Reply To: CMV AND GBS
bny–i mentioned every 6 weeks, that may be where you saw that. Mayo did have me doing a less amount weekly–which, yes, with a full time job, kids etc it was a pain!!! I am now going to try a higher dose every 6 weeks–which is going by the 42 day average Dawn mentioned above. I started the 6 week intervals last spring –but only got a chance to do it once before my mayo trip and then started the weekly, so i didnt really get a chance to see if the 6 week intervals would work.
Dawn that makes sense what you posted about waiting too long and everything thats healed is lost. I feel like that is what was happening to me on the 12 week intervals. I improved after having it weekly for 16 weeks—-but then my dr appt wasn’t until a month after my last infusion—so i wnet a month with nothing before the emg/ncv. it seems to me that it should have been done right after the 16 weeks ended. I hate always feeling like Im having to tell the drs what to do—but it seems we learn way more on this site then most of them will ever know about this disease.
i dont mean to intrude on your post bny—but Dawn, where did you learn of the cytoxin for the progressive cidp–which is what i have? I was happy to see that comment because i am ready to research something new to try–i will start there–thanks 🙂