sorry can’t figure out how to edit my OP…it has been almost 6 years since onset, not 5. A lot has happened in the past 6 years. Hard to keep track.

Thank you for your understanding! I hate feeling like the crazy person. I did get my lysol and have bleach on hand. It may mean extra dishes for myself because I don’t want the others doing kitchen work, and i lysol everything they get near. The one girl is okay now, the oldest seems to have strep. O…M….gosh that scares me. I have my own daughter sleeping in the same room and am thinking of moving her into my office until the air is clear. I have her drinking probiotics and taking vitamins and washing her hands often. I did explain in depth the reason I am so serious and what getting ill could mean for me. I was pretty graphic and ‘worst case scenario’ but made sure the mom understood that when I got sick initially it was due to a simple day at the beach with my kids…not knowing that beach had just been re-opened after being contaminated. Just because the levels of bacteria are at a “safe” level, doesn’t mean they won’t make someone ill. In my case, a cut toe on a submerged rock in shallow water changed my life. If something that ‘simple’ can do that much damage, I told her to think what direct contact with a ‘Just a virus’ could do to me. She had been relieved when the doctor told her it was “just a virus” the kids had. Ugh. Again thank you for understanding and making me feel less insane.

Chirpy….our immune systems can over react to anything we get. Since there are known triggers to GBS and relapses, we try to avoid getting sick with those particular illnesses. But, I have read that even having dental work done can be a trigger. You eventually stop being overly fearful because you can control your own surroundings, but in this case I can’t control the other people and what they do outside my house. Seems that something is going around here in town because a LOT of teens are complaining of being sick with the same thing. Not sure about the lower grades because my daughter is home schooled and the other girl who lives with us has not said anything about her school mates being sick. I try to keep my own immune system healthy, but not over do it because I am not sure what having an overly effective immune system might do. Some of us get sicker easier, or at the very least when we do get sick it lasts a lot longer than it did before we got GBS. Others rarely get sick (maybe because we take precautions? or are just lucky or our systems are on high alert).

Sorry I haven’t been around. I saw the fibro doctor who said I indeed have that on top of the GBS. Lovely but explains some things. Now I don’t know what is residual and what is fibro related UGH more to ‘learn’. She put me on neurontin because she said since i first tried it when I was new to the GBS, things might be different now. Okay so I agreed to give it a try. Wowzers!! I started hallucinating and was thrown into a full blown 3 week long manic! I tried to stick with it hoping my system would adjust, but I couldn’t handle seeing the bat-like black smoky things crawling on the walls and watching us and the manic was not a productive state, it had me spinning in circles unable to focus or catch a racing thought. Hubby talked to the doctor because I had taken pain meds my regular doc wanted me to try (Soma). The Fibro doc told him that I was not to take the neurontin at all, go off of it at once and she confirmed i did indeed have a manic episode. As if I didn’t already know that!
So I am still dealing with the back pain. It will wrap around my side and chest and makes life miserable. But if i press and poke around under or below my ribs nothing hurts or feels uncomfortable. BUT my ribs feel bruised. *sigh* I dunno. I did start taking supplements and was put on a high dose of Vit D3 to see if that would help. I didn’t notice ANY difference. I am even taking magnesium and CoQ10 plus a full spectrum multi, changed my diet, am trying to be more active even when I don’t feel like it. Still going to counseling but the small changes I am trying to make don’t make a dent in the depression and hopelessness I find myself in. Put on a smile and push through because I don’t know what else to do.
I will be making yet another appt with my regular doctor to make sure nothing is going on that would cause the pain in my back, side and ribs that I should be worried about. Last time I saw him the xrays showed nothing and the blood work…including extras for auto immune stuff just in case…all came back normal. I know if i go back to the fibro clinic the woman is going to tell me she can’t do anything for me. OH!! Almost forgot! I was given Naproxen to try for inflammation pain. I had put of trying it because of all the damn side effects I have had with others. Okay fine, broke down and took one. Within 2 hours my legs from the knees down and my feet felt totally paralyzed! Completely numb and I had to watch where I was walking because I couldn’t feel if my legs were even moving!!! I also had a very empty feeling in my chest, as if my chest muscles were not working properly. I was pretty freaked out but did not want to go to the ER in case they shot me up with something that caused some other nasty side effect. Pharmacist told me not to touch that again. What else is out there for pain??

Things I have tried and either have not worked or have had bad reactions to:
codeine products
naproxen
cymbalta
neurontin
Ins wont touch Soma but it didn’t really do anything but knock me out and the pain woke me up.
Robaxin-felt heavy chested and residuals flared up big time and no pain relief at all

I am sure there are a couple of others, but I can’t think of them right now. I am so close to saying to heck with it and living in pain and saving my crying time for when I am alone or up late and everyone else is sleeping. Oh and we thought the back pain was related to my poor computer posture but my computer was down for over a week and I woke up with my back hurting. It doesn’t matter if I sleep in bed, on the couch, don’t sleep, use the computer, dont use the computer. It just is. I really don’t like whats going on. help??