Still in Shock

This morning I woke up. With a little less pain, a little less swelling. In the past 5 days, I blew my backup stash of Famicilovir. The dermo did prescribe it, but not the right dosing schedule.

When I did the initial 1500mg dose, the next day, I felt different. The electrical feels that have been coursing through my face, neck, mouth, and sinuses, seemed duller. HSV-1, when it flares, for me, it gets bad. No wonder why I’ve been in so much misery for at least 2 years.

In the past, Dr. Schleve would hit me with Kenalog injections throughout my face and neck. Yes. Immediate relief happened, but it was always short lived. Little did we know what was really perpetuating all of this, was the consistent mold exposure. As the mold made its home all in my sinuses. Each time my IVIg would happen, it would just send my face into overdrive. The anti inflammatory properties of the various antibiotics I’ve had, again, would just be a temporary fix.

When the dexamethasone injections would happen at Dr. Lurcott’s office, same effect. Temporary relief, which would flame back 10x worse. Needless to say, steroids just encourage both fungal infections, and viral infections. Viruses are supposed to just run their course, and be done. That’s for people with competent immune systems. For me, it hangs around. When I got hit with COVID, I felt it for at least 2 months, although the first 6 weeks was pure nightmare.

Periodically Schleve, or Lemon would do HSV swabs from the sores on my head, face, neck. They always came back positive. Probably 8-9 times the course of treatment, was Valtrex. Just a short course. Until the past 2 positive cultures, we switched to Famiciclovir. But I would only get 7 days of it. 500mg daily.

HSV can rear its ugly head primarily due to stress. It’s a common trigger. Needless to say, the past 2 years, has been literal non-stop stress, anxiety in an endless loop. Yeah, I would get a break here and there. A few hours of no pain, however it would always return. Worse.

After the fungal abscess was removed from my frontal sinus, it felt like my body finally caught a break. To just suffer a life threatening heart attack a month later. It’s all related.

The fungal infection was spurring what little my immune system would do, in the wrong direction, but the inflammation, was always there. Whether it was my ESR, or CRP, those two markers were ALWAYS elevated. As the posaconazole started to go after the deep rooted fungal infection, his just spurred on my old friend to come back x 10,000. Every day my face would feel worse. I felt like shit.

Constantly.

As 2024 came, when I started to push ID, they became panicked. My WBC has been elevated for 2+ years. I would show culture results, countless times, would only be met with dead silence. The only good thing they did was the antifungal. Their shotgun approach of antibiotics was a fucking joke. Just like when I was hospitalized at Porter. Run every antibiotic as possible.

They ignored the first HSV culture. Dismissed it as minor, when really, that’s what’s in my face. The more the posaconazole did its thing, the “die-off” from the mycotoxins drove out the HSV to its peak. Yet, still ignored. My WBC was between 15-20. These people aren’t paying attention to any detail I throw at them.

So 4 week ago, I felt it starting to erupt through my neck, cheeks and chin.

I started caking on the Abbreva. Hourly. Of course it did nothing.

After the positive culture I got more Famiciclovir. But didn’t obey the dosing. The hard hitting dose, is 500mg every 8 hours. I had enough for 7 days, fuck it let’s experiment.

I started getting cold laser twice every week. It felt like I was being attacked my rubber bands while the laser was waived around. Felt like bee stings. It burned. It was the absolute worst. By the 3rd pass, the pain was dulled.

So now that’s on board.

This week was ivig, and with that, labs. I’m still shocked with the results.

My WBC is 9.1, where it was 19.2 3 weeks ago. Before the famicilovir. So based on this, it’s the fungal infection spiking the HSV. The two infections just perpetuating each other. I texted Hepworth immediately with a screen shot.

Shingles.

I wasn’t shocked at all. I’m just glad I’m starting to get the answers everyone else was unable to give me. Yesterday I saw my GP. He easily put me back on Famciclovir for 2 weeks. The dose I wanted. Also gave me acyclovir ointment. Going to hit this from both sides.

Hepworth says 6 weeks minimum. Which is fine. He glad that it’s going this way, so am I. I know this isn’t over. By a long shot. I just need to continually see improvement.

So I guess we will see what the coming weeks does. I’m not going to get excited yet.