Sjogrens Syndrome and bad breath. Help!

Wow, such detailed and informative advice, thank you!! For those of us new to this disease, your comments are most welcomed.  I'm very grateful... I hope the frustration of getting a message through doesn't curtail you in any way - us newby's really need and count on your experience!

You always help me calm down, roll up my sleeves, and get to work. I’m calling ENT and allergist this morning to see if I can get checked for tonsil stones. I know post nasal drip is an issue. I need to know what it’s impact is, so I can figure out if I need antibiotics or have tonsil stones removed. Either way, this forum has lot a fire under me to find an answer to this problem. Thank you. 

Closing eyes and breathing. 

Thank you. 

It’s pretty bad on some days (trust me) and mild  or nonexistent when I’m not at work. So part of it is anxiety. 

I’ve been to the dentist several times, even recently. But not to a gym dentist. I can try that as well. 

I mostly have this feeling on my tongue, a taste even, that feels and smells. I’m going to see if the post nasal drip (which is constant) can be treated. My allergist gives me the equivalent of Zyrtec, but it’s not working. 

I’ve got to figure this out, the right cocktail of meds, the root of the problem, whatever it is. 

You’re right. I HAVE let it control my life and used to freak out far worse than I do now. It’s just so shocking to have it happen overnight and not know where it came from. 

Your words encourage me dearly and I thank you for giving me further courage to face this. 

Hi Wendy:

When did your breath issues start? I NEVER had them before Sjogren’s and at 42-43, they occurred overnight. It is very deliberating, indeed. 

I’m glad you’re here. I’ve fekt so isolated with no one who truly understands. If it isn’t autoimmune diseases they know, they just don’t do the research to show empathy to your condition and blow it off. 

I read somewhere about the notion of “looking sick.” Sjogren’s isnt bisible, unless your face or hands or feet swell. Otherwise, people misconstrue your not “looking sick” as your being a candidate for saviorship or attention. 

We both know that isn’t the case. 

The interview I’m going to on the 22nd (Thursday) is one that is rare. I almost canceled it and decided against it, after talking to a friend. Am I nervous? In a way. Am I worried the SS will kick into overdrive (bad breath symptoms from dry mouth) before I get there? Yes. But I’ll be running for the rest of my life if I didn’t wear a helmet of Teflon. I have to go. 

Please share your experiences as well. I researched and saw xerostamia as the condition we have. I’m also going to the ENzt this week to see if tonsil stones are contributing to the bad breath. I can’t live like this forever. 

But I feel blessed that the ostracism of it has caused me to have even more empathy for people and their plight to persevere through a series of issues. 

Thank you for your post,

Oly. 

Let us know how the interview goes Oly.  Your breath may not be as offensive as you think. I am not trying to minimize.  It’s good to reality test these things and work through them.  I also think other people have a way of overlooking our issues if we act ok with them. I had a friend in college who had horrible body odor plus ate garlic like it was going out of style. It seeped out her pores. She was not embarrassed in the

least so I just kind of got used to her odor and stopped noticing.

I TOTALLY agree. The more I share the tiniest information about having dry mouth, the vultures come to see if it’s really true. 

The people where I work now act strangely when they get close to me, but the past three jobs I quit because of this taught me to not back down, that I had a right to ask questions in meetings, talk openly and teach. 

Those other times both depressed and broke me...then, I got p****d and realized I was much stronger than how I was being perceived. The more I talked about it I opened a window to criticism and judgment. 

Say nothing. 

Act “normal” without being transparent with your fears and people leave you alone. 

That’s what’s happened where I work now. They can say whatever they’d like I get respect for being kind to others and my kindness has caused them to see past my breath issues. 

The beloved interview. 

I was thinking today that I’m taking all of your words with me; from everyone here; and I’m going to think of every single coping strategy I can: I’m already drinking cold water vs room temperature, ordered Xylimelts, had vitamin D checked, and called specialists today. 

I need to get p****d enough to walk into that interview and rock it. I know the content knowledge and it would be a shame to waste it on my fears. 

You all have helped so much. 

Thank you for this post. 

And others. 

I promise to let you know how the interview went.....

I found a picture of me from kindergarten this weekend. I was wearing white patent leather shoes, had two strict pony tails, and held a diploma and with a gap-toothed smile, before it closed; and, I had begun to miss it. 

I thought of all all of you today; and, I feel I take all of your words with me to every counter, with every question, and in the allergist's office yesterday, when I told her the med wasn't working. I suggested meds from altarg and was able to land two of the three. The allergist wanted to put me on a "new" drug." It's not what I wanted and didn't go ahead with it. partially, because I need to find a new allergist instead. 

But im realizing the symbolism in finding the picture. You are pushing me along, helping me prepare for the interview tomorrow. All of you have given me something: Snailj (your sharing about your friend in college and your golden comment about behavior predicting perception)....I was more care-free prior to this and am working my way back there; human behavior is interesting....Christine, your story of faith,  to knowing I needed to hear it and want to experience it again more strongly....I think that day is coming and hope it's sooner than I think....Wendy, your words of comfort, altarg (your medical and lifestyle suggestions are amazing and used in some form on a daily basis in my short time here)...all of you...I have a big day tomorrow and will privately hope I see it as a scene versus the entire movie., a scene in which I am the director. 

Gary Zukav taught me that. 

And i I like it; because you are all a part of it. 

I will ilet you know how it goes and hope you'll say a prayer. 

Good night-

 

Prayers and good thoughts go with you, Oly.

I'm not sure how to reply to the group, but here goes:

I woke in the wee hours of the morning with dry mouth and fell into a momentary panic of questions: Should I go? Cancel? Excuse myself? Or take it upon myself to just...GO. 

So I did. 

I first met met with two heads of department. I realize amidst the first meeting dry mouth was seeping in. I drank the cold water (thank you all for the change in temperature. I used to drink room temp) and just nodded and spoke sporadically. Afterwards, I went to the bathroom and hydrated, used gel, etc. Then on to the department head who was quite pleasant. He sat across from me...the chairs were in a wide circle and I was grateful for this small, yet redeeming detail....I told him I was freezing and he gave me a jacket out of his closet, just after my guide had come.  

Next, I had to teach a group of 14 students: I taught Music as Literature and spoke for a short term of modernist vs post-modernist literature. I had made copies of the lyrics for the students and showed a video of Gregory Porter's "Be Good," a jazz selection/easy listening tune. Prior to the video, I spoke on how literature, good literature, should appeal to the five senses. Students were to listen to a song and characterize the five senses by using the lyrics. Closer to the end, I gave them eac. A fortune cookie. They ere to read the fortune and write a short story, while listening to Nina Simone's "Ne Mes Quitte Pas." I also played "Dodo" by Dave Matthews. 

Afterwards, I gave them a copy of a poem by Yusuf Komunyaaka and thanked them. They thanked me as well. 

Lunch afterwards where here I only ate cantaloupe and cucumbers and honeydew. i was able to connect with my friend who works there and had encouraged me to come. We hugged and chatted and I was able to use nasal cleanser and gel. 

Next, meet with English dept. it was both fun and enlightening. I felt awkward sitting sideways, but I knew my time was running out. 

I did feel that that a couple of people sensed, smelled the dry mouth, even a few students, but I calmed myself down. I was candid about sjogrens and that conversation lasted only a few minutes. In my 40s, I'm honest with people about who they're getting even more so and because I WILL need water and bathroom breaks. 

I was asked a question about about what I did do if I didn't get the job and my answer was spiritual, not desperate. 

I brought home home a ziploc bag of treats that I treated myself to, since I didn't have to face anyone and to celebrate having gone to the very interview that had frightened me. 

No no matter what happens, I did it. 

For four hours, I sat through talking, teaching and judgment and if the one thing I learned was that ice really helps and that it is okay to embrace where I am NOW, then all right. 

Thank you you all for your support. 

Ill keep you posted. 

Oly-

Well done Oly! You're an inspiration to us at all.

Can I take this opportunity to pull up something another poster (Wendy?? Mandy??) suggested in another SS thread.

As well as getting the tonsil stones looked into I really do think you should consider the question of H. pylori infection. You wouldn't necessarily have to have a gastroscopy. In fact the urea breath test is more accurate for this particular problem. I'd suggest googling it, then maybe trying to find somewhere in your area where it could be done.

H. pylori is a very common cause of halitosis - as frequent as tonsil stones or tooth decay. It's also one of the easiest causes to cure. It requires a two-week course of two different antibiotics, after which the breath test is repeated. I know it's not pleasant to take antibiotics, but well worth it if it can cure this upsetting problem for good.

Fantastic, Oly. No matter what, you had a great day AND you took care of yourself. I had no idea that teaching interviews were so long & hands-on.

Yes, I read that somewhere, but had NO idea about the test you’re talking about. THANK YOU. Before  my appointment with the allergist the other day, I scheduled appointments with ENT, gastroenterologist, abd dentist and I am bringing your suggestion right with me. This is valuable information. 

Thank you so much for it. 

It never would have crossed my mind. I’m going to reset arch it for sure. 

Thank you. 

Yes, they can be, depending on the school. I must say. This one was the LONGEST in terms of teaching high school. It’s a private episcopal school. There were times where it felt long. You know? But then I told myself, one down, just keep moving to the next appointment. 

I took Xylimelts, gel, water, Halls cough drops, cherry flavored, abd a few other things. 

Yes. No matter what. 

It’s done and I can get back to finding out how to treat and get rid of this. Great suggestion from Lily above that I’m taking to gastroenterologist in April. 

Thank you for cheering me on  

I’ll keep you all posted on the results. 

Oly-

Ps: my friend did text to tell me that the Dean saw her and asked: “You have anymore friends like that?” He was super cool and relaxing to talk to. He’s the one who gave me his jacket, when I was freezing. 

Good for you!! You should be so proud of yourself! Look what you can deal with in the face of discomfort. Well done!

I will look into this and thank you. However, I do believe my own problem is simply the result of my mouth being virtually glued shut almost 24/7. 

Again though, thanks for the pointer x

I agree. I had H pylori. I don't know if you have some of the symptoms though. I lost 29 lbs in a month and a half without trying. I always had a sense of fullness even if all I ate was a cracker and if course bad breath. It went alway completely after antibiotics but I had to undergo an EGD. Hope this is all it is for you. Many blessings

Thank you. I am . The journey continues....

Hi Lily:

It’s been a long day for me, but I wanted to let you and others know how much your advice has helped me in this fight. 

Today, I went to my gastroenterologist (last visit to him)....and told him about my breath issues and the dryness. I saw him last in 2016, before I knew I had Sjogren’s. What did he say? That H Pylori has nothing to do with bad breath and went so far as to say if it is gone, it worsens your breath. I didn’t believe him and fekt that for every question, he was deflecting. I simply felt he didn’t have the answers (and this was later noticed by another patient who said he’s horrible with difficult illnesses and s/he doesn’t feel he knows what he’s doing). He suggested a protein diet. No sugar. No fruit. And inferred is be happy, because I’d “lose weight,” which it’s assumed that because I am a woman that should be a suitable response to my issue. Of course, it wasn’t. 

I’d taken a snapshot of your response above and told him I wanted a breath test. He immediately agreed to a referral (which collided with his earlier view that H Pylori doesn’t cause bad breath: why agree to a breath test you claim would be for nought?). All I wanted was the referral. I took the paper and was pleased I had come armed. 

Thank YOU. 

I’ve also gone to a dentist (had four tonsil stones removed) and my ENT who has me on two weeks of antibiotics (but only one) to see if this is just bad bacteria. I’m almost done with it and there’s no difference. 

I hate to get my tonsils removed and still have the same problem. I’m replacing both the allergist (also saw her and her bedside manner isn’t pleasant) and gastroenterologist. 

My brother and I had a deep conversation. He suggested I see his doctor in Dallas. I called to see if my insurance would cover it. It will, but his office wouldn’t see me...BUT the doctor recommended I see a Rheumotologist not far from Dallas. She’s supposed to be very good. I’ve also discovered ACT dry mouth gum which helps when I’m NOT at work. Every time I think I’ve discovered a solution, work kills it. 

But...I’ve been fighting since I was last here, as you all can see. 

I haven’t heard anything about the job...but it’s okay. Either way, I’m going to continue to search for answers. My appointment isn’t until May with new rheumatologist. 

In the meantime, I’m going to keep researching. The breath test can be done at several locations. I’ll let you know how it turns out. 

Good night and thank you all-

I wouldn't have those tonsils out if a doctor you trust isn't telling you that you need them out. Spry also makes both gum & mints, sweetened only with xylitol.

Are you allowed in this age of omnipresent water bottles to have water at your desk & sip from it during class?

Hi oly,

Glad to hear you're making a little progress with your doctors. I'm afraid you're not the only one on here who's had their health threatened by incompetent, or even ignorant, doctors. I know aitarg has, and I had a real brush with death myself just five years ago at the hands of doctors who couldn't or wouldn't think out of the box. (I've never posted it here, as it wasn't SS-related.)

I agree with aitarg: keep the tonsillectomy as a possible last resort, once you've exhausted everything else. I have no personal or professional experience of tonsil stones, my limited nursing experience having been mainly in neuro, but I stumbled across a lot of posts on this subject over on the dental boards of this site a couple of years ago. I'd strayed into that section when my dentist was trying to bully me into having a root canal that I felt was unnecessary, and I wanted more info. (Turned out I was right, I never had it done, and the tooth has now made a full recovery.)

Anywho, halitosis came up a lot on those boards, and I read at least two posts from people who'd undergone tonsillectomy for severe stones, only to claim the stones had repopulated the operation sites. I stress that this is anecdotal evidence, but it might be worth checking out.

Incidentally, I do think your doctor made one good point: sugar. Eating too much sugar, including natural fruit sugar, won't cause bad breath but it certainly won't help it either, as bacteria love sugar. As well as cutting out refined sugar altogether, I'd advise sticking to max two pieces of fresh fruit per day. And eating them as whole fruit too. Juicing or turning them into smoothies, even without adding sugar, makes the natural sugars more available. Not sure about the high-protein diet though.

Oh, and do complete the second week of the antibiotic course. They sometimes take a long time to work, especially on chronic infections.

Incidentally, did you know there's a forum dedicated to halitosis on this Patient site? It might be worthwhile to look around on there too. They let you post in as many forums as you like.

I really admire your spirit and determination. You deserve to get answers!

Yes, I am. 

But teaching requires a lot of talking and I read a lot of the passage so we discuss. For as much water as I drink, it doesn’t help much with dryness (the example I like to give is pouring water over a cactus). 

I’m still researching and will be glad when I find something that actually works versus wasting money on so many efforts to get a grip on this. 

Thank you-

HI Lily: 

Thank you. 

I’ve been looking for the halitosis site you mentioned above, but can’t find it. If you have a link, please send it along. 

Yes, sugar. 

He made that point, but it wasn’t one I didn’t already know and certainly wish he’d been more helpful/useful. 

My next step is to take the breath test. I think it should be taken after a day of work, since it will be in true form. 

I wish there were more doctors who knew about Sjogren’s and steered us in the direction of those who do. It saves time and money. In the meantime, I’m going to try the rheumotolgist in Texas. It can’t hurt. 

I’ll keep you posted. 

Hi oly,

You can access any of the pages on this site by clicking on "Reply" to any post, then clicking on your own name. This will take you to the site Home page, where you can select Discussion Forums and do a search. Various information pages are also available from the Home page. Here's the one on halitosis: https://patient.info/health/bad-breath-halitosis

And here's the Oral and Dental Problems group: https://patient.info/forums/discuss/browse/oral-and-dental-problems-3395

Happy surfing!

HI Lily:

I’m having the breath test done now. Sitting for the 15-minute wait to breath into bag again. 

I’m SO glad you suggested it. The two weeks of antibiotics didn’t work. It was only one and either not prescribed long enough or should’ve possibly been a combo. 

This test will help get those answers I hope. 

No response from school yet. 

I’ll keep you posted. 

Oly-

Hi oly,

I do hope it goes well. Even if you get a negative result, you'll still know that you've eradicated one more cause.

H. pylori hadn't been "invented" when I was a nurse, but it's my understanding that in the event of a positive it's normal to give two antibiotics at the same time for two weeks, accompanied by a PPI or similar med. However, if you've got as far as a specialist, I guess they'd be the experts in how to treat a positive result.

All good wishes - for the test and the interview results.

Lily

Hi:

I tested negative for HPylori. 

My next step is to see a rheumatologist in Texas. She’s supposed to be highly recommended. I’m still on my journey, but dealing with it a little better. School is out on the 25th, so I’ll have some time to relax a bit. 

I’ll keep you informed of the visit and upcoming tests. So glad to have discovered this forum. 

Oly. 

The Dallas support group has a fundraising walk every year in June, just FYI.

I'm sorry to hear about that oly. Well, not sorry that you haven't got H. Pylori, but sorry it isn't the cause of your halitosis after all.

Will a rheumatologist be able to help you with this? I think I'd be more inclined to find a really good ENT to look into tonsil stones - but not one who'll just remove your tonsils without investigating whether they really are the cause of the odour. Also, have your sinuses been investigated?

I'm just wondering whether you have a persistent bad taste in your mouth too - though obviously if the problem has been around for years now, you probably wouldn't notice it. Reason for asking is that nearly 30 years back I went through a prolonged period of chronic sinusitis - which eventually turned out to be a dental problem that five dentists in two countries had failed to diagnose. I had a foul taste in my mouth for a couple of years, and I know it gave me bad breath too during that time. Do you notice a bad smell when you sneeze, by the way. I had that during the sinusitis period.

I hope you can find a solution. I know how distressing it can be when you don't dare talk to people close up. I know this from experience - not so much the experience of the sinusitis period, since that finally got fixed by an oral surgeon. I have a completely different problem, but one that is just as embarrassing.

I spit when I talk. We all do a little bit, but I positively shower people. For some mysterious reason I always seem to be able to spit liberally, even during periods when my mouth is so dry my lips are stuck to my gums. Like you, I too try to keep my distance or else put my hand in front of my mouth when talking. I went through agonies of embarrassment when I was young, and still feel bad now when I occasionally see people wiping their faces when I'm talking to them. For years I practised reciting reading aloud with a piece of blotting-paper in front of my face, trying to analyse and fix the cause, but I never figured it out.

I know this doesn't help you find a solution, but I just wanted you to know you're not alone in being afraid to talk to people, whatever the reason.

 

Did I ask you already whether you have chronic bronchitis & lots of mucus you have to cough up?

When is it?

Hi lily:

I do have sinus problems. My ent worked with me as best he could. I think I need to change allergists. The one I have isn’t all that good and I need to know if it’s chronic sinutis. Were you diagnosed by an allergist? If so, what specifically was done to help it? Cure it? You probably put it in your post, but can you pass along specifics?

I would much rather have the spitting issue. But you never know until you’re in that position, so I get it. This is very frustrating. 

I saw a new rheumatologist in Dallas two weeks ago. She too about 8 vials of blood. I don’t have results yet. And a chest X-ray. I didn’t tell her about the bad breath. The appointment seemed rather quick. 

Would love to hear from you and thank you for your encouragement. 

Oly. 

I have had bronchitis several times over the past five years. My coughs are normally very dry. No mucus at all, unless I’m very sick. 

Hi oly,

No, I've never seen an allergist.

My case was probably rather special, and not connected to yours - although one never knows, I suppose, so I'll give you the details anyway.

I wasn't correctly diagnosed by anyone for 10 years. My GP periodically prescribed antibiotics for the sinusitis, which produced all the characteristic signs and symptoms of fever, facial pain and swelling etc., and I consulted two ENT doctors during this period. They also diagnosed sinusitis (one did X-rays and found the left maxillary sinus completely filled with gunk) but neither answered my questions as to why I was so often getting left-sided sinusitis when I almost never got an actual cold.

The other difference was that I only had the foul taste in my mouth during, or in the run-up to, attacks of sinusitis - though that covered quite a lot of the time in those 10 years anyway! When I was given antibiotics (amoxicillin) it would go away for a while. Also I was told that the foul smell when I sneezed was absolutely characteristic of sinusitis.

During all that time I also had several attacks per year of severe toothache in an upper molar on that side, which would last a month or so then subside. This was actually what concerned me most. (It might be worth mentioning that the intermittent odour was never like the normal smell of tooth decay - it was much more sulphurous and worse when I sneezed rather than in my mouth.) I saw five different dentists in two countries during this period, but all told me they couldn't find anything wrong. They all X-rayed the tooth whenever I complained, and always told me it was quite normal. The dentists, the ENT doctors and my GP all insisted there was no connection between the frequent attacks of toothache and the sinusitis - both on the same side - though it always seemed to me that they must be linked.

After 10 years of intermittent sinusitis and frequent periods of raging toothache, the infection that had been eating away invisibly at the inside root of the second upper molar on that side finally started on one of the two outer roots - which are visible on normal X-rays. My regular dentist - who I blame the most for all this - apologised profusely and referred me to an oral surgeon. I blame the regular dentist most because he saw me at least twice a year throughout all this and continued to dismiss the toothache as nothing or "gum disease". I only visited the other four on a few occasions each. The oral surgeon removed the tooth - with great difficulty as it had become fused into the socket because of the years of infection - and scraped out the diseased bone.

That was in 1992, and I haven't had a single attack of sinusitis since, nor do I have problems with bad breath, except first thing in the morning, like many people.

To conclude, I suspect this information isn't useful to you, though as I said, one never knows. After all, five dentists and two ENT doctors between them never put two and two together till the root infection moved to the outer roots of the tooth and finally became visible. I don't imagine this is the problem in your case, but it just goes to show that quite serious medical problems can hide in plain sight for many years, so it's worth continuing the search.

I hope you finally get some answers.

I have just been diagnosed by a specialist that I have a floppy trachea...which was great..as my cough was soo loud and quite often..he knew it straight away..once I went on the asthma breathing apartus he knew it...I do suffer from asthma, but this was different I suffered it for quite a while so did people near me lol., be blessed oly, have a lovely day.💐😍

Wow. 

What a LONG journey that must’ve been for you. Sometimes, I wish we were the doctors (although my father thinks we are, since we tell THEM what’s wrong with US) and could pinpoint the problem straightaway. 

I’ve been on a journey to find out where this is coming from for nearly two years. It’s wmbarrassing, depressing, and crippling at times. 

I’m so grateful for your sharing your story. I appreciate any and all stories, experiences and it’s when I’m on this forum that I feel comforted by a community of people who don’t judge and can understand my experiences. 

Today, I received results from a back X-ray I had done last week. My lower lumbar has arthritis and I’m missing cartilage, so my spine (the lower part) is bone on bone. And I feel it. It’s very painful and has gotten worse the past year. She also used the term “missing vertebrae.” I’m 45 and because of the Sjogren’s my joints feel robotic. 

It’s such depressing news. Yet, I’m glad I had the X-ray done. It’s been a tearful day...the good news is I managed to get a bamboo hut a friend and I built about four to six years ago partially down after its collapse. It’s my summer project.   Exercise. Etc. I’ve gotten rid of some negative Energy and am in a better place to accept the news. 

So thank you. 

Thank you much for sharing your story. 

Oly. 

Awesome, Christine!

I know that ANY answer is better than none. 

I had a very peaceful, spiritual day....it’s gonna be a good summer . 

Much peace to you-

Oly. 

Any spiritual day is a great day Oly, bless you🙏?😇