Rarity of GBS

    • Anonymous
      May 6, 2006 at 6:30 pm

      Dear Friends:

      During our last local support group meeting I heard something from Dr. Schilke, our local leader and a member of the GBSFI Board of Directors. He said the accepted incidence rate of GBS of 2 to 3 cases per 100,000 people per year could be lower than the actual number of cases. Many cases of GBS are so mild that they are not reported at all. Many cases are misdiagnosed as some other type of polyneuropathy. and some cases are written off as psychosymatic illness. It is interesting because it is the first time I have heard anyone of some official capacity state that the official incidence rate could be in error. This raises a lot of questions which I have never considered before. I always thought GBS was pretty well reported because of its seriousness, but is it it possible that this assumption is wrong? What if the serious GBS cases are just a small percentage of the total number of cases. What if most cases of GBS are so mild that they easily escape notice?

      It seems like the more I learn about GBS, the more I realize that we know so very little about it.


    • Anonymous
      May 6, 2006 at 7:52 pm


      If I had gone undiagnosed for another month or so, I would not have known that I had CIDP… By the time I was diagnosed I was starting to get stronger… I have not fully recovered, but I am a lot better than I was back in August and September… I think I would probably have just given up due to the expense of going to so many doctors and having so many tests to “rule out” other illnesses… I would never have know “what” I had and would never have found this group…


    • Anonymous
      May 7, 2006 at 8:57 am

      Here in my area of northern England, a municipality/metropolitan borough, of some 180,000 people there have been 5 known cases of GBS in 7 months. No obvious connection. 4 female, 1 male. Ages ranging from 57 to 82.:confused:

    • Anonymous
      May 7, 2006 at 4:19 pm

      When Frank first got sick in Dec 2000, then diagnosed Jan 1,2001, his primary care Dr never reported the adverse reaction to the Flu Vaccine as he was suppose to do. I found out through these forums from Jethro about reporting it. I was the one who then contacted the CDC in Georgia and they sent me a report for the Dr to fill out along with what I had reported. I asked the Dr when I brought him the paperwork to fill out if he was the one who should have reported the adverse reaction to the Flu Vaccine and he said, “I didn’t know I was suppose to report the reaction to the CDC.” 😡 He was lying through his teeth, he knew he had to report it and wasn’t a very happy camper that I did.

      So you are right, there are so many cases of GBS/CIDP not reported to the CDC along with I am sure many other illnesses. Just imagine other countries where this happens too. So like we have said years ago, we will never know the correct percentage.

    • Anonymous
      May 9, 2006 at 5:19 pm

      I vaguely remember Jethro quoting an incidence of either 8 or 4 cases per 100,000 population. I believe his reference material was a University of Chicago study.



    • Anonymous
      May 9, 2006 at 5:36 pm

      The numbers 8-10 sounds just about right, but I don’t know where Jethro got this info. I do believe and have always believed the numbers to be higher. If my memory is correct, I think Jethro thought the numbers should be higher too. Not all cases of GBS/CIDP are reported.

    • Anonymous
      May 9, 2006 at 5:46 pm

      As I recall, 2 to 3 cases per 100,000 would be ‘officially’ considered over the top. The ‘official’ figures are nearer 1-2 per 100,000.

      I once found a site about GBS that suggested 8 per 100,000 and I believe that makes better sense. If only because,

      as Lee mentioned, there are mild cases
      some cases are probably undiagnosed – had GBS not progressed with me, it would not have been diagnosed as such
      it is not a reportable disease
      some cases of GBS are no doubt considered psychosomatic – as in (and I kid you not) ‘you cannot walk because of stress’. To which the only fitting reply I can think of is “Round objects”. (The reply “Who is Round, and to what does he object?” has been done!) Not my joke, saw it on TV.

      and the swine fever vaccine in the USA did not ‘offically’ increase the number of GBS cases. Even though the number of GBS cases following the vaccine grew

      Actually Lee – I am intrigued. You said that Dr. Schilke said that many cases of GBS are so mild that they are not reported at all. My question is: to whom does Dr Schilke (or any doctor) report cases of GBS? Because I didn’t think they were reported to anyone.

    • Anonymous
      May 9, 2006 at 5:50 pm

      Very good question, T.A.

      Brandy, I do remember that he quoted a University of Chicago study because I asked Dr. Steinberg about this number at the Long Island meeting. He glared at me and said the the 8 in 100,000 number was far overstated.


    • Anonymous
      May 9, 2006 at 6:58 pm


      The Center For Disease Control here in the states is where cases should be reported. But most go unreported unless they come from food poisoning, any vaccine, chemical poisoning. I don’t know what the criteria is for reporting GBS, or if it has to be reported unless it comes from an enviormental source or vaccines, or food. Hmmmmmmmmmmmmmmmmmm
      that is something to ponder. Does anyone have an answer to that?

      Center For Disease Control is the CDC in Atlanta, Georgia.

    • Anonymous
      May 9, 2006 at 7:01 pm


      The Center For Disease Control here in the states is where cases should be reported. But most go unreported unless they come from food poisoning, any vaccine, chemical poisoning. I don’t know what the criteria is for reporting GBS, or if it has to be reported unless it comes from an enviormental source or vaccines, or food. Hmmmmmmmmmmmmmmmmmm
      that is something to ponder. Does anyone have an answer to that?

      Center For Disease Control is the CDC in Atlanta, Georgia.[/QUOTE]

      P.S. Diseases or illnesses that are contagious must be reported to the CDC, so they can keep a check on it so we don’t have any epidemics spreading around the U.S. or the world.

    • Anonymous
      May 9, 2006 at 9:57 pm

      in 1999 gbs did not have to be reported to the cdc. lymes disease was supposed to be reported but my infectious doc did not report it. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 10, 2006 at 5:26 pm

      it was like that for me and when I first came on the site someone said outright that it was all in my head. so I am not surprised at all at that discovery.
      Funny thing too was that I got a flu shot that year. so now I stay away from flu shots to me they are dangerous and bad for my health.

    • Anonymous
      May 10, 2006 at 6:58 pm

      Dear Eryn:

      There is a pretty good reason why Doctors may think that it is all in the head of GBS patients. When I was studying medical psychology in school, the classic example of a psychosomatic illness is when a patient claims their whole foot and whole hand doesn’t work. Medical professionals see that as a warning sign that someone is faking an illness. In most cases, neuropathy doesn’t work like that. For example, there are three major nerve bundles that serve the hand. The wiring of the nerves is that one nerve serves the outside of the hand, the little finger, and half the ring finger. Another nerve serves the inside of the ring finger, middle finger, and half the index finger. The third nerve serves the inside of the index finger and the thumb. Most neuropathy will affect one hand nerve so the whole hand won’t be affected. I was taught that there may be one or two extremely rare conditions in which the whole hand is affected, but they are so rare, the chances of ever seeing one of these cases are miniscule. Unfortunately, GBS is one of those extremely rare conditions.

      When I came down with GBS, I was really pretty frightened that Someone would say it was all in my head, knowing what I knew about how doctors are trained to spot a hypochondriac. I was even doubting myself in some small way. Believe me I was relieved when the doctor took me seriously. He had also seen two other cases of GBS in his medical history so that probably counts for something.

      Anyway, I guess my point is, that from their perspective they probably had no malice towards you and they had a reason to suspect hypochondria. Well, almost a reason, they certainly forgot about those one or two rare exceptions.


    • Anonymous
      May 10, 2006 at 7:51 pm

      Brandy – that was what I was trying to get at – GBS is not a notifable disease, though in some cases the cause of it may be – and it seems that even then, there is no guarantee of it being reported. Franks’s doctor did not report the adverse reaction to a vaccine – it was left to you.

      I find it shocking that reportable diseases are not reported and then incorrert figures are taken as absolute.

    • Anonymous
      May 10, 2006 at 11:06 pm

      I was diagnosed with GBS in late Dec 2005 and when I got home in mid Jan. 2006 I called my doctors office to ask if they reported it. Their response was ” it is the hospital’s responsibility”. I called the hospital and asked them and their response was ” we’re not going to report it unless we get a few cases to report.” My response is if you don’t report it, how do you know you have a few cases to report, so I did it.

    • Anonymous
      May 12, 2006 at 1:16 pm

      ok guys i have a question for you to ponder. should i be calling the cdc about my 4 paralysis events in the last 10 months since i don’t have a dr’s dx for any of them? even though i did see a dr a day or 2 before each event, then ended up paralyzed from what i feel was caused by the same problem that sent me to the dr beforehand. the aug 05 event was after a knee surgery and pain management injections into my back, came down with what was thought to be cellulitis in my thigh above the knee that was just scoped. oct 05 event came on while i was in the e.r. for shortness of breath, which was dx as pneumonia, after 1 day of having a sore throat. dec 05 event came after i had food poisoning 5 days prior to paralysis-was sick for 4 out of those 5 days. may 06 event came up after being told i had what the dr thought was acute bronchitis 2 days before-i disagreed with that dx anyway. i had pain in my lungs and shortness of breath for 3 days every night, was actually worse when i layed down to sleep-i thought it felt more like pneumonia but the dr saw the xray, i didn’t. since i have no dr making a dx and sticking with it from one time to another time, can these be reported? the only possible dx that is the same from start to yesterday is “generalized weakness” is that good enough?
      i have been told by a dorky little twirp of a psych dr that this is all in my head, even with all the problems preceding each paralysis event. my neuro says its not in my head-it is very real. at least i think i have a good neuro on my case.
      i have been told these might be gbs and not cidp cases-by my neuro, but during this past hospitalization the neuro who managed my case told me flat out that “once you have gbs-you will not get it again”– i had to bite my tongue so hard i’m shocked it didn’t cut it in half.:mad: he is a strictly by the old book type of dr—-which really made me mad, because he was teaching residents that were assigned to him. i did talk to my nurses and they agreed they were told and saw research on repeat occurances, as have i. i just happened to be my neuros’ first repeat, repeat, repeat patient!
      i was told by a few nurses that they heard talk from other resident drs that they thought i was having another gbs event, they heard this from my neuro’s residents, and it was all over the hospital. at least i know since my neuro is head of the neuro dept in this hospital, what she says really gets around.:)

    • Anonymous
      May 12, 2006 at 2:20 pm

      Hi there,

      What is it that you would report to them? That you want to report a non-diagnoses from various doctors? GBS is not an air borne communicable disease. Therefore, is does not come under the reporting guidelines, that the CDC has. Each state has a health department. They get the reporting documents from the doctors. Each state decides, unless a federal ‘funded’ disease is listed, what gets on the reporting list. That is all collected and collated for fed statistics. You want to get GBS tracked(I’ve tried to no avail) then there are two ways really. Get some politician at the federal level to find funds for the reporting at the CDC directly, or go to your state whomever, and find someone to get federal funding so your state will put it on their list. My state said sure, we’ll do it, but no money for it will ever be had, and until we see the money, nothing is getting on any list for tracking. Go see if you can get federal money, and we’ll talk. On this side of the CDC, it’s a matter of what society needs most, which is to track airborne and communicable diseases first. It’s not a complaint department.
      As for the stuff is all in the head, it’s pretty common for docs to list that as a possability before GBS is written in stone. Should everyone go back and really read their medical file, you will probably find over 90% of us have a reference to something like that in there. Mine was listed as possable phycosocial right after possable GBS. I was surprised by that too. When people get stumped, or confused, and don’t have answers to a problem, human nature will take over and we go with what we know. What we know is inside the box, and when things spill over outside the box, the first reaction is to try and get you back in there. Kind of what Lee was saying about their view. I would assume that docs see more hypocondriacs then GBSers in a year. Same in the pain area. The number one complaint in society expressed to docs, is pain and fatigue. Two of the biggest issues for GBSers, but that darn everyday doc we see, sees about 400 addicts trying to play him/her a year probably for drugs and being too tired to work. So the minute we express to our doc that a pain med has to be upped, especially if it’s an opiate based drug, he/she turns on the gaurded defences and starts going into the same old drug box about addiction, and does everything to try an not get you relief. Same with fatigue. Never ending battle for thruth, justice and the GBS way.

    • Anonymous
      May 12, 2006 at 2:34 pm

      GBS caused by “vaccines” must be reported to the CDC from what I was told.
      Don’t know if that is true only what I was told. When I called the CDC, they sent out a report that needed to have the “Lot Number “,Date on Bottle of vaccine, the administering Dr, and the drug manufacturer. I presume they do cross check references to see if anyone else from that “Lot Number” and manufacturer developed GBS.

      Not that GBS is contagious, we all know that it isn’t, but I think they collect data other then contagious diseases.

      You are right about Drs seeing more hypochondriacs then GBSERS.

    • Anonymous
      May 12, 2006 at 2:40 pm


      NOt all cases of GBS are reported to the CDC since GBS is not contagious.

      But if GBS is caused by [B]vaccines, or an enviormental poisoning,[/B] I think it must be reported to the CDC, that is what I was told.

    • Anonymous
      May 12, 2006 at 2:43 pm


      My husband’s Dr didn’t report that the “Flu Vaccine” caused Frank’s GBS. I did it and the Dr wasn’t to thrilled that I did, because then the lazy-ass had to fill out a report.

    • Anonymous
      May 12, 2006 at 3:25 pm

      Hi again,

      As you can see Brandy, all inquieries were for the vaccine. What disease is attached to it, is irrellevent. There was nothing reported, or put into a stat column that has anything to do with GBS. GBS is something in a box on a piece of paper as part of the info. Everything concerning the vaccine only, was tracked. Which is, did the vaccine cause something or not. To what degree, or what disease might have resulted, again, is irrellevent to them. That’s for individual lawsuits to decide and prove I guess. The reallity is, nobody reported GBS to anyone, because there’s nowhere, or person, to report it to. It’s just written on a piece of papper in a vaccine file somewhere that you, or the doc, submitted. Vaccines that cause enough reaction in a person, for that person to go back and complain and action having to be taken, get reported, if that vaccine has been in their recent medical history. Providing nothing else concrete is found. Then you report the vaccine, not the disease. That would be in the resulting complications side suspected by the vaccine, which could be GBS and 40/50 other diseases that are going through the courts on that very issue. The CDC, and every state’s health department, have a list that you can see for yourself what’s on them. Right on the websites. Show me anywhere that GBS can be found. What caught my eye with my state years back was they had a particular cancer on the list. A non-airborne disease. That’s when I went to work to get GBS on it and found out what I stated in the other thread. A senator’s relitive or something must have had that cancer, and it was individually funded federally.
      I believe GBS should, and needs, to be tracked. If it took the place of polio as the leading cause of periferal paralliss, you’d think it would be worth getting a head start on tracking, instead of waiting like polio had to before we tracked it.

    • Anonymous
      May 12, 2006 at 4:19 pm

      I totally agree that GBS needs to be tracked. When the Drs and myself filled out the forms for the CDC, it did ask what the adverse reaction to the vaccine was and both the Primary Care and Neurologist wrote Guillain- Barre Syndrome caused paralysis from vaccine. I am hoping that there is a GBS file that should matter to the CDC.

      We are talking about an agency of the government, so maybe you are right and that the file is tucked away and no one cares about people with GBS/CIDP. How wrong that is. 🙁

    • Anonymous
      May 12, 2006 at 6:43 pm

      Right, what I don’t understand is, as GBS in itself is not a notifiable disease, the same as many other ailments, where do statistics come from for all those non-notifiable diseases?

      For example, so far as I am aware, injury in a car accident is not notificable to anyone. Yet we (well I do) hear statistics regularly concerning the number of people dead or injured in car accidents, the number of accidents that involved alcohol etc.

      Now those statistics are either made up, a best guess or based on fact. They are presented as factual and the only way that can be true is surely for a central record to be kept? Doing it is not hard nor time-consuming – certainly not in this day of computers.

      If no records are kept, then it does not matter to the “statisics” how many people contract GBS (or something else) – because it will not affect the “statistics” when they are based on something age-old, on a tradition in fact. I think the tradition is called ‘don’t rock the boat’ (even when it is sinking). The name of that particular boat is “Silly Blighters”.

    • Anonymous
      May 12, 2006 at 7:02 pm

      Dear Teresa:

      As for Oregon City, the CDC asked hospitals and medical offices around the area to report incidences of GBS, Kawasaki’s disease, and several other auto-immune diseases because they suspected a cluster based on higher levels of other diseases. Since there is a limited number of places a person can go for medical care, authorities think they have a good handle on the number of cases. The problem with that is that the local church group called the ‘Kissers’ do not go to hospitals or use doctors. Since their infection rate is astronomically high in relationship to the rest of the general population, the numbers are going to be skewed somewhat. Since they have roughly 2,000 out of 25,000 people in Oregon City, there is a lot of infection which isn’t going to be reported.

      You can get good numbers by studying small communities which have limited possibilities for health care. If there is only one hospital within a 100 mile radius, then you can count the cases of GBS versus the population to get a reasonable incidence rate. The statistics of many of these small communities combined together will give you a large enough sample to project a nationwide incidence rate, within a certain level of certainty. The certainty of any number can be calculated on a number of factors including the sample size and the standard deviation of the mean. Or so it is supposed to work. The problem is that the more complex the system, and human being are very complex, the less reliable the numbers will be.

      Well, enough of the statistics lessons. They really do not count cases of GBS. They find small controlled populations and project those numbers to represent the entire nation or world. Sometimes this method works out to contain some degree of truth, and sometimes it doesn’t.


    • Anonymous
      May 12, 2006 at 7:20 pm

      if you go to medscape dot com and put in a search for gbs in the top right hand box, you will see an article about gbs and vaccines with the dates of oct or nov 05 thru feb 06. read the article and you will find the cdc and other health agencies are interested in gbs and vaccine related cases and reporting cases of gbs from vaccs. i would put the link up but i haven’t figured it out yet. please do read the article-there is hope for gbs people with the cdc. there is also a volunteer reporting agency that is listed in the article.:)

    • Anonymous
      May 12, 2006 at 7:38 pm

      Dear Lee (Hi there!)

      I hear what you say – but you mentioned the Kissers and you also mentioned that “they” really do not count cases of GBS.

      And Angel, you mentioned reporting cases of GBS connected with vaccines.

      But that is what I am getting at – there is no simple system of counting the number of GBS cases and THEN considering the possible causes. It seems that vaccine reactions are considered but not GBS in its own right. So everything gets confused and muddied.

      I would be in favour of a simple system whereby an outcome (a diagnosis)
      is reported to a central data base and, at the same time, a possible cause is also given. That way, you have the number of GBS cases reported, in a year – and then you can have it broken down by possible triggers.

      I just do not see the point of dong things the hard way when there is a much simpler and easier way – one that I believe would be more honest and nearer to the truth.

      To search for anything but the truth is, to my mind, a waste of time, energy and valuable resources.

      To appear to search for the truth whilst avoiding it at all costs is small-minded and sad.

    • Anonymous
      May 12, 2006 at 8:32 pm

      i agree teresa, i hate to do research unless it would be helpful to more then just myself. i don’t have the means or energy to do wasteful things like go to the gov or better yet the governor of my state-you could sit and spin your wheels for eternity if you tried to do that here. i do think gbs should be tracked but since there are so many syndromes and possible causes it would be soo hard to do.