Submitted by katman on Tue, 2017-01-24 10:19

Twelve and a half years is the time it has taken to get this far.  This has enabled me to see my identical twin grandsons grow into wonderrful young men - they both graduated from the University of Michigan with a straight 4.0 GPA and are now enrolled for their Masters degrees.  I would not have been here if not for this program.  That is one reason I am so delighted that I have had this chance.  I have at least one other reason to do this blog:  the "R" drugs - Rifampin, Rifampicin - Rifampin by another name, and Rifabutin.  In my experience, it has been the addition of an R drug that has made the difference for me.  As alway, I say Rifampin is NOT A TOY and must be taken as directed.  I don't know  if it was the way it works or the fact that it was just more abx, but it has brought me ahead by a long, long way.  I will never be "me" again, but I am "walking around breathing".  I really don't believe I would be doing any of that, but instead would be either dead or an invalid with a feeding tube..  Until recently, I was on Rifampin twice daily for about twelve years, then got Rifabutin.  I began taking the dosage listed - two capsules daily, and a week later was in the hospital, unable to move.  My husband hid it from me after that, but I am back on it, taking only two capsules per week.  Rifampin has a half-life of about seven hours, Rifabutin about sixty-seven hours.  I am hoping that I will be done with this sooon, but have no intention of stopping until my abx has no daily impact.  May we all improve with this incredible regimen - we are the very fortunate ones.Rica

Amen to that.  At the start, I said I would take abx for the rest of my life if that's what it took to recover the abilities I was losing so quickly.  You and I have spoken about this many times.  We ARE the lucky ones!  Without this protocol, the future was bleak.  Now we HAVE a future.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi Rica,

Thanks for another inspiring post!  When I started this protocal I read ALL your posts so many times I almost had them memorized!!!

My worst symptom is stiffness.  I am wondering if you experienced stiff limbs, and if so, have they limbered up while on the protocal?

 Thanks again!

"Stiffness" is definitely an understatement.  Most of my joints actually hurt, especially when challenged to do what they are there for - move.  And, yes, they - ALL of them - have very nearly the range of motion they had twenty years ago.  I could do splits, backbends, put both feet behind my neck, and several other things - in other words, I was pretty limber.  I don't do all of those now at 77(!), but can certainly do abbreviated versions of all  

This has been long and sometimes hard, but we are the beginners in a long, arduous -  fill in your own word! - but I for one feel that I am among the very, very fortunate.  I know where I would be without it.  Hang in there - it is well worth it!


3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am