Burning Mouth Syndrome? Opinions please.
- Thread starter Sunny
- Start date
Hmm. This sounds like the kind of experience my mom has had. She will feel tired and is told the numbers are just fine. She will feel unbearably nervous and 'wired' and ask to have the dose lowered and is told they won't do it because 'the numbers are fine.' She sees the same story on the thyroid and thyroid cancer support groups she finds online. You have a lot of company, but that doesn't help anything.
You know, I just thought of something regarding the diet coke-- I have a neighbor who is starting some chemotherapy that may cause mouth sores, and she has been advised to manage this by avoiding all fizzy drinks, and to cut coffee/tea back to half a cup a day or less as tolerated. Though I know you already tried to skip the cokes for a while without noticeable results. But like you said maybe it would if you gave it more time.
Maybe related to the soda, or to other things that may be more like an allergy, I had a bad reaction to a soap once, and the inflammation lasted for weeks after I'd stopped using it, so if you are sensitive to something, it may take time to let the reaction calm down.
Slightly off topic: I think ALA can stand for two different things: alpha lipoic acid, which you pointed out helps some but not all people with BMS, or alpha linolenic acid, which is an omgea 3 (in walnuts and in chia seeds for example) that the body can use to make other omega 3's
You know, I just thought of something regarding the diet coke-- I have a neighbor who is starting some chemotherapy that may cause mouth sores, and she has been advised to manage this by avoiding all fizzy drinks, and to cut coffee/tea back to half a cup a day or less as tolerated. Though I know you already tried to skip the cokes for a while without noticeable results. But like you said maybe it would if you gave it more time.
Maybe related to the soda, or to other things that may be more like an allergy, I had a bad reaction to a soap once, and the inflammation lasted for weeks after I'd stopped using it, so if you are sensitive to something, it may take time to let the reaction calm down.
Slightly off topic: I think ALA can stand for two different things: alpha lipoic acid, which you pointed out helps some but not all people with BMS, or alpha linolenic acid, which is an omgea 3 (in walnuts and in chia seeds for example) that the body can use to make other omega 3's
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From this site, it seems like it isn't super-easy to get your medical records in the U.K. But it does offer some tips.
View your GP health record
View your GP health record online, find out what's included in a GP health record and what to do if there's an issue with your record.
www.nhs.uk
Of course it may be more effective to spend your time researching how to lower your crp, whatever it is.
FredVegrox
Forum Legend
I hope the issue is worked out and you get over that. I share generally that whole food from vegetation like vegetable plants and fruit plants, and whole grains, without processed food stuff, is healthiest avoiding so many issues to health and well-being. I think it can't be bad for any issues, though I never saw this issue being mentioned. It is something to really try out.
Sorry, I know BMS is not the same as dry mouth, but I have heard before that dry mouth can be the result of low thyroid, and it seems like something like that might exacerbate the BMS problem, just intuitively. And I don't know if any of the things that are supposed to help you deal with dry mouth might also offer any amount of relief, however small, in the more severe condition of BMS?
www.hopkinsmedicine.org
Dry Mouth Remedies: 14 to Try
Thank youSorry, I know BMS is not the same as dry mouth, but I have heard before that dry mouth can be the result of low thyroid, and it seems like something like that might exacerbate the BMS problem, just intuitively. And I don't know if any of the things that are supposed to help you deal with dry mouth might also offer any amount of relief, however small, in the more severe condition of BMS?
Dry Mouth Remedies: 14 to Try
I have tried and continue to try these options or at least some of them but they have not helped. I am trying now to simply increase my water intake. I doubt it will help but at least it will be good for me overall Well it seems I can not get the MMA test. The GP says I would have to be referred to Haemotology and that they would not be likely to test as my other tests are ok. She says that there would be other signs if the B12 were very low such as high MCV and MCH which they were not when last checked. She is sending me for the basic blood tests again.
I begged for help, I don't mind saying, but it was not successful. She said she could send me a second opinion from another oral consultant but I don't think there is any point in that. Consultants do not investigate issues like this (chronic). She asked if i would want to try amitryptiline but I don't want to take something that not only makes me feel half asleep but also, is just masking a problem.
She said everything had been done that could be but nothing has been done except to send me to the oral consultant which came to nothing and give me the general b12 test. I suggested some investigation into the issue such as allergies, mma test, thyroid med change? etc but she dismissed it all.
Anyway, I just wanted to update anyone who commented here with advice or opinions. I am going to begin doing some of the other things I spoke of previously and see if I can find the answer myself.
I begged for help, I don't mind saying, but it was not successful. She said she could send me a second opinion from another oral consultant but I don't think there is any point in that. Consultants do not investigate issues like this (chronic). She asked if i would want to try amitryptiline but I don't want to take something that not only makes me feel half asleep but also, is just masking a problem.
She said everything had been done that could be but nothing has been done except to send me to the oral consultant which came to nothing and give me the general b12 test. I suggested some investigation into the issue such as allergies, mma test, thyroid med change? etc but she dismissed it all.
Anyway, I just wanted to update anyone who commented here with advice or opinions. I am going to begin doing some of the other things I spoke of previously and see if I can find the answer myself.
Sorry to hear about your issues which sound very unpleasant. I agree with the advice to find a specialist in oral medicine, the pathway to whom may be better sought through a dentist rather than a GP. They are few and far between. I have little to add, except 1) a while ago I had an allergic reaction to a lip salve (I think it was lanolin, in something I had bought thinking it was vegan) and this was accompanied by a burning tongue and gums as well as all the skin peeling off my lips (lovely!). Eventually it was treated with steroid cream which worked very quickly and the burning sensation went away too. So an allergic reaction is possible. And 2) I suffered from "burning feet syndrome" for a long while, and still do occasionally and never really got to the bottom of it. Although my B12 levels were OK I doubled my dose just in case - the symptoms did improve although this may have been entirely coincidental. It may also have been a perimenopausal thing. One thing I did notice, was that when there was another source of pain (in my case, the horrible lip allergy for example) the pain in my feet seemed to disappear as if my brain was able to reprogramme itself to ignore one pain and concentrate on another and it made me think that behavioural techniques might help. Might be worth looking into, eg find a psychotherapist or hypnotist who specialises in chronic pain to see if you can at least manage the symptoms while you look for the cause. Sending my best wishes - I appreciate how distressing it can be x
Well, best advice I can give is limit your diet to the same whole plant foods for weeks, (from Dr Gregers Daily Dozen list to get proper nutrition) and keeping a journal.\
Switch to non flouride, very basic toothpaste--maybe baking soda?
don't use anything on face or lips other than a very neutral oil.
Use non allergenic detergents
After maybe six weeks see if anything changes. All I can say is this should at least remove allergies or sensitivities to the equation and not cost you
Hi, do you mind if I ask if you are currently taking any other supplements besides the alpha lipoic acid, the Together Health Multi, and the Testa?
(I was asking because I looked up the multi and it doesn't seem to have as much B12 --or other B's for that matter--as you might find in some other multi's. It has 5mcg B12 in a pill, and it is in the methylcobalamin form which may be less stable, so you may not be getting the full 5mcg. So if B12 is something you are considering, maybe you'd want to add another supplement with more?)
According to this link, 5mcg is really the very bare minimum if you are taking it once a day. If your health isn't optimal, I can't help but wonder if getting more than the bare minimum would be better.
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Hi, those are the only supplements I take. I did a fair bit of research into the supplements before deciding on them and asked lots of questions. I made a nuisance of myself to them I am sure.Hi, do you mind if I ask if you are currently taking any other supplements besides the alpha lipoic acid, the Together Health Multi, and the Testa?
(I was asking because I looked up the multi and it doesn't seem to have as much B12 --or other B's for that matter--as you might find in some other multi's. It has 5mcg B12 in a pill, and it is in the methylcobalamin form which may be less stable, so you may not be getting the full 5mcg. So if B12 is something you are considering, maybe you'd want to add another supplement with more?)
According to this link, 5mcg is really the very bare minimum if you are taking it once a day. If your health isn't optimal, I can't help but wonder if getting more than the bare minimum would be better.
I noticed the b12 was lower than most too and when asked about it this was the reply:"We use whole food B12 in the vegan mult. Whole food nutrients are created by taking synthetic nutrients, growing them into foods, and making them part of the food matrix on a molecular level. They go from being isolated molecules to being part of the food, just like the naturally occurring nutrients. This means we can provide a high supplemental dose that is easily recognised by the body and highly absorbed.
The absorption rates vary per nutrient, but wholefood B12 is about 250% more absorbed than isolated B12. So although we have to use the same NRV figures as isolated nutrients, to reach a more comparable amount to isolated B12, the figure should be multiplied.
Also, B12 absorption decreases drastically as the dose increases. About 56% of a 1-microgram isoalted dose is absrobed, but then it drops significantly after 2 mcg, in fact absorption is only 2% at doses of 500 mcg and 1.3% at doses of 1,000 mcg, so most of the benfit froms from the initial micrograms consumed. Products containing hundreds of micrograms do little to no better than products containing far less.
So long story short, yes the dose is plenty, and you'll likely absorb more of the 20 mcg in our product than a 500 mcg isolate product."
can you link what you're taking? I've never heard of vegan whole food b12Hi, those are the only supplements I take. I did a fair bit of research into the supplements before deciding on them and asked lots of questions. I made a nuisance of myself to them I am sure.
"We use whole food B12 in the vegan mult. Whole food nutrients are created by taking synthetic nutrients, growing them into foods, and making them part of the food matrix on a molecular level. They go from being isolated molecules to being part of the food, just like the naturally occurring nutrients. This means we can provide a high supplemental dose that is easily recognised by the body and highly absorbed.
The absorption rates vary per nutrient, but wholefood B12 is about 250% more absorbed than isolated B12. So although we have to use the same NRV figures as isolated nutrients, to reach a more comparable amount to isolated B12, the figure should be multiplied.
Also, B12 absorption decreases drastically as the dose increases. About 56% of a 1-microgram isoalted dose is absrobed, but then it drops significantly after 2 mcg, in fact absorption is only 2% at doses of 500 mcg and 1.3% at doses of 1,000 mcg, so most of the benfit froms from the initial micrograms consumed. Products containing hundreds of micrograms do little to no better than products containing far less.
So long story short, yes the dose is plenty, and you'll likely absorb more of the 20 mcg in our product than a 500 mcg isolate product."
Here is the link. I am guessing he means they don't start out as "whole food" but through a process, become a whole food? Vegan Multi
They do sound great, but might try eliminating them for (a couple weeks?), maybe take a methyl b12 in meantime
Lichens and the seaweeds could be problematic
The thing is, I had the problem before I began taking these. I switched to them because of the problem- but I will include them in the elimination "diet" I am going to try soon just to see if there is any improvement.
Lou
Forum Legend
oh oh. I'm back with some nitpicking. I think everything you said is mostly right.
From what I understand from a lot of reading, is that only a half of a microgram (µg) can be absorbed at one time.
the entry point for B12 is sometimes described as a gateway. I'm pretty sure this is just a metaphor for something more complicated. And the gateway is only .5 µg wide. once the initial .5 µg goes thru the gateway closes and then it takes a few hours for it to open up again. So the rule of thumb is that your body can only absorb .5 µg per meal. After that initial .5 µg, only a small amount is absorbed. I can't remember but I think it's like one tenth of one percent.
Here is what Dr. Gregar says,
For adults under age 65, the easiest way to get B12 is to take at least one 2,000 mcg supplement each week or a daily dose of 50 mcg. Note that these doses are specific to cyanocobalamin, the preferred supplemental form of vitamin B12, as there is insufficient evidence to support the efficacy of the other forms, like methylcobalamin."
Instead of taking B12 supplements, it is possible to get sufficient amounts from B12-fortified foods, but we would have to eat three servings a day of foods each providing at least 190 percent of the Daily Value (on the Nutrition Facts label), with each serving eaten at least four to six hours after the last (based on the new labeling mandated to start January 1, 2020—the target is 4.5 mcg three times a day). For B12-fortified nutritional yeast, for example, two teaspoons three times a day may suffice. For most of us, though, it would probably be cheaper and more convenient to just take a supplement. Our fellow great apes get all the B12 they need eating bugs, dirt, and feces, but I’d suggest supplements instead!
Supplementing Vitamin B12 | NutritionFacts.org
The latest research on vitamin B12 deficiency, the best sources, and the daily recommended intake. Learn more in easy-to-follow videos.
nutritionfacts.org
How about toothpaste? My mother had to switch to non-flouride, which wasn't easy to find! She was getting sores all around her lips. It happened kind suddenly, but when she quit the flouride she was fine. I don't recall if she had problems inside her mouth or not
