Flu Shots

    • Anonymous
      January 12, 2011 at 4:38 pm

      [FONT=”Georgia”][SIZE=”2″][COLOR=”Navy”]I haven’t been around for awhile. I’m sure I’ve missed some good info.

      I just came from my new Internal Med doc. A hello-get to know you sort of thing. She asked if I’d had my flu shot. No, I hadn’t. Did I want one? Well, why not.

      The nurse came back with a form to check off … about 3 items that would say “STOP”. One was GB. Hmmm? So I said, well, okay, I have CIDP which is more-or-less the chronic GB form, but it’s only a small problem now and very stable.

      No flu shot for me. This large multi-specialty clinic has come down against flu shots for people like us.

      Very interesting.[/COLOR][/SIZE][/FONT]

    • Anonymous
      January 12, 2011 at 4:48 pm

      I have no intention of getting a flu shot ever again.

      I’d rather be miserable for a few days or a week with the flu than for months because a flu shot triggered a regression of my CIDP.

      I know the odds are probably long that would happen, but I’m not willing to take that chance.

    • January 12, 2011 at 5:05 pm

      Have been treated monthly for CIDP 16 & 1/2 years. Have had the flu shot every year. NOTE. At the Symposium in November the neurologists all said “get the flu shot”. In essence, there is little or no evidence of GBS or CIDP caused by the flu shot. Flue will kill you.

    • Anonymous
      January 12, 2011 at 5:27 pm

      [FONT=”Georgia”][SIZE=”2″][COLOR=”Navy”]Hi, Bill.

      I’ve had flu shots, off and on, over the years. I know there’s been a back and forth about them and folks like us, but I’ve not had problems.

      I think that’s why I was taken aback by the checkbox on the flu shot form.


    • GAT
      January 12, 2011 at 7:01 pm

      In 1976 the military was given Swine flu shot plus the regular flu shot. I still contend they used us to experiment. As you know there were several cases of GB and the next year it was stopped. With my military I have not missed a flu shot for 40 years and didn’t want to stop. This year they mixed H1N1 with the regular medicine. I was concerned and I ask both my Neuroligist and Hemotoligist if they thought it safe. They were of the opinion that advances have been made and recommended to take it. I did not have a problem and will continue to take it. It however is a difficult choice each have to make.

    • Anonymous
      January 12, 2011 at 7:50 pm


      Every fall Emily’s neuro reminds me to not get her the flu shot.


    • Anonymous
      January 12, 2011 at 8:59 pm


      I am not sure where you got your information but you are clearly wrong about GB not being caused by a flu shot . I have had several doctors who have told me mine was clearly from my vaccine . I also work for a huge PCP practice and I will tell you that only 2 out of 12 doctors took the shot for reasons such as this . Please be careful of being matter of fact about the consequences of the flu shot . It doesn’t ALWAYS cause GBS but in some people it does !
      Best of Luck ,

    • January 13, 2011 at 11:42 am


      I could be wrong. For me that would not be unusual. At the symposium in Nov. there was a 1 hour presentation on the flu shot. As I remember it the presenters said there was no reliable evidence of the flu shot causing GB. There was an uptick in one year in the 80’s where a bad batch of the shot was blamed for GB but since then there has been little or no evidence. To a person all of the GB/CIDP experts at the symposium said “get the flu shot”.

      Having said all these I will admit that might memory might be faulty. Maybe someone out there took better notes than I did and can respond.

      I think the foundation website has a recording of that 1 hour and you might want to look it up.


    • Anonymous
      January 13, 2011 at 3:48 pm

      Both my PCP and Neuro have suggested I avoid both the flu and pneumonia vaccines. A couple of weeks after I was discharged, I was phone interviewed with state/county center for disease control. Almost all questions were directed toward what caused my GBS. I was asked mostly about my history of vaccines. I wonder if there was no concern, why this phone interview? :confused:

    • Anonymous
      January 14, 2011 at 1:08 am

      When I was initially seen by a Neurologist at the University of Michigan Hospital in Ann Arbor- I was told, “We’ve been treating quite a few presenting with these same symptoms following the flu shot……” I was questioned precisely about any flu shots—which I hadn’t received. But I have a question….Why is it that many or most of our flu shots are made in China? Aren’t we capable of making our own in the U.S.? I just don’t get it. Or is it we just can’t make it fast enough?

    • Anonymous
      January 14, 2011 at 12:50 pm

      [FONT=”Georgia”][SIZE=”2″][COLOR=”Navy”]according to the UN and WHO, these are the manufacturers of flu shots this year:[/COLOR][/SIZE][/FONT]

      Influenza (Seasonal)
      Country of Manufacture:
      Presentation: 10 dose vial

      Influenza (Seasonal)
      Novartis Vaccines and Diagnostics
      Country of Manufacture:
      United Kingdom of Great Britain and Northern Ireland
      Presentation: 10 dose vial

      Influenza (Seasonal)
      Sanofi Pasteur
      Country of Manufacture:
      United States of America
      Presentation:10 dose vial

    • Anonymous
      January 14, 2011 at 3:06 pm

      I have posted on here several times before, but I got mild GBS which has now turned into fibro/CFS and arthritis from the H1N1 flu shot last year. I had NO problems before this. Now I feel sick every day at 39 years old and have multiple issues, all while holding down a full time job and taking care of 2 small kids. I will NEVER get a flu shot again, nor will my family, most likely. It has ruined my life and health and it is NOT worth it in my opinion, knowing what I know now. Take it at your own risk….

    • January 15, 2011 at 11:07 am

      Hi Jessica,

      Sorry to hear about all of your medical problems. I hope that you and your physicians bring you to better health.

      As one who has no idea of what caused his CIDP I wonder if you would take the time to tell me how you and your physicians determined that the flu shot caused your physical problems.


Flu Shots

    • Anonymous
      August 7, 2009 at 9:43 am

      Good morning everyone.
      Well it is that time again.(FLU SHOTS)and this year they are talking about adding 2 more shots (SWIN FLU)The last time in 1976 when they came out with a SWINE FLU shot they had to stop it as they were getting so many getting GBS.
      Now they are wanting to give 2 shots that are not totally tested and also have said it is not being made useing raw eggs but they show them making it with EGGS.
      I tell everyone I can what I got from the FLU shot. (GBS)I worked for a top hospital and almost 98% of the doctors and staff refused to take this shot.If your family doctor is honest he will tell you not to take it.
      The flu shot this year is for last years flu and haveing the shot does not protect you from a new flu this year.
      I suggest everyone reading this and taking the shot think long and hard about what can happen or reoccur bringing back (GBS/CIDP)PLEASE pass this on to your friends and family.Also if you are in your 50s-100 your chance for getting the swine flu is very low. May Gods blessing be with all that take the FLU SHOTS (Lakoda)

    • Anonymous
      August 7, 2009 at 2:37 pm

      My opinion is that I have to agree with the above post, but getting the flu shot is controversial and “HAS” to be an individual decision. I don’t know if the flu shot caused my CIDP, but I am convinced that I would not be in a wheelchair if I had enough information then to make the decision to NOT have a flu shot. I will never have a flu shot.

    • Anonymous
      August 8, 2009 at 1:50 am

      It’s my understanding that if someone has GBS/CIDP they can’t ever get a flu shot.

    • August 8, 2009 at 11:58 am

      I heard that the swine flu shot has not even been tested on humans. And that it consists of three injections…one turns OFF your immune system, the next IS the swine flu, and the 3rd is to turn ON your immune system. This is known to cause an overload and death yet we may be FORCED to take it…healthy adults, children, pregnant women, and health workers. Now do the children of GBS patients get to opt out??

      this is the only version of the story I can find, but we heard it on FOX news.

      AND I read that Gardasil has been linked to cases of juvenile ALS!!! WTH!?! They don’t list that in the pamphlets. VERY scary.

    • Anonymous
      August 8, 2009 at 1:47 pm

      Swine flu vaccination studies have already started. They suspect that it will take 2 injections, vs 1. the 3rd shot you are hearing about is the regular seasonal flu vaccine.
      This is the first time I have heard that people will be forced to take it. There is no way they can even manufacture enough vaccinations for everyone, what little they can supply will be used for just a fraction of the world population. That combined with the fact we live in a free society pretty much says to me that forcing will be impossible.

      In case people want to take a flu shot, perhaps check into a half dosage. Studies have shown that it is just as effective as a full dose in those under 50, children and women of all ages. Google if interested.

    • Anonymous
      August 8, 2009 at 2:53 pm

      I recently attended a lecture by a neurologist on CIDP and GBS who was pretty adamant that it is better to get the flu shot than not-the chances of getting GBS from the shot are remote but getting the flu can hurt those of us who are already weakened by nerve damage. My own doc doesn’t want me to get it, but I am 63 and the swine flu makes me nervous so I haven’t made up my mind. If anybody does get it let us know. Jeff

    • Anonymous
      August 8, 2009 at 11:23 pm

      my diagnosing neurologist said never get the flu shot. My family doctor and a walk in clinic would not give the flu shot to people with gbs and cidp, but my treating neurologist said better to get a flu shot then have a severe case of flu.

      I’d only say that the flu shot I had in 1996 didn’t cause my CIDP because I don’t know how to prove it, but the flu shot in 1997 put me in a wheelchair. I chose not to ever have a flu shot again.

      Each of us should talk to our doctors, research and then decide.

    • Anonymous
      August 9, 2009 at 1:10 pm

      I believe Emily had the start of CIDP before receiving her vaccinations but after getting them she did start to get worse. We thought she had growing pains & she got her first ever flu shot. 3 weeks later she was in the hospital, could barely walk, couldn’t run, couldn’t feed herself…you know the drill.

      I believe the flu shot is what caused her cranial nerve involvement & progressed her CIDP more quickly than it would have if she didn’t get it.

      When getting the regular flu shot patients have to sign a waiver. GBS is mentioned in that waiver saying that if you’ve ever had GBS you cannot get the flu shot.

      My mother told me this a few years ago after her flu shot.

      Personally, I would NEVER give a flu shot to Emily…EVER. I will never get one myself either. I think it’s easier to protect yourself against the flu. Just wash your hands frequently, stay out of small public spaces (like buses, subways, etc), don’t wear your shoes in the house, clean your shopping cart before using it, etc.

      I knew a woman who was a teacher in Japan & S. Korea for years. They have high incidents of flu outbreaks there. She said teachers would wear face masks & gloves to protect themselves. They would also rinse their mouths out with peroxide (not sure if that would help but that’s what they do over there). The woman I knew never once got any flu & she was in a classroom with 60 kids at a time during peak flu season.

      If you chose to get the flu shot you have no control over what happens to your body. You can drastically cut back on your exposures to any flu. I think we’ll take our chances with the flu & avoid any flu shot at all costs. (Same goes for Gardasil…don’t even get me started on that vaccine.)


    • Anonymous
      August 9, 2009 at 1:13 pm

      I find it interesting that the government thinks it can tell parents that flu shots are mandatory. Just the other day on the news they reported that kids who get the flu only need to stay home from school for 24 hours or until the fever breaks-instead of a full week. I will not give up my rights as a parent to any government, I will not vaccs my kids, and I will treat my kids like humans and keep them home as long as I deem necessary. I feel it is easier to call the dr at the first sign of the flu and to get on meds then to take such a big risk with my kids health and mine by getting the vaccs. It is very much an individual decision.
      As for the hpv vac, there are many reports that it is unsafe, it can also cause gbs, it has caused paralysis in girls. All this information is on the cdc site buried where it is hard to find-I found it one day while looking for something else. I won’t allow it to be given to my daughter. Our pcp won’t even bring it up to me.

    • Anonymous
      August 9, 2009 at 2:53 pm

      what about other vaccines. I keep reading about the relationship with hepatitis and cidp. what about the hepatitis vaccinations? I am forced to take the hep vaccination for work. I still have to take the second in the series. So what about other vaccinations? I wouldnt take the vaccination for flu. my monster immune system laughs at the flu !! lol.

    • Anonymous
      August 9, 2009 at 3:48 pm

      I worked for one of the top 10 hospitals and 98% of the staff and doctors refused the flu shot. A doctor once said (if it comes through an egg walk away)They said the swine flu shot doesn’t use eggs yet they show it being tested in eggs.
      In 1976 when they came out with a swine flu shot after someone got swine flu they stopped it instanley when the rate of GBS cases went wild.The Goverment denied that was the reason.
      NO goverment or president or CDC will force me to take ANY shot that will do to me what a flu shot did 3 years ago with GBS. My family doctor does not mention the flu shot. I had a neuroligist say to me. I would rather have you in ICU with the flu than GBS.
      As Kelly mention WASH YOUR HANDS. I carry hand wash in my car and even getting the morning paper I wash my hands.Stop and think.The one place that has more germs than anyone realizes is YOUR DOCTORS OFFICE AND EXAM ROOMS.My cats are safer than we are going to the vet. The exam room is santized after every visit.If you are someplace where someone is sneezing or coughing leave.It is coming to the time that WE have to think for ourselves and stop trusting or relying on doctors.Remember WASH AND WASH AND WASH (Lakoda)

    • Anonymous
      August 9, 2009 at 4:26 pm

      Hi, Jeff,
      Wonder if the doctor giving the lecture was $5,000 or $50,000 adamant for us to get it?? There are too many of them getting paid by the pharmaceutical companies. I think that they will only force people to get it if there are not enough people willingly using up their supplies. When the supplies run out, then they will make up a story say that the swine flu is under control. There is a website by Dr. Mercola who explains what they put in the vaccines. Squalene is added to upset the immune system so it reacts more to the added viruses. In this way, the vaccine works faster. I think Squalene is from olive oil, but not good for injection into the body.
      I think we ought to make room for all the newbies that are going to be coming into our group if they force people to get the immunizations. Perhaps that is the one blessing of having GBS…they are not supposed to force us to get the shots. Some of the news shows should interview people with GBS who got it from the shots…but you know the powerful pharmaceutical companies won’t allow it. There is a book I want to read called MURDER by INJECTION…..nonfiction….about who is really controlling the drug companies.
      So let’s follow Nancy Reagan’s slogan Just say NO…..

    • August 9, 2009 at 11:05 pm

      there is a higher rate of recovery with no problems from swine flu than regular flu. Most get a slight case.

      I agree about the vaccs….if i had known what do now, my kids never ever would have had shots! I have never had a serious case of the flu, never had a shot. My kids, same thing. I havent heard anything about the hep vacc…but have heard in the ads that the meningitis vacc can cause GBS. Cant risk my kids having an autoimmune thing crop up since their dad and I both have autoimmune problems. He had Ulcerative Colitis that almost killed him and me, well GBS changed my life.

    • Anonymous
      August 16, 2009 at 4:34 pm

      We need to keep putting the word out on the flu shots and the swine flu. The Swine Flu is untested and the Gov is behind it. As mention in another post use religion to not taking the shot. As mention in 1976 the death rate from the shot and GBS cases out did all deaths for the year from the normal flu. (Lakoda)

Flu Shots?????

    • Anonymous
      October 12, 2008 at 12:18 pm

      I noticed for the first time (it was probably there before, but I never noticed) that when filling out a form for a flu shot, there was a question “Have you ever had GBS?” Is there still a concern about this? Can anyone tell me for sure if a GBS patient should or should not get a flu shot?

    • Anonymous
      October 12, 2008 at 1:44 pm

      Yes, i do believe there is concern. I will not be getting a flu shot ever again and neither will my kids!

    • Anonymous
      October 12, 2008 at 4:58 pm

      Thanks for your response. My case was milder than yours as i was never on a respirator or paralyzed, just severely weakened. I came down with GBS Memorial Day weekend ’08, was in the hospital for a week and rehab for 2 weeks. I am walking unassisted but have very little feeling from the balls of both feet to my toes, a marked weakness in my right shoulder, and numbness in my fingertips. One of my doctors said there should be no problem with the flu shot, but I became concerned when I saw the “have you ever had GBS?”question.

    • Anonymous
      November 17, 2008 at 6:04 pm

      both of my neurologists told me to get the flu shot

    • Anonymous
      November 17, 2008 at 11:28 pm

      I am not getting on this year. On supressent drugs and it could cause me problems. Glad too for I do not trust them! Hugs
      linda h

    • Anonymous
      November 20, 2008 at 2:35 pm

      I would not get a flu shot whether I had had GBS or not. If you want to have your eyes opened, go to Dr. Mercola’s website and find out about them. I personally think it is a money maker for the pharmaceutical companies and they use scare tactics to get us to get them. Plus they contain mercury. I wonder if we were not healthier years ago before they started all the new medications and tests.

    • November 20, 2008 at 7:15 pm

      This is a personal choice, I choose no. However, at the symposium in Chicago, the vote was in my opinion split. There was a definite answer for the flu shot for those who got gbs from the flu shot, NO…… On the other hand, if you have cidp, and are on immunosuppressants, a senior or other compromising issues, you should get the flu shot. I personally asked about the fact that literature suggests that if on ivig, one should wait 6 months and be ivig free before getting immunizations. They really did not give a concrete answer on that, there was discussion amongst them and they did give a time, I do not know how long, but it was relativeley short. I want to say 30 days, but not sure. One person asked if the panel got the flu shot, a little more than half said yes, though some said it was mandated by their hospital leading me to believe they may have declined if given the option (my opinion) The others did not. Gee I wonder why? Tough choice. I guess it all comes down to your general health, if it is compromised, if you got gbs from the flu shot and if you are on ivig? Wow that really helped!! NOT!!!
      Dawn Kevies mom

    • November 20, 2008 at 8:58 pm

      I was told by my brother that the form for the flu shot, referrenced something to GBS. I asked my Neurologist and had said he was glad that I asked, “he said, no”. In fact two days prior to my visit he saw a new patient that he diagnosed with GBS. She had just has a flu shot recently. Isn’t that something?

Flu Shots

    • Anonymous
      October 9, 2007 at 12:39 pm

      To everyone.remeber the flu shots are out and they are being pushed. PLEASE PLEASE let your love ones and friends and others know what can happen from this shot. Also the shot is for last years flu and it has been proven that it will not lesson the effect of a new flu this year. The sad part is the eldery are the ones being pushed for this dangerous shot.REMEMBER many of us got GBS from this shot. I would love to see it banned.(Steve)

    • Anonymous
      October 9, 2007 at 8:29 pm

      ditto steve! take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 10, 2007 at 7:51 pm

      [B]Ditto for me too[/B]

    • Anonymous
      October 10, 2007 at 11:32 pm

      I would never get a flu shot nor would I allow my kid to. I’d rather him get a little sick that to go through GBS.

    • Anonymous
      October 11, 2007 at 5:23 pm

      Good sentiments Steve! Unfortunately there are a few people on the UK Forum who think that the American forum is far too ….. i cant think of the word she used, but something like …. alarmist or neurotic or too excitable (something like that) specially about the way we feel about flu shots.

    • Anonymous
      October 14, 2007 at 6:30 pm

      I too believe that getting the flu shot is what gave me gbs. I never thought being immunized would be such a bad thing. I know it’s that time of the year again and I will not be talked into one this year

    • Anonymous
      October 16, 2007 at 2:35 pm

      I am told that the flu shot is a dead vaccine and that the risk of getting flu outweighs the risk of contracting GBS (I had it in 1990). It is something I will check with my primary care physician. We should all check with our own doctors/neurologists.

    • Anonymous
      October 17, 2007 at 9:45 am


      I believe that having the flu shot is a very individual decision. Unfortunately most doctors and even neurologists just dont know enough about GBS/CIDP to make an informed decision regarding this. It really is a decicion that needs research if one is worried about it. I personally dont get the vaccine for myself or my family simply because it doesnt offer the ‘right’ protection

    • Anonymous
      October 22, 2007 at 9:11 am

      One of the first things my neurologist told me after I was released from the hospital is that I should NEVER get the flu shot ever again. I have also heard that tetanus and meningitis shots are not normally advised for GBS patients.

      Knowing what I do now, I will never get a flu shot, and I will not permit my children to receive them either as long as they are minors under my care. My mom also said that everything she’s learned because of my struggle with GBS has made her plan to never get a flu shot again either. Ditto for my husband.

      It does seem like these shots are being pushed very hard this year. I see posters, e-mails, ads, etc. everywhere! And my grandmother actually called and told me I should get a flu shot so that I wouldn’t get sick this winter, because she was worried about me having a relapse of GBS if I got the flu. LOL!

      Yeah, clearly I’m not a fan.