Burning mouth syndrome (BMS): Is this an autoimmune disease?

Posted by iluvkatz @iluvkatz, Jun 8, 2016

I have had BMS for 14 months. Does anyone know if this is an autoimmune disease?

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diannesmcneill | @diannesmcneill | Feb 14, 2025

In reply to @swamplady "Thank you for the story and journey Dianne. I appreciate you telling us this involved trip..." + (show)

Robbie I hope my experience helps you find your answer. After my scope I was in to see my doctor and told him I was hopeful but did not have biopsy report back yet from scope. I remember his words that he did not think reflux treatment was going to do anything to help my burning mouth. I saw my doctor again a month ago and this visit I was able to tell him results of biopsy report and that reflux treatment seemed to be really helping my burning and I had long periods of no burning at all. He was very happy for me that I was feeling better and my burning was much improved. Because of the Barrett’s my reflux treatment is long term. I can tell that the sucralfate liquid that costs my esophagus and stomach plays a big part in keeping my burning shut down. I can also tell that Nexium works better than Prilosec and that two 20 mg of Nexium twice daily works better that one 20 mg Nexium once daily and twice daily. I also have a triangle wedge that I use when sleeping to keep my upper body elevated to prevent reflux. I don’t smoke or drink. I only drink water. Since the scope and diagnosis I don’t eat spicy foods, sweets, fried foods, chocolate, fatty foods, etc that are bad for reflux. I am doing everything I can to heal my stomach and esophagus. I still read a lot. I was rereading my biopsy report last night and realized that bile reflux is also involved which ppi’s don’t help but sucralfate coats the stomach and esophagus from both acid and bile. I have an appointment next week with a specialist so will be discussing how to control bile reflux. I have fatty liver and in reading with fatty liver there is often bile reflux. Guess I am still learning!

diannesmcneill | @diannesmcneill | Feb 15, 2025

In reply to @diannesmcneill "Mine journey started with a car wreck and whiplashed my neck. I had a concussion as..." + (show)

@diannesmcneill

Mine journey started with a car wreck and whiplashed my neck. I had a concussion as I could not respond to directions. That was followed by constant tongue movement and my tongue wanted to touch one particular tooth all the time. That one tooth became painful and felt like infection and I was given antibiotics 3 times and finally pain improved. Tooth pain returned and I was given antiobiotic. Tooth pain returned and CT scan showed only inflamation by specialist. Week later dentist gave me antiobiotic with clauvenaute and infection seemed to heal and tooth pain stopped. 4 months later tooth felt like it had infection again with pain. Dentist finally replaced that tooth crown but replaced the two crowns behind it first. The painful tooth was replaced by burning in mouth, tongue, and tooth. Had allergy test and tested positive to dental material. Finally had all 3 crowns replaced 3 times total with last replacement by holistic dentist not using dental material I tested allergic to. 2nd Dentist ignored my allergy tests and used material I tested allergic to again. I continued burning. I went to holistic dentist. In the mean time I talked to specialist who did CT scan of tooth showing inflamation about doing a root canal…a request I had made 3 times over 3 years. He agreed to do the root canal. During procedure he said I did need the root canal as my tissues did not look normal. My mistake was not having him send those tissues for biopsy testing. I continued burning after the root canal. I could ease up burning some if I got off all medications which I did for 6 months but I still had burning. I was taking the medications after the root canal. I continued burning and decided to have the tooth pulled by holistic dentist. I did have the holistic dentist send my pulled tooth material for a biopsy analysis. Report came back with 13 different types of bacteria. I was given antiobiotic s twice by holistic dentist then by my doctor. In all the mix of years above I was also given medicine for trush many times not knowing if trush was causing burning or not. I had taken myself off my pain pills and pregabalin again and the burning was so bad I went to emergency room because I was burning so bad, my mouth and tongue were swollen and Benadryl I was taking for swelling was not working. That smart Dr or PA treated me with Benadryl, steroids, and medication for reflux. My burning was gone within the hour. At home I was to take pepsid ac complete OTC and hyoscyamine liquid but my husband did not know about picking up the Pepsid complete so I did not get that. The burning continued. I finally went to hospital to pick up emergency room report and saw the pepsid complete and recommendation for the esophagus scope. I called my doctor for referral to specialist for the scope. My dr and the specialist thought I was going the right direction for a burning mouth answer. I had already spent tons of money looking for answers …replacing crowns 3 times, getting a root canal and pulling a tooth… so why not spend money on an esophagus scope! Well… specialist was surprised with the Barrett’s diagnosis and reflux and gastritis with hyperplasia. Still he did not know if treatment for reflux and gastritis would help with my burning mouth. It was trial and error. 30 days later I went back to get a colonoscopy and reported I was noticing a little improvement taking the sucralfate an extra dose when I woke up in the middle of night with burning mouth the sucralfate helped the burning within an hour. It was really about 2 months before I was almost burning free most of the day. So you see…. I had a long journey. I was asked twice during this 3 plus year journey if I had reflux and I said no because I was unaware of having any reflux. Well….. I was so wrong! Reflux and Barrett’s and gastritis with hyperplasia was my answer. Yes the reflux could have been part of my dental issues! That’s the whole story!!!!

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I re read my biopsy report. The description of gastritis hyperplasia biopsy suggests that bile acid reflux may also be involved with the Barrett’s esophagus since I have fatty liver. Sucralfate liquid I take daily protects the stomach and esophagus against bile acid. ppi’s ( Prilosec, Nexium, etc.) do not help bile reflux. That would explain as I have improved with taking the ppi and sucralfate I have tried taking a break from the sucralfate and my burning will increase so I restart the sucralfate. The couple of apples and couple of bananas I now eat daily acts as acid binder for the bile reflux. I am adding more fruits and vegetables into my diet that acts as acid binders into my diet which will also help my fatty liver and high cholesterol. I am still reading and learning. I am feeling so much better! I can eliminate burning mouth for many many hours of the day and have the burning eliminated all night. Any burning I get is mild. I will have to continue taking my ppi ( taking Nexium right now) and sucralfate liquid and that’s perfectly ok with me. Oh I do take vitamin D3 daily and Premier Research Labs Phyto Methylate that contains B vitamins, Folate (5-MTHF) and Choline. The holistic dentist gave me the later for burning mouth. Turns out B vitamins and folate and vitamin D 3 can help with Barrett’s non-progression. Barrett’s is a tough one to have. I will ask my specialist to do another esophagus scope, if insurance will pay for it, to see if I have improved the gastritis with hyperplasia ( a pre-cancer) and my Barrett’s ( a pre-cancer). Barrett’s some say can’t be improved unless you do the new treatments which I don’t know if I am eligible for since I my Barrett’s had no cancer cells.

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