Burnt mouth syndrome

aylalake said:

Do you wear a Libre CGM? If so, have you found that the ALA affects the readings at all. I was taking ALA but stopped when I got my Libre as there was some concern over false high readings (as with taking Vitamin C).

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I do wear a Libre. I don't recall noticing any change in readings from taking ALA. Never noticed any effect on BG from vitamin C either.

Westley said:

I do wear a Libre. I don't recall noticing any change in readings from taking ALA. Never noticed any effect on BG from vitamin C either.

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Thank you, I will resume my ALA and see what happens. Vitamin C definitely affects my readings, and it’s a warning that Abbott gives, so I am interested that it doesn’t affect you and presumably others as well.

It's quite possible these do affect me too without my noticing the connection. My readings fluctuate due to so many known and unknown factors, and it had never occurred to me before to consider vitamin C as one of these.
Do you know if it only affects interstitial fluid readings, or is the effect visible on finger prick blood tests too?

Westley said:

It's quite possible these do affect me too without my noticing the connection. My readings fluctuate due to so many known and unknown factors, and it had never occurred to me before to consider vitamin C as one of these.
Do you know if it only affects interstitial fluid readings, or is the effect visible on finger prick blood tests too?

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I believe it is only CGMs that are affected. However there are studies into Vitamin C lowering HbaC1 in Type 2s.

Prancy said:

How is everyone doing? I may have BM syndrome.

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Just returned here to see a lot of unread replies. Will go through them and reply to group later.

barrym said:

Hi,

My wife has what sounds like the same condition. After numerous visits to dentist, GP, hospital she was finally diagnosed with lichen striatus.

She was very recently prescribed some meds by the hospital but not yet got them. She has been managing by cutting out the offending foods, salt, spicy, sharp juicy etc, but is hoping the meds will help.

It does seem to come and go in waves.

Don't know if this will help, but dropping it into conversation with your GP might result in a referral.

Obviously it's not life threatening, but having seen how it affects my wife it is quite debilitating.

I have just been reminded that she has also switched her toothpaste to Zendium. It's a totally additive free thing - the more they remove the more it costs - be aware! But she is convinced it helps.

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Hi. Catching up on replies re BMS. It's been a while since I posted my query. Update: Hosp consultant has now diagnosed my problem as Lichen Planus. No cure apparently. I was also told to stop Sitagliptin as it was possibly the cause of my problem! No treatment offered. It has been 18 months and I'm learning to just live with it. Limited diet. Most tasty food is off limits. Nightmare to eat out! So fed up. I've been told it can go away but that it will return. The worst message I was given was that there's a small possibility it can turn cancerous. Quite frightening.

If anyone has any advice to offer I will be happy to try. BarryM I hope your wife has got rid of her similar problem. Thanks to everyone who replied. I've just been a bit down with this problem - 18 mths of it.

Maeve xx

Westley said:

A few years ago (shortly after my first COVID infection) I developed a stinging in my gums and palate, and the pain would move around different parts of my mouth from day to day. At first I was convinced there was a dental issue, but scans and checks couldn't find anything wrong with my teeth or gums. I read about burning mouth syndrome and that alpha lipoic acid (ALA) might help, and started taking it as a supplement.

The problem went away entirely after a couple of months. I have no idea if the ALA did anything or it would have gone away on it's own. It's cheap though and from what I could gather fairly safe, so maybe worth trying.

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Hi Westley. Just reading about the ALA you took for BMS. Where do you get it from, GP or Holland & Barrett? Is it tablets? I'm going to give it a try as nothing is working for me so far. Thanks in advance.

Irish Maeve said:

Hi Westley. Just reading about the ALA you took for BMS. Where do you get it from, GP or Holland & Barrett? Is it tablets? I'm going to give it a try as nothing is working for me so far. Thanks in advance.

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I ordered it online - 250mg capsules filled with powder from a brand called 'supplemented'. I think it's easy to find in stores like H&B too.
I hope you can find some relief.

Thanks for info. I will try H&B first. Let's hope it works. Will report back.

Sorry that you've now found out it is lichen planus, @Irish Maeve, I will ask my sister which mouthwash she has been prescribed & also the toothpaste she now uses. She actually couldn't use anything to clean her teeth before as any set her mouth on fire & the 'webbing' got worse. She has been reading lots online & went through the meds she takes, she found that Metformin could trigger it, so she stopped taking it & thankfully has found some improvement. Anyway, I'll post up the names of the two things tomorrow later, once I've spoken to her.

jessj said:

Sorry that you've now found out it is lichen planus, @Irish Maeve, I will ask my sister which mouthwash she has been prescribed & also the toothpaste she now uses. She actually couldn't use anything to clean her teeth before as any set her mouth on fire & the 'webbing' got worse. She has been reading lots online & went through the meds she takes, she found that Metformin could trigger it, so she stopped taking it & thankfully has found some improvement. Anyway, I'll post up the names of the two things tomorrow later, once I've spoken to her.

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Thank you for your reply Jess. I'm still taking Metformin!!! Was just told to stop Sitagliptin, OMG. What meds did she replace Metformin with? My readings are really high atm. I can't use any toothpaste so just use Baking Powder. Look forward to hearing from you

Hi @Irish Maeve!

Spoke to my sis, she came off the slow release & now takes regular Metformin, she said there was a notable difference to her LP. Don't forget, stress can up your numbers, as well as numerous other things out of our control.

She couldn't use any toothpaste either & sent off for different herbal ones, which she ended up binning. Did eventually find Forever Bright, which has aloe vera in, she was over the moon to be able to feel she was 'properly' cleaning her teeth again. She also kept some Gengigel, it helps to calm the burning, an instant relief to a point. A bit like how Bonjela works. The mouthwash she uses is Benzidamine sugar free mouthwash, it's for inflammation. She found it hard to get & now gets it on prescription & said she uses the 15ml, but adds 15ml of water to it. Hopefully these will help & save you buying & trying loads, fingers crossed.