Rick has stopped Rifampin and will start pulsing with Flagyl soon...

Hi Folks,

Just a brief note.  Rick stopped Rifampin recenlty for some sort of test or procedure.  When he restarted, the side-effects on his stomach or gastro-intestinal system were too harsh for him to continue.

He spoke with his Doctor in Sacramento - and they decided that the best course was to proceed with pulsing with Flagyl.  I'm actually encouraged by this development as I haven't seen many other folks using Rifampin in place of Tini  or Flagyl - and have no idea of how effective it is compared to those two.

His schedule, per his Doctor, will be 5 days on - 2 weeks off.  Seems aggressive, but given he's been on Rifampin for 18 months or thereabouts - it may make sense.

I hope he starts to see more glimmers as a result!

Best & Highest Regards,

Tom C

Tom, this is mild compared to when they first started using metronidazole at Vanderbilt: it was every day!  Since Rick has been on rifampicin for eighteen months, I guess he will easily cope.  Besides, he has already stopped relapses and has started work!...................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Folks,

Thank you for your words of encouragement!

Sarah - I was thinking the same thing about his pulsing - e.g. that he's already been on Rifampin for 18 months.

On another note - Rick decided that sitting in the same place for 8 hours a day wasn't helping him - and was actually making him a bit weaker.  So - he quit his job.  He's proposed that they let him work on a "consulting" basis - e.g. commission only to find the company resellers.  We'll see if they take him up on that proposal.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAP in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi