This is all very exciting and as this work goes forward it will mean a lot to everyone.
MS research is critically important. Yesterday I was thinking how much it means to little Landry
, she has no idea.
But I am DEEPLY distressed by something and I am going to step right up and say it:
Chris, you are in a trial for Revimmune and should not seek this treatment
From chrishadms on friday
Everyone seems to think I may run again. I just want to be able to live healthy and finish up any loose ends I still have from when I still had MS...........
Today, I can stand up with my eyes closed, my bladder works great and my urgency is improving because I am working on it, -oh I stand again to pee lol, I stand in the shower, rarely take a nap even if I am tired, no longer use glasses, have no issues remembering anything now, mood swings have stopped, still pop of a twitch every so often( 1 or 2 per 2 week period) but not daily for hours at a time, spasticity has let up but is still there but it allows me to walk and stand now, and am happy to say I am patiently waiting for Monday so I can continue to improve and live my life.
Wow am I glad God helped me find Dr. Kerr by putting Brett there for me.
I am in the phase 2 trial but Johns Hopkins is putting people through this off label as fast as they can. Go to the HiCy section of my site and get the contact info and see if you qualify. It’s covered by insurance
When you are a trial subject you cannot seek a second trial treatment; it corrupts the data.
You couldn't possibly know, and neither could Dr Kerr, if you are better because of Revimmune or if in fact you are better because of CCSVI treatment by Dr Dake.
If you do a lot better after treatment by Dr Dake, you will suspect it has something to do with the combination rather than giving Dr Dake the credit he deserves in that situation. It is simply not fair to Dr Dake's research
Unless you have been discharged from the Revimune trial by Dr Kerr and have had a final evaluation, it is unethical to seek a second experimental treatment unless all the doctors agree they are interested in doing a combination trial. At this point that is unlikely; they're still trying to see if this works by itself.
Furthermore I feel it is important in your case because of the platform you have created for yourself regarding Revimune, that you not move on until you have decided revimmune did NOT work and say so to people following your progress. That would be hard to do, but it is the ethical thing to do.
It would be wrong to attempt to walk some kind of razors edge and say that the combination is the key to healing when you could have no idea how you'd have been with JUST ccsvi surgery. It may be that such combination is the best approach, but that is for the researchers in the field to decide as the research goes forward, at this point these therapies need to be trialed for themselves.
I believe you have a big heart and have been recommending Revimmune because you sincerely believe it is best for everyone and you believe the "reboot" paradigm is a superb way to go. Frankly if I had had hicy, I'd be sitting in my reboot waiting for this other research to play out. It is the best autoimmune thing going to me. It sounds like you are doing well and think hicy reversed your MS. It is also clear that you really like the docs at JH and really want to see them succeed, and I believe you really want to see other patients like yourself see success too. I mean that, you are a likable guy and I want you to have the best possible treatment for you.
But you must be honest with everyone that you have pulled in to the Revimmune paradigm, including yourself.
If what is true for you is that hicy did not work as you hoped and you actually need something new you need to say so, and have a deep conversation with Dr Kerr about your need to move on and what needs to happen at this point to close that loop.
I had to make a post explaining that abx did not stop MS progression for me too.
I've had to answer countless pm's from people checking in with me later who read my old material too. I know how that feels, so I am walking my talk.
I really mean this from the bottom of my heart, I wish you every success and the best possible treatment for your situation, but you need to do some deep thinking about what you are willing to do.
my intention is to protect the integrity of the research for everyone with MS, not to hurt you Chris. I mean well too......... Please understand it in the spirit intended