Help sorting this out....sigh

So, as many of you know, I am on a Maintenance protocol (even though I'm not symptom free) - have a few symptoms left...and am only taking abx for 4 days a month. (1 week on, 3 weeks off the abx)

I have been herxing on the last day of the meds (Friday night)...and then it resolves over a few days...then I have some pretty decent days on the following weeks until the cycle starts again.
Weeks 3 and 4 are pretty good....to the point I'm looking at working again.

However - This last cycle, I finished Friday night. Again, I herxed late in the evening...just before bed with high heart rate, fever.
Expecting to feel better Saturday....but in fact I felt worse....bad back pain...and some increased head pressure.
Sunday, not much change.
Disappointment for the past few days - because I have been expecting the herxes to lessen, but this one has gone on longer than usual.


After going to the bathroom...and seeing my dark urine...I'm wondering if I accidentally double dosed my Friday night Rifabutin. My urine usually doesn't stay darker past Saturday....If I doubled the dose accidentally....maybe it would take longer to clear?
That would explain my feeling lousy still 3 days past my last dose.


Thoughts?

ElizKA26 said...
Get a liver panel. Sounds like that's what happened. Which would explain the pain. But the dark urine. You don't want to end up with liver damage.

I get liver function tests every month - been good. Had one last week.
The pain isn’t from the liver - it’s my usual upper left side of my back (and travels down my left arm and hand.)
I will get liver function tested again in 3 weeks. Hopefully it’s still ok.

(The Rifabutin causes discolouring of urine - but this time it lasted longer - which is strange)

Upatnite said...
That’s is a tricky one Girlie.
Especially if you’re not sure if you mistakenly took double the dose of your meds one night. I wonder though, if you’re seeing strong worsening of symptoms more and more after your monthly dose, maybe run it by the dr and ask if that should be happening while on maintenance therapy. Not to scare you but what if the infection isn’t being contained as well as it once was... hence the building of more herxing? I’m not sure if that makes sense. But if you’re not feeling confident about how things are going, I would check with your dr. Also what do you mean by dark urine? Rifabutin dark or dark yellow?

Yes, that makes sense - I am wondering if the maintenance protocol is “enough” or is this a sign that my immune system isn’t keeping the infection down....

More of a brownish colour - it’s always like that from the Rifabutin but it lasted longer this time.

I will call the clinic in a couple days if I don’t start feeling better - like I have been feeling prior to this cycle.

Do you have one of those Mon, Tues, Wed, pill containers? Helps keeping track of meds as you know. It's just hard to remember with all the other crud we have to deal with. 😊😉

I'm not very useful for questions about abx, but I wanted to mention the possibility that additional stress lately could have changed how your immune system is working, how well you detox, how many hormones are being produced, and how strongly you herx. Stress is so powerful, you know? I blame recent stress levels.

Hmmm - urine still dark. Maybe it’s not discolouration from meds after all.

Could it be kidneys?

When I was on the Persister s protocol, my GfR would drop right after the dapsone and daraprim week.

Not on those drugs anymore tho.

I get kidney function tests in a couple weeks - hopefully all is good