Hello, I have been suffering from oral pain for almost 2 years. The pain in my upper palate can get so bad that I have literally wanted to give up on life. I have seen so many specialist about this and the oral facial pain doctor directed to me to an infectious disease doctor where she found I tested positive for Lyme disease and bartanella. They both agree this is the cause of my problem. I have been on antibiotics for over 5 months. While some of my other symptoms have subsided I continue to have this intense pain in my upper palate, if it was not for the oral pain specialist making me a upper palate mouth guard and prescribing me acompound paste to numb the pain I seriously believe I would have given up. This however is a temporarily fix. The pain always comes back and I am exhausted from this hell I am living in!!!Please let me know if anyone has experienced this and if they have found a cure? Sincerely Jill

Sorry to hear you are in so much pain. I don't have this issue, but I do clench my teeth so hard together that my jaw gets very sore. I don't even realize that I am doing this and then I have to force myself to stop. This might be a silly question but do you ever notice your tongue does not relax enough and maybe that the constant force and pressure on the top palate from your tongue is causing the constant pain and irritation?

I hope you can get someone to help!

have you been checked by a biological dentist?

I can't comment specifically on the ID Dr. you are seeing, but I do know that most ID Dr.'s don't properly treat Lyme disease and co's.

Since you tested positive, you really should see a LLMD for treatment.

Would you mind sharing what antibiotic protocols you have been on for the past 5 months. Have co-infections been addressed, or just lyme?

That is a good protocol.

I'm sorry, I don't have any answers about the oral pain you are experiencing.

You may need to change up the antibiotics at some point.

As you can see from my signature line - I have done doxy, zithro, biaxin, ceftin, amox, tinidazole. I haven't udated it - I am now on minocycline and rifampin.
My 'head' stuff has gotten so much better - I think maybe because of the minocycline's ability to penetrate the blood-brain barrier....but not sure.

I am new here but wanted to chime in! :)
I was just diagnosed in August with chronic Lyme after a tick bite 35 years ago. Two years ago I had horrible pain in 2 teeth(also in my jaw, cheek, and face) where I had 2 root canals. Dentists always told me everything looked fine and it was all in my head. I sought out a Biological dentist who discovered I had an infection in my jawbone from my root canals. He found it with an in-office CT scan machine. I had the teeth extracted and infection repaired. Well when my Lyme hit me really hard last year and therefore I started seeking answers, oddly all the pain in my jaw, mouth, cheek came back even though I didn't have any teeth there any longer!? It was crazy and so frustrating. But after a ton of research and talking with my LLMD he told me that Lyme can reside in the jawbone and the bacteria especially love root canals. So with my case I am thinking that is where a lot of Lyme had been hiding and then because at that time I didn't know I had Lyme, I did not have the infection cultured. Also if the bone of the extraction site doesn't grow back properly it can create what's called cavitation which can be worse than a root canal as far as harboring disease. I still occasionally have the pain which I think must be left over Lyme.
Google dental cavitation and try to find a holistic dentist in your area.
Do you have root canals or ever had your wisdom teeth pulled? I know you said your pain is in your palate but perhaps it is referred pain from teeth/jaw?

Here is a link to find a Biological dentist: https://iabdm.org/

Many blessings and I pray you find answers!

Welcome Jillj and Rebekahm! I'm so glad you've joined our community!

We know that Lyme hits several major nerves in the head - one of the most significant visuals is of Bells Palsey.

I was one that has had some major mouth pains during the course of my illness and recovery as well. They can be very hard to deal with since it's strictly a nerve pain, but keep searching as what works for one won't necessarily work for another to help you through until you heal the infection.

Rebekahm - I'm glad you have found us! I hope we can help you, support you - please ask any questions you have...

Jill- my two favorite clinics for lyme are Paracelsus in Switzerland and prevention hand healing in st Louis. Both check the jaw in every single patient.
find a good biological dentist
google dental spirochete