Colds, flus, etc

    • Anonymous
      November 10, 2007 at 12:10 pm

      HI all,

      I sit here in worse shape than my initial attack last March (07)
      Have not called dr. yet.

      Was wondering if a simple cold virus could flare up symptoms soo severly or GBS just lies dormant in our bodies…until something flares it up again??

      Don’t have energy to type/explain more right now…just curious.

      Also, anyone els have food allergies that flare up there symptoms?? JUst got documentation that I do! Every time I ate one of these allergens, I ended up back in the hospital with neuro problems….And dr.s said this was all psychological!!


    • November 10, 2007 at 2:34 pm

      I have read that illness flares things up. Kevin used to get in grown toenails that were infected and I used to think that infection put the immune system into attack mode. Well, if I think about it, it did, and it didn’t stop again. So this is when I should have realized it was not residuals but a new attack (cidp). So I guess in our case, cidp, yes, I do think ilness or other irritants do cause flare ups.

      How long have you felt cruddy? Is it affecting newer areas thanin the original attack? Is your activity level over done, or are you taking it easy? I guess based on our dx, redx,redx,re dx experiences, I would say be sure it is not cidp and that you are not wasting valuable treatment time. Ask for a ncv/emg to compare to your original to see if there is a worsening. If there is, you have your answer. Good luck!
      Dawn Kevies mom

    • Anonymous
      November 10, 2007 at 5:40 pm


      as dawn says, there is a chance that it is a real attack & she gives you appropriate action. also a cold can put extreme stress on your body & it is more likely you need to rest much more than a non-gbser. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 10, 2007 at 7:52 pm

      What foods are you allergic to? Perhaps you are allergic to more than just those and it is compromising your health. Three weeks ago I gave up ALL carbohydrates and now only eat the protein and veggies that work well with my bloodtype. I have lost 12 pounds, do not have anymore food cravings, and have much more energy. I gained weight when I had GBS a year ago so this is a blessing. I can see that my skin looks healthier and I feel better. I plan to stay on this for the next two months. After I lose the weight, I shall do a modified plan.
      I think most peole are walking around eating the wrong foods. Then we take medications (with side effects) to stop the conditions we get. We attribute it to aging or stress or whatever. But we continue to eat incorrectly. I have a passion for sugars and starches, but they are not worth the price of aging us and making us sick. I wonder if many of us on this site could have avoided GBS had we given up the carbs. It sounds too simple, but the books I am reading are convincing me how bad they are. Fifty or more years ago they thought carbs were bad and fat was fine. I think we are coming full circle but not fast enough. I knew this years ago and could kick myself for not doing it sooner. Being an O bloodtype, I have given up wheat, corn, milk, and peanuts. These are the main culprits for me.
      Perhaps if you tried something similar, you could eliminate some of the foods that are overloading your system. If you need help, let me know.

    • Anonymous
      November 10, 2007 at 10:13 pm

      My understanding of the process of flaring with infection is the same as Dawn’s–that an infection puts the whole body into attack mode meaning that there is an upswing in the immune reponse to everything. As the body tries hard to fight what is presently challenging it, it also responds to increase other non-specific immune responses, so you flare. I see this all the time in children with auto-immune blood illnesses. They get a cold and get significantly worse –often so much so that they have to have treatment.

      An alternative, less likely, explanation is this. When we make antibodies to something, memory B cells are also created that have the memory of how to make an antibody to that specific challenge. So, if you have an infection to measles, for example, you make lots of antibody to control this infection. The antibody level (titer) to measles eventually falls if you do not get exposed again to measles for years and it is not enough to fully protect you. But if you are reexposed to measles, the memory B cells that are quietly just existing in your body, reactivate and start making antibody quickly again to keep you from getting measles a second time. Some of late reactivation of GBS may be something like this–if something similar to the original challenge appears and is similar enough to the part of the nerve for which cross-reaction occurred. This is not likely, though. Thank God auto-immunity is rare because there are not a whole lot of antigens that crossreact in this complex immune system.

      There are over 100 kinds of cold virus and they keep mutating each year to be different. This is why you never get completely free of catching a cold–they keep changing. Influenza tends to be mainly one type each year and this is how they can come up with a flu vaccine each year when the guess is good enough.

      With Hope for cure of these diseases (I gave up hope for cure of colds long ago!)

    • Anonymous
      November 10, 2007 at 11:23 pm

      Hi Becca, Sorry to hear you are having more problems. Go to the site NAET, regarding food allergies. Let me know if you need more info-I have alot that might help you out. Please take care of yourself Hun! Call your Dr. Have you ever heard of Periodic Paralysis? Its not in your mind! pm or email me if you would like more info. Get plenty of rest. HUGS!

    • Anonymous
      November 11, 2007 at 8:37 pm

      Hi all,
      I am now back down to just basically infant rice food. Trying to eliminate everything..but supplements to keep me “Going”. It takes all energy to eat and use restroom – husband has to carry me as I am completely limp – neck, arms, feet…obviously fingers work.

      I came down with head cold about 10 days ago. 3 days into the cold my symptoms became noticably flared up. I can’t remember what day I actually lost ability to walk. I tingle in legs/arms/face. Cannot open mouth much. I need assistance with any movement. Very weak and can’t communicate with body- I’m hoping this has “peaked” and I will get better. This is FAR worse than my initial atack. It only affected my legs.

      I have no choice but to take it easy 🙂

      Fear dr.s and hospitals…Frustrated wtih traditional medicine…..not worrying until problems breathing, right??? I can’t speak well, but no breathing problems…(all hospitals told me it was psychological when we have proof now that it’s not).

      Had very limited sucess last spring with IVIG’s. Waste of time and money.

      Feel like it’s in God’s hands now…


    • Anonymous
      November 11, 2007 at 8:39 pm

      By the way
      Allergic to pork, beef, eggs, milk products, and wheat

    • Anonymous
      November 11, 2007 at 11:14 pm

      I feel so bad for what you are going through.Sometimes it is not enough to eliminate the bad foods; we need to eat the beneficial foods. Do you have any idea what your blood type is? If you are an O, I do not think you are allergic to beef. If you can find out your bloodtype, I can tell you what foods would be medicine for your body. I can also help you choose the right supplements for your body. It is so much easier if you know the bloodtype.

      If not, we can work around it. Sometimes when your body is so overloaded, it makes everything seem allergic. Carbs really hurt your immune system. I remember reading that a soda has enough sugar to shut your immune system down for about 4-5 hours. (But that does not mean I do not enjoy drinking a PEPSI!)

      It sounds like your body is really depleted and needs some help. Let me know ..I feel the same way that you do about hospitals and doctors. I have only met 2 good ones in my life. I know Maimi Girl criticized the book on bloodtypes, because it was not written by a doctor! It was written by a Naturopath and I think his father was a doctor. Einstein couldn’t even get a job after he graduated from the University. Does this mean HIS ideas were not to be believed? I had a dermatologist tell me I had FLEAS when I actually had shingles after I returned from backpacking through Europe. He even wrote a prescription for flea powder!!! I paid 60 dollars for that diagnosis from a DOCTOR. Let me know if I can help.

    • November 12, 2007 at 10:14 am

      PLEASE do not wait till it starts affecting your breathing, each day you wait more damage occurs. Obviously if you have allergies, you have autoimmune issues. Therefore, it is not beyond possibility that you have cidp (regarding previous doc dx of psychological) You cannot give up!!! If I would have listened to the first docs psych dx for Kevin or even the second dx of md, where would Kevin be? No lies, the journey has been rough, and unpredictable, but thats what makes it a journey.

      Was a ncv/emg done before, a spinal, basic blood work including heavy metals testing or lymes disease? Maybe the first round of diagnostic testing was done too early, give it another round. Go to a different er, find a different primary. IF YOU ARE BEING CARRIED AROUND, THERE IS A PROBLEM, YOU HAVE TO GO TO THE DOC!

      You mentioned ivig did not work last time, did you get a full loading dose? 2g/kg of your weight, over 3-5 consecutive days? Did you continue after that? One round may not have been enough, perhaps you need a couple of loading doses and then a maintenance plan. Maybe ivig in conjunction w/ a steroid if the ivig alone does not work.

      Kevin was so happy this weekend, he could run again, he went to a friends birthday party, he can dress himself again. He actually told me he was happy and wants to get the treatments every month so he can have fun again. I want you to feel that way! Don’t give up!!There is medicine for this!!

      Please be careful with supplements, just because it is natural does not mean it is safe, we learned this the hard way with melatonin. Also, I have read too much of lets say vit c for an autoimmune compromised person irritates the situation. It is very complicated, your immune system is ALREADY overactive (when in attack mode as it is now with your cold) Inducing supplements at certain times actually makes it stronger (attack modes) Be careful!

      Good luck and I wil be thinking of you!
      Dawn Kevies mom

    • Anonymous
      November 16, 2007 at 5:24 pm

      I have to agree with everyone else; why wait to go to the doctor? Especially with GBS, I think it’s always better to be safe than sorry. Anything with possible breathing/autonomic effects is nothing to gamble with.

      I ended up back in the hospital this week because I lost the ability to walk again all of a sudden, and my breathing capacity was cut to about 1/3 of what I can normally take in. Rather than wait it out to see what was wrong, I went to the ER without delay.

      Luckily, I discovered that if you go to the ER and tell them you have a history of GBS and you can’t breathe, they get you into a bed really quickly. Thank goodness!

      Anyway, it turned out that I had the very beginnings of a urinary tract infection. I’d had lab work done the day before by my neurologist, including a urinalysis, and nothing was picked up. But the next day it started to show up on the tests.

      So basically my nerves started reacted to the building infection about three days before they were detectable in the lab. Unbelieveable! I started antibiotics right away, and now two days later, I’m walking again, breathing fine, and feel generally like myself once more.

      So yes, your body can react horribly to any type of infection, minor illness, allergies, etc. All the docs I’ve come into contact with this week have told me as much. They all said that an actual relapse of GBS is quite rare, but anything that gets your immune system going can cause a flare severe enough that it really feels like a relapse is occurring, especially this soon after coming down with GBS (I’m about 7-8 months out).

      Heaven help me if I get REEEEALLY sick anytime soon! 😮

      GBS really is the gift that keeps on giving. Darn it.

    • Anonymous
      November 16, 2007 at 10:51 pm

      Holy cow, we were both attacked in March 07!
      So you have flare up with infections, etc too…hmmmm….I thought GBS struck once and that was it…especially after 10 IVIG’s and two PE’s.

      I’ve been told by too many dr.s at hospitals (besides my regular neuro) that this is psychological as my symptoms are “unusual”, so we don’t bother with ER’s anymore…and decided to wait out this flare up. IT’s been 2 weeks since my head cold began & symptoms started flaring up…one week since it peaked and I am doing “better”…taking a few steps here and there, unable to raise arms, hold head up for very long, still tired but not sleeping all day..but improving each day.

      Thanks for the response!

      (BTW psychological was ruled out by psychiatrist and psychologist!)

    • Anonymous
      November 17, 2007 at 12:03 am

      I just wanted to wish you a happy birthday. I really hope you got to celebrate. I wish you well.
      Your fellow scorpian,