Lorenzo’s Oil for GBS recovery?

    • Anonymous
      November 6, 2009 at 12:05 am

      “But regenerating myelin may also be beneficial in demyelinating diseases for which no effective treatment has been developed (e.g., multiple sclerosis). ”

      Has anyone heard of any trials of Lorenzo’s oil with GBS patients?

    • November 6, 2009 at 10:00 am

      Just with CMT. There is a drug already fda approved for other uses that has been determined to be useful in nerve regeneration from gbs damage. It waqs talked about at the Chicago symposium almost a year ago to date. I don’t have time to look through my notes today but will try over the weekend. Try to search under member name With Hope, it may be in her notes titled something like notes from symposium. I do remember that they did say that there was a small window of time, not years later.
      Dawn Kevies mom

    • November 7, 2009 at 12:51 am

      “Can Lorenzo’s Oil help treat diseases other than ALD (adrenoleukodystrophy)?

      Lorenzo’s Oil is specific to ALD, does not repair myelin, and does not have any known effect on other demyelinating disorders. In ALD presymptomatic boys Lorenzo’s Oil often (but not always) prevents the onset of the disease by stopping the body from producing the very long chain fatty acids, whose buildup leads to demyelination.
      Using Lorenzo’s Oil as a Teaching Tool”

      I still think stem cell studies should be conducted. They can use our own stem cells from what I have heard.