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Posted By : Butterflake - 11/30/2013 9:45 AM
Hi Bill. I noticed you replied to Tinabones who also belongs to the Sjogren's forum. She is having terrible problems with halitosis and over 3000 people have read her post, but she still doesn't have an answer. The severity is really unusual. You are one of the most intelligent persons I know on the forum. Will you read her thread on Sjogren's? Love Ya, Donna
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

Posted By : Bsime - 11/30/2013 9:39 PM
I will give it a shot although I don't have Sjogrens.

Posted By : Bsime - 11/30/2013 10:09 PM
Donna,

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.

Feel free to repost this if you think this will help.

Bill

Posted By : couchtater - 11/30/2013 11:37 PM
She may have H. Pyloria infection. When I had a lot of GI issues my breath was horrible.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : Butterflake - 12/2/2013 6:20 PM
I posted your reply. Thanks!
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

Posted By : Bsime - 12/2/2013 9:34 PM
Donna,

I didn't go through the obvious oral hygiene but bad breathe often originates from the tongue. Daily scraping and brushing usually corrects that. Since it seemed like the cause might be something else I didn't suggest it.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : tinabones - 6/17/2016 3:23 PM
Well it's 2016 so I thought it would be a good time to update my situation. Unfortunately nothing is better. In fact things are probably worse. In the beginning it appeared to come and go but now it is also the time. There are times when it is really bad and others when it is just normal bad. I do have oral manifestations of lupus now (or at least that is what y rheumy says.) I had a biopsy for herpes also that just showed inflammation but no herpes. It does seem that the odor is stronger when I have actual oral lesions but even when there are n lesions there is still a bad odor. The other possibility that I have considered is a jaw bone infection or cyst. When I was younger I fell off of a seesaw and I have had jaw issues every since. When the problems started I was having a lot of stress and I was clinching my teeth and grinding at night while I slept. I complained repeatedly about the sensitivity on the gum area of my lower back tooth. It has been inspected several times and even had the filling removed. There was no decay found but there was a pool of puss or exudate under the filling. Could this indicate a jaw bone issue? There was also a circular shadow on the exray at the root of the tooth and the dentist did not know what it was. There is always a crampy pain under that part of my jaw all the way to the back of my jaw bone and it appears to be extra pointy. How can I find a maxillofacial specialist that will look closer?

Posted By : couchtater - 6/17/2016 8:38 PM
Try looking on healthgrades.com.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : acquiesce - 6/20/2016 10:37 AM
Tinabones it could be a lingering abscess. That would explain why antibiotics would help and the puss in that area. Sometimes an abscess in your gums can clear up and recur or continue but not cause extreme pain. I've been dealing with one for years.

Posted By : Weleetka - 7/12/2016 11:45 AM
The gum disease Pyria.. could be the reason.. This happened to my Mom...

Posted By : Luckytiger - 5/11/2017 3:32 AM
I am suffering from bad breath too.
Diagnosed with lupus in 1993, had elevated protein levels in my urine and frothy urine.

I cleansed my digestive system with mastic gum thinking I had h.pylori bb still there. I have tried oral probiotics, zinc, vitamin c, rinses tongue scrapped, fasted, juiced, all to no avail.
I am thinking its kidney related.

Posted By : ArtsyFartsy - 5/11/2017 10:08 AM
tinabones, try typing in "oral & maxillofacial surgery locations (and add your town or largest city close by if it's tiny like mine)" into google.....

I am sorry this has been such a long termed issue. I hope you get answers !

Posted By : Butterflake - 5/12/2017 8:37 PM
Welcome to our forum luckytiger. Many Lupies have Sjogren's symptoms, and drymouth can cause halitosis. If you have dry mouth (like I do) make sure that your mouth rinse doesn't contain alcohol which drys the mouth even more. I also use Biotene toothpaste and floss daily. I have also been looking on Amazon which has quite a few dry mouth products and I'm going to order Thera Breath lozenges.

Another thing to consider is some of the meds we take cause bad breath and I don't think there's anything we can do about that.

If are organs are causing this we could have them removed, wait a couple of weeks to see if our problem is solved, and then have the doc put them back. Of course we would be on ice for those couple of weeks. smilewinkgrin Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : Lynnwood - 5/12/2017 9:10 PM
LOL. What med's are you on these days, Butterflake?

Temporary removal of vital organs, with a nice ice rest thrown in...

Humor is the best medicine, as Reader's Digest Magazine always says.

Posted By : Butterflake - 5/15/2017 10:53 PM
Hi Lynnwood. Same ol' meds. Cellcept,, prednisone, plaquenil, IVIG, multiple psych meds, metoprolol, pantoprazole, nucynta, lidocaine patches, voltaren gel, Align probiotic, and lots of OTC vitamins, etc. Oh, I just received my leg brace to help with the pain in my right knee. Years of running turned my right knee cartilage to mush and prednisone caused the rest to slip away.

Anyway, prednisone is the med that Hubby has always said causes my bad breath. Not exactly a scientific study. I doubt anyone could receive funding unless a politician's spouse/partner developed a disease that required daily doses of prednisone. Oh, what am I thinking. The politician would just step out on said spouse/partner for their bad breath. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

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