Something we should all do!

[LillyB]

I'm back.. Unfortunately Tonsillectomy did not cure me, and I am now trying out a Vegan diet. It's too early to say whether it is working or not, but I will keep you all updated.

The reason for this post is that while doing some research online I found a website called Cure Together. It basically collects information from members anonymously using short surveys, regarding symptoms they experience and treatments they have tried along with an effectiveness rating for each treatment. I just signed up and it took me literally 3 minutes to complete! Just think, if we all did the same then it would at least give us new ideas of what does and doesn't work.

I strongly believe that we have to work together to find a cure(s) to this awful affliction, and while this website is great I feel that over time useful information may have become lost due to the amount of posts.

Sorry if somebody has already posted this link!

The link to the site is: http://www.curetogether.com

If someone could sticky this post then that would be great

Thanks

[whatdidido]

Hi lillyb,

Would you explain your situation if you don't mind....did you develop BB in your childhood or did it appear as an adult? Did you ever have tonsil stones or inflammation in your adenoids? Do you have post nasal drip or a deviated septum? And was it only your palatine tonsils you had removed or your adenoids as well? Any other surgery at the same time?

[LillyB]

Hi lillyb,

Would you explain your situation if you don't mind....did you develop BB in your childhood or did it appear as an adult? Did you ever have tonsil stones or inflammation in your adenoids? Do you have post nasal drip or a deviated septum? And was it only your palatine tonsils you had removed or your adenoids as well? Any other surgery at the same time?

Hey Whatdidido

Sure, had BB since around 12/13 I believe although I think it was milder then and has increased in intensity.

I had my tonsils and adenoids removed in September '14, occasionally I would get a couple of tonsil stones but it was not a huge issue. I think I was just hoping for a miracle cure.

I have quite a lot of post nasal drip, but no deviated septum. I remember as a kid I always tried to "snort" down mucous that I could feel behind my nose but above my throat. I still have this feeling, blowing my nose does not help at all. Have tried the usual nasal sprays etc, raised the head of my bed in case it's silent reflux, used the Neil Med sinus rinse and a netti pot but they did not help. I actually have no issues breathing at all despite the mucous stuck behind my nose.

I believe my BB comes from my nose because I get a packed train to work every day and I am very careful not to open my mouth but people can still smell it. Have developed severe anxiety due to this and am dreading losing my job as I have not yet passed my probation but have had to take time off already

I eat very healthily, drink loads of water, have never drunk caffeinated drinks or anything like coke etc. lots of fruit and veg. Negative test for H Pylori, had blood tests for everything you can think of and they all came back fine. Not tried antibiotics as I'm very wary of becoming resistant or exacerbating the problem. I use Ultradex mouthwash and toothpaste, as well as a Tung Brush (although NOT with the Tung gel they provide as it contains parabens!!) like many of you I feel my BB increases when in uncomfortable situations, sometimes in a packed train I catch a whiff of it :/ and I believe this is why sometimes I do not have BB. As a last ditch attempt I visited a homeopathic doctor, as well as a Chinese doctor and acupuncturist who both could not smell anything. Before you start to think I'm crazy, I have had my BB confirmed by a number of people so I guess it is intermittent - but I would say more on than off and it definitely increases in stressful situations.

Any other questions let me know!

[LillyB]

I used to get tonsil stones, so last year had both my tonsils and adenoids removed. Didn't solve anything.

In 2 weeks I am having a Rhinoplasty (nose job) during which the surgeon will fix my deviated septum, although I don't expect this to have any effect on BB.

He did also note during he consultation that my turbinates were enlarged.. Not sure what that means or if that could have any effect on BB??

[Room Bus filler2]

_________________________________________
hi lillyb . 
i think you are talking about my situation. 
never seen somebody that we share all this in same things like you. 

i have an appointment with ENT and want to remove my tonsils and adenoids. 
can you see your epiglotte . i see my epiglotte near back of my tongue it looks like color and shape of tonsil.stones. .... 

[Sickandtired]

Lilly I can relate to you, I can sense mucus sometimes in my throat and also sometimes between throat and nose in which case my bb comes through nose also. I get instant mucus there in stress situations and that's when my bb is at it's worst. What kind of smell do you sense when you get to smell your odor?

I also had my tonsils and adenoids removed with no improvement. After that sinus operation with turbinate reduction and cleaning everything out, althought it helped me with normal breathing it did nothing for my bb. But I wish you all the luck in the world to find your relife with it!

[sun123]

to sickandtired,

what was your sinus operation? was it balloon sinuplasty? FESS?
which sinus did they do work on?
what exactly did they do?


thanks

[Sickandtired]

Sun, i think it was fess, but i cant tell you for sure, i would look at the papers from post op informations but they arent with me now. For sure i remeber it said turbinate reduction, adenoid removal and explained other things but since it's been 3 years ago I really dont remeber the details. When i get them i will post it here

[ThinkPositive]

to sun123 hey how was ur tonsillectomy, were there any improvements?

[sun123]

to sickandtired,
thanks or the info, I will wait till you get the paperwork with more info…i am interested in which sinuses they operated in and what method was used

did you get sinus operation 3 years ago?

to thinkpositive,

after (palatine) tonsillectomy i did feel improvement, taste in mouth got better among other things but I'm still having issues, it did help a lot but theres still something more to be done…..

[Sickandtired]

did you get sinus operation 3 years ago?

Yes, 3 and a half years ago if i remember correctly.

[mak_123]

i have the same symptomps as yours. I have already mentioned about my symptoms but i will write them again. I have terrible morning breath-coming from my mouth and nose. It's fact that if you are under stress you have post nasal drip. When i am under stress i have extremely bad breath! when i am hungry, thirsty, even water gives me bad breath! ( banana, oninon, milk, cheese,hamburger, chewing gums ( containing alcohol ). i don't consume cofee, energy drinks, colas... no smoking, no drinking alcohol . did tonsilectomy - no improve at all!, did gastroscopy and echotomography everything normal, did ct scan and MRI i have small polyp but it's not the cause-doctors confirmed! took amoxicilin, and other strong anti-biotics no relieve at ALL!!!. I have yellow tongue and white and i get very thirsty , i dring water but it's useless. it's taking too long with this halitosis. we have no improvment at all! to lily and sick do you relate to my symptoms, can you add somthing in yours ?[/b]

[kenedy]

welcome back and great you have shared....