Oral specialist - advice - alpha lipoid acid, tooth mouse and saliwell splint

[Bigleyj]

Hi everyone,

I saw my oral specialist a week ago and have just gotten round to raising enough energy to post some info.  He is a lovely man, brilliant bed (chair) side manner and very understanding.   

A bit of background.  My dry mouth causes burning/stinging in my tongue and bottom lip, also swelling of the tongue and inner cheeks.  My teeth are not good and most of them are quite sensitive, I used to only be able to eat or drink room temperature stuff, not hot or cold at all, ever!

So, I told my specialist about this forum and he was quite happy for me to pass on any info he gives me.  So there are 3 things I want to pass on/ask.

1. He has told me that there was a study of alpha lipoid acid (made from flaxseed I think) where patients with dry mouth took a 300 mg capsule twice a day which resulted in much reduced buring/stinging.  In Australia we can only 200 mg or 400 mg, so far I can only find 200 mg pack of 50 capsules for $40, hmmm that would last me 16 days. So I haven't tried it yet.  Does anyone take this, has it helped??

2. because of my sensitive teeth he put me onto tooth mouse which has been great.  I really recommend it if you have sensitive teeth. I am eating ice cream

3. he is making me a saliwell splint (2nd generation). I searched the forum and saw that there was some discussion back in 2010 (I think).  He tells me it is avail in the US and he tells me I can pop it in and use it as many times as I need during the day.  This would be a replacement for pilocarpine (can only get drops in Australia, also it has apparently been discontinued which explains why it can be difficalt to get).  Anyone using one of these... Any feedback?? I get mine early April.

Apart from the above I guess I'm going along ok at the moment, coming to terms with the fact that im fatigued nearly all the time... Possible the plaquenil hasn't actuall kicked in yet (started in November).  I've been back at work for 6 weeks since the Christmas break and each day gets harder, wears me out a lot and is very stressful.  Hoping to reduce my hours a little and see if it helps.

Sending all my best wishes, crossed fingers, positivity and strength for all those that need it with tests, struggles and challenges.

Jo.

[Joe S.]

Jo, I take R-lipoic acid which is a better form than Alpha lipoic acid. I also take Acetyl-L-Carnitine. These help with brain fog among many other things.

To lower my cholesterol I take 5600 units of flax seed omega-3 a day. I do not like fish oil. It helps wigh other things also.

Since I avoid the sun, I take 2000 units of D3 per day. It is closer to what we are lacking.

I take another supplement for energy. But try these first as it has mild side effects, and a counter indication. It may also be an endangered species until they develop bigger farming efforts.

[Carolina]

Tooth mouse?

Saliwell splint?

I guess I have to Google these things. 

But TOOTH MOUSE?



Hugs, Elaine

[Carolina]

Oh, Tooth MOUSSE!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3692195/

SALIVARY PACEMAKERS

I have NEVER heard of either one of these things.

Who knew?

Hugs,  Elaine

[Jasper]

I take Super R-Lipoic Acid, which I buy from Life Extensions (on-line). As Joe stated, it is a better form than Alpha Lipoic Acid.

Alpha-lipoic acid consists of two different forms that have different properties. The "R" form is the biologically active component that is responsible for lipoic acid's  antioxidant effect. The "S" form is produced from chemical manufacture and is not very biologically active. Typical alpha-lipoic acid supplements consist of the "R" and "S" form in a 50/50 ratio. That means a 100 mg alpha-lipoic acid supplement is providing 50 mg of the biologically active "R" form.

That is why I take R-Lipoic Acid instead of Alpha Lipoic Acid.

I started taking it mainly for the anti-oxidant properties and for the neurological benefits. I have peripheral neuropathy and some cognitive issues.

If I order 4 bottles of 60 caps each (240 mg/cap) (at a time) it costs me $33.75 per bottle. I take 2 caps a day so 1 bottle lasts me 30 days.

[Sooki]

I see the Tooth Mousse is made by GC.  I've used GC MI Paste which is a remineralizer.  It adds calcium and phosphate (and fluoride with MI Paste Plus). It says it 's good for enamel and reducing sensitivity.  My teeth seemed to feel smoother when I was using it.  I don't know if it ultimately helped at checkup time; so many factors!

[cccourt1942]

Hi Bigley,
    You had me at "burning tongue"!  You said exactly what I thought had caused me to suffer the burning tongue/mouth.  DRY MOUTH.  After being here a bit over a year, I began to realize there aren't that many of us who have this painful condition...but almost all of us suffer the dry mouth.
     While visiting a new ENT recently (for something else) I asked him if he treated burning tongue.  He said of course he did.  Then he stated, it's all hormonal you know.  I was stunned.  (mine was dxed over the phone by a friend's daughter who is a dentist!!  she also gave me the product name to treat it!)
     Reading your post caused me to google hormones and burning tongue.  The best article I found is in this link:       http://www.aafp.org/afp/2002/0215/p615.html
     PLEASE note this article is over a decade old.    I am passing it along anyway due to the ?? re the hormone connection (in 2002) AND the stats on how many people do NOT have it...plus the fact SjS is not mentioned anywhere.  A LOT has come down the pike since it was written (regarding burning tongue and SjS. )
    I use Sensodyne toothpaste and have for decades. Well..it may not have been around for decadeS.  But ..a long time anyway.  I can't wait to order the Tooth Mousse.  And....I have a question:  What is an "oral specialist"?  I am trying to figure out the equivalent in our part of the world.  Sounds like he knows his business. 
    Have you looked up the lipoic acid (either R or alpha) on Amazon?  Surely there is a  distribution center in Australia, Singapore, or Hong Kong.  The price is much less.  Don't know your exchange rate presently. 

    Interesting post...good luck on your treatments and fatigue.  It's an uphill battle.  Keep us posted on treatment outcomes and comfort levels!!
c3

[Bigleyj]

Thanks everyone,

Joe and Jasper, I'll definitely look into getting Super R-lipoic acid.

Elaine -yes who knew is right!!

C3 - I used to use sensodyne (for years and years like you) ...Last year before I was diagnosed with SJS my whole mouth was in so much pain that I started googling and found another forum where someone was told by their dr to stop using it. I was sceptical but would try anything so I stopped.  The level of burning reduced immediately!!!  It didn't go all together but definitely better than it was.  I will never ever use it again.  So now I use biotene dry mouth toothpaste (it's great) and the tooth mousse plus (this has the fluoride in it). I'm not saying you should stop but for me it did help so maybe it's worth trying.  I guess an oral specialist is a dentist who does more study to become a specialist, lol, I dont know all I know is it was my dentist who had no doubt that the burning was part of dry mouth, he knew exactly what sjogrens was as soon as I told him I had it and he said I must see a specialist. Between them I feel very fortunate.  Maybe ask your dentist about a specialist and if your current dentist has never heard of SJS or doesn't seem to know what the symptoms of dry mouth are then maybe find one that does - that's what I did (my old dentist was, I hate to say it, useless).  I haven't looked at the hormones article yet but I will, thanks.  Let me know how you go

Cheers,
Jo.

[bluegardenia]

ciao ccc. an oral specialist here is a maxillo facial specialist. hes not a dentist but his specialisation is about all what can happen in your mouth, from cancer to yeast to bad closure of your mouth ( hope its clear...) it was the one who made my 2 biopsies.he knew about burning tongue and mouth and he said it was due to dryness and neuropathy.

[bluegardenia]

and i also used for years sensodyne but i had to stop and use biotene for dry mouth, much better

[cccourt1942]

Well of course...in all my years of working I only had two children (both in early high school) who were treated by an oral maxillo surgeon!  But yes...I also recall when I lived for 6 months having popped my jaw bone out of its joint, and had seen every specialist to whom I was sent--and when I accidentally popped it into place EVERYONE asked why I hadn't gone to an oral surgeon.  Big duh!  Over here this specialization is a specialty under dentistry.  Thx.  And thx for the tip on sensodyne.  To tell you the truth, I use the fluoride Clinipro at night, and my dentist gives me biotene toothpaste so I use it most of the time.  Now that I am on low dose, daily prednisone I think it has helped my tongue "maintain."  My palate feels normal now too!  A bonus.  btw: the sensodyne was given to me years ago as I jumped so much in the dental chair!  They presumed it was my teeth and gums.  The truth is I don't like going to the dentist's office!!
c3