Up Down Up Down Round and Round

Lungs are tanking. I'm dragging because breathing is sucking me dry, but other than that, I don't feel terrible. I really don't. It's just the lungs being giant dick-taints (That's a new word. I just made it up. I like it.). 

I pant pant pant. Why why why. Ugh ugh ugh.  I took some prednisone this morning on top of Pulmicort. I'm trying, man.

We saw Infectious Diseases a few weeks ago for a second opinion on the kiddo. That's really why I'm here. To process that. Because it's been on my mind a lot.

No one wants to hear about your sick kid; the six weeks of fever log we've kept because the rheum told us to, the joint pain and swelling that is somehow never clinically relevant, the constant angst of where the line is on the level of activity, the diagnostic limbo, trying to make life work, be a good parent when there's a fever every day. You just don't talk about these things even if they consume your life.

And we don't have a good diagnosis yet, which means there are no patient communities I can seek advice in, not without feeling like a poser or risking a mistake.

And the Lyme groups are just insane. I did poke at them and then quickly exited when I saw the phrases adrenal fatigue and medical medium and ozone IV.

The only woo I'm interested in is woo that's had some good clinical studies. Beyond that, no, just no. 

So we're a bit homeless over here at the moment.

Anyway, this ID Doc was the bomb. Very knowledgeable. More proactive than anyone else to date. 

We finally got bloodwork ordered for what they called the 'full fever of unknown origin workup.' I have no idea if that's an actual thing throughout all of medicine or just what this doc does, but I'm here for it either way. I'm always a fan of hard data.

We're doing another month of doxycycline in case this is some kind of Lyme rebound. The thinking being maybe the first round didn't get it all. There's mention of a second round of antibiotics in the medical literature so I was aware of it, and it seems like a reasonable thing to try. Doc told us it's 1-2% of patients and very rare. (If only they knew how much experience we have with the R word...What? My kid an outlier like their momma? Shocker!)

They referred us to their pain clinic for the joint pain. We will also be looped into the long haul covid clinic potentially for chronic fatigue syndrome. Apparently, that's no longer such a fringe woo woo diagnosis. Doc said since SARs and now Covid, the thinking has changed, and they send everyone to the long haul clinic in their system for anything chronic fatigue.

We've got blood work to do. They're starting to look more deeply at different things.

We will potentially see immunology depending on where things are after the doxy.

I don't know what's going to shake out. I have no idea if this is Lyme or Chronic Fatigue or a juvenile arthritis of some kind or something else. I don't think the doctors know either. But the relief that we're finally starting to collect concrete data in an effort to sort it out is immense. Even just ruling things out is helpful.

I've prepared my teen that nothing may show up. That they may have to wait for science or symptoms to evolve. That this can be a bitch of a process. But if we're lucky, we'll get an easy win. 

I hope. I hope. I hope.