Labs :(

Been a long hectic week so apologies for no updates. I did get my labs back from my past IVIg therapy, and my WBC’s have shot from 9 back to 16.7.

I’d really love to know what’s doing this. I really would. At this point I have no idea what’s doing it.

I did see Dr. Hepworth early last week, and he referred me to both Neurology (HSV infection in my face), but unfortunately, I won’t be able to see that doctor until December :(. So in the meantime, he referred me to a different Infectious Disease Dr. It’s the same group that first started treating me, but then that’s when that doctor became a complete asshole.

So hopefully this doctor won’t listen to any of his input when it comes to my care. I have labs/pictures to prove what’s going on. During my evaluation, my sinuses seemed to have calmed down, however, the fungal infection continues to persist. The infection has consumed almost 3/4ths of my tongue and goes all the way back to my voice box which he could easily see with the endoscope.

Which is concerning because I’m on Posaconazole. The biggest antifungal oral medication you can be on. Os with that concern, he’s referring me to Jewish National here in Denver to have them deep dive the killer portion of my immune system. In the meantime, he prescribed clomitrazole trioches that I suck on 3-4 times a day to locally try to get the fungal infection under control.

It’s been about a week, and the infection only tongue has backed off to half, so this may be a good clue into what type of fungal infection this is. Nevertheless, I’m worried that there may be something more underlying going on with my immune system, so I hope I can gain some insight and direction from Jewish on where we go. IVIg is absolutely something I NEED…. No way will I go off that.

But Hepworth thinks Dr. Sarid is missing something. So a second set of eyes wouldn’t hurt. I could always utilize Dr. Divekar @ Mayo too. He has always been super helpful when it comes to my immune system. He is the one who came through when UC Health was absolutely useless & clueless.

I just wish this would finally be over. Having to constantly take this or that is just not sustainable long-term. It’s taken doctors forever to actually listen to me. That’s been the hardest part of this whole process. It would just be nice for once to finally have a solid answers, and viable solution to this entire problem. Having the immune disorder doesn’t help anything, but at the same token, doctors can’t just say “oh this is normal” and not try. I’m tired of them using it as the primary excuse why they “can’t do anything”.

Yes. Yes you can. It’s called practicing medicine. What I don’t understand is the mentality of “do no harm” has equated to doing nothing. Which in a very big way, is, and has been causing harm the entire time.

Tonight I managed to remove a good portion of the infection off of my tongue, but I started to immediate bleed. On my tongue, as well as my sinuses too. If I can just keep at this, keep removing what I can, it lightens the burden that my immune system has to deal with, which at this point, it’s checked out. I just have to try to break this cycle, one way or the other.