What causes a re-lapse of Acute GBS?
AnonymousNovember 4, 2009 at 5:44 am
What causes a re-lapse of Acute GBS?
I got the Acute form of GBS back in December 2007 (nearly 2 years into recovery and 85% recovered).
But I constantly worry about getting it again. Every time I sneeze or get diarrhea or something I worry I’ll get GBS again as my body fights off whatever virus I may pick up in the future.
You see, I got GBS after having a bad cold, I was overworked, stressed and depressed at the time and as my body tried to fight off the cold virus that’s when GBS kicked in.
Every time I feel a post GBS ‘tingle’ or ‘twitch’ or slight ‘numbness’ I worry that I’m getting GBS again. My neurologist told me he doesn’t expect me to ever get it again and there is only a 3 in 100 chance in this happening (not sure where this figure came from).
So my question is, can you just get GBS again whilst sitting in front of the TV minding your own business, or do you only get it on the back of a viral or gastroentel infection; which is kind of what my neurologist is suggesting to me?
Also, somebody on here mentioned “stay off toxins” as this can bring on GBS again (note I don’t have the Chronic form). Toxins, meaning chocolate, suger, sweets etc? is this statement true?
AnonymousNovember 4, 2009 at 9:46 pm
Hi: The greatest fear we all carry, especially the first several years post, is that we will get it again. No one can say what would or would not bring it on again, but the truth is that it is very rare to get GBS twice. The chances are almost as small as getting it the first time. The return of residual symptoms can cause panic, but the best advice I can give you is to forget about it. We can’t live in fear. I now have another autoimmune disease that, when it recurs, will put me in the hospital every time. No one can say when or if it will return or how many times, though the chances of it happening are much greater than getting GBS twice. But you can only live your life one day at a time. living that one day in fear is a terrible waste. Enjoy your life and what you have. The rest is up to the fates. Dwelling on the symptoms or what they might be bringing can drive us nuts. I know it is not easy to forget-believe me I know-but I try every day to put it behind me and live what I do have. Chances are you will never deal with it as a chronic disease, but worrying about it certainly won’t help. Best to you, Jeff
AnonymousNovember 5, 2009 at 6:57 am
Thank you Jeff.
You are right, I expect the chances are very rare indeed of getting it a second time. My Neurologist told me that your average man walking down the street has just as much chance. I just worry every time I get a cold (and with winter coming up) I kind of worry that if I get a cold I’ll get it again; I will try and take your advice and enjoy life.
Best to you all.
AnonymousNovember 7, 2009 at 9:56 am
I am with Jeff. Take it one day at a time and enjoy that day. I remember thinking I wouldn’t see another day so when I wake up in the morning, I remind myself of how precious each day is. This may sound like backwards logic, but you probably should be happy if you catch a cold. Wouldn’t that mean your body is reacting to the virus instead of internalizing it. I was told one of the ways I may have gotten GBS was to have fought off a virus of the cold my husband had. That virus then started a chain of events. Pretty bizarre but goes to show you we are never certain how we got GBS in the first place. I, like you, was stressed, overworked, didn’t get any rest, etc. Try to focus on your health and enjoy yourself.
AnonymousNovember 11, 2009 at 1:36 pm
Hi Beethoven, I had acute gbs in 2007, too, and lots of fear about a recurrence…probably due to a lot of residual activity at that time. But, I got gbs when I was relaxed, well rested and at the top of my game…no stress what so ever. We had just gotten back from a fabulous vacation. Who knows? In the last couple months I have had a flu like illness, plus a head cold. The first time I worried about waking up and being unable to walk. Didn’t happen, I was fine. The second time I worried about waking up with Bell’s Palsy…my tingling that time was only facial. Didn’t happen, I was just fine. With those small successes, my fear is fading big time. For a little more “insurance”, I do follow some of the autoimmune diet guidelines. Each 6 month period I am losing noticeable amounts of residuals, which makes it easier for me to distance myself from gbs. I do know there are genes associated with gbs. But for most, it is a one time occurrence. I personally know 2 other people who have had gbs, and neither of them got it more than once. Hang in there! Andrea
AnonymousFebruary 8, 2010 at 10:32 am
good morning to everyone.
Sorry about my delay in responding to this particular thread. I had my first bout of GBS when I was 19 years old – full blown GBS (vent, plasmapheresis, 60+ days in the hospital with twice that time in rehab).
I had “almost” forgot about GBS completely, until Southern Missouri was devestated by the Ice Storm in 2007. I lasted 12 days more or less, and came down with a very rapid numbness in my feet legs and less than 24 hours later was on a vent again, with GBS a second time. This time was with a vent, another 60+ days in the hospital, IVIg multiple times, NG tube for multiple days.
I suppose what struck me when I read the posts was the worry, that was mentioned. I can’t say that I don’t worry – I even thought I was coming down with it again a couple of months ago. Again stress related and having a real hard time with somthing going on in life. I eventually calmed down and realized that I was creating a self-fulfulling prophesy if I was going to worry myself back into a hospital bed.
There are times that I wake up at night and my residual numb/cold/tingly/ice cube feet makes me think for an instant that I’m in trouble. So, I can’t say I never think about it, however I try not to dwell on it.
GBS for me, the second time around, was a bit of a blessing in a weird way. Long story short, we had a daughter and my wife was pregnant with our second little girl when I came down with it. During the ice storm, I shipped my wife and daughter out of town and brought in “refugee’s” into my house that had heat. We lost a couple of neighbor’s two houses away that had used a BBQ grill to heat their home. 9 full days without power and three more with intermittent power. Anyway GBS hit me like a sledgehammer.
I went from playing competitive softball on a travelling team at 31 years of age, to complete paralysis for the second time. The first time around I played collegiete level athletics, and was “grounded” if you will.
After GBS the second time, I spend more time at home, and with my family. My girls really enjoy me coming home and spending time with them. I’m able to do “most” things I could before. I’ve even built our new home (my wife and I did 50% or better of the construction…) for all of us. It just seems that I got GBS the second time for a very real reason. One that I can’t explain in this message.
Hang in there, and don’t worry yourself into poor health.
AnonymousFebruary 9, 2010 at 11:20 am
Hi Beethoven, As to what causes a relapse of GBS, I don’t know. But this reply is coming to you from someone who had three bouts with it. My first experience with it was 1954 at the age of 9. The second bout occurred in 1956, and the third in 1957. Each experience was more debilitating, the last culminating in six weeks in an iron lung and six months in a hospital. Everything was paralyzed but eyelids and heart. (I vividly remember my doctor in Concordia, Kansas, telling me when he sent me home after the second bout, “I won’t see you again with this, Jim. No one ever gets it three times.”) Unfortunately, he was wrong. And I can point to nothing I did or did not do that might have brought it all on.
Fifty-two years after that last bout, I look back on the experience and marvel at what it has meant in my life. Because I was permanently handicapped, it kept me out of Vietnam, maybe saving my life. While it shipped me off the farm in Kansas because I couldn’t do the work, it made it possible for me to go to college and ultimately earn a Ph.D., enjoy a career, and now retire. Lately I’ve been having pains and weakness that I think may be associated with GBS, but it could simply be the ageing process. I hope not to worry too much about it, to stay in touch with my body and its changes, and to enjoy being able to scratch where it itches. (I’ve learned, too, to never play the odds.) Jim
AnonymousFebruary 11, 2010 at 10:31 pm
I don’t much think about it anymore. I did for a long time tho. I had GBS in 2001..vent dependant for 4 months and in the hospital for 6.
I, like Jim, think I have benefited from it in some strange way. I have been home much more with my kids growing up and previously was just on the fast track at work. I (as do we all) know the value of being able to sit outside on my own, no wheelchair, breathing without a vent, no foley bag..feeling a breeze on my face.
When I think of the possiblity of getting it again it terrifies me. …so I try not to think of it!!
February 12, 2010 at 3:00 pm
I am the last person on earth to give diet advice, as petite I am not! But, everything I read points to glueten free. Without going on a tangent, I really think there is something to do with this leaky gut thing and autoimmune. If 70-80% of the immune system is centered around the gut, it seems like a good place to start. For instance, leaky gut can lead to ms, celliacs, ra all kinds of things. Our blood work indicated celliacs is probably going to be an issue. The ttg, celliacs specific test was ok, but another # was not. There is also this syndrome called mastocytic enterocolitis, which they say leads to leaky gut. It has to do with mast cells which are immune infection fighters made in the bone marrow and it regulates things SPECIFICALLY NERVE SIGNALS. Anyway, gleuten, refined sugars, (cheese, soy products if you have candida present in your gut) seem to be things that should be avoided. A long time ago there was this guy named gopal on the sight, in retrospect I wish I would have paid more attention to what he was saying. At the time we were newly dx and it was so technical. I remember something about sugars aiding in inflamation as sugars act as transporters for inflamation. Try looking up his member name if he is still in the archives.
Of course the usuals, pop, cakes,snacks, etc. Did you know there is glueten in lunch meat (except this brand called dietz and w….. can’t remember the name. I also read certain medicines have gleuten in the form of silica:eek:
AnonymousFebruary 16, 2010 at 9:10 pm
Hi Jessicah, here is what I know about the autoimmune diet. There are several books which describe variants of it. The eating style is based on the paleolithic diet, which is basically eating foods developed before agriculture. A year ago, I found a complementary practice with a doctor who specialized in nutritional medicine. The basis of the diet is meats, fruits and vegetables. The theory is that the body is “stressed” by digesting certain foods. People who practice this type of diet avoid simple carbohydrates (sugars) and complex proteins (plant proteins, as well as dairy proteins). Books that can help you understand the theory are “Breaking the Vicious Cycle” by Elaine Gottschall, and “The Anti Inflammation Diet and Recipe Book” by Jessica Black. The South Beach Diet is a very close approximation to this concept, and easy to follow. Basically, stay away from anything premade (hope you enjoy cooking from scratch). After struggling to recover for 18 months from a “mild case”, my recovery in the last year has been amazing. I will never go back to my old way of eating. Good Luck!
AnonymousFebruary 17, 2010 at 12:27 pm
I like everyone else worried for a few years and then realized that I couldn’t control it happening to me the first time so I shouldn’t waste my energy worrying about getting it again. My life is under God’s control and like so many will not forget that I had it as I have gained great compassion and empathy for people who struggle with all sorts of illness’s everyday that will not get better.
I have been healthy since my recovery and am not currently on any prescription meds so I am very thankful. There are other illness’s that are worse than GBS in my opinion after watching so many people struggle while I was in rehab.
I count my blessings!
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