Could you provide an update on your dapsone progress? I apologize. I believe I had asked you about this in a thread not too long ago, but I lost which thread it was. I may be ramping up soon to go on a dapsone protocol. Just curious if it has any beneficial effects for you since this original post back in October of '18.
I’ve had some improvements on the Persister/Bart protocol - I did it for 6 months in total.
After the first two cycles/months I went to only M/W/F dosing of the D and D because I was herxing at the end of the week sooooo badly.
These herxes were different than what I had ever experienced.
I had a high temperature and fast heart rate - starting the Friday evening and lasting until the next afternoon/evening. Plus overall bad body pain - including my head - sore to touch. Emotionally I was a mess because I thought maybe I had sepsis when it happened on cycle 1. It took the body pain several days to resolve.
Cycles 3 and 4 were bad too but each cycle herxing was a little less extreme. At the time I was not confident that it really was a herx.
Then I had an appt with Dr J and he said “2 more cycles and go back to the five day dosing of D and D instead of three”
I was concerned. He also said he thought I was herxing - because bart was being hit hard.
He didn’t think it was Sepsis or side effects of the D or D.
I got off the phone and told my husband that I thought he was wrong... heck I had taken Rifampin and mino daily for over a year and never herxed like that. How could 5 days of D and D with 3 days of Rifabutin cause that severe of a herx after beating Bart down with the over a year of Rifampin ?
When I went on the Maintenance protocol (basically Rifabutin mino and Ceftin) I ended up herxing on just them. So I’ve done 6 Cycles of persisters and 2 cycles of maintenance with Rifabutin and it’s getting easier to handle each time.
I think the last time I had a low grade fever for a few hours.
I saw Dr J in March and he wants me on the maintenance protocol indefinitely at this point.
I have had some really good days - my symptoms that are still bothering me :
nerve pain in the thoracic left side, left arm, hand
- shivering still sometimes.
- Low grade head pressure sporadic throughout the day/evening
Sometimes my memory.
And the POTS ( but that seems to be getting better)
I have a few more that are either mild (like slightly sore feet in the morning) or don’t happen daily (like now and then I’ll get a few twitches that lasts maybe 5 minutes)
There maybe others - that I can’t think of right now...
My dapsone dose was 50 mg
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