other illnesses after GBS
AnonymousJanuary 3, 2007 at 11:13 am
I’m 6 months out from the GBS onset and my recovery has been very good but I’ve gotten 2 ear infections that turned into all out assaults on my respiratory and sinus systems. I was at the dr. on 1/2/07 and got a shot and pill antibiotics and decongestants. Jan 1st was just a blur as I felt so lousey that I slept that day away.
It’s abnormal for me to be so affected by something so seemingly benign. Is this what life after GBS is like? That the smallest little bugs/infections take you down like you’re a 90 pound weakling?
I’m wondering what ohters experiences are in the area of contracting other illnesses. Do y’all get sick often or is it worse than before GBS? I don’t recall having an ear infection in all my adult life and now I’ve had 2 really bad ones within 4 months time.
Thank you in advance for any feed back you can provide. Blessings to you all, you are truly my heros.
AnonymousJanuary 3, 2007 at 1:08 pm
About 4 months post GBS, I got a raging Herpes / Shingles type (but now quite either) infection that knocked me out for about three weeks. It was extremely painful. My doc and I all think it was related to a messed up immune system. That was nearly two years ago, and things have been fine since.
I hope this helps.
AnonymousJanuary 3, 2007 at 2:03 pm
Hi Kathleen, i just had strep throat/paralysis event on dec 20. it hit me in less then 12 hours and i ended up in the hospital for 4 days. i haven’t had strep since i was in grade school, and i couldn’t believe how fast it hit and how weak it made me feel. Take care, and I hope you are feeling better soon.
AnonymousJanuary 3, 2007 at 4:21 pm
Thanks for the replys guys. Jerimy no I’m not currently on IVIG or any other immunosupresant drugs. I’m post GBS and carrying on with some residual nerve/fatigue problems but pretty much resumed my life as it was prior to GBS (and am extremely grateful for that). Still the fatigue is the biggest issue so I don’t do as much as I use to but my range of activity has returned. It’s just that I haven’t gotten this sick over an ear infection since I was a kid. And 2 times in 4 months.
What confuses me is that GBS is the immune system attacking nerves. That doesn’t imply a weakened immune system, to me it suggests a strong one that kicked my butt in a big way. So why would I have more seceptability to illness afterwards. Is it because of the IVIG? If that’s even the case?
Anyway I keep forgetting that I’m not the person I was before GBS, my mind is funny like that (denial I think). So I forget that I need to be watchful until something creeps up and bites me on the nose.
I appreciate all your comments. And if you have any other comments please feel free to share them. This is really the only place I have to connect with others on this topic. In my life most folks have forgotten how sick I was and think I’m back to my old self. Only you guys have a clue of what this life is like. So thanks again. Take care.
AnonymousJanuary 3, 2007 at 5:31 pm
Sorry to hear you have been sick.
I had GBS 3 yrs ago. Remarkably, I’ve only been sick once since then, and that was just a bad cold. I actually seem to get fewer illnesses than before GBS (almost afraid to type this due to superstition!).
Many of our forum family members have reported getting increased residuals with minor illnesses though, so I may be an exception to the rule.
I hope you will feel better soon.
AnonymousJanuary 3, 2007 at 6:27 pm
Hi Kathleen: I struggle with fevers and fatigue though I have not actually gotten the flu or colds more than normal-when I do though they knock me out for a while. One neurologist said that I can’t imagine the trauma for the body with GBS and that every system is injured. He told me to expect a cold to put in bed for a week for the rest of my life. But I am 60 and I imagine that makes some difference too Post-GBS can be rough for everyone though. Having said that I will also say that every one is different with this disease and its aftermath and there are no rules for all. Your struggle doesn’t sound different from what a lot go through. Best of luck, Jeff
AnonymousJanuary 3, 2007 at 8:57 pm
I am starting my fourth month of recovery – all done at home. I won’t go into details as you can read previous posts of mine. I chose to do it wholistically. Still waiting to walk. I have an ear infection right now, but it is mild because I take lots of vitamin C. I probably got it because I drank mid and egg nog over the holidays. I normally take 10 grams when I am healthy and more when I feel an infection coming on. I think the vitamin C and B complex are keeping the pain away. I also take zinc when I feel sick.
Lysine seems to work for friends with cold sores or other herpes related infections. They said that if it doesn’t work, then you are not taking enough. Each body is different. Vitamin C also helps fight it.
Ditto with the vitamin C for infections like your strep. The white blood cells need to have vitamin C in them to work properly.I read a study that said oregano was found to be as good as some of the antibiotics.
WHen the GBS was flairing and breathing was getting difficult, I took MSM and it stopped it. I take 1000mg capsule of MSM if I get any breathing difficulties (bronchitis, pneumonia, asthma) and it takes it away in 10 minutes. It’s a miracle. I gave one to a fellow teacher who had asthma and needed an inhaler, and it did the same for her. Poof…you’re breathing perfectly. It has sulfur in it and I think maybe that is why the old remedies of giving blackstrap molasses worked.
But I am not a doctor….I call myself a good medicinewoman!
AnonymousJanuary 3, 2007 at 9:07 pm
The first two years after I had GBS it seemed like I was sick all the time. I even had ear infections, which I’d not had since I was a baby. I found that taking 1000 mg of Vitamin C really helps. Over the last year and a half I haven’t had more that a minor cold that didn’t even require a trip to the Dr. I simply up my vitamin C intake to 2000 mg a day. Taking a Multivitamin helps also. Best Wishes!
AnonymousJanuary 3, 2007 at 10:35 pm
I am glad that you have used vitamin C to help your immune system. I am surprised and happy that you get good results with only one of two grams. The rule they tell doctors is “While you are still diagnosing what the patient has, give them C!” That is how good it is! I take 10 grams a day when I am healthy – 15-20 grams when I am sick. There is a way to find out how much you need – it is the bowel tolerance test. If anyone is intersted, let me know. Quite simple. I think if doctors would give IV of C, there would be less super bugs in hospitals and faster recoveries.
AnonymousJanuary 4, 2007 at 1:44 pm
Almost 10 years post for me and it seems like these last couple of years I get anything that is going around the office. As long as I rest extra, I seem to come out of it okay. I don’t know if it is the timing of 10 years post or that I am 10 years older now (49) that has me catching anything.
I grew up with ear aches and can sympathize with you. A heating pad always seems to help – along with prescription ear drops and sinus medication. Good luck!
AnonymousJanuary 4, 2007 at 6:16 pm
Nate got a bad cold about 2 mos after he was diagnosed
It took him 2 weeks to stop coughing.
Then he got STrep Infection in his Kidneys about 6 mos after.
He’s been much better since he got home 3 mos ago.
He hasn’t been sick yet, knock on wood.
I have turned into a hand washing nut! I also clean the bathroom, shower, toilet and anything else he comes in contact with very often.
The last thing I want is for Nate to get sick. Scary thought!
I NEVER thought I would turn into a clean bug, LOL
My mother would laugh if she knew.
January 4, 2007 at 10:13 pm
I am about 15 months past GBS and have not experienced more illness than before. One cold about a year ago seemed more severe than most, but not anything to worry about. I do, however remember thinking what you are thinking. Will I get sick and GBS again?
God Bless you!
AnonymousJanuary 5, 2007 at 11:08 pm
Sometimes something simple like vitamin C does the trick, but it is too easy and people don’t believe us. They think that something pharmaceutical and expensive will work better! I think it kept me out of the hospital with the GBS as well as some of the other supplements.
Make sure that you are taking CAPSULES, not tablets. Tablets will mess up your stomach lining after awhile. The chewable C take the enamel off your teeth. It happened to a friend’s daughters. If your bathroom gets humid, I don’t know if I would store them there…..
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