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

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Tommi C
26 Aug 2015

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

Sarah

27 Aug 2015 10:13 am

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.
Tommi C

27 Aug 2015 10:22 am

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