BP: 5:45am left arm 83/50 (75) right arm right arm 91/67 (79)

I actually feel a little bit better today even though my blood pressure really isn’t better.

(I like the jump in my pulse a little bit in between arms, I got nervous after I did the left arm and it showed when I took the right 🙂 )

I’ve been keeping track the last 24 hours of *every* single medication I take and the exact time I take it, which is a first for me…perhaps I should have been doing this for years, but now I really need that kind of information. The problem with the infection I have now (Actino), it’s hard to tell the difference from day to day, what’s working or what’s not working (maybe cuz it’s slow growing?). Normally in the past, I’ve always been able to tell, almost instantly, whether or not an antibiotic was at least helping, because it would take an edge off.

This is the first time it’s been really difficult for me to tell quickly whether or not an antibiotic is working, and now that I’m really sick, so I just need to keep track. Once I find a combination that does work, I’m going to have to stick with it…for a long time.

So the combo I’m doing right now:

IV Meropenam
Oral flagyl
Oral Cipro

Yeast is always a constant companion…dealing with that as it arises. I’m also taking SubQ Ig, which is definitely helping, though I don’t always take it as regularly as I should (so I’m working on that too 😜👍).

Seriously though, I’m in a very rough spot, but the fact I feel slightly better this morning (and my blood pressure didn’t get any worse), tells me I should I stick with this plan for awhile and see where I am in a few days. After a days of being on this combo, my blood pressure should be normal by then…if it’s indeed working…if it’s doesn’t get too much better soon then I probably will go to the hospital for a workup…

(There’s always a chance my blood pressure could be dropping for another reason—like a problem with my kidneys or heart—but I’ve been down this path before and every other time it’s been an infection. I’m gonna go to Cedars today and check my blood to make sure it’s not kidney failure or something, but that’s unlikely. It’s possible this is happening as a rare side effect to the SubQ, but with my history all the evidence suggests infection—plus I was tasting little mucous sludge out of the bottom of my mouth around my teeth the last could of days (and I’m not tasting it so far this morning). It’s gross and usually comes up when I’m relapsing with this Actino infection—)

As time passes, it’s getting harder and harder to hold on with this infection…and less and less room for error…when I say I feel a little better than yesterday, only means a little bit better but I still feel like I’m at death’s door…

(It’s also possible I feel a little bit better because I dropped a liter of saline through the night, but I’m gonna hope more that I’m feel a little bit better because I’m on the right path—)


It was still dark out when I checked my blood pressure. If I’m taking it when I’m in bed, I like to do it before I move much.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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