Recovering without IVIG

I'm currently experiencing a re-flare of symptoms following a sinus infection in February after what was believed to be a case of mild Guillain Barre. I am taking 100mg of Gabapentin to help with the racing heart at night which has helped a little but that hasn't stopped my body from feeling attacked everywhere else. I yoyo with several good days followed by a couple of bad ones never knowing if the bad days will last. Do you need treatments like IVIG to break the body's cycle of destruction or if it can just go back to normal by itself especially a second time? Has anyone just recovered? I did the first time but have my doubts about this one.

I developed GBS after a serious chest infection three years ago. After a 6 week stay in the hospital and a 5 day course of IVIG, I left the rehab center and have since developed CIDP.

I live with the symptoms and control them with Gabapentin every 6 hours. My legs and hands still exhibit some degree of numbness but the medicine helps. My neuro sees me every 6 months and I get an EMG once a year. The Doc says my responses are still way below normal but holding steady. I guess my motto is, "Live with it".

Hi tarheeling…sounds like you and I are luckily on the milder side of GBS. I was diagnosed in December, had IVIG in the hospital and 2 home treatments since, the last in February!!

Definitely talk to your neurologist ASAP!! The IVIG does take a toll on your body, so the stronger you are before getting it, the better. As far as I know, there isn’t much negative that can come out of IVIG (aside from the cost).

One other thing I would talk to your neurologist about is your dosage of gabepentin. Like I said, my case was luckily on the mild side, but I’ve been on 3600mg of gabepentin and also playing around with symbalta. I’m not sure 100 mg per day would make much of an impact, but i guess it’s better to start low and see what works.

Good luck…based on what you’ve said, what I’ve experienced, and heard from others…you should have a FULL recovery. The other responders unfortunately had much more severe cases. It’s tough to see it that was when you feel so crappy and have so many ups and downs…but once you start to see steadier improvement, it gets A LOT easier to deal with mentally!!

Technically, yes. You can recover without treatment. In reality, all the treatment does is slow down and sometimes stop the progression of the syndrome. Since there is no cure for GBS, treatment only helps with the severity.

But what it comes down to is how severe the case of GBS is. Some people may only get minor cases, and could get by without treatment, but others have more severe cases. I underwent treatment after being diagnosed very early into getting GBS, but even then it still progressed over the next couple weeks. But if I hadn't of had that treatment, my case would have gotten so much farther.

If it was me, I would run to get treated immediately. But since you aren't me, I would say the best thing to do is see a doctor that has some history with the syndrome, and discuss about the pros/cons of treatment, and bring up any concerns you may have about getting treatment/not getting treatment.

Let me know what you choose! I hope it gets better soon.

I wanted treatment but the doctors I saw were not familiar with this so I did not receive treatment. Now, I am on a mission to see a doctor with more experience in this area so I can get treatment if they feel it will help me. I really hate that I had gone this long without treatment.

The Gabapentin that the new doctor I saw a couple weeks ago put me on seems to be helping some with my racing heart but I may need to increase the dose. I have an appointment soon with a more experienced doctor.

I will let you know what they say. Thanks!

We live in South Africa. My son was diagnosed 2 weeks ago. His main treatment was Polygam for 5 days. (An IVIG) It left him sick as a dog but after the treatment he has improved dramatically and amazingly. We have heard of incredible success stories. According to our neurologist, IVIG is the fastest and most reliable way to stop and reverse GBS.