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breath problems and ss

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Sjogren's Syndrome
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Posted 10/13/2011 7:38 PM (GMT 0)
please help me- i went to the dentist in 2008 becuz people were complaining ubt my breath. i have nvr had more than a filling and went to the dentist regularly as a child. the complaint was that i had really bad coffee breath. i did the tongue cleaning first then went to the dentist. she found that i needed 3 crowns and some fillings and 2 wisdom teeth exstracted and a deep cleaning. after all this was done my breath went frm bad coffe to what now smells like poop. becuz of all the dental problems i went searching 4 a cause and ss. i take plq, salazn, and mobic but still have the ra pain but my biggest complaint is the breath. frm wht i hear the entire store smells like a bathroom and my boss is so tired of it that he is trying to get me fired or make me quit. i have seen a peridntst that says i dont have gum dsease or gngvitis bt evry dntst without evening looking in my mouth says i must have gum dsease bcuz of the smell. i knw people with treatd and untreatd gum dsease and they dont have a smell. i really feel like it has to b a gi problem related 2 my ss but no one will even check. what can i do
Posted 10/14/2011 2:23 PM (GMT 0)
That must be terrible. I am so sorry for you. Does chewing gum or sucking on mint candy help? Sorry I don't have any better ideas, hopefully someone else will come along that does.
Posted 10/16/2011 9:39 PM (GMT 0)
If you think it's coming from your gut, have you tried a GI Doctor?
(Gastro-Intestinal Doctor) Maybe it time for an upper endoscopic view of your stomach
to make sure everything is good...could be anything from acid reflux to ulcers
get it checked out and many well wishes to you, but ask for a referral to a GI Doctor...
that would be a start and I'm so very sorry about what your boss is doing to you, keep
a record of what your boss does or says to you in case you need to file an
official complaint, make sure you have your documented proof of what happened and where and when...
many well wishes to you, keep us posted, will be thinking of you...
Posted 10/29/2011 10:25 AM (GMT 0)
Hi Tina,

Sorry to hear about your issues. I'm usually in the fibromyalgia forum but I do also have sjorgens. I love to google so here's a link to a reputable website.

Good luck to you.

http://www.webmd.com/oral-health/guide/change-your-breath-from-bad-to-good
Posted 2/11/2012 4:57 AM (GMT 0)
thanks for the web addrs but i have and have always had great oral hygene and since this started suddenly in2008 i have visited many websites including webmd
Posted 2/11/2012 3:10 PM (GMT 0)
Hello Tina, how are you today.

Its been awhile and was wondering how you were doing and how things were for you at work?

Have you gotten any kind of relief or found an answer yet?

Please, let us know how you are doing.

take care,
Posted 10/12/2013 6:54 AM (GMT 0)
hi Denita. it's been two years since this post and things are as bad as ever. my health is worse and based on the comments so is the smell. i have new drs. but i don't see any resolution in a situation that people will only discuss behind your back .
Posted 10/12/2013 3:01 PM (GMT 0)
Hi Tinabones. I know you must be miserable with your breath problems. Bad breath is common in Sjogren's because we produce little to no saliva. Saliva washes away bacteria that can cause bad breath. So, here are some tips from me:

Always chew gum or suck on candy that contain Xiletol. This is an artificial sweetner that makes Sjogren's patients salivate. Trident gum contains xiletol and I keep it with me always. You can also find xiletol candy online. Lemon drops can also stimulate salivation.

Never use a mouthwash that contains alcohol. Alcohol dries the mouth. My dentist (who works with Sjogren's patients has me use ACT mouthwash because it doesn't have alcohol and actually builds enamel.

Use Biotene toothpaste that also helps moisten your mouth. There is a medication called Numoisten that you can also try. Biotene also makes a gel called Oral Balance that I use a night before bedtime.

If you get thrush (like I do) have your doc prescribe Nystatin swish and spit. Use it often until the thrush is cured.

I don't know if this is helpful, but I keep floss picks around my house and think nothing of flossing in front of my family while watching TV.

Prednisone causes bad breath, but I don't think there's much you can do about it.

That's all I can think of, but I really hope it helps.  Let us know how you're doing okay? Love, Butterflake

Posted 10/17/2013 8:30 PM (GMT 0)
thanks butterflake but i have tried EVERYTHING. it's not a normal situation. it's so bad that when i'm at work people come in and say it smells like a bathroom. i don't know what else to do. i spend most of my day trying to avoid people just so i don't have to hear their comments. i get called disgusting all day for twelve hours a day five days a week. and on top of that i have so much pain everywhere. i just don't know how much more i can take.
Posted 10/18/2013 3:30 AM (GMT 0)
I've been thinking about this ever since this post was re-activated recently. I've read that things like acid reflux disease, liver or gallbladder disease, and
other digestive problems can be the cause of bad breath. Also, leaky gut syndrome and bowl disease (like colon diseases), even some cancers seem to be causes of bad breath.

Have you been fully checked out by a Gastrointestinal dr? And what kinds of other pains are you having? Maybe with more facts we can put our collective brains to work and think of something you haven't yet explored.

Wishing you well,
Posted 10/18/2013 1:11 PM (GMT 0)
On the syndromes/illnesses that cause halitosis, add sinus infections and sinus problems. My daughter has had this problem all her life and although it's nothing like your problem sounds, we can relate. My issue is chronic post nasal drip. My doc has me take Mucinex every day to help prevent sinus infections. I've already had sinus surgery three years ago. My daughter had sinus surgery at age 9 and tonsils out at 17.

If anyone else can think of anything that might help tinabones, Please don't hesitate to comment. Love, Butterflake

Posted 10/30/2013 2:11 AM (GMT 0)
Tinabones, I am new to all this, but I don't see in your signature if you are gluten-free. Have you tried that? Sorry if that is a stupid question, I really am the newest of the newbies. I only ask because it sounds just like my sister-in-law's story. After months of visits to various docs, she was diagnosed with celiac disease. Her breath problems cleared up within weeks of being GF. Granted, you've probably been over this before, so please forgive me if so.
Posted 11/2/2013 6:26 AM (GMT 0)
Hi Tinabones. I'm still thinking about this. I've been on a gluten free diet about 1 year, but I can't really say one way or the other if it's helped my breath. The gluten free diet and Align probiotic has significantly reduced my diarrhea. You must be thinking what does that have to do with me? Not a darn thing, but I wish and pray that your co-workers would understand and want you to know that we're all thinking of you and your terrible situation. Love, Butterflake
Posted 11/5/2013 1:38 AM (GMT 0)
thanks for all ur responses. i have been to three different gastroenterologists. i have had the pill cam and a traditional endoscopy.they showed gerd, gastritis, gastroparesis, watermelon stomach and ive been treated for so many things. i've taken probiotics, prebiotics, gluten free and dairy free. i've seen an ent and he scoped my nose and throat and it was clear. i've seen an allergist and that was ruled out. i went to an endocrinologist for tmau testing and she had no idea what tmau was. i was put on a diet for possible leaky gut syndrome and i went from 170lbs to 115lbs and not only did the smell get worse but i started bleeding rectally really bad until i stopped the diet.
Posted 11/5/2013 1:51 AM (GMT 0)
i have been recently diagnosed with connective tissue disease and fibromyalgia and i truly believe that it's a sign of lupus with multiple organ involvement. i am on my third rheumatologist and he wants to start with just plaquenil but the only time the smell improved was when i was given certain antibiotics for a uti and when i was given steroids.
Posted 11/6/2013 7:30 AM (GMT 0)
also tmau doesn't usually come with pain and fatigue. the odor seems to be the only problem. i really appreciate u all helping me with possible sources. with lupus there's the possibility that it could be kidney or liver related but there has to be significant damage before it shows up in the tests.
Posted 11/8/2013 11:46 PM (GMT 0)
Hi Tinabones. I hope the link below works. It is to one of the most popular medical books used by docs and medical professionals, "The Merck Manual." I have a BS in Medical Technology and ran clinics for a few years, so if you need any translations please do not hesitate to ask. Also I'm not sure I understand your last post regarding kidney and liver. Blood tests for kidney (BUN and creatinine) and liver enzyme abnormalities are easily detected in blood. Anyway, read the Merck section on halitosis and feel free to email me if you have questions. Love, Butterflake

http://www.merckmanuals.com/professional/dental_disorders/symptoms_of_dental_and_oral_disorders/halitosis.html

 

Posted 11/16/2013 10:22 PM (GMT 0)
Hello everyone, first time post, I, too used to have bad breath and have had lupus and sjogrens for many years. Now for the mouth I take Evoxac, which stimulates salivary glands to make saliva. It has been life changing. No longer must I carry a drink wherever I go. Also, my mother went through foul smelling bad breath for months until an astute medical student mentioned that it could be kidney or liver related because my my mother has diabetes. He was right. It was severe kidney disease. Hope this helps.
Posted 11/25/2013 11:27 PM (GMT 0)
I know that I have slow gastric transit , rapid small bowel transit, and phytogastric retention. Is it possible that one of these issues is causing a pseudo obstruction effect that causes putrid gases ordor to be expressed constantly or what else could I explore. Its not a dental issue and its not a nasal issue. The odor is expressed equally from the nose and mouth. One Dr. Mentioned leaky gut but the treatment made me so sick that I started bleeding rectally and the smell got 100 times worse. I also dropped from 168 to 115. Another Dr. Was convinced that I had kidney or liver disease but when the tests came back normal he said I need to see a hematologist.
Posted 11/27/2013 11:37 PM (GMT 0)
Oh Tinabones. I sure wish someone could help you. I will mention that in the short piece I sent you it mentions anaerobic bacteria which is bacteria that can't live in the presence of oxygen. That's why the bacteria that causes periodontal disease is found in pockets where oxygen can't get to. As a microbiologist I will say that some of the worst smelling bacteria is anaerobic. Of course this doesn't help you at all and I'm so very sorry that no one has been able to help you. I really hope that you continue to find the source and please keep us posted on how you're doing emotionally. If you haven't considered anti-depressants or anti-anxiety meds you certainly deserve them. (((Hugs))) Love, Butterflake
Posted 12/3/2013 12:18 AM (GMT 0)
Hi Tinabones. I asked someone on the lupus forum to give input regarding your problem:

I read Tina's thread and don't think I have much to say except to see a GI doctor. Since this is unusual and complicated I would go to a major medical center where other specialists can be called in for consultation. Not sure where Tina lives but it might be her best hope.

Her problem might not be sjogrens at all????

There was a clue in her postings since her halitosis improved when she got an antibiotic. Sjogrens has to change the microbes in our body which might be a cause. Treatment....??????

She suspects she has lupus with kidney involvement and that usually shows up early with "frothy, bubbly urine." It does not have to be really bad to get to that stage.


 

Posted 3/15/2014 3:46 AM (GMT 0)
You said you have gastritis. Have you had the h. pylori breath test?
On a different note, I think your GERD (Gastroesophageal reflux disease) has a lot to do with your bad breath. You see, if acid from your stomach makes its way to or near your mouth, the partially digested proteins are perfect for bacteria to eat and produce gas. Make no mistake about it, it is the bacteria, and their gases that are producing the odor. The thing a bout saliva is that normally it contains antiseptic properties that wash down ALL bacteria in a normal person. But, in a person who has GERD and sjogren's sydrome, the saliva cannot kill or wash down bacteria. In addition, the reflux provides foods for the bacteria to live. I recommend, taking a nexium at night and in the day. In addition, exovac would help produce saliva and align will help reduce the bad bacteria in the gut. Drinking apple cidar vinegar in diluted water will help too. Take plenty of probiotics, and limit sugar and carbs as they may lead to a yeast overgrowth which is unpleasant. Please follow this regiment. You may notice your tongue become pinker, that is a sign that it is helping. Good luck with everything, and keep posting ;)
Posted 3/15/2014 12:32 PM (GMT 0)
Welcome to our forum dshon! Your reply to tinabones' problem is probably the best I've seen. You obviously have some medical background. Will you tell me more? I have a BS in medical technology (hospital lab) and have extensive experience in microbiology plus was an epidemiologist for a while. I'm just being picky here, but saliva doesn't wash down all bacteria. Everyone has what is call normal flora in the mouth. What's so interesting in your post is that GERD will introduce foods that could feed abnormal bacteria. I also agree that tinabones should also be tested for H. pylori. Lastly, I take Align daily and it has been a God send. My bowel movements are so much better than they were that I recommend it to everyone. Both my internist and GI doc told me to take it.

I'm so impressed with your response dshon! Please stop by often. I look forward to hearing from you. Love, Butterflake
Posted 5/26/2014 9:45 PM (GMT 0)
Hi Donna,

Thanks for your amazing and wonderful response. I personally am not a doctor but rather a patient of LPR and possibly sjogrens syndrome. I have had nissen fundoplication surgery for my acid reflux but I regret it because it failed. The new procedure called the LINX procedure seems to have a higher rate of success. I personally suffer from bad breath issues and have tried ozone water produced from an ozone generater to fix the problem by killing the bad bacteria, but it did not help. In addition I tried blis k12 lozenges which are probiotics to restore the normal mouth flora but also did not help. Now, I do not believe my bb is caused by bacteria. I believe some laryngopharyngeal reflux sufferers suffer from bad breath although I am not so sure why some do and some don't. It's possible that the for some sufferers the upper and lower esophageal sphincters are constantly open causing the acid and gas to be released. While those who suffer LPR without bad breath may have upper esophageal sphincters that open only when acid has reached that area and do not remain open at all times. But this is a theory.
Posted 7/26/2014 1:56 AM (GMT 0)
Hi Tinabones,
I have a similar problem too with my breath. I have excellent teeth and gums, but I have sjogren's dry mouth, post nasal drip and some GERD issues as well as lupus and thyroid, so hence, I believe my issues stem from all a little bit of each issue. I also snore. Here is my routine: To help control this the best I can, I get my teeth cleaned every 3 months, do not eat dairy and limit myself to small portions of meat as well as not much soy or nuts. I don't have TMAU since I did the test for this disease. All of my doctors and dentists says I am in good health. From my own research and on medical orders I keep a saline nasal spray with me all the time, drink a lot of water all through the day in small quantities and take a Salagen pill for saliva production 3 times a day, take a multi vitamin and calcium tablets, as well as prescription digestive pills and a 24 hour antacid at night. I eat small meals and snacks. Importantly, I use Biotene products every 4 hours because I am allergic to ingredients in regular toothpaste and mouthwash that exacerbate dry mouth and halitosis. I still struggle with bad breath and it is tormenting for me because people don't cut you any slack despite having an illness, they think you have a hygiene weakness and don't take of yourself properly. Hang in there and keep doing research on new products. Keep close to your dental hygienist as I learnt how important daily flossing is as well as cleaning the tongue with a tongue brush every time you clean your mouth. I sincerely hope you don't have any serious internal issues. Take care.
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