Linda, Lori…

October 23, 2011 at 6:14 am

[FONT=”Microsoft Sans Serif”]Thank you Linda– yes, it is you who comes to mind first as far as passing the SCT torch. And I think you will have help… I’ll pass by from time to time as well; but I do look forward to a better energy here, a more comfortable discourse without the divisiveness that has permeated this place. I look forward to a spirit of kindness even among disagreement. I look forward to a time described by Pam H., my hero, who has stayed fair, clear and true to her feelings despite assaults against her publicly and personally for agreeing or disagreeing in contradiction to the “wrong” people. Pam is who helped me come to my decision just as I may have helped you Linda. We’ve all taken our licks but that’s really okay– we are better for it and the discourse inadvertently helped in publicizing the word about chemotherapy/SCT.

After all, what has our intention always been? For me it has been to make clear for those interested that another option exists. That traditional treatments are only a set of options– but that within reach, is another option– a more aggressive one– Stem Cell Transplant. To be clear, the magic is not so much the reinfusion of one’s stem cells; rather it is the high dose chemotherapy regimen that kills off the CIDP and the stem cells are used simply as a rescue for the immune system. Stem cells rebuild the immune system quickly so the body has less chance of getting a serious infection. This is why Pam H. was cured by strictly chemotherapy. She was lucky in a sense, as she did not fall ill in the months it took for her body to reestablish immunity. With SCT, it takes only days to reestablish immunity– and herein lies the difference.

Further on intention– I think (hope) I can speak for the others who have sought SCT that [I]approval[/I] has never been our wish or hope; if we post here, or anywhere, we wish to share our experiences for the sake of others who may choose to walk our same paths. The resistance [I]I felt[/I] when I posted the success of my story sometime back, baffled me; analogously, it would be the same if we aggressively refuted IVIG as X, Y or Z… Remember, it too was once in the experimental phase; and although it helps some, we can far but call it a cure or even a strongly successful remedy for the greater majority. Having said that, if it helps you, which it does some, all the best!

GH-CIDP: I am very glad your neurologists have had open minds and were receptive to you. It is true that I don’t have a statistical survey conducted scientifically to illustrate the profession’s perspective on SCT. I speak from empiricism. From my experience, the countless people who contact Sophie and I, the comments posted on this forum, our Facebook page and the results of my website, all lead me to my perspective. It has been, by far, our biggest battle when frightened people, unable to use their hands or even walk, often in terrific pain, seek our guidance in desperate hope for an improvement in their health– only to be shot down by their own neurologists, time and again. So GH-CIDP, if you know of neurologists that have been helpful and supportive, as I know Linda M’s has, please, for the sake of all, reveal them… I wish I knew one when I was deteriorating and being told by the very neurologist this foundation recommends for my area, how SCT was a ridiculous option.

Last but not least, Kelly: You wrote– “I’m not really sure why you addressed me in this post on this forum though.” I addressed you here because this topic is the crux of our paths.

I too was given the great advice of picking one’s battles by many I respect, including my mother. Advice I adhere to. The difference is, firstly, I don’t see this discourse as having to be a battle; and secondly, semantics aside, it’s one well worth the effort.[/FONT]