GI upset - Rifabutin? Dapsone? No orange/reddish color urine???

Oh girlie so sorry ....u have been thru so much ....itll stop one day u choose when?

bluelyme said...
Oh girlie so sorry ....u have been thru so much ....itll stop one day u choose when?

i feel like I'm darn close now, blue. Not wanting to stop now....up to today have been having better days for past 1 1/2 weeks

I was thinking maybe all I needed was the Rifabutin now that the babs should be taken care of...plus feeling better...more consistent .

I'm glad to hear GI stuff has stabilized. That would be more problematic (if it continues) than the eye pain imo. The eye pain is at least attributable to a herx.

The good news is that you seem to have response to the meds, which would seem to indicate they will prove to have some effectiveness for you, so in this respect it is promising. I've always hated when I start therapies and I don't notice anything, for me it usually means the med isn't going to be effective. The meds I've herxed the most on have been the ones that've given me the most improvement. Dapsone was one of those medicines.

Ha, I hear you on the dosage/lbs issue. My mom has often been bothered by that as well. At least 25mg isn't too big a dose, relatively speaking.

Good idea to skip that 2nd dose if you aren't feeling up for it. Sometimes we have to improvise based on how our body is responding and our intuition. It's a marathon, as I've often had to remind myself.

Please vent as much as you need. And feel free to email me anytime, I'm happy to listen or support in any way I can. I know how hard and scary it can be, especially when starting new therapies.

BuckeyeSDH said...

Girlie said...


I took the Rifabutin on empty stomach (just with water) ....waited about 45 minutes and drank my water with xylitol and Lactoferrin.
Then took my other meds: Ceftin, Dapsone and then ate breakfast.

Girlie - has your LLMD advised that you take on an empty stomach? I know that is the instructions on most prescription antibiotics but my LLMD was very clear that I should definitely take my antibiotics WITH food. Anytime i take any antibiotics without a bit of food, I have horrible side effects. My LLMD said eating with a bit of food should not impact the absorbency. Just don't go crazy. I usually take my antibiotics with a bit of food and then eat a larger meal about two hours later. I wonder if that would help for you.

The Rifampin is supposed to be taken on empty stomach for absorption - and I did do that when I was on it. (My LLND told me to not eat with it)
I’m not sure about the Rifabutin - I’m thinking it probably shld too.

I take the others with a meal - and have done that with most (all?) the abx I have taken while treating Lyme and cos.
I didn’t ask the LLMD about Rifabutin.

When you take Rifampin on empty stomach your pee turns dark orange but when you take it with food it doesn’t. A forum member said that’s how you can tell if it’s been absorbed - not sure if that is true tho.

jrpsf said...
I think the xylitol caused the dash to the bathroom. All no calorie sweeteners have that effect. There is actually a warning on diabetic candy regarding that side effect.

hmmm - that's what I thought a year and a half ago - when I was taking it , but I was also taking Mepron and after I stopped the xylitol, I still got the diarrhea from the Mepron....until my body adjusted...

So, maybe it's also Xylitol....

Rikky1 said...
Dapsone or Daraprim caused an upset stomach for me almost every time I took it. Can't figure out which one since I took them concurrently for the entire time I was on the protocol.

Heavy carbs beforehand helped to lessen it. It got better after the first cycle but was still there the entire time which stunk.

I would spread out my Xylitol that particular artificial sweetener can cause stomach and bowel issues if you do too much of it in one shot.

FYI my wife started Daraprim today and she didn't have any stomach issues from it.

I still haven't received my Daraprim. I called the pharmacy - and they just received everything so the pharmacist can do his compounding... Hopefully, it will be as good. They will most likely send it tomorrow - via courier and I'll get it on Wednesday....I'm supposed to take 50 mg once daily...so I can take it in the evenings for the rest of the week and next cycle switch to the a.m. The leucovorin is separate...but I'll take them together.

I know some people are taking dapsone once daily...but for some reason mine is split to twice daily...not sure why.