Thank you soooooo much for your reply and the resources. The truth is, she didn’t have much to offer beside the suggestion I see rheumatology because they treat autoimmune disease here. She had me using Clōsys mouth rinse after brushing, recommended a Waterpick, Paradontex TP, BioGaia an oral probiotic, Oracoat XyliMelts for dry mouth at night.

I stuck with her recommended routine twice to three times a day. She and the hygienist said they thought I had progressed to periodontal disease between my 6 month visits because I had gotten so much worse. My mouth was on fire, bleeding, gum line beefy red. I had bad sores in one quadrant of my mouth. I could barely brush as it would hurt so bad and bleed more. They recommended beginning deep cleaning and scaling and scheduled me to begin asap.

I got scared and made an appointment with a nearby periodontist. She said what I was having was a severe exacerbation of the OLP and it was not periodontal disease. She said any deep pockets would tighten up once the inflammation subsided. She couldn’t rule out thrush. She said this exacerbation was a result of stress. She was correct, I’m under a lot of stress d/t illness of my husband and adult son. On top of that son in law calls and asks for lots of financial help d/t a life changing screwup by him.

As a nurse I asked the periodontist to throw as much treatment my way as she could think of. She prescribed
Clobetasol, a potent topical corticosteroid for the skin (which I’d used in the past for my vitiligo) and instructed me to rub some on my gums. She also ordered Clotrimazole 10mg Lozenge for the possible thrush, 5 lozenges daily x 10 days. Well I got some dental trays and smeared them up with the Clobetasol once daily for about 30 minutes and lastly. She also encouraged me to find a rheumatologist who could treat the OLP. No luck there. I came across an article about light therapy. So I bought an appliance (like a bite block) for my mouth that emits red and blue LED light to encourage healing. This combination all helped tremendously. Oh I also bought a TB head for my Sonicare that looks like a marshmallow. That helped me tolerated toothbrush in a bit better. All of this since mid March.

So that is my entire story. There must be someone that is an expert in this disease somewhere in Florida and I need to find that person.

Again, I’m very grateful for the links and I will definitely look there next for an expert. Thank you so much for caring enough to provide the comment and links.