Comments on: To the Medical Community, or Dear Dr. Weinstock http://waitingforthecure.com/I/2009/09/29/to-the-medical-community/ ... a day in the life of Crohn's disease ... Wed, 08 Sep 2010 09:20:04 +0000 hourly 1 http://wordpress.org/?v=3.0.1 By: admin http://waitingforthecure.com/I/2009/09/29/to-the-medical-community/comment-page-1/#comment-646 admin Mon, 05 Oct 2009 17:37:09 +0000 http://waitingforthecure.com/I/?p=811#comment-646 I think of all the available worms, TSO is probably the least effective, not being a human parasite, even though it's considered the safest. But which worm to choose? I don't know if trichuris trichura (human whipworm) would be more beneficial than hookworms (necator americanus), or the two combined, or what. I wish we knew better what to experiment with. I'm sorry TSO made you worse. I understand about having only horrifying options left. I would try a different worm before an ostomy...but that's just me. I think of all the available worms, TSO is probably the least effective, not being a human parasite, even though it’s considered the safest. But which worm to choose? I don’t know if trichuris trichura (human whipworm) would be more beneficial than hookworms (necator americanus), or the two combined, or what. I wish we knew better what to experiment with.

I’m sorry TSO made you worse. I understand about having only horrifying options left. I would try a different worm before an ostomy…but that’s just me.

]]> By: VT http://waitingforthecure.com/I/2009/09/29/to-the-medical-community/comment-page-1/#comment-642 VT Thu, 01 Oct 2009 17:58:44 +0000 http://waitingforthecure.com/I/?p=811#comment-642 Here's hoping that your helminth's continue to help you. I follow your blog as often as I can since I too have Chron's for the past 20 years and have gone through basically everything. I am down to one trial left and Tysabri. I tried TSO and found that it had ZERO effect on me. In fact while waiting the 10 weeks to try and see if it would benefit me in anyway I got worse and had to have my Prednisone intake upped in order to spare me the fall into deep ill health. I've tried Ustikmilab. I know I've butchered the spelling of it and saw some success, but the study is too short. I now have this one last chance with the Millenium drug study. I found between trying Tsyabri if this fails or giving up and going for an ostomy. Both horrify me and my experimentaiton with helminths failed. So here's hoping this one last drug study works and if not that maybe it is a different type of helminth that can help us who have failed with the whipworm. I find it so hard to believe that some are willing to blog about the success of TSO while there is no one saying ..hey this thing failed yet is so expensive. Here’s hoping that your helminth’s continue to help you. I follow your blog as often as I can since I too have Chron’s for the past 20 years and have gone through basically everything. I am down to one trial left and Tysabri. I tried TSO and found that it had ZERO effect on me. In fact while waiting the 10 weeks to try and see if it would benefit me in anyway I got worse and had to have my Prednisone intake upped in order to spare me the fall into deep ill health. I’ve tried Ustikmilab. I know I’ve butchered the spelling of it and saw some success, but the study is too short. I now have this one last chance with the Millenium drug study. I found between trying Tsyabri if this fails or giving up and going for an ostomy. Both horrify me and my experimentaiton with helminths failed. So here’s hoping this one last drug study works and if not that maybe it is a different type of helminth that can help us who have failed with the whipworm. I find it so hard to believe that some are willing to blog about the success of TSO while there is no one saying ..hey this thing failed yet is so expensive.

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