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Thread: Not responding to Cyclo - Risking it all with Fecal Transplant on 2nd Of December

  1. #1
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    Default Not responding to Cyclo - Risking it all with Fecal Transplant on 2nd Of December

    Hi Guys,

    Its been 4 months since posted. After getting the Diagnoses of pauci-immune crescentic glomerulonephritis in July I have had more drugs than I care to know.

    I have had 4 x Cyclo IV, Mychophenolate, Meth Pred, Oral Pred, Bactrim, Somac etc.

    Yet my CRP remains at 120 and my Polyarthritis remains almost unwalkable.

    My kidney numbers are better but still smoldering with blood in the urine.

    My specialists are not sure what to do. After doing some research and literally having enough of my body being torn to pieces with drugs, I have had clearance and support from the hospital to do a Fecal Transplant. This will be first in the world for Vasculitis on the 2nd of December, no evidnece, but either is trial 5 drugs at once when they barley work on their on which one dr suggested.

    I have decided to put my life on the line in aid of research and if the roll of the dice pays off, a case study on pubmed that might help others. There comes a time after 5 grueling years that you say lets have the courage to try something different and not let this thing keep on taking your fighting spirit.

    http://www.nytimes.com/2012/10/28/ma...anted=all&_r=0

    So I will keep you posted. I am in Aus and its been great to get support from Andrew. God bless that man for putting this entire forum together after what he went through.

    C

  2. #2
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    Hope all goes well and get back on the way to good health.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    I'll be crossing my fingers and toes for you.

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    Have you tried Rituxan?
    Good luck and hope it works!

  5. #5
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    Wow, that's amazing and scary at the same time

    Here is the link to it. Doctor Tom Borody claims faecal transplants curing incurable diseases like Crohn's - ABC News (Australian Broadcasting Corporation)

    Are you seeing this doctor?
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Thanks for sharing this, I admire your courage for trying this, and I hope that it works wonders for you. Looking forward to your update.
    Anne, dx'ed April 2011

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    OMG...so sorry you are going thru all this. I will pray it all goes well for you and please keep us posted on whats going on. Where do they come up with the names for all these diseases...can they get any longer !!! Good luck and stay strong
    Life isn't about how you survive the storm, but how to dance in the rain !

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    What would the purpose of the fecal transplant be? I have heard of this procedure for Crohn's and c-diff colitis, but curious how it would benefit Wegs. What would you hope would come from this? (My intention is not for this question to be harsh...I am truly curious.)

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    Good luck to you--I hope you've found the solution!!!

  10. #10
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    God you must be right at the end of your tether , wishing you good luck & god speed
    I'm praying your dice rolls a win & your future is long & pain free
    Keep us posted .


    Sent from my iPad using Tapatalk

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