should i have any vaccinations?

    • Anonymous
      August 22, 2006 at 4:49 am

      Hi everyone!
      I’m new to this forum and wanted to say hi! Sorry if this is in the wrong catergory.
      I wanted to ask your advice too. I know GBS can sometimes be triggered by vacinations but I was wondering if it’s OK to have vaccinations after you’ve had GBS? I had acute GBS starting in January this year (not triggered by vaccinations) and was in hospital for 3 months with the whole shabang – tracheostomy, all-over paralysis etc. I’m still recovering but I really thank God that I’m home now. Back to the point – I heard somewhere that it might not be a good idea to have any vaccinations for up to a year after the onset of GBS, just in case. Does anyone know if this is right, or even if you’re never supossed to have vaccinations after GBS? I really want to go on holiday overseas but I might need more vaccinations than I have had already and I don’t want to risk anything. Does anyone know if malaria tablets are also risky because they get absorbed into your blood too?
      Any advice greatly appreciated! Thanks and all the best with your recovery to everyone.xx

    • Anonymous
      August 22, 2006 at 5:33 am

      hi mindy & welcome,

      although rare you can get gbs from vaccine. like lyrica each of us has to decide for ourselves. my opinion is to stay away from both if possible. btw, if you got gbs from a vaccine, then you never get another vaccine. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 22, 2006 at 7:04 am

      I’ve had Miller Fisher. When I posed the vaccination question to my Neurologist and Family physician the answer I got was, “probably not.” That is not definitive but it is enough for me. I would rather protect myself against Flu than chance Miller Fisher again. I do know that those who administer the Flu shot program in my area of Florida warn against it if you’ve had GBS.

    • Anonymous
      August 22, 2006 at 7:18 am

      No Vaccines, period.


    • Anonymous
      August 22, 2006 at 8:18 am

      After you’ve gotten advice from us, and from your doctors, it has to be your decision. As for me, though I can’t prove it, I know the flu shot caused my CIDP. I will never get anything like the flu shot again.

    • Anonymous
      August 22, 2006 at 10:51 am


      Until 2 years ago, I had never realized or heard that vaccinations could cause GBS, so for 18 years after my bout with GBS, I would get everything that was required. Now that I seem to be suffering from post GBS decades later, I will probably re-think having shots, but like you, I am undecided. As for maleria tabs, I would take them every year for many years (after GBS), as my parents have a holiday place in the middle of a maleria region in South Africa. Having said that, Im not sure if maleria tabs would pose a risk though, isnt the risk of having vaccinations that they inject ‘live’ viruses (or whatever it is) into you? I [B]think[/B] thats what it is, but I’m sure someone will let me know if im wrong. 😉

    • Anonymous
      August 22, 2006 at 1:51 pm

      My Primary Care Physician indicated that I should not take flu shots.

    • Anonymous
      August 22, 2006 at 2:17 pm

      Frank was told never to take any vaccine ever again, since the Flu Vaccine caused his GBS.

      But this is a personal decision that only you can make. Just find out all the info you can on vaccines and make an informed decision if vaccines are right for you.

      Take care

    • Anonymous
      August 23, 2006 at 10:32 am

      Doc told me no more shots for Mason. I pulled his records since he was born. He was admitted every time after his shots, very sick.

    • Anonymous
      August 23, 2006 at 10:38 am


      according to the CDC, anyone diagnosed with GBS should not get flu shots. That is their oppinion, as for me, I was told to never get one by my doctor after my recovery. But I keep checking the CDC website for updates on that sort of thing.

    • Anonymous
      September 13, 2006 at 3:04 pm

      I have gotten a flu shot for the last several years. The only time I didn’t I had a terrible case of the flu….was sick for days and very miserable. Don’t want to do that again. I had GBS in 1978 and 1982 but not from vaccines.

    • Anonymous
      September 13, 2006 at 3:37 pm

      I will choose to never have another vaccination! As a side note, we have an Autistic grandson ~ perfectly healthy at birth. His pediatrician advised to never give Brandon another shot as he is positive that is where the autism came from. The doc said he would never give vaccinations to his own children. That should tell us all “something”.

    • Anonymous
      September 13, 2006 at 6:06 pm

      According to what I read several times on the German forum, the leaflet included with flu shots in Germany actually includes a warning about possibly causing GBS.

      [I]posted August 28: u.a. Umfragen ergeben haben, dass ca. 2 / 3 aller Erkrankungen auf diese zurück zu führen ist. Auf den Beipackzetteln der Impfseren soll dies bereits vermerkt sein. [/I]

      translation: surveys have shown that 2/3 of all cases (GBS) have been attributed to these. This is supposed to be indicated on the information leaflet included with the immunization series.

      Someone else posted a link to an actual information leaflet published by the drug company making it. On it GBS is actually listed as a rare (less than 1 in 10,000) side effect.


    • Anonymous
      September 14, 2006 at 10:08 am

      [b]If I have had GBS in the past, should I receive influenza vaccine?[/b]

      The incidence of GBS in the general population is very low, persons with a history of GBS have a greater chance of developing GBS than persons without such a history. Thus, the likelihood of developing GBS is expected to be greater among persons with a history of GBS than among persons with no history of this syndrome. Whether influenza infection or influenza vaccination might be causally associated with this risk for GBS recurrence is not known. For persons known to have developed GBS within 6 weeks of a previous influenza vaccination, avoiding future influenza vaccinations may be prudent. Other persons with a history of GBS are likely to be at increased risk of complications from influenza disease. The established benefits of influenza vaccination probably justify their receipt of annual influenza vaccinations.

      — [url][/url]

    • Anonymous
      September 14, 2006 at 10:29 am

      The medical community is reluctant to commit on the subject of vaccinations and they seem to be divided on the subject as well. I can only say that I never will have another flu shot.
      ALso, as I am the Denver area liaison, I get a lot of calls. One gentleman in my area, diagnosed with GBS in childhood in three separate incidences, had been excused from undergoing immunizations of any sort for years. SUddenly his neurologist said it would be OK. Patient was reluctant to put himself into possible danger of a recurrence. WHen I suggested that he seek a second opinion, he did better than that–he was tested for immunity of the various diseases. Turned out he was immune to all but one.
      Another way to be safe and avoid becoming vulnerable.

    • Anonymous
      October 5, 2006 at 4:15 am

      Hi Mindy,

      I had very severe GBS with a Miller-Fisher overlap in 2000. I did not contract my GBS after any vaccination. Despite this my neurologist who is considered an expert in the field of GBS/CIDP has advised me, “no vaccines, period”.
      I do have a link for vaccine manufacter “package inserts” covering all of the vaccinations out there, I have not been able to find any vaccines that do not list GBS as a possible “adverse affect”. (You can email me for the link if you like).

      That being said, an informed decision is the best kind to make in conjunction with your physician. Risks vs. Benefits and all that.

      But for me, no, never any “shots” ever again if I can humanly help it, I’ve seen what hell looks like and it is spelled G-B-S, and I’m determined not to visit that place again.

      best wishes to you,


    • Anonymous
      October 9, 2006 at 4:40 pm

      Stephanie, This is the thread that I think will help answer your questions.

    • Anonymous
      October 9, 2006 at 4:48 pm

      I like Ann’s idea – get tested to see if you are immune already, before having any sort of immunization.

    • Anonymous
      October 9, 2006 at 10:46 pm

      I was told no more flu shots. I got the swine flu shot in 76 and fainted. It p.o’s me to no end that I can’t have them anymore – (I’m around people alot); but I’m not willing to put myself through any of this any longer than I have to. I believe the theory that we have to take care of our faultered immune system ( I believe it was a quirk to my immune system, not that I am “sick”). I plan to be vigilant but not compulsive (I have a six year old to contend with). Heads up, stretch often, be strong. I can only try!:D

    • Anonymous
      October 17, 2006 at 6:38 am

      Thanks so much for your replies!
      I saw the nurse this morning and was told I needed to get typhoid as well as the combined tetanus, diptheria and polio immunisations before I travel. I was hoping I would be told that there was nothing to worry about but the most concrete advice I got was that GBS is considered a “non-proven possible side effect” of ALL immunisations now. I had the same advice from my neurologist, doctor and from GBS groups.
      I wish more was known about GBS but all you get are “possibles” regarding all aspects of it – possible causes, possible treatments which might help you recover, possible chances of full recovery! I chickened out and she gave me another week to think about it. Nothing scares me more than the thought of getting GBS again. I know they say getting a fatal tropical disease is a lot worse than getting GBS because at least most people survive GBS but if there’s anything that can be done to avoid triggering it again then I’ll do it.(once was enough!) I have read so many contradictory things online. I still haven’t made my mind up on what to do but I’ve just found an article which has given me hope and it is from a good source. [url][/url]
      It suggests that chances of recurrence of GBS following immunisations is probably less than 3.5% and those people only had mild GBS symptoms which didn’t require hospitlisation or treatment. That is reassuring to know. I might just have the typhoid shot as the nurse thinks I’m probably pretty well covered for the others from childhood and could get away with it (?!).
      Anyhow, sorry this is such a long post but I hope you find the link useful or interesting.

    • Anonymous
      October 17, 2006 at 11:10 am

      You are not going to believe how stupid I have been. When we have talked of vaccines and whether or not to get them, I only thought about flu vaccines, never really gave it a thought in regards to tetunus or any other. Just always had them and now I am seriously going to rethink those too. My mind, what a terrible thing to waste.

    • Anonymous
      October 17, 2006 at 1:30 pm

      I am on the other side of this argument:

      “My mind, what a terrible thing to use.” … or maybe that was my description of my employees lately … oh well … either/or

    • Anonymous
      October 18, 2006 at 7:25 am

      Just to add something else, my neurologist has just told me that the study I posted the link to on the last page is probably the most definitive article on the subject, even though it is open to many scientific criticisms (questionnaire survey, audit methodology, subjective symptom reporting in a ‘biassed’ group, retrospective). But it is the largest and most thorough. The documented risks in the survey probably exceed the actual risks, for the reason explained in the article.

    • Anonymous
      October 18, 2006 at 9:21 am

      Thanks Mindy for the info for your doc! Makes sense to me and I do understand the statistical issues and data corruptions, but I will still pass on all future vaccines!

    • Anonymous
      October 18, 2006 at 11:08 am

      Chances to get GBS a second time may be minimal, but what about getting GBS following CIDP? I definitely will not get a flu shot.

      I am convinced that one of the numerous vaccinations I received while in the Peace Corps in Thailand in 2001 triggered the CIDP. In addition to tetanus, hep A and B, japanese encephalitis, I had a bunch of others. Unfortunately, there hasn’t been sufficient research to establish a clear connection. Because of that the Department of Labor a few weeks ago rejected my claim and will not pay for treatments. I just have to bite the bullet and pay the deductable of my insurance plan.

    • Anonymous
      October 18, 2006 at 2:35 pm

      Norb, So sorry to hear about the Dept of Labor’s rejection. It is interesting as to how WE know through intuition what has happened to us and yet it is very frustrating that some will not believe us.
      Again so sorry.

    • Anonymous
      December 14, 2006 at 8:07 am

      Just an update!
      Apparently most cases of GBS develop within 2 weeks of the original infection (cold/flu/food poisoning/vaccination).
      While taking into account the reassuring evidence I mentioned earlier I’m not going to be cavalier with my attitude to having future vaccinations, and I will avoid the flu one.
      However, I can report that 9 weeks ago I had Hepatitus A vaccine, and triple vaccine diptheria, tetanus and polio booster in order to be safe on my travels in south-east Asia, and I had no side-effects or reaction, hooray!