10 Long Years

[MyhopeSomeday25]

hang in there man!!!

Thanks so much


Well, another update... same kinda swan story but here it goes. I went to the ENT yesterday. The ENT check out my tonsils and my nose and throat pretty thoroughly .. He knew I was upset about this problem.. I was telling him my story almost in tears.. He told me (like the last ENT) my tonsils are super duper small.. He said they were basically minuscule.. He cannot even imagine my tonsils having a tonsil stone problem...He said my throat basically everything.. nose, everything is perfect and clear.. I said what about the tonsils in back of my nose between that and my throat.. He said I doubt that would even be the problem.. Check again... He said he sees nothing that would warrant my tonsils being taken out much less my adenoid.. He said he have to see something worth it to put me through something like a tonsillectomy.. He was telling me the recovery from it is a nightmare and can cause serious problems like possible severe bleeding and gastro reflux.. I said is there anything you can do ..give me medication anything? He said there is no medication for bad breath and he sees nothing wrong with my tonsils, throat or anything to give me medication for.. Yep, I felt like crying... He was like" I KNOW YOU WANT ME TO FIND SOMETHING SO I CAN TREAT IT" but I see nothing .. Then he said.. it's possible you may have bad breath on certain days but I smell nothing now, why are you so sad he said???.. Well i'm pretty darn sure its not halitophobia...

This situation have given me extreme anxiety. I am basically my own doctor at this point lol.. I cut out dairy and if I do take dairy I take a lactaid pill.. I have been drinking chlorophyll for 2 weeks now twice a day in my water..I take probotics. I cut out a lot of junk food and fast food.. I am using thera breath mouth wash and toothpaste..I eat my fruits and veggies like a good girl and I can honestly say doing all this made some difference .. a difference in peoples reactions cause like I said I can't smell a thing. Well to truly test it I need to sit next to a person on the bus or something and I just can't right now.. Well, I hope next time I'll have a better update with "I'm CURED".. Good luck ev1

[Trunks99]

hang in there man!!!

Thanks so much


Well, another update... same kinda swan story but here it goes. I went to the ENT yesterday. The ENT check out my tonsils and my nose and throat pretty thoroughly .. He knew I was upset about this problem.. I was telling him my story almost in tears.. He told me (like the last ENT) my tonsils are super duper small.. He said they were basically minuscule.. He cannot even imagine my tonsils having a tonsil stone problem...He said my throat basically everything.. nose, everything is perfect and clear.. I said what about the tonsils in back of my nose between that and my throat.. He said I doubt that would even be the problem.. Check again... He said he sees nothing that would warrant my tonsils being taken out much less my adenoid.. He said he have to see something worth it to put me through something like a tonsillectomy.. He was telling me the recovery from it is a nightmare and can cause serious problems like possible severe bleeding and gastro reflux.. I said is there anything you can do ..give me medication anything? He said there is no medication for bad breath and he sees nothing wrong with my tonsils, throat or anything to give me medication for.. Yep, I felt like crying... He was like" I KNOW YOU WANT ME TO FIND SOMETHING SO I CAN TREAT IT" but I see nothing .. Then he said.. it's possible you may have bad breath on certain days but I smell nothing now, why are you so sad he said???.. Well i'm pretty darn sure its not halitophobia...

This situation have given me extreme anxiety. I am basically my own doctor at this point lol.. I cut out dairy and if I do take dairy I take a lactaid pill.. I have been drinking chlorophyll for 2 weeks now twice a day in my water..I take probotics. I cut out a lot of junk food and fast food.. I am using thera breath mouth wash and toothpaste..I eat my fruits and veggies like a good girl and I can honestly say doing all this made some difference .. a difference in peoples reactions cause like I said I can't smell a thing. Well to truly test it I need to sit next to a person on the bus or something and I just can't right now.. Well, I hope next time I'll have a better update with "I'm CURED".. Good luck ev1

Hey Myhope, you live in NY right? take a look at this thread:
viewtopic.php?t=6238

[MyhopeSomeday25]

Hey Myhope, you live in NY right? take a look at this thread:
viewtopic.php?t=6238

Thanks.. yep I live in yonkers.. My dream is to meet people with the same problem so we can help each other and get the truth.. cause I just can't at this point ask family anymore.. my mom is like nothing is wrong with you.. but moms will say anything cause they love you... Its now about mustering that courage to meet a fellow bb suffer.. seems not that many people like to meet up.. its understandable.. huge step to take to get the truth.. be nice if a group of us can do so ... will keep that thread on watch

[MyhopeSomeday25]

Well, I went for a follow up at my doctor...When the nurse took my blood pressure it was super high and she told me I'm nervous... She checked on me two times before the doctor came in and said maybe I need some water.. Yes, i'm super nervous cause I was afraid to blow my breath in your face..... The doctor came in and he showed me all the test I took and said it's all perfect.. I have no known food allergies.. not allergic to nuts, grains, cow milk you name it.. He said I don't have H Plylori.. Not lactose intolerant .. He told me be happy, everything is wonderful. Then I started crying because I still have this problem.. He said what is that again? I said Halitosis... He straight up look at me and said I don't smell anything and I never have.. I say because it tends to be there and sometimes its not.. why it's there on certain days or hours I have no clue and I need to find out.. He then said I really need to see a psychiatrist ... and that my halitosis might be a delusion or that I probably had little bad breath in the past and now its gone and I can't accept it.... I laughed because 10 years of my life is a delusion? I think not.. .. Because I was so nervous.. he prescribed me Xanax.. I'm in the process of making arrangements to see a psychiatrist because I have extreme anxiety anyway from all this... I guess i'll update when anything worthy occurs.. thanks for listening..

[Trunks99]

Well, I went for a follow up at my doctor...When the nurse took my blood pressure it was super high and she told me I'm nervous... She checked on me two times before the doctor came in and said maybe I need some water.. Yes, i'm super nervous cause I was afraid to blow my breath in your face..... The doctor came in and he showed me all the test I took and said it's all perfect.. I have no known food allergies.. not allergic to nuts, grains, cow milk you name it.. He said I don't have H Plylori.. Not lactose intolerant .. He told me be happy, everything is wonderful. Then I started crying because I still have this problem.. He said what is that again? I said Halitosis... He straight up look at me and said I don't smell anything and I never have.. I say because it tends to be there and sometimes its not.. why it's there on certain days or hours I have no clue and I need to find out.. He then said I really need to see a psychiatrist ... and that my halitosis might be a delusion or that I probably had little bad breath in the past and now its gone and I can't accept it.... I laughed because 10 years of my life is a delusion? I think not.. .. Because I was so nervous.. he prescribed me Xanax.. I'm in the process of making arrangements to see a psychiatrist because I have extreme anxiety anyway from all this... I guess i'll update when anything worthy occurs.. thanks for listening..

I think you should have one of your friends smell your breath. That's the only way to know if you have bad breath or halitophobia.

There is a good naturopath in Schenectady NY that can provide you w/some guidance diet-wise.. PM me if you want her contact info. She also helps people deal with anxiety, depression...and even cancer!

Careful w/medecine, they are not really a solution. They might create more problems. If you have issues with anxiety, why not try spirituality/meditation instead?

[halitosisux]

@Myhope
Please have a read through this thread. You may find things you can relate with in your own case.

viewtopic.php?t=5761

[MyhopeSomeday25]

I think you should have one of your friends smell your breath. That's the only way to know if you have bad breath or halitophobia.

There is a good naturopath in Schenectady NY that can provide you w/some guidance diet-wise.. PM me if you want her contact info. She also helps people deal with anxiety, depression...and even cancer!

Careful w/medecine, they are not really a solution. They might create more problems. If you have issues with anxiety, why not try spirituality/meditation instead?

I had a long talk with my mom and step dad today and I thought I ask my mom straight up again about my breath and she kinda got upset.. She says I don't smell anything and I never have and that she hates talking about it.. I said cause I need to know and she said I don't know how many times I have to tell you.. I ask ever? just a little?.. she said no.. Its just hard to 100% believe her because sometimes people in your life get accustom to your smell.. I asked my step dad.. even blew my breath right in his face and he said I have the best breath and that he too told me many times that..This is just driving me nuts... because I know maybe not at the moment but in the past many times I get that look.. I'm at a point I can't even stand next to a person for too long without having a panic attack.. I try.. I really try to stand next to someone.. I went to the grocery store yesterday and I said i'm gonna do it.. i'm gonna stand on this long line next to someone and just breathe... after like 3 minutes I bailed and went to the self check out.. Next I went to yonkers race way to spend twenty bucks on a slot.. The moment anyone sits next to me I get up.. I can't even sit there.. I can't even do it.. I tried many times to calm myself and pray and relax but my panic attacks is just too strong.. I meditate and pray just about every morning.. but can't get myself to get too close to someone for too long to get a reaction if my breath is good or bad..My doctor told me these will calm me so i can stand next to someone... i have not use them yet though... yes, I will PM you about that place... I appreciate all the help ..thanks so much Trunks

@Myhope
Please have a read through this thread. You may find things you can relate with in your own case.

viewtopic.php?t=5761

Thanks for the link to that thread halitosisux... it was very good read.. I do see a lot of similarity.. I wonder what has happened to the OP since then? I wonder has that person accepted it may be halitopbia?.. come back lol.. I too have a white tongue but no bad taste and I can't smell my own breath.. I thought about it today maybe its a delusion but then I think of all the times I know its not.. I remember one of the first times ever.. in 2005, I was a cashier at a supermarket and this lady said I was very nice and if I wanted some candy.. I said yes and then she said.. oh you definitely going to need it.. I did not know what she meant at the time but after many instances after that.. I realize what it was.. Same year I remember getting on the bus and I sat in back of this guy and he jumped up and was like "whoa" in a disgusting manner and looked right at me and sat toward the front... I remember that really got to me.. I cried for days I think after that.. I thought maybe my body odor for minute... but I just can't even imagine that when I take a bath twice a day and use basic hygiene products,, But for some reason... every time I went to the ent, gastro doc, regular doc.. you name it.. they always tell me they don't smell anything.. I change doctors every year so I can get a different opinion and it's always the same.. last year after telling my doctor my breath was so bad it can reach several feet...my doctor smelled my breath and told me "i thought your breath was going to be horrible..maybe people are just jealous of you".. yes she said that lol.. I even had the so called halimeter thing done and it was fine..The doctor even told me to say the ABC's in his face and no reaction.. yet..It was just two months ago.. this lady was holding her nose when I was at the store.. I noticed the ent always ask me have anyone actually told you if you have bad breath.. I said yes ..but mostly in the past cause I don't get close enough to strangers anymore for them to tell me.. I basically see them being disgusted.. I'm at a point where I can't even pick between what would be worse... to actually have bad breath or to believe you have bad breath.. I always feel if you have bad breath, there is a cure.. if you can find the source you can find a cure,,. but if it's a delusion.. there is no cure for that, which is sad:( .. I really thank people for listening to me and allowing me to talk about this cause I basically never been this in depth about my situation with anyone ever.. .. this site is very comforting

[halitosisux]

Myhope, you're welcome. We all understand what you're going through. The not knowing is the worst thing. We either have to trust what people say, or we have to trust our instincts. Neither of which can ever be entirely relied upon. This uncertainty is the latching mechanism that can hold the curse firmly in place.

You may well have delusionary BB. This could be from other insecurities that have manifested themselves into a fixation with odour. And as long as you believe you have this problem with odour, your mind will ALWAYS find ways to keep you convinced of this. You'll be looking around for reactions and gestures that confirm your fears. And you will ALWAYS see them no matter what is actually happening.

It's good to see you're trying things and have eliminated h.pylori and lactose intolerance etc.

I read that your brother confirmed you have bad breath at one point. Do you still confide in him? You need to let him (and your parents) know how much this is affecting your life. If your BB is intermittent, you might have to consider it could be seconary TMAU. There are things you can try with diet that can confirm this or dismiss this possibility. But you'll need your brother's help to confirm the results. You say you took lots of antibiotics in the past and your stomach pains you suffered with could all be relating issues that bring changes to your gut microbial flora which then leads to an overproduction of the chemicals that causes the stink in secondary TMAU. Primary TMAU is similar but is MUCH rarer and usually caused by your body's inability to deal with the chemical, rather than too much of the chemical being produced. Primary TMAU is usually associated with strong fishy smell, but secondary TMAU is usually fecal/burnt rubber/sweaty socks/garbage. The difference is purely the concentration of the chemical (TMA). That's very simplistic but roughly the difference. It is estimated that 1 in 100 people have some degree of secondary TMAU.

[MyhopeSomeday25]

halitosisux, yes.. I am convinced my bad breath is intermittent.. it's there on some days and not on the others.. I am really trying to figure out why.. what am i'm doing different on my good days of breath and my bad... I have/had two older brothers.. My oldest brother who is 9 years older than me always had a learning disability.. he never could stay in class long enough, he never graduated HS.. because it was too difficult.. Despite that he got a job and has been a care taker for 14 years... I had another brother who was 4 years older than me passed away 6 years ago from diabetes complication.. When he was 17 he was diagnose with schizophrenia .. So growing up with him was fun but then turned bad when he hit 13.. Everything changed.. he became really violent and talked about people on the tv talking to him.. Me and my other brother were very afraid of him.. My parents made the decision when he was 19 he could no longer live with us.. So they put him in a home to get help.. He eventually was able to get his own place with the help of disability.. He basically tried to live a normal life as much as possible despite hearing voices on a daily basis.. So growing up I guess you can say was very traumatic..

I told my mom my own brother the one who is a caretaker said I do and she basically said he will say anything you want to hear.. She told me think about how I approached and asked him and if I lead him on.. Why would I want someone to tell me I have bad breath on purpose?? If anything that gives me more anxiety.. So my mom, dad are though with me even asking and they said when it comes to my breath don't bother my brother... So it's now I have to try and get some feedback from strangers which is hard because I get panic attacks around them..


I heard about TMAU but I was not sure it relates to me since they say it's so rare and after I read your post.. I started reading about secondary tmau and it's a possibility .. I have a follow up appointment next month and I hope my doctor lets me take the test cause I think he thinks i'm a quack now lol.. What kind of foods would one have to eat if they do have it? is it okay to drink chlorophyll? I have been drinking it non stop for weeks ..

One last thing I do remember.. maybe 5 years ago.. I was confident about my breath and I remember talking in people's faces.. I felt good like maybe the bad breath is gone.. I remember later that night i ordered Chinese food.. it had to have been egg foo young or chicken with garlic sauce (cause i love those)... Next day thinking my breath is still great.. i talked right into the retail clerks face and within seconds covered her nose like she smelled death.. So, I don't know if anyone had that experience with certain foods like that.. I gave up Chinese food and it been tough cause I love it so much

[halitosisux]

Intermittent BB could explain a lot then, about your parent's and brother's handling of this delicate situation.

As BB sufferers, we know the importance of being truthful. But as non BB sufferers they just don't understand this, and don't understand why it can be affecting you so badly. They just want you to forget all about it and get on with your life. But anyway.. sorry to read about the things you've had to go through on top of all this.

If you search through "Aydinmur" (Dr. Murat Aydin) posts, there is a test he describes where you take a certain amount of choline supplements. Choline is available in all healthfood stores. Choline is a chemical (which is also contained in the foods we eat) which your gut bacteria turn into trimethylamine (TMA). Some foods already contain trimethylamine (fish for example, hence their fishy smell). Under certain circumstances, too much trimethylamine gets produced by the gut bacteria. When this TMA get absorbed into the bloodstream and the body cannot convert (oxidize) this TMA into it's odourless form (TMAO) at at rate that keeps it below a certain threshold level, then a buildup in the bloodstream gets released as odour from the gas conversions in the lungs, and secretions such as saliva, mucus, urine, sweat etc.

Also, if the body lacks or has developed a lack in it's ability to convert TMA into TMAO, then the same thing can happen, even with normal amounts of production of TMA in the gut, or dietary intake of TMA, it will soon buildup in the bloodstream. This is usually what happens in primary TMAU. The levels build up much higher in the bloodstream and at high concentrations TMA smells strongly of fish. At low concentrations, it's a fecal/garbage smell.

So to test whether TMA is playing a part in your BB, you purposely overload it with TMA by taking choline supplements. You must also eventually do the opposite, by refraining from eating foods high in TMA and choline. This further confirms the situation by doing the opposite to overloading the body with TMA.

This is all highly simplistic and my own interpretation of what happens at a very basic level with TMAU. I may be wrong, so please do your research. I'm just trying to point you in a direction that may help confirm or eliminate this very real possibility.

Chlorophyll helps to trap/neutralize TMA inside the gut before it gets absorbed into the bloodstream. Activated carbon does this too. Again, do your research.

Doctors always think we're nuts. But try to be confident and serious and show you are on a mission to do something completely understandable from any human point of view. Push your doctor to get this TMAU test done. But it's definitely worth trying the choline/diet test in the meantime.

[MyhopeSomeday25]

I agree what you said about non bad breath sufferers.. it's like they can't even understand why its such a problem.. These doctors and ents act like.. "just get on with your life".. "it could be worse".. Having BB affects everything in your life.. your job, your friends, you love life.. enjoying life.. I once said i rather have one arm.. at least people can look and understand but with bb they just think we are not clean and don't care about basic hygiene..


Thanks a lot for explaining your thoughts about TMAU.. Yes, I will definitely do some research on it and I need to take that test.. I wish I could take it now.. I see my doctor next month.. But first I think I will see a psychiatrist... it may be a good way of talking to a stranger without running away.. Maybe I can get some feedback from that person... I think i will try the choline test in between as well.. I will try everything and everything.. I want to leave no stone un turn..

I started taking Chlorophyll like maybe 3 to 4 weeks ago.. I did noticed when i started my BB was actually getting worse based on a reaction.. maybe the chlorophyll was cleaning and detoxing my system and all that came out lol,,, I heard a person may smell worse when beginning ...


Thanks for all the help and info and talking to me halitosisux and to everyone in this thread.. I will continue to post as long I got something interesting and new updates to tell.. have a great day

[halitosisux]

Thanks. I'm glad I've helped. Yes please keep us updated and best of luck!

[MyhopeSomeday25]

Mini update... I had a follow up with my ent because my nose gets stuffy this time of the year the most..I did not want the same doctor... cause he just did not get me at all or even cared or had humanity for my problem.. I was given a different ENT doctor for my follow up and its made a world of a difference .. I can't remember if I ever had a ent doctor that had compassion for what I was saying.. He understood what a horrible problem this is.. He told me I was lucky cause he was a nose specialist and was going to go all in my nose to see could it be the culprit lol...He told me I had tons of mucus in my nose ..I said yea I had a cold in there for over a week now and just in general its stuff all the time. I told him how I converge on message boards and how someone who had bb was cured for removal of the adenoids . He showed me my adenoids on screen and said it's small and clear.. nothing is there but I will do a ct scan just in case... (YEAH )... He told me it looks like I have chronic sinus infection and that I need to take some antibiotics plus two types of Corticosteroids... methylprednlsolone and fluticasone .. I said steroids what lol??? he said yeah it will do wonders and after all is clear I will do a ct scan.. He told me post nasal drip can very well be whats causing my problem... He basically eliminated my tonsils and it said its too small for that to be my problem... I did not ask him if I had bb nor did her confirm if I did or did not.. But I feel like something is being done.. I'm trying to eliminate as many sources as I can to find the problem... Plus, I had some therapy last week and boy I needed it.. This problem can really do a number on ones mental health and i'm glad I am speaking to someone about it..It was brief but good... Will post again after all my medicine is done, some more therapy and after I get my ct scan.. wish me the best and gl to all on your journey to be bb free health

[Jimi Stein]

this is just grotesque, I think that doctors have their head in donkey ass.

They prescribe steroids and antibiotics all the time. I have not heard a single person whose pnd would be cleared after taking antibiotics.

CAT SCAN is very radioactive, 1000x more than regular x ray.

And 9 years also told us, there is nothing to be seen on cat scan.

Just convince him to remove them once for all.

[MyhopeSomeday25]

Jimi, this is the first ENT I had since this all began that did something for me more than just give me a nose spray ... I would love to demand him to take out my adenoids to see if it is truly my problem but i'ts not that simple for me.. This whole situation has caused me to be literally broke.. I went from being a working person and saving some good amount of money to being a person that barley have 500 dollars to my name because I can't work for long periods of time. I get by selling things of mine at this point.. My breath problem is inter mitten.. it's there on some days or hours and then it is not.. I still have yet to narrow down why is it like this.. This has even cause my own family to suggest i'm crazy to some degree. So if it was a good breath day that day when I saw the ENT and he checks my adenoids and it's clear.. I don't know how I demand him to take it out??? Maybe if i flash 10 grand in front of his face he'll do it but when I barley have any money to my name and no proof as of yet for him to remove it. My insurance won't allow it.. I have to take baby steps to get there.. Just because in 9 years situation the cyst went unnoticed in a ct scan does not mean it would be like that for everyone.. I wish it was that easy to demand this from my doctor on this horrible insurance I have.. that is one of the reasons why it's been a long journey for me.. it takes cash to do all these things. Doing a ct scan at this point is better than doing nothing. This is the furthest I got even if it's just a red herring. Sometimes i think I ruled out an area and then next I wonder did I truly... Well, all I can do is do the best I can to achieve my goal of being bb free with what I have unless someone is willing to give me some money to get it taken out.. any takers?? ..and before someone says "ask family or friends for money".. Trust me, I already have too many times over the last several years .. I can't anymore unfortunately