The never-ending battle

The minute my ENT put the camera in my throat things became more clear, the wife noticed white pustules in the upper part of my throat (nasopharynx). My ENT continued me on the Levaquin, and set a followup for a week. I’m still feeling like shit, however, the white spots are starting to invade my throat more, and my mouth. I had some leftover nystantin, and fluconazole thinking this was fungal.  The spots seemed to go away. 

A week later, my jaw is really starting to hurt at this point. I asked my dentist for a panoramic of my jaw. Something isn’t right. 

As you can see above there seem to be some strange shadows around my implants. I became immediately more concerned. I pulled the 5 alarm fire. Something is catastrophically wrong. As she felt around the right side of my cheek and gum, “that’s not right”. 

My perio who put my implants in agreed to see me.  My Oral surgeon will see me next week. At this point. Someone. 

On Friday it was a very busy day. Another circus of doctors. It started out with the dermatologist who was removing my cysts. I haven’t seen him in at least 2 years. I caught him up on what’s going on. He couldn’t believe it. He shot up the 3 cysts that have still been plaguing my face with Kenalog. He agreed to take them out if they continue to hurt (most likely will remove them in the near future). After that, my followup with the ENT. 

I’ll be honest. I was dreading it. I hate going alone to those appointments. It’s almost become to the point where I need someone to come with just to be there. I got to the office 5 minutes late, didn’t matter, the waiting room was full, and I just knew he was running behind. It’s ok. He’s one of the best doctors here in CO so I understand. While I sat in the waiting room, my previous experiences going solo started to replay over and over in my head. That’s when the anxiety started to hit me. 

I was called back an hour after. That’s when things changed. My ENT greeted me as he always does. I told him the brief update that I wasn’t feeling better. He immediately got the camera out and went for the throat. It’s still there. The white pustules. He continued to evaluate me, and I just told him that I think whatever he pulled out of my sinuses is just systemic at this point. 

He agreed. 

Whaaaaaaaaaaaaaat!?!???!?  Rang loud in my head. We then began to discuss the next steps. I told him that I would like to give Linezolid another shot. Linezolid is a VERY expensive oral antibiotic. It’s not Zithromax for the curious. So this somehwat confirms what I have been endlessly researching. MERS. This is the type of staph that sits on your skin. Everyone has it. Staphylococcus Epidermidis. However, for an immunocompromised person, it’s a whole other story. This stuff has probably been reeking havok on my face for years. 

My ENT prescribed it for me. FINALLY I thought to myself. I’m going to get better. Then of course insurance denied it. I told their office that insurance is going to fight it tooth & nail. It’s only gonna cost $7,000 for 30 days. Exactly. 

I waited until 3pm to see my perio for my jaw. At this point I’m just hurting. I had 5 days-worth leftover of the Linezolid. So I got that out. Once I got to their office, I was immediately taken to the imaging room. CBCT. I showed the assistant my xrays and told her I’m probably in trouble. 

As my perio reviewed the CT, he said, well the implants are fine, however you have something going on in your jaw. That’s when I asked him Osteomeylitis?  His reply? Maybe. The two dark spots you see on my jaw may be a good indication of it. So now this might confirm my suspicion overall. I’ve been fighting a bone infection. 

Monday I see my OMFS to review the CT, and to look at the inside of my mouth. It fucking hurts at this point. 

As for my immune stuff, had a setback. Wasn’t able to get my SCIg this week, the drug didn’t come in. So I think I’ll probably have to push starting SCIg another 2 weeks. Bummed, but whatever.