burning mouth syndrome very severe

Posted by mygrigio @mygrigio, Aug 5, 2011

I am a 76 year old women and have had this condition for almost a year. it is getting worse everyday. been to many doctors and not one of them has heard otf it, I am getting desperate

I am 74 years old and have had BMS for several years. I was told this by a dermatologist. He was the only one to find this. Saw primary, ENT, Dentist. Not one of them found this until he did, then they all acted like they knew what I was talking about. I have had shingles (without the blisters) 3 times. I get fever blisters often. Had dentures that I can't wear because my throat started to close one day and my mouth wouldn't work, I couldn't talk at all. None of the doctors could explain this but they say don't wear the dentures, so I have no teeth. Several years ago I found a mouth wash at Walgreens that contained peroxide. It seemed to help but they quite carrying it. I found it once online at $12. a bottle. Now I can't find it and I can't remember the name.I'll try again.
Once when I had a mouth and nose full of fever blisters a friend told me about taking large doses of L-Lysine (3,000 units daily) Now when my mouth starts burning and I see the start of fever blisters I start taking L-Lysine immediately and it knocks it right out. My primary care doctor has also given me Famciclovir 500 MG.an antiviral It seems to help too. This is for the Herpes virus but it seems to stop the burning of my mouth which can be more the virus.
I have not had the pain problems that most of you talk about. I will pray for you all. God Bless.

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If you don't mind spending $18. for a tube of toothpaste Amazon has Silver Toothpaste. It doesn't burn your mouth and it acts to disinfect.

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@donnaclabaugh

I am 74 years old and have had BMS for several years. I was told this by a dermatologist. He was the only one to find this. Saw primary, ENT, Dentist. Not one of them found this until he did, then they all acted like they knew what I was talking about. I have had shingles (without the blisters) 3 times. I get fever blisters often. Had dentures that I can't wear because my throat started to close one day and my mouth wouldn't work, I couldn't talk at all. None of the doctors could explain this but they say don't wear the dentures, so I have no teeth. Several years ago I found a mouth wash at Walgreens that contained peroxide. It seemed to help but they quite carrying it. I found it once online at $12. a bottle. Now I can't find it and I can't remember the name.I'll try again.
Once when I had a mouth and nose full of fever blisters a friend told me about taking large doses of L-Lysine (3,000 units daily) Now when my mouth starts burning and I see the start of fever blisters I start taking L-Lysine immediately and it knocks it right out. My primary care doctor has also given me Famciclovir 500 MG.an antiviral It seems to help too. This is for the Herpes virus but it seems to stop the burning of my mouth which can be more the virus.
I have not had the pain problems that most of you talk about. I will pray for you all. God Bless.

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I too take 1,000-2,000 mg l-lysine daily to control the cold sore/fever blister outbreaks that seem connected to BMS but I have not yet had shingles. I also have a supply of both 500 and 1,000 mg valtrex if l-lysine does not suffice. I was just tested for heavy metals and my system has a lot so will be detoxing – hoping this may lead to helping my burning mouth.

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@mamajomclane

I too take 1,000-2,000 mg l-lysine daily to control the cold sore/fever blister outbreaks that seem connected to BMS but I have not yet had shingles. I also have a supply of both 500 and 1,000 mg valtrex if l-lysine does not suffice. I was just tested for heavy metals and my system has a lot so will be detoxing – hoping this may lead to helping my burning mouth.

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Fever blisters and shingles are both of the Herpes family but they are not the same. I hope you never shingles.

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@donnaclabaugh

I am 74 years old and have had BMS for several years. I was told this by a dermatologist. He was the only one to find this. Saw primary, ENT, Dentist. Not one of them found this until he did, then they all acted like they knew what I was talking about. I have had shingles (without the blisters) 3 times. I get fever blisters often. Had dentures that I can't wear because my throat started to close one day and my mouth wouldn't work, I couldn't talk at all. None of the doctors could explain this but they say don't wear the dentures, so I have no teeth. Several years ago I found a mouth wash at Walgreens that contained peroxide. It seemed to help but they quite carrying it. I found it once online at $12. a bottle. Now I can't find it and I can't remember the name.I'll try again.
Once when I had a mouth and nose full of fever blisters a friend told me about taking large doses of L-Lysine (3,000 units daily) Now when my mouth starts burning and I see the start of fever blisters I start taking L-Lysine immediately and it knocks it right out. My primary care doctor has also given me Famciclovir 500 MG.an antiviral It seems to help too. This is for the Herpes virus but it seems to stop the burning of my mouth which can be more the virus.
I have not had the pain problems that most of you talk about. I will pray for you all. God Bless.

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@donnaclabaugh Thanks for one more piece of a puzzle and I 2nd your use of the L-Lysine. I just read this last week in the newspaper column called The Peoples Pharmacy that one person who wrote in about cold sores says eating Kiwi fruit can help get rid of them and the authors said there was some research backing this up. Interesting that seem to be many reasons for mouth sores and many ways to help get rid of them!

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@destinnana

Did you use B12 spray in mouth or take the capsules? Does the spray relieve pain?

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I've been using a Vit B-12 Quick Dissolve under the tongue; it's 2500 mcg by Nature's Bounty. Because my blood tests lately have said there was too much B-12 in my system, I now take it every other day, but I will not quit taking it because it seems to be the key reason I haven't had mouth sores for years now. However, I noticed that some one posting here uses Amitriptyline to treat hers and I also take that for another reason; perhaps that's part of my success in treating BMS !

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@jjaklee

Has anyone had success with medical marijuana

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I haven't had any experience with medical marijuana but I was very impressed reading the March 2019 edition of NUTRITION ACTION Health Letter which is published by the nonprofit Center for Science in the Public Interest. They have an article on pp.9-11 called "10 Things You Should Know about CANNABIS," including how to understand the terms THC and CBD and what these stand for, as well as how they work. This article also lists the only three specific uses that Cannabis has conclusively or substantially been noted for positive medical outcomes. CBD can interfere with medications that include "some statins, calcium channel blockers, and antidepressants." This article also cautions on using edibles because the standard dosage can vary by state or take longer to work than they expect, leading some people to take more and become unpleasantly high. Also labels are misleading and some even have detectable levels of pesticides, microbes, or solvents. Their "take-home message: If you try THC, start low. That means around 2-3mg. Work you way up slowly until you get the effect you want."

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@mollyquilter

I've been using a Vit B-12 Quick Dissolve under the tongue; it's 2500 mcg by Nature's Bounty. Because my blood tests lately have said there was too much B-12 in my system, I now take it every other day, but I will not quit taking it because it seems to be the key reason I haven't had mouth sores for years now. However, I noticed that some one posting here uses Amitriptyline to treat hers and I also take that for another reason; perhaps that's part of my success in treating BMS !

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Hi.Thanks for the dosing info on Vitimin B12.Stu

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@lexie

I have found a wonderful group on Facebook. They are way ahead of dr’s. I urge everyone to join us and discuss what you are going through. I went to Mayo and was so disappointed at the end of my appt. They do not know anything. Please try FB.

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I realize this is an old post but if you are out there I just came back from Mayo Clinic with same (non)results….2 plus years o
f hurting

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@lorikat

I realize this is an old post but if you are out there I just came back from Mayo Clinic with same (non)results….2 plus years o
f hurting

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I just returned on Monday from Mayo. I feel blessed to be able to go and feel I’m getting the best help Available. It’s a journey and I pray the day will
Come when a cure can be found. I truly believe stress makes it worse at times.

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Does anyone use medical marijuana for Sjögrens? I see in Illinois it is one of the conditions listed for which medical marijuana can be prescribed.

Liked by lauren123

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@lauren123

Hello lexie and phyllism, I think that there may be different causes and treatments for BMS. After ten years of trying different methods, I find the greatest relief comes from Klonipin and a laser. I don’t think that hormonal testing will help (I had a hysterectomy and there was no change.) Changes in the weather also make a difference as my BMS also involves some arthritis. I have read that women have this condition more often than men.

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@lauren123

Liked by meadowhouse

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Hi Lauren
You mentioned in an earlier post that klonopin and laser are the only things that help with your BMS.
I am very interested in hearing more about the laser therapy. I have found a dentist who has an MLS laser
and I’m thinking about trying it on my mouth.
Can you tell me more about your experience with laser treatment?

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@patriciao

Does anyone use medical marijuana for Sjögrens? I see in Illinois it is one of the conditions listed for which medical marijuana can be prescribed.

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@patriciao

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@patricio

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