carlnpa said...
Lymie - the doctors are practicing - on us.
My adrenals are still shot from too much rifampin for too long.
I wonder if lower doses of dapsone would chip away at your pathogen though over a longer period of time. Rotate other abx with it at normal doses.
These double doses are not good practice.
Many of these LLMDs seem to prescribe much more for much longer. I'm pretty sure this is what is turning off the conventional medical community towards PTLDS patients.
I think Dr. Horowitz does exaggerate at times, but I was happy to see that he actually did a chart review and follow up on outcomes from his patients he put on this double dapsone. The outcomes weren't clearly defined, however 98% had improvement and almost half reached remission. Remission meaning symptoms dissolved at least for several months. While I wouldn't call his chart review thorough science it is at least better than other treatment methods in which we go into blind and rely on a handful on anecdotes at best.
I was planning on this being my last aggressive grasp at abx therapy. I liked that it was short and hard. Unfortunately, it seems to have been too much for me. I might go at a lower dose and slower pace. We will see. I'm tired of the abx treatment style, however, every time I go off them my symptoms come rushing back. When I'm on abx my symptoms don't subside but do improve. At the same time, long term abx use causes depression and profound fatigue for me. darned if you do. darned if you don;t.