Next portion of protocol

I have my next portion of the protocol. We are now targeting bart/persisters and a little bit of babesia. I will be on dapsone, rifabutin, azithromycin, cefuroxime, flagyl, and diflucan and coartem. My first question is, aren't I supposed to be taking folic acid or folate with the dapsone? The nurse practitioner of Dr. J didn't say anything about it and I always read that you are supposed to do that. Any advice on this protocol especially since I am on dapsone would be greatly appreciated. Im hoping this next part does the trick.

I was prescribed a high dose of folate called Leucovorin to take with the dapsone.

You should call the office and ask about it.

Did you get a very long list of lab work to do?

Folic acid is not strictly required with dapsone unless you’re pregnant or have iron deficiency is my understanding; there are a few other reasons like bleeding disorders. I’m not sure if perhaps females might sometimes need supplemental folate more commonly, from the monthly loss of >1mg during menstruation. Certainly won’t hurt to take some, but OTC doses are all measured in mcg instead of mg.

I tried dapsone at 200mgBID for a few weeks, planning to go back on it soon. Herx was intense as soon as I went up to the 400mg, almost seemed concerning for about 18-24 hours, but no problems staying at that dosage for two or three weeks after (pause wasn’t due to any issues). I noticed urine became surprisingly darker than usual first thing in the morning, unrelated to hydration, slowly became less significant during the week after stopping, probably hemolysis?? No idea how normal that is, my ID specialist lacks experience with my infections. He was very relaxed about prescribing me dapsone compared to some other drugs, so I dunno. 300mg/day dapsone is documented as a fairly safe “maintenance dose” for some indications.

I am surprised they use flagyl instead of tinidazole.

I’m curious if they gave you specific instructions on combining Rifabutin and dapsone? In leprosy, it seems the modern regimen is to only do a short burst of Rifampin once a month, because the Rifampin significantly lowers the dapsone levels. Seems unclear why Dr J doesn’t worry about this.

Folate blood test, and maybe also homocysteine

bro123 said...
Girlie, I will ask about the leucovorin. Also what labs should I get checked. The only labs I am getting is the regular safety labs. I hope I am prepared for the dapsone.

My remaining symptoms are still a lot. I would say I am about 35% recovered.

The dapsone is 25 mg 2 times a day. Is this enough dapsone?

The first appt I had there was a long list of lab work - some tests were once only.
Then after that it was pared down - and I did labs monthly.

Re: dose of dapsone - I’d have to check my protocol from 2018.
Hope I can find it - I’ve been cleaning/junking out the spare room where all my protocols etc are - and they’re not filed - they’re just in a pile on the floor!

bro123,

Someone bumped one of your old posts today, and I remembered you and saw you haven’t posted since last year. This was your last post. You were about to start the bart/persister phase of treatment. If you see this and are inclined to give us an update, would be interested in hearing how you’re doing.