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Lisa Maury Jan 11

Dear Howard,

Here is the information I promised to send, finally, regarding Myobloc and one of the more aggravating and potentially harmful effects as it relates to oral hygiene....... DRY MOUTH.

After developing antibodies to Botox I have been receiving injections of Myobloc for my spasmodic torticollis/cervical dystonia.  After my first set of injections I was forewarned about possible dry mouth symptoms.  I believe it took only three or four days after the injections when I awoke with the most aggravating dry mouth.  It was the classic cotton mouth syndrome and when I tried to speak, the words formed in the most awkward and frustrating ways...another excuse not to leave the house.  When I spoke on the phone I had to apologize every three words and take a sip of water.  I carried a bottle of water with me at all times and have never been so hydrated.

Since I have only experienced one or two cavities long ago, I did not realize dry mouth is harmful to the teeth and gums.  Saliva protects the mouth, gums and teeth.  I visited my dentist for my twice a year regular cleaning only to discover I had two more cavities and slightly receding gums towards the back of my mouth in a couple of areas on both sides.  I had the cavities filled and the gums repaired with an enamel type substance placed in the exposed areas and the gums stretched over the top of the teeth.  I must confess, I could not maintain a positive attitude and spent some time crying in the privacy of my home.

My neurologist explained that with each subsequent series of injections the dry mouth side effect would decrease.  This has proven true although I wish I had known about products to use during the worst couple of injection cycles.  I should have called my dentist immediately and been prepared. I guess that after 10 years of injections I have become as burned out as a dog chasing it's tail.

My kindly dentist is Stephen M. Friedman, D.D.S..  His address is 3300 E 1st Ave., Suite 580, Denver, CO 80206. His phone # is 303-321-0055.  His fax line is 303-333-9148.  The wonderful person who answers his phone is Debbie.  If you have questions about the following products, how to use them and where to purchase them you may call his office.  Debbie has always been a joy to deal with.

1.  3M ESPE Thera Mints (100% Xylitol Sweetened Mints)  They come in multiple flavors including fruit personal favorite.  They will NOT cause tooth decay.  REMEMBER....any candy drops or mints such as Altoids promote tooth decay and keep your dentist busy.

2.  GC MI Paste Plus....Topical cream with calcium phosphate and fluoride (0.2%).  Many flavors available including melon.  I suppose for romantic encounters, mint flavors may be best!

Finally, I'm not sure what it is, but everybody I have encountered from your newsletter (including Abbie Brown whose clinic I attended and Dr.
Auberle who you recommended I speak with) are beyond incredible.  Is there a genetic connection between this painful, frustrating disorder and the people drawn to it?!

Lisa (Maury)

PS There are a few more products I wanted to mention.  I learned about them from my pharmacist, Neelu, at the Sav-on drug store (303-340-4459).

1.  Biotene Spray....OTC and quite popular....advisable to have your pharmacist order in advance.

2.  Salivasure....another OTC option

3.  Gum for dry mouth...another OTC option.  The only downside of perpetually chewing gum is the effect it may have on the TMJ.  Talk to your physician about this option.

I highly recommend that any ST patient talk with their neurologist and make sure they have stocked up on a variety of these products prior to the first encounter with Myobloc.  It would be advisable for the neurologist to provide a list of options and remind the patient to talk with their dentist.

Thanks for letting me give my input!