Hi Billye!

I had asked you if you eat foods that might have proteins from these foods:

corn (even corn syrup, etc. may have some stray residual corn proteins in it),

milk products (casein, whey & other milk proteins are found in cheese, ice cream, milk product substitutes, pizza cheese, cheesecake, etc.)

soy products

yeast-y foods

eggs,

and you wrote:

"I looked at the items you listed above and if I cut them out, it will pretty much eliminate most of what I can eat."
-----------------------

I know that it has to be frustrating to even consider possibly being sensitive to your favorite foods, especially when your diet is so limited as it is! So disregard the following questions (and hit me with an organic carrot), if it's too much of a hassle, at this time:

Are you a vegetarian? If not, can you eat any meats, fish, fowl?

Can you eat any beans (like lentils, etc.)?

Nuts of any kind?

Vegetables?

Fruits?

Seeds? (sesame, sunflower, pumpkin, etc.)

You might be interested in reading about the very basic cave person type diet that Dr. Kenneth Fine eats (he's a gluten-free, milk-free vegan), that is free of all grains, all milk products, etc. See his website, at http://www.finerhealth.com

I mention all this, just in case you may be sensitive to proteins in corn, soy, milk products, yeast, eggs, etc., which you are still eating.

EnteroLab does some stool sample testing, for possible sensitivities to proteins in some of those foods.

Carol
http://cantbreathesuspectvcd.com

Carol,
I can't eat a lot of what you listed in Dr. Fine's diet. Everything has to be cooked chopped and mushy, no spices, vinegars, no nuts, no fruit (because of acid). It's pretty much a babies diet but more restricted because of gluten. I just feel that if I change my diet anymore, it will make my health even worse, because I am so limited in what I can eat. I could pretty well list on the fingers of one hand what I can eat.

Most people don't realize what severe dry mouth does. It makes you lose teeth, and it causes your mouth to be very sore. It takes saliva to start the digestive process so without it you are talking an unhealthy throat, esophagus, stomach, and bowel. You get all the problems related to that. It even causes cancer. Some people live on liquid diets just like our Kmeb here. Sorry, I'm about to get on a soapbox because of the attitude of some of our doctors about Sjogrens. Anyway, I'd rather live with the mouth burning than limit my diet any more than it is.

But thank you very much for caring enough to post.
Billye

Hi Billeye,

Here are several articles I found by "googling", with some information that may be helpful, regarding causes of, and treatments for, BMS/Burning Mouth Syndrome. See below, and see what you think about this, regarding your own case of BMS.:

Carol
http://cantbreathesuspectvcd.com

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http://forums.about.com/n/pfx/forum....tag=ab-healing

Several things from this interesting thread/topic (from about.com) about Burning Mouth Syndrome (BMS) include:

1) One patient got it from pesticide exposure

2) Another patient got it from a dental procedure

3) Another patient may have got it from a Candida yeast infection in her mouth ("thrush"), since in her case, yogurt (probiotics) helped. Look for a milk-free, gluten-free powdered bifidus &/or acidophilus formulation. Mix with room temperature spring water.

4) Another pt. found that a very low dose of a tranquilizer got rid of most of the pain, without having a tranquilizing effect.
__________________________

http://www.aafp.org/afp/20020215/615.html

This interesting article includes many possible causes of burning mouth syndrome, even some causes that the authors don't think are likely, but that should be considered anyway.

One example of a long shot, is "... chemical irritation and allergic reactions to dental materials and galvanic currents between dissimilar metals [in the mouth]..."

The authors include many possible treatments, too.

Here's some info from this article:

"OTHER POSSIBLE CAUSES"

"Case reports have linked burning mouth symptoms to the use of angiotensin-converting enzyme (ACE) inhibitors.23-25 Once these medications were reduced or discontinued, oral burning was found to remit within several weeks. Interestingly, loss of taste sensation has also been reported with the use of ACE inhibitors.23 "

[I READ THAT LOSS OF TASTE SENSATION, CAN CAUSE AN INCREASE IN PAIN RECEPTOR FUNCTION]

"Candidal infections [YEAST INFECTIONS] are also purported to cause burning mouth syndrome. Although candidiasis can cause burning pain, its prevalence has not been found to be increased in patients with the disorder compared with control populations.5,8 "

________________________

http://www.mayoclinic.com/health/ace-inhibitors/HI00060

is the link to an article that talks about ACE inhibitors.

"ACE inhibitors treat a variety of conditions, such as high blood pressure, scleroderma and migraines."

Some examples of ACE inhibitors include:

"Benazepril (Lotensin)
Enalapril (Vasotec)
Lisinopril (Prinivil, Zestril)

Uses for ACE inhibitors

Doctors prescribe ACE inhibitors to prevent, treat or improve symptoms in a variety of conditions, such as:

High blood pressure
Coronary artery disease
Heart failure
Certain mild kidney diseases
Heart attack prevention
Scleroderma
Migraine prevention

Side effects and cautions

Side effects include dry cough, increased blood potassium level, rash, dizziness, lightheadedness, changes in taste and reduced appetite over long intervals. In rare cases — but more commonly in blacks and in smokers — ACE inhibitors can cause your tissues to swell (angioedema). If it occurs in the throat, that swelling can be life-threatening...."

_________________________

http://www.dentalplans.com/Dental-He...h-Syndrome.asp

Here are some quotes from this interesting article:

"Are underlying medical conditions associated with burning mouth syndrome?"

"Certain conditions such as Sjögren's syndrome [You already mentioned this], diabetes [Melody knows much about this], thyroid disease and liver dysfunction have been associated with burning mouth syndrome, ..."

"...most people with Sjögren's syndrome have very dry mouth and almost all of them have a yeast infection as a result. When the majority of Sjögren's patients are treated with antifungal medication, they no longer have burning mouth."
___________________

http://www.healthy.net/scr/Column.asp?Id=651


Alpha lipoic acid is an antioxidant which has been shown to be beneficial for diabetic neuropathy. Another study showed that it was also helpful in "burning mouth syndrome". This syndrome is characterized by chronic pain on the tongue and sometimes the anterior palate and lips without any visible lesions. It is most often seen in postmenopausal women and has characteristics of being neuropathic pain. In a study of 60 patients, half received 200 mg of lipoic acid 3 times a day or placebo for 2-5 months. 97% of the patients improved versus 40% of those in the placebo group. 13% had complete resolution of their pain and another 74% had "decided improvement" where none of the placebo patients had this level of improvement. Almost all the patients showed some improvement by two months with 73% still showing benefit at the end of 12 months despite having stopped the treatment. That lipoic acid helps in several kinds of neuropathies suggest that it is worth trying in others as well, as it is quite benign and not very expensive."
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But, there can be some pretty bad side effects of Alpha Lipoic Acid, so see following article that lists these adverse effects!

The benefits may not be worth the risk!

http://lpi.oregonstate.edu/infocenter/othernuts/la/
"Adverse Effects [of alpha lipoic acid, "LA"]

In general, LA supplementation has been found to have few serious side effects. Intravenous administration of racemic LA at doses of 600 mg/day for 3 weeks (53) and oral racemic LA at doses as high as 1800 mg/day for 6 months (56) and 1200 mg/day for 2 years (55) did not result in serious adverse effects when used to treat diabetic peripheral neuropathy.

Two minor anaphylactoid reactions and one severe anaphylactic reaction, including laryngospasm, were reported after intravenous LA administration (40). The most frequently reported side effects to oral LA supplementation are allergic reactions affecting the skin, including rashes, hives and itching. Gastrointestinal symptoms, including abdominal pain, nausea, vomiting and diarrhea have also been reported. Malodorous urine has also been noted by people taking 1200 mg/day of LA orally (60). "

You certainly gave me a lot to digest. Thanks.

Billye

I know this is an old post, but since I too suffer from this greatly misunderstood condition (BMS or Burning Mouth Syndrome) as a dx'ed MS'er, it greatly interests me and I wanted to add to it to share my experience.

Before the MS dx, I was being treated for TMJ (tempomandibular joint disorder). I was wearing plastic crafted splints in my mouth, day (bottom) and night (top). About 2 weeks after I began wearing these, I woke up one day with a faint burning sensation in my mouth. By nighttime, this burning was out of control.

I've now lived over a year with constant burning sensation in my mouth. Many things were checked blood wise during my MS dx, 11 vials worth covering autoimmune, vitamins, minerals, diabetes, thyroid, you get the idea .

I've known for years that drinking a glass of orange juice results in a canker sore. So I don't drink orange juice. However, I recently decided to start taking vitamin C supplements thinking I was not getting enough C in my diet. I didn't think it would cause any harm in doing so. I wasn't getting cankers.

What was happening however, in starting these supplements, was my geographic tongue and fissured tongue (yes, I have both these since childhood) came back in wicked force. My BMS was through the roof (I am trying Neurontin/Amitriptyline to control the pain and agony from BMS).

So I stopped the C supplements 3 days ago. No surprise, the geographic patches and fissures have almost completely healed up and disappeared.

The burning is still there, but I woke and ate a banana today. Perhaps I am now thinking that Vitamin C could be the cause of such agony with my mouth? I have no doubt in my mind as far as the BMS is concerned that it is partially neuropathy. That's been determined. It's worse when I'm full of anxiety and stress. Better when I'm calm. I am now thinking however that controlling my intake of C could actually result in reduced BMS agony.

It's worth a shot right? The meds aren't helping as I expected. There is the option of trying Klonopin instead of what I am on now. I'll bring it to my neurologist's attention when I see him in August, but I am in the meantime going to try a vitamin C free diet for the next 2 weeks to see if the BMS calms to a dull roar again.

When I did the Candida diet last January, before MS dx again, I was able to almost completely get rid of the burning mouth sensation. This was without drugs at the time.

I really do hope however, that this is something that for me, I will find the key to, and be able to control to get relief. It's horrible pain that I live with daily.

Thanks for reviving this thread. My mouth has gotten worse but I'm sure right now it's the increased medication for the pain caused by the sacral breaks (they won't heal). I'm sure that the moving cleaning out is aggrevating the breaks. (Stretching the muscles and that in turn stretches the bones)

Everything is a nightmare right now. Trying to find a house that is dog friendly floorwise. I have one little dog that has an issue with leakage. I have to make sure everything is washable. Getting rid of the dog isn't an option. I've had him for 7 years and he's a rescue.

We thought we had found a house but the airconditioner and heating unit failed the inspection and it's a real issue with trying to work out a deal. I'm ready to call it all off.

Stress aggrevates your mouth. A lot of pressing the tongue against teeth when you are stressed.

When things settle down I'll try some of the suggestions here. I don't do acids of any kind. Or spices. They aggrevate the mouth.

Billye

Silverlady, glad you didn't mind the bump. I think it's a topic that needs more attention. The recommendations to treat this are all over the board. It seems like many complain about it, but you usually don't hear the resolution end of things (did it go away? what worked for them? etc).

Stress and anxiety do play a major role. I was aware of Klonopin as an option for BMS. I didn't want to try this one right away, and chose Neurontin/Amitriptyline first to try as a paired treatment plan. It SEEMED to work at the start, but at 600mg of Neuontin, 10mg of Amitriptyline, it's not seeming to help anymore.

Moving and buying/selling as I found out are extremely stressful. I actually had a relapse with my MS selling my house this past May. I recently (July 2nd) moved into my apartment. That was a lot of intense physical labor and working in the heat (hottest day this year so far) was not helpful with the MS either!

So I am considering Klonopin, but I'm unsure which of the 2 others (Neurontin/Amitriptyline) my neuro will remove from my routine when I do this. He did discuss the Klonopin with me as well, but we agreed to try something a little 'lighter' before going with K. Has anyone with burning mouth syndrome (BMS) had success with Klonopin? I forget the generic name in Canada. Begins with an R. I've read some say that Klonopin is the only drug that's helped with burning mouth.

I get this too, but for me it doesn't seem to be part of my PN, it is just that I need some extra B vitamins. My daughter gets this sometimes too, and she doesn't have PN. We just take some Vit B complex for a few days or weeks and it gets better.

Supplementing just one type of B Vit can be problematic, as they are synergistic. If you increase the dose of one vit B, you really need to increase the intake of all the rest otherwise you will cause deficiencies.

hth

raglet

Hi Billie

I just noticed you have Sjogrens - I do too, and have for many many years. It mainly affects my mouth and eyes. I eat a normal diet, just chew things well and drink water with meals (it can help with swallowing chewed food). Actually my biggest problem is caused by damage to my tongue (nerve damage) which makes it difficult for me to move food around my mouth and position my food for swallowing, My swallowing can be pretty uncoordinated.

You can get saliva pastilles, but they are pretty ickky really. But they do help.

Do you have any other CTD's ? I also have lupus and antiphospholipid syndrome along with my sjogrens.

cheers

raglet

I know this was addressed to another user, but I wanted to respond.

Someone suggested this to me, but I don't have dry lips or dry eyes. My mouth's dry however, but I wonder if this could be something else, or because I'm a mouth breather? I also have TMJ.