What's your big challenge in Life??? HUGS!

amother

Green

Mon, Jan 21 2019, 11:06 am

amother wrote:

Thank you for your kind words.
I don’t really believe in natural medicine, nor can I afford it, but I will look into it.

What you are going through is very hard . I don't have any solutions for you but I do know that when I'm constipated or need to have a bm but I am not near a bathroom I do feel that my breath smells terrible until I use the bathroom . Maybe it's worth trying to find a good g.I. Dr. I would even suggest going to the mayo clinic. Maybe they can figure out what's causing your body odor. Maybe you have some sort of fungal thing going on in your stomach or intestines ? I'm not a Dr and I have no idea what I'm saying . I would suggest finding a good Dr to help you out and to do a full full work up on you . There has to be a reason for this .You shouldn't have to live like this .

Is this something you had your whole life? Or is it a new occurrence? Google mayo clinic and see how you can schedule an appointment . I would also suggest you find an excellent g.I. Dr. Maybe in mass general or at the Brigham and women's hospital in Boston . I don't know where you live but maybe contact an organization that can get you a referral for a good internist and start there . Please let me know what happens . You shouldn't have to live like this .

amother

Navy

Mon, Jan 21 2019, 11:48 am

amother wrote:

I’m living with this since my late teens-20+years.
I went to a GI in NYC based on recommendation by Refuah Helpline.
He claims there is no connection between GI issues and body odor, and could not tell me what kind of doctor to visit for a diagnosis.
Re: fungus-I have none of the symptoms of candida.
One doctor suggested a course of antibiotics-nothing changed.
TMAU-in the article you linked- my PCP and the GI never heard of it, like I said above I could not get them to help me with testing for this condition.

Thank you for caring.

amother

Green

Mon, Jan 21 2019, 2:02 pm

amother wrote:

The article I posted has a link on the bottom , email them and see if they can help you out . I think it's time for you to find a new Primary care doctor and a new g.I. not all doctors were created equal and not all drs know their stuff or care enough to dig deep until they find a solution . . Please find yourself a new dr. Maybe if you post your location someone here can recommend a good diagnostitian.

amother

Navy

Mon, Jan 21 2019, 3:47 pm

Thank you, I have emailed them, they do testing through a lab-they send out materials for urine collection, which you then send to them for testing. It's a complicated process- you need to have it shipped with dry ice and it costs hundreds of dollars...I would rather do it through a doctor...if only I could find one who is willing to help me...nobody wants to get involved in a condition they have no knowledge about...I live in Brooklyn.

amother

Green

Mon, Jan 21 2019, 5:25 pm

amother wrote:

Make an appointment with Dr Emanuel schiowitz. He's very thorough. The wait time in his office is very long but worth it .

amother

Navy

Mon, Jan 21 2019, 5:34 pm

Interesting that you are recommending Dr. Schiowitz.
He is the PCP I am referring to.
I took along a printout of an explanation of the TMAU disorder, and asked him to help me get the testing for it.
After looking into it, he called me on the phone and said it is a manufactured disorder, he did not come across it in the medical journals...dismissively told me to see a dermatologist...
(I am happy with the office for routine visits, I do find him to be a good doctor.)

amother

Green

Mon, Jan 21 2019, 5:44 pm

amother wrote:

Interesting that you are recommending Dr. Schiowitz.
He is the PCP I am referring to.
I took along a printout of an explanation of the TMAU disorder, and asked him to help me get the testing for it.
After looking into it, he called me on the phone and said it is a manufactured disorder, he did not come across it in the medical journals...dismissively told me to see a dermatologist...
(I am happy with the office for general medical issues, I do find him to be a good doctor.)

Maybe it is a manufactured disorder. Did you schedule an appointment with a dermatologist ? Maybe it is something that has to do with your skin . Follow up with a dermatologist . Try Dr Blobstein, He's amazing .

amother

Green

Mon, Jan 21 2019, 5:52 pm

amother wrote:

Yes, I did see a dermatologist-he recommended chlorophyll-it didn't help.

So call back Dr schiowitz and ask him where you should go next ? Ask him if he thinks you should go to the mayo clinic or Cleveland clinic . You need to get to the bottom of this . There has to be a reason . I would go back to the dermatologist to let him know that the chlorophyll didn't help . Ask him what next step to take .

amother

Navy

Mon, Jan 21 2019, 8:22 pm

amother wrote:

I do believe TMAU is a real disorder, I don't know if this is what I have, but the description I read from people online is exactly what I am experiencing-emitting a smell of something rotten, a dead mouse, dirty diaper smell-the comments vary.

http://www.meboblog.com/2008/1.....r.htm
https://abcnews.go.com/Primeti.....age=1
https://www.youtube.com/watch?v=tei23FuZM4U

amother

Navy

Mon, Jan 21 2019, 8:38 pm

I hope one day to get to the light at the end of the tunnel and share my experience with Ami
Living in order to raise awareness and to inspire sensitivity towards people like myself.
Right now it would be too painful to talk about.
I don't think people realize that not all bad breath and body odor can be prevented or treated. Don't assume that people who smell are dirty, unkempt, or too fat too clean themselves. I am a very clean, put-together person. I look like the average frum woman you pass by on the street. You would never know or associate someone who looks like me with what I am dealing with.

amother

Blue

Mon, Jan 21 2019, 11:36 pm

amother wrote:

Can you explain and forward this to refuah helpline? Maybe they can dig in full force and find you someone who could test you. They're supposed to be good at this. Perhaps explain that where they sent you wasn't helpful at all. Let them sit on your case until it's resolved.

I hope when you speak to them they understand that you are a very clean put together person (not the way some posters automatically thought).

My heart breaks to hear such suffering!

amother

Wine

Tue, Jan 22 2019, 2:01 am

amother wrote:

Can you try following the treatment protocol here? https://rarediseases.info.nih......nuria

I think most of it can be done on your own, aside for the low dose antibiotics.

amother

Babyblue

Tue, Jan 22 2019, 9:00 am

amother wrote:

I have the same with bad breath.
It ruins my life.
I tried it all.

Did you ever check if you have tonsil stones? I saw white spots on my tonsils and when I removed one it really smelled... And it smelled exactly like the breath of a woman I know who has bad breath. The ENT said they are tonsil stones. I know it sounds gross but since then I remove them myself, even when I don't see any, by gently massaging on my tonsils. Sometimes they pop out from in between the crevices of the tonsils; they weren't visible but they were still there.

Zehava

Tue, Jan 22 2019, 9:15 am

amother wrote:

Newlywed adjusting to a difficult marriage and difficult transitions at a young age.
Unfortunately, developing mental health issues (anxiety and depression) and cutting and suicidal thoughts. Yes, I'm dealing with the problem by going to mental health drs. Its still hard though. Crying

Is it a difficult marriage or abusive spouse? Marriage should not cause anxiety and depression.