Completed final Persister Meds cycle

I just finished on Thursday.

Prior week took D and D mon thru Fri plus rif/Ceftin m/w/f

Last week took rif/mino/Clinda
On T/W/Th

Thought I was going to get thru unscathed - and almost did - but ended up with a fever Thursday evening with full body aches, head pressure and despair 😩

Still waiting to see what my baseline is - improving each day.

I haven’t decided if I’ll take the Alinia - didn’t seem to do anything the past cycles...

Next is maintenance protocol to see how I’m doing.
Meds 4 days per month .

Not symptom free yet - hope my immune system kicks in.

Whenever I think this is the final round of antibiotics, I get another herx.

Keeping fingers crossed for you, Girlie.

Girlie said...

Thought I was going to get thru unscathed - and almost did - but ended up with a fever Thursday evening with full body aches, head pressure and despair 😩
. . . . . I haven’t decided if I’ll take the Alinia - didn’t seem to do anything the past cycles...
. . . . .
Not symptom free yet - hope my immune system kicks in.

Does this mean they may have you do another round of persisters?
. . . . .
I would do it. People can have different responses to the same treatment at different points in time. You won’t know if you don’t try.
. . . .
Focus on this. You want to get to symptom free. You’ve come too far and sacrificed too much to get to where you are now. Express any concerns clearly and don’t hesitate to advocate for yourself with your treating practitioner.

You’re going to get to the finish line. Hang in there and remember we’re all different. All that matters is that you get the sufficient treatment that gets you all the way there.

Congratulations Girlie! I am very happy for you and I hope this will take you the rest of the way to complete health and feeling good.

WalkingbyFaith said...

Girlie said...

Thought I was going to get thru unscathed - and almost did - but ended up with a fever Thursday evening with full body aches, head pressure and despair 😩
. . . . . I haven’t decided if I’ll take the Alinia - didn’t seem to do anything the past cycles...
. . . . .
Not symptom free yet - hope my immune system kicks in.

Does this mean they may have you do another round of persisters?
. . . . .
I would do it. People can have different responses to the same treatment at different points in time. You won’t know if you don’t try.
. . . .
Focus on this. You want to get to symptom free. You’ve come too far and sacrificed too much to get to where you are now. Express any concerns clearly and don’t hesitate to advocate for yourself with your treating practitioner.

You’re going to get to the finish line. Hang in there and remember we’re all different. All that matters is that you get the sufficient treatment that gets you all the way there.

////////////////////////////////////////////////


No this was my last cycle of Persisters - it was the 6 th cycle - so approx 6 months.
I had my appt in December and was told then to do two more and then go on the maintenance protocol.

I ended up doing one maintenance protocol first to determine if it was the Rifabutin killing my kidneys (the maintenance protocol doesn’t have the dapsone and daraprim )
And my kidneys were fine.

Then I did the last two Persister cycles - just finished last week.

So now I’m on mtce which still targets Bartonella - which appears to be my stubborn infection.... and something I have most likely had since childhood.

WBF - If I slip back - I will let dr J know right away so it can be addressed... similarly if I don’t make progress on the last symptoms - he’ll here about it too.
I am seeing him in a couple weeks so I will reaffirm that I am NOT symptom free yet...

Sheekster said...
Congratulations! Now what meds are you going to be doing for 4 days a month? Maybe you could focus on rebuilding "damage" or testing certain levels to optimize them? Coq10, vitamin D, etc...

Rifabutin, Ceftin, Mino , Flagyl.

I am going to get my ammonia tested in DC - it was high last time.

And my Doc here can test vit D and I should get my ferritin tested as it’s been on the low side throughout treatment.

I’m hoping I don’t have permanent nerve damage - I do get periods of no nerve pain - hoping that means it’s not permanent...

Last dose of meds was on Thursday - one week ago.


Still not feeling great...but each day is getting better. The Rifabutin hits me really hard still..so i'm wondering if I'm going on the Mtce protocol too soon.

I have 3 weeks off now so I'll see once the smoke clears what my baseline is.

For how long you treating girlie? One thing you can be proud of l, is that you tolerated all this abx, many ppl dont including me.