I am currently on day 4 of 25mg dapsone, and it has given new meaning to the term herxing. My neuro symptoms and malaise are at an all time high. However, I am extremely optimistic about the treatment.
Lymesick - have you talked with your doctor about trying 200mg? That is what Dr. H is trialing now, with the idea that a month at 200mg is the best current chance for what he is calling a "cure." I am doing 25mg for a week, 50mg for a week, 100mg for a week, then 200mg for a month.
I feel that there is an unnecessary fear of dapsone on the internet and this forum. As is indicated in the passage lymesick quoted, as well as everything else I have read from Dr. H, IF you take the precautionary measures and are vigilant about blood tests, you will be fine. You may need to come off of the meds, but all is reversible. Dapsone is generally taken at 100mg for other diseases, and even without the precautionary measures, these people tend to be fine. The one thing I have heard stressed however, is to NOT do ozone while on dapsone.
I think I’d be willing to try it - seems to be less risk than the fluoroquinolones from what I’ve read so far.
Plus, since this is a relatively new treatment for LD - I think the Dr.’s are monitoring patients closely as they also want good outcomes - maybe this will have a high success rate of remission.
Gives us hope.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi