the pieces come together you will have a picture or answer to what's causing the continuous odor. As I've posted on the Trimethylaminuria forum, we will never completely be rid of these offensive odors, we just have to do what we can to reduce the odor. But remember it's gonna take time and patience coupled with trial and error. But you will gradually see what works for you.
Keep me posted on the "just water" thing that you are gonna try. We're all on this forum "pullin for straws" and wishing each other success :). Black tea has greatly reduced my odors to the point that I am tolerable around others. Take care Affliction.
- Re: any suggestions? draheraw
11 y
1,788
- Re: any suggestions? #151025
11 y
1,822
- Re: any suggestions? draheraw
11 y
1,763
- Re: any suggestions? #151025
11 y
1,639
This is a reply to # 2,037,003I just finished watching your video and reading your website and it's really inspirational. I've been to numerous doctors too and none could help me, it's a rare condition. Since we have a rare condition we sort of have to be our own doctors which isn't really fair and many members of society are ignorant to it so we need to spread the awareness. It's great that you're reaching out to others in your community and even to the bo support forum to try and help them. I wish you all the best, I hope you're finding some relief from peeling lips.
- Re: any suggestions? draheraw
11 y
1,658
- Re: any suggestions? BhsiahRD
11 y
1,899
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