repeat IVIG treatments

    • Anonymous
      October 23, 2008 at 5:57 pm

      Hi, I am new here, I found out I had GBS on Aug 12( along with lyme)
      I did the 4 days of IVIG in the hospital. The recovery is going very well. I am about 90% now. I was in the hospital for a month. All is going fine. I received a call for an infusion company the other day asking why I was not doing more IVIG treatments. They made it sound as if I really needed them.
      I put a call into my Nuro and I am recovering just fine. If I was not doing as well, I could do more treatments. But not right now. Be aware of a phone call like this. Do your research. Call your doctor. Has anyone done extended IVIG treatments? How long and why? Best to all

    • Anonymous
      November 8, 2008 at 5:44 pm

      I want to thank you for sharing this with us. I had GBS in ’86 and again in 2006. Both times I did not get IVIG, but I did research it. The second time I got it, I went to the ER and the doctor told me that they would not give me IVIG because I could still hold a cup – the fact that I could barely walk did not make any difference. I chose Not to be admitted because I knew that IVIG was supposed to stop the GBS from progressing. (I chose to go it on my own wholistically than be at the mercy of those particular doctors who werent going to do anything until I got totally paralyzed.)Then I read on this site that people get IVIG for years. It was my understanding that GBS hits you and then you slowly recover. Your post was interesting, because it seems that the pharamaceutical companies are greedier than I imagined. You should feel blessed that you have an intelligent neurologist.