GBS after a campylobacter infection
AnonymousJune 30, 2008 at 10:43 am
Good morning, I am actually writing this on behalf of my wife who has been on a ventilator now for 15 days. She is diagnosed with gbs and has had 6 treatments of immunoglobulins. She is 52 years old and prior to this was extremely healthy. I was curious if anyone has any input on this onset. From weakness to complete paralysis was 48 hours. She has been able to maintain facial muscles, blinking, mouth movement and tongue. Suprisingly her spirits are good, they were able to sit her in a cadillac chair yesterday…..you could just see the relief getting out of bed. I am sure like everyone, I had heard of this syndrome but did not know anyone who had to deal with this. There is a nurse here who had gbs 25 years ago. She is wonderful, informative and very supportive. However her infection occcured after a respiratory infection. Both her and my wife had the painfull neuropathy. Any input would be appreciated…..Thanks Peter for my wife Mari
As soon as we can I will have her on this site.
AnonymousJune 30, 2008 at 1:03 pm
I suspect my bout with GBS was caused by campylobacter. I had a bout of weakness, high fever, black tarry stools/diarhhea, extreme headache, etc that lasted about two days. This then went away a few days later (Maybe 5). I began to have tingling in my toes and fingersnand over the course of the next week got weaker and weaker until I was hospitalized. I was paralyzed within two days of going in to the hospital and spent about 3-4 weeks on a respirator. I was completely bedridden for two months.
I have made a remarkable recovery. i look forward to hearing more about your wife and hope you feel comfortable asking questions. There are lots of us here willing to do what we can.
AnonymousJune 30, 2008 at 1:27 pm
Thank you, sometimes you feel like you are standing on the top of a mountain all by yourself……….no one has any concrete answers. However,from what I understand no two trips are the same. How long did it take to recover to where you felt comfortable functioning?? Peter
AnonymousJune 30, 2008 at 1:48 pm
I was in the hopsital for about four months, then home. I was back to being able to function reasonably well within another 6 months. My overall healing probably lasted about 4 years until the tingling in my fingers and toes subsided on a day to day basis. I then only had the tingling when I was overtired. After five years I went back to work part time and within a year was full time. I probably could have worked sooner but wanted to saty home with my kids as long as I could.
I am 25 years out and still have tingling in my toes and fingers, some days worse then others, but I continue to work and also help my husband with our cattle farm. I also am experiencing muscle weakness. I believe that if I had known then what I know now, things would be different. We did not know very much then and I must say that I pushed myself to the limit when I probably shouldn’t have. I think that over the years I have overtaxed my nervous system and I am now paying the price.
My 4 kids are now grown and gone from home. I was 29 when this all happened and am 54 now. I am still active and will continue to be so as long as I can, but I have learned to rest when I need to and some days, I just veg. Today is one of them!
Let me know if I can answer any other questions.
AnonymousJune 30, 2008 at 3:48 pm
[FONT=”Comic Sans MS”][SIZE=”3″]Peter,
i am so happy you found this Forum.
One of the key factors in recovery and rehabilitation is having our loved ones understand what we are going through and you will find a wealth of information here.
My illness was not due to Campy but rather followed an upper respiratory infection, but i believe that the treatment is the same regardless.(?)
Fortunately for me it was caught before it reached my autonomic nerves[B][I]. It was sure a fine 59th Birthday present![/I][/B]
Following 5 intensive IVIG infusions my recovery was swift and i went home functioning pretty well with a cane but relapsed 10 days later. The 2nd course of IVIG didn’t work quite so well and went into a steady decline for another 3 months (was barely getting around with a walker) So back to the hospital but just long enough to have a double lumen catheter inserted for Plasma Pheresis.
7 sessions over a 2 week period and the results were remarkable. In that time, went from struggling around with a walker to walking with a cane, going to physical therapy and finaly back to work full time since March.
During the course of treatments, my dx was changed from GBS to CIDP but i think we’re all pretty much in the same boat around here.
So glad Mari has you in her corner and that she is in such good spirits, keep her smiling, it really is good for the immune system 🙂
Best of luck to you, keep us posted. [/SIZE][/FONT]
AnonymousJune 30, 2008 at 7:35 pm
Welcome Peter I am soon to be 54 next week.I contracted my Gbs from an exhaust fan on the roof of a major hospital in my area. Think that is were but cant prove it. Mine came very fast like your wife. Started IVIG within a couple of days and it slowed the progression , as it stoped at my shoulders down. In hospital for 5 weeks, went home and did pt for a couple months. Its been around 8 months and am back to work for a couple months now. Everyone is different in there recovery.My doctor did say you are better off when it hits hard and fast as far as recovery goes.I still have numb feet and feels like I am walking on rocks under the balls of my feet. butt it can take a couple years of healing ,so I just put up with my residuals. If the progresion has stopped you must take it slow and have her keep a journal of the proggress and soon she will walk again.Every couple days she will see improvement. Hope that helps you at this scarry time
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