Good morning Scott.
IVIG is the main treatment for GBS.definatley confront your doctor. get an answer no matter what. If you don’t mind me asking do you have insurence. if so it could be your insurence company as IVIG is very expensive. Mine was $13,000 a bag and I had 5. Please keep us updated also explain more about your GBS I have you in my prayers (Steve)

Scott,

[B]IVIg will NOT help[/B] you now. It is only given during the GBS attack, within the first 4 weeks, and possibly another round 2 weeks after if there is no improvement. Having IVIg will not work for you now as your body is no longer under attack – it will cost a great deal and may make you feel good, or bad (depending on your reaction) for a couple of days afterwards and have no long term benefit.

The IVIg that you have been reading about that is given on a regular basis is for CIDP which you do not have. Your residuals are part of your recovery and life post GBS unfortunately and there is really no treatment after GBS except to try and keep the pain etc away with medicaitons.

Hi Scott,
Sounds like you are on your way. Since it has been so long and your dx is gbs, as Ali mentioned, additional ivig would not help. My son was stung by 3 bees, we think that was his trigger, but he has cidp, not gbs. Good luck!
Dawn Kevies mom

Hi Scott-I agree with Dawn and Ali-maybe you could also post your questions on the GBS thread, and compare what they are getting for GBS treatment. Wishing you all my best. Emma

Wow Scott! You had a bad experience with that spider bite. I know that was very scary. Can’t believe the hospital’s did you that way, but then again, I can because of my experiences with them myself.
I have learned when it comes to something rare they have a time handling it. If it’s something simple then they can handle that. But anything rare requires a center that deals with rare. I have learned the hard way. I never heard of CIDP until the other day when my neurologist told me I had it! And now am learning quite a bit!

In my case there was hardly any change the first time around, The second round (May/June/July) I saw first improvements after a couple of weeks or so. The way I understand it, IVIG modulates the auto-immune response quickly but it takes quite a while for the myelin to grow back.

Some people here have reported very fast results which surprises me since I believe the myelin has to regrow first.

Another thing to consider: different people react differently to IVIG. There is no hard and fast rule. Also, it’s probably not fair to compare results to me. I have a variant of IVIG which is supposed to react poorly to IVIG, Plasma Pheresis or steroids. But I am sure you will be getting more responses to your question from forum members who don’t have a variant.

hi deedee, ivig slows the progression of nerve damage, it can make one feel alittle less fatigued, kind of like an adrenalin rush, but not to the extent of being great or healthy again. it might also help with the nerve pain, but that too can wear off, or not happen in some people. hope your husband is feeling better soon. take care.

IVIG affects different people differently, and effects (especially side effects) can even vary from batch to batch sometimes.

Two days after my very first “loading dose” I remember noticing that I had slightly more sensation in my toes. However, subsequent times I didn’t notice a change in quite the same way; I noticed more that I wasn’t getting worse. I have some exercises that I do every day or two that are useful in measuring progress, but there is usually no point in trying to compare one day to the day before it. Unless I am in a rapid decline, comparing to a point one or two weeks ago is a lot more useful.

So, have patience, hopefully you’ll notice the effects of the healing soon.

It’s probably just in my mind but….after each of my IVIG treatments (5 over 12 months) I always seemed to feel a little better the day after each treatment…..who really know but they seem to work well for me.

God Bless
Stephen