A much needed update

Wow… time flies.  My last post was this past summer, and much has happened.  From the summer I continually dealt with an unknown infection in my face.  In & out of ER’s again.  Scans.  Doctors that don’t listen.

In September I chose to knock out the remaining teeth in my jaw, and get implants.  The procedure itself went well.  My chin/lip/cheek/face continually hurt.  I kept getting steroid injections in my face.  The oral surgeon I was seeing really didn’t seem to want to help anymore.  “Nerve Pain”.  So sick of doctors not listening.

Around the end of October, I started to not feel good again.  The “septic” feelings started to return.  Gagging.  Feeling like death.  The rash I was getting time and time again started to consume my entire body again… this isn’t allergies…  When my blood pressure hit 200/180 at home, with a heart rate of 190, I went straight to the ER.

Sepsis.. my old friend.  How I haven’t missed you.  I was admitted within 30 minutes of getting to the ER.  I was immediately started on Vancomycin and Rocephin.  A few weeks prior, I went to a different oral surgeon, who originally mentioned a very rare infection called Actinomyces.  He was suspecting this infection was in my mouth.  So I started pushing the doctors at the hospital to treat me for that.  And for once, they listened.  They kept me on the medications, and the facial pain and the crap I was feeling in my jaw/face/chin/lips started to go away.

By day 3, my bloodwork started to look normal, so they discharged me… rudely of course.  I’m used to this by now.  I started to actually feel better for once, no pain.  That was short-lived.  2 days later, my mouth started to hurt like no tomorrow.  Pain 15/10.  One of the implants was failing.  The infection got to it.  I frantically called the Dr. who did the implants a day before Thanksgiving, and they slid me in.  They pulled off my prosthesis, and that’s when the pain went through the roof.  My mouth was on fire.  I could feel my heart in my jaw.  I started to feel septic again.

After a quick exam, and X-ray, the implant failed, and there was a massive infection.  We had no choice but to remove it.  I can honestly admit that has got to be the worst pain I’ve ever been in.  Ever.  I also had to witness the implant being removed out of my head (not a fun experience).  Once it was out, I started to feel better.  The pain was going down.  The septic feeling wasn’t going away.  The rash came back 10x this time.  I called the wife to get me back to the hospital, and away we went.

Admitted again.  This time I was not nice w/ the doctors.  I have had enough of not being listened to. I let the first doctor have it (same one that rudely discharged me).  Told him that infectious disease needs to be involved to get rid of the infection in my face.  I kept telling them over and over that this is Actinomycosis.  They changed my medications to Zosyn, and that seemed to work “ok”.  I spent the next 4 days in the hospital.  Of course, my bloodwork starts to get better, and again, they kick me out.

Yup, you guessed it… 3 days later, back to the ER.  I was met by a new ER doctor that I haven’t had yet.  He sat in the room and just listened.  And fucking agreed for once.  I need long term antibiotics. I needed to be put on Rocephin.  So he wrote up an order to be treated for Actinomycosis and referred me out to infectious disease…

Oh yeah, just wait.  It gets better.  The next day I get a call from this infectious disease Dr that I need to come in for my first dose.  I drove myself to their office, but this is when it started to dawn on me that the Dr had no fucking clue what he was doing, or what he was treating me for.  I was started on Ertapenem… never fucking heard of it.  The next day after that I met him in person.  He maybe spent 10 minutes talking to me.  He didn’t even seem to care what I had to say, or what was going on.  I gave him a long list of doctors to contact so that he could coordinate my care.  He started me on a week of ertapenem, that week goes by, not really feeling any better.  I told him, however his response was “This is the best antibiotic you can have”, and with that he continued me on it.

I had enough.  I called my immunologist and met with him.  I had a nervous breakdown in his office. He agreed to give me a shot of Rocephin with my infusion…. Finally relief.  I told my newly-found dipshit infectious disease doctor, he didn’t care.  But he finally agreed to switch me to Zosyn.  It started to work, then stalled.

After 6 weeks of long term antibiotics, the infectious disease doctor yanked out my PICC line and discharged me…. rudely of course.   I kept telling him over and over that there was an infection in my face over and over and he wouldn’t listen.  I got desperate.  And started calling another infectious disease Dr that would listen to me and help me.

I found a new Dr, but I couldn’t get into be seen for a week.  I called my immunologist to stop-gap me on Rocephin until i am seen.  Thank god.  Finally getting relief again.  Rocephin seems to be the magic bullet here.  The streaks, sores, pain, and foul taste in my mouth was going away.  I met with the new Dr, and she agreed.  Immediately put my PICC line back in and I’m being treated for Actinomyces.  The diagnosis and treatment I was fighting for almost an entire year is finally happening.

After 6 weeks, the PICC was pulled out, and I finally feel better.  I was continued on Augmentin, however, about a week after, I started getting a massive sinus infection in the right side of my face.  This time my ENT agreed to PET scan me.  PET showed a massive infection in my right sinus.  He changed my meds to doxycycline and prednisone, and I’m a little better.

During this entire time, I lost more teeth.  Only 6 left.  So hopefully by April I’ll get my teeth back, fingers crossed that this infection stays away this time.