Rikky1 said...
>>Dr H goes with dapsone therapy first before he moves on in trying pyrazinamide.
Dr. J also uses Dapsone for persistent chronic cases. When I spoke to Dr. J about it he claimed it was his idea first. Funny how him and Dr. H go back and forth on who is on the front line with treatments.
I'm pretty sure I'm in that 8% Dr. H references so its important that I'm working with Dr. J. I see him this Thursday and I know I'm starting Dapsone shortly. Believe I'll also be adding Rifampin and Alinia. Definitely going to talk to him about PZA I'm sure he knows about it and is prob using it.
Dr. J has also used gentamycin and vancomycin so plan on asking him when he would introduce these heavier abx's.
Thanks for sharing sebreg very helpful will keep everyone posted on my next leg of the journey!
Hehe, all that matters is that these guys are pushing the envelope and trying to figure out solutions for their toughest cases (and all their cases in general!). But sometimes there are funny turf wars with this stuff I just hope it doesn't ever hurt progress in trying to help patients.
Yes it kind of scares me to be in that 8%, but at the same time I'm glad there are things that seem to be very promising to help our cohort. I wonder if part of it is that genetics (particularly immune system genetics) plays a role in determining who falls into that 8%? all I know is that even before I knew what was going on with my health and had proper dx, I knew that it would be hard as hell to get better from this thing. It was some deep intuition and unfortunately it turned out to be right!
Oh yes! gentamycin is one that Dr H mentioned to me as possible option down the line, his thing usually goes like this (at least for bart/lyme combo as I understand it). First you do various conventional abx combos, if that doesn't do the trick then look rotating in quinolones (I sidestepped this one but likely will be introducing in the 2nd month of PZA if body permits), then try dapsone/PZA, then last line to try is gentamycin. I'd rather avoid gentamycin if possible but I will consider it if all else falls short. I'm not as familiar with vancomycin, do people usually do this IV? it is effective for bart? I feel someone was mentioning on the forum just the other day that they were on IV vancomycin and I think I had read in this forum that people thought it helped with bartonella.
Dr H does mix in some herbal antimicrobials but not usually as core treatment, at least not in my case. I do think he is very good in regards to supplement strategies in general.
Please keep us posted!!! fingers crossed that you see lots of improvement with the dapsone!!! have you been on alinia before? it was effective for me for a while, def think it is also a good drug. It's really wonderful getting to hear what Dr J is doing and some of his strategies, thank you so much for sharing that! I think it's great that we can pool info/experiences together to better understand our options and have some understanding of contingencies if they are needed
allows us to ask more specific questions to our doctors but also, at least for me, helps soothe me to know there are various contingencies in case current strategies fall short.
Post Edited (sebreg) : 8/7/2017 10:26:26 AM (GMT-6)