Anyone with residual GI side effects from GBS or IVIG treatments?

    • Anonymous
      July 14, 2006 at 8:31 pm

      I have to admit, I’m a little embarrased to ask about this… Has anyone else experienced any GI complications (i.e., chronic diarrhea) or weight issues since recovering from GBS or IVIG treatments?

      I was hospitalized last November for a week with GBS and had a “good” recovery after one week of IVIG treatments. Although I still struggle with fatigue I’ve made some major life changes to accomodate my recovery (no longer working, pulled kids out of daycare – we were constantly getting sick). However, I’ve gone through just about every battery of test to diagnose the problems behind my chronic diarrhea (now going on 7 months) and my inability to lose weight (weird huh?)…

      I’ve gone to GI specialists and gone through just about every test you can imagine. We’ve found nothing and the GI doc has pretty much given up on finding something. I control those symptoms with immodium.

      I can’t lose weight either. I just keep putting it on. I exercise w/heavy-cardio six times a week/one hour at a time to make sure I don’t put on any more weight (already 15 over where I was). I follow a good diet with low calories. It’s so frustrating! This seems to be the only thing I can do to maintain the extra 15 and not put any more on.

      My docs don’t know enough about GBS to seem to help. Most of what I hear is something along the lines of IVIG (or heavy doses of antibiotics) killing off some of the “good” bacteria in my gut, blah, blah and nothing definitive to counteract.

      I would LOVE to know if anyone out there has gone through anything similar. It’s sooo frustrating!!

      Thanks and take care!

    • Anonymous
      July 14, 2006 at 9:29 pm


      Sorry I cant help with any info or suggestions, and I am so sorry you are going through this, you really seem to be having a bad time of it at the moment. The reason Im posting is just to say that maybe if you repost this in the [B]Main Forum[/B] or the [B]Adult[/B] [B]GBS[/B] threads, and not in [B]General Questions.[/B] The [B]Main Forum[/B] and [B]Adult[/B] [B]GBS[/B] threads tend to be far more busy, and you may get more answers as I think that a lot of people tend to skip over General Questions. All the best, and I hope that you are able to find some answers that will help. 🙂

    • Anonymous
      July 14, 2006 at 10:10 pm

      hi mazo & welcome,

      yes, others have had your experiences. w time things will get better. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 15, 2006 at 11:13 am

      I will repost to the Adult GBS – thanks for the direction.

    • Anonymous
      July 31, 2006 at 5:06 pm

      People who take prednisone can experience weight gain and have these other symptoms you describe. What about the option of using plasmapheresis in stead of IVIG? Are you on any other drugs? Has your thyroid been tested and scanned for any potential growths that might be causing this? Have they analyzed stool samples for infections? If all the relevant testing has been done, I’d probably consult with a homeopathic specialist and/or dietician to try to balance my system as much as possible while the healing takes place. A word of caution, though. Anything homeopathically prescribed should be run past the treating doctor/neurologist before ingesting anything else into the equation. Other than suggest buying stock in Charmin, I wish you the best in finding a quick solution!

    • Anonymous
      December 26, 2006 at 11:13 am

      Hi mazo…

      I don’t have any experience with GBS — my brother just got diagnosed so I’m scouring this forum for info.

      However, reading your thread reminded me of several posts on the “thyroid forum’ that I participate in. ie; weight gain, fatigue. Have you had your thyroid levels checked? If you haven’t be sure to ask for TSH, Free T3 and Free T4 tests.

      Best wishes…

    • Anonymous
      April 16, 2007 at 10:54 pm

      I know a few people here who do have GI problems since GBS/CIDP. They never had the problems before GBS/CIDP.

    • Anonymous
      April 17, 2007 at 11:24 am

      I am glad to see this question come up again. Thanks Brandy. I have CIDP and never had any GI problems prior. Since, i have had a severe problems. My neuro directed me to GI spec. which after all tests has discovered I have lost 75% of my sphincter muscle. Unable to control anything. I either couldn’t go and then went all the time. I am currently on GlycoLax Powder 17grams a day and i have to schedule my outings around my GI problem. After I started my IVIG treatments my neuro wants me to notice if this helps my GI problems. He seems to think it will help to restore. I will keep posted.

    • Anonymous
      April 17, 2007 at 11:34 am

      YES YES AND YES I have all those problems and i am not on anything right now. I went on that diet for thyroid test that you cannot eat anything with iodine in it. husband went on it with me. he lost 10 lbs that week I Lost 0 Nothing. I have went on the lower calorie diets etc.. they do not work for me. If you find anything that helps or even a reason why would you PLEASE let me know I thought that I was the only one with this problem.. thank you and GOOD LUCK!!!!

    • Anonymous
      April 17, 2007 at 11:44 am

      I’ve taken thyroid supplement for years. My GI problems came after the GBS event. Why is it so hard to accept that our whole “messaging system” has been messed up :confused: If the nerves aren’t talking right then how can anything else work right? And how would you know which nerves have been affected except by “residuals”!

    • Anonymous
      April 17, 2007 at 1:34 pm

      Well you know the doctors always think they are right and the patients are wrong. They go by their text book knowledge and will not admit they might be wrong when a patient presents with these problems after a severe illness.

      Remember I have worked for these “Little Gods” for a very long time and I have seen them in action way to many times. It infuriates me to no end.

    • Anonymous
      June 14, 2008 at 7:30 pm

      3 weeks ago I had diarrhea

    • Anonymous
      June 14, 2008 at 8:09 pm

      I mean 3 weeks ago I had diarrehea with abdominal pain until I had fever my sister took me to the hospital. I remember they gave and IV 100 ml sodium chloride,morphine for pain and something else for nausea.I was there 8 hrs.til all my lab test and x rays were done. At the end I was feeling better but doctors didn’t find nothing they said it was infection I caught. Maybe or maybe not. Before all this happen I remember the sypmtoms I had when I had GBS and let me tale you I was scare about this.


    • Anonymous
      June 18, 2008 at 4:35 pm

      Sonny, I had those symptoms prior to onset of gbs october 2007.. Stay on top of those symptoms, I haven’t had any symptoms like that since…deanop

    • Anonymous
      June 19, 2008 at 9:28 pm

      As we speaking right now.I’ve have done some more labs and doing one more tomorrow. I seeing a Gastrointestinal Doctor for this matter and after I’ve done my last test lab. I’m going back for the results. I’m still somewhat not feeling the same after this has happened.