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Posted 3/17/2021 9:34 PM (GMT -5)
So I’ve been on antibiotics for awhile now and found a combination that helps me but everytime I come off I feel terrible. It’s at the point where I’ve been on for like a year and tried switching to other things but I cannot switch from this one regimen (rifabutin and minocycline). I’m scared that the “progress” I feel isn’t real and I know I can’t be on these meds forever so I don’t know what to do.
Posted 3/17/2021 11:18 PM (GMT -5)
How about instead of stopping - do a pulsed protocol.

How long after stopping do symptoms start again?

Maybe take them 3 or 4 days a week.
At least you’re reducing the meds

If that works - then you could continue the 3-4 days a week but try doing 3 weeks on and 1 week off.

Of course discuss with your llmd.
Posted 3/18/2021 6:18 AM (GMT -5)
I’ve tried that but I usually can’t function pretty immediately afterwards so that’s why I can’t pulse.
Posted 3/18/2021 8:25 AM (GMT -5)
I've read that minocycline has anti-inflammatory effects. Perhaps that's the helpful element, and a different anti-inflammatory might help instead? Does your LLMD have any ideas about why you decline so fast after stopping the antibiotics, or what might be added or subtracted so you can make more progress? Which symptoms come right back? I remember your other posts about this, and I'm so sorry to hear you're still stuck.
Posted 3/18/2021 8:30 AM (GMT -5)

saraeli said...
I've read that minocycline has anti-inflammatory effects. Perhaps that's the helpful element, and a different anti-inflammatory might help instead?


Good point.. Patient166 could you do a simple test by continuing mino while discontinuing rifabutin?
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