bad breath

[kazza]

Hi all, just wondering if anyone else suffers with bad breath. In my case I have stenosis in my trachea and the symptoms are the same as in my nose - crusting etc. It makes me very conscious when I have to get close to anyone because I know that they can smell it. Tried all the obvious things like mouthwash etc but hygienist assures me that problem is not in my mouth but more likely coming from trachea. Any tips or ideas would be welcome?

[Alysia]

I just want to welcome you to the forum, Kazza.
I dont know much about tracheal stenosis, thankfuly I dont have it. so I dont have any suggestions. sorry. I understand that the smell might be an embarrassing issue. do you have any feedback from someone else about it, or is it only your feeling/sensing ?
If and when you will feel like, you are invited to tell us more about you, where are you coming from, how long do you have WG, what meds are you taking, and whatever you want to share.

[LisaT]

Hi Kazza, welcome! I have sub glottic stenosis but am not as familiar with tracheal. I just wanted to mention liquid chlorophyll because it's a natural breath freshened that is supposed to help breath 'from the inside'. You can buy t at health food / vitamin stores and it has no flavour so you can add it to your water or other drink. It might be worth a try? As Alysia said, please feel free to share your story.

[Beverly]

Hi Kazza...I sometimes have bad breath and all the time have dry mouth. I chew a lot of Mentos gum for both. Not sure what causes bad breath. Some Meds can cause dry mouth...however, I experienced this before I was diagnosed. One day I realized I had no saliva:w00t:. Could not eat breads, crackers, meats, etc. What little I did eat had to be very moist. If I don't have something in my mouth most of the time my lips stick together, tongue sticks and very difficult to swallow until I drink something.
Sinus drainage can also cause bad breath. Hope someone else can give you some more or better info.
Beverly

[BookNut]

Hi Kazza. Just wanted to say welcome to a great group. Hope you will come here and feel free to share ANYTHING whenever you need help. Who else could relate more. Someone is bound to have the same problem and will hopefully share with you.

This page lists some treatments, althouh the toothpaste seems to be chemically based, so I'd check with a doctor for drug interactions. I also wonder if a pharmacist might have some thoughts...
http://www.patient.co.uk/doctor/halitosis

Again....Welcome!!

[annekat]

Hey, I just wanted to point out to a couple of you that kazza joined the forum in May 2012. It says so in the upper right corner of the post. Not everyone who joins posts a lot, so we may think they are new when they aren't.

Otherwise, the subject of bad breath is an interesting one and thanks for the suggestions given so far and those to come. I don't have stenosis, but do have the sinus drainage, and if I had bad breath it's likely I wouldn't know it, since I can't smell anything. So some of these things like the liquid chlorophyll might be good to use as a preventative as much as anything.

[LisaT]

Hi Kazza...I sometimes have bad breath and all the time have dry mouth. I chew a lot of Mentos gum for both. Not sure what causes bad breath. Some Meds can cause dry mouth...however, I experienced this before I was diagnosed. One day I realized I had no saliva:w00t:. Could not eat breads, crackers, meats, etc. What little I did eat had to be very moist. If I don't have something in my mouth most of the time my lips stick together, tongue sticks and very difficult to swallow until I drink something.
Sinus drainage can also cause bad breath. Hope someone else can give you some more or better info.
Beverly

Beverly have any of your docs ever suggested Sjögren's syndrome? It causes those symptoms and is autoimmune. All of these things seem to overlap...

[BookNut]

Hey, I just wanted to point out to a couple of you that kazza joined the forum in May 2012. It says so in the upper right corner of the post. Not everyone who joins posts a lot, so we may think they are new when they aren't.

Otherwise, the subject of bad breath is an interesting one and thanks for the suggestions given so far and those to come. I don't have stenosis, but do have the sinus drainage, and if I had bad breath it's likely I wouldn't know it, since I can't smell anything. So some of these things like the liquid chlorophyll might be good to use as a preventative as much as anything.

Whoops!! The tragedy of the librarian who doesn't read!! Sorry Kazza. :unsure:

[pberggren1]

That was Kazza's first post though.

[annekat]

That was Kazza's first post though. Guess I could have investigated further. In that case, Kazza is welcomed to tell us all about his or her experience with Wegs from the very beginning!

[Beverly]

Thank you Lisa for asking about Sjogren's syndrome. No one has ever mentioned it...everything has been lumped with WG. The dry mouth:w00t: is worse when I exert myself. Hopefully I will have a new doc soon who will look at everything.
Thank you all for responding to Kazza. I am blessed to have you guys!

[kazza]

Thanks for all your kind replies. It is true that I am not new to the forum but as highlighted I have not been in touch for some time though I intend to change that.

I live in the UK but joined the forum because I felt very alone when finally accepting that friends and family (through no fault of their own) could ever really understand what I feel. On the outside there are no obvious signs that I have any problems other than a rather raspy voice likened to those on chat lines..so I am told :-) and the occasional coughing.

I was diagnosed back in 2009 after suffering for at least 3 or 4 years. I was desperate to find out what was wrong with me but when I read about the condition I quickly changed my mind. I realise now though that knowledge is power and I have fought to try and stay as positive and active as possible.

w/g has affected my hearing, sight,sinuses, trachea, lungs and joints. I do get very dry mouth which sometimes makes it difficult for me to swallow and my eyes get dry particularly at night making them painful and difficult to open after I have been asleep. Beverly, I have a large bottle of water with me all the time whic I tend to drink throughout the day and during the night I suspect you do the same?

I am very lucky to have been blessed with a great surgeon who has helped me to manage my condition along with all the dreaded medication!

I have great family support but in truth I have not shared all details of my condition with them to save them any unnecessary worry, hence why I now understand the value of the forum.


Going back to my original thread I will check with our health stores for the liquid chlorophyll, anything is worth a go so thanks for that!

[LisaT]

Thanks for all your kind replies. It is true that I am not new to the forum but as highlighted I have not been in touch for some time though I intend to change that.

I live in the UK but joined the forum because I felt very alone when finally accepting that friends and family (through no fault of their own) could ever really understand what I feel. On the outside there are no obvious signs that I have any problems other than a rather raspy voice likened to those on chat lines..so I am told :-) and the occasional coughing.

I was diagnosed back in 2009 after suffering for at least 3 or 4 years. I was desperate to find out what was wrong with me but when I read about the condition I quickly changed my mind. I realise now though that knowledge is power and I have fought to try and stay as positive and active as possible.

w/g has affected my hearing, sight,sinuses, trachea, lungs and joints. I do get very dry mouth which sometimes makes it difficult for me to swallow and my eyes get dry particularly at night making them painful and difficult to open after I have been asleep. Beverly, I have a large bottle of water with me all the time whic I tend to drink throughout the day and during the night I suspect you do the same?

I am very lucky to have been blessed with a great surgeon who has helped me to manage my condition along with all the dreaded medication!

I have great family support but in truth I have not shared all details of my condition with them to save them any unnecessary worry, hence why I now understand the value of the forum.


Going back to my original thread I will check with our health stores for the liquid chlorophyll, anything is worth a go so thanks for that!


Sometimes the staff at health food stores can be a wealth of info, and they often have a big fat book of info about various herbs and supplements, so they can tell you of any contraindications. So if you're going to one, you may ask the staff about any other solutions too. I double check new vitamins and supplements with my pharmacist as well, just to be safe. Pharmacists seem to be the only ones with enough knowledge about both medications and supplements. Docs have prescribed things I should not have been taking in combination with my other meds, and naturopaths have prescribed herbs or suggested teas that were also not a good idea. (The chlorophyll as I understand it is the same natural substance you get in vegetables so it shouldn't have any interactions, but again I would ask just to make sure since it's been a while since I had the discussion.) good luck!

[windchime]

Kazza,

Nice to meet you. I have a very dry mouth also. My dentist said it could be related to meds that I take. I use the Biotene toothpaste and mouth wash. I also have the mouth gel, all of which helps.

Lisa's suggestion of Sjögren's syndrome is very valid. My sister has it and two of her symptoms are dry mouth and eyes along with joint pain. I would at least mention it at your next dr appt. It's not unusual to have two AI diseases concurrently. Sad, but true. I'm glad you "activated" yourself and i look forward to hearing more from you.

[Alysia]

thanks for sharing your story, Kazza. you are not alone anymore, and we do understand what you are going through :hug1: there is always someone around here 24/7 (prob me, the addicted one :wink1: :blushing: ) so you are invited to share whenever and whatever you feel like sharing.
there are more here from UK so I hope you can be in touch with them, and even get to meet them. see this thread for example: http://www.wegeners-granulomatosis.com/forum/off-topic-discussion/3163-close-encounters-weggie-kind.html

[annekat]

Thanks for sharing your story, kazza. It is so familiar in many ways, most notably the delayed diagnosis and the feeling of being alone with it and unable to talk to friends and relatives about it. They have a really hard time getting it because there are so many possible symptoms and variations and we may look and act well a lot of the time. This forum has helped me so much to not feel alone; we can mention any large or small issue and will get a response from people who have been there and who care. I'm glad you have decided to participate more fully. You may also put yourself on our Weggie Map, if you haven't already, by following the link in blue near the top right of the page.

[kazza]

Hi all. I have already ordered the liquid chlorophyll on line, I am going to give it a try first and ask questions later when I have my next appointment with nephrology...I don't want them to put me off trying it if it may help me :-)

I will do some research on the s/syndrome, never heard of it but I tend to assume that all my symptoms are caused by wg but I am very slowly learning that is not the case!

I hope you are all having a good or at least reasonable day today? I will keep in touch

[tjkonya]

Kazza,

I have a similar experience. My youngest son gets very worried when he can smell me. He says it smells like infection and the scent changes. Similar to you I have stenosis and crusting. I've noticed consistent irrigation of my sinuses helps with the smell others can smell. Simply using saline with Johnson's baby shampoo works very well.

Good luck!

[kazza]

Thanks TJKonya,

I will try that and see if it works...quite frankly I have nothing to lose.

Speak soon