June 15, 2014 at 5:46 pm #109988gslmMember
Finally after months of suffering and endless frustration I have a diagnosis. Just as my neuro and I suspected, CIDP caused by the flu shot I received last fall. Nothing surprising there.
Now I can be added to the long list of vaccine victims. I have lost the ability to do everything I love. Another life utterly ruined by a flu shot.
The only silver lining is I have kept the record of the flu shot. With strong support from 4 neurologists I should be able to get compensation from the vaccine court.
Only if any amount of money could make up my loss.
June 15, 2014 at 8:17 pm #109989
If you file a claim and are successful, that’s good. I think people with these disorders need all the financial assistance they can get. It does not follow, however, that the influenza vaccine should be made a scapegoat for CIDP and GBS generally. Compared to the many millions of flu shots given annually, the list of people who can associate an acquired peripheral neuropathy with a flu shot is actually quite short.
August 11, 2014 at 3:12 pm #110176gslmMember
A quick update. Vaccine fund filed. Now the long wait starts.
My local neuro said he has seen thousands of vaccines reactions, most are minor but some are severe such as CIDP and the severe ones are definitely grossly underreported for various reasons. My Mayo neuro after hearing my vaccine story said and I quote “it is truly surprising how often that happens”. I am lucky at least my neuro’s are not the rabid denial types.
So folks, be vigilent. If you suspect your neuropathy is caused by vaccine, follow up with the vaccine fund. They know. Or there wouldn’t be that fund.
Hope all of you have good results. And don’t let those who refused to acknowledge it to give you doubt and stop you. The fund is there because however they don’t want to admit it they know. Get everything you deserve.
August 17, 2014 at 8:34 pm #110207CideeMember
So sad to see your post gslm because I relate every word.
I was perfectly healthy, and happy. Until my gp pushed me to have 3 unnecessary vaccines on the same day. Now I have lost my life. Such a crime they did to us.
August 30, 2014 at 10:56 pm #110241jllcidpMember
Cidee, don’t feel sad. You are not alone – it happens to a lot of unsuspecting people. You know you can get compensation right? Have you heard of VICP? You can start from there. It is not as daunting as you may think.
In the meantime hope your treatment is working for you.
Hang in there!
April 26, 2015 at 7:33 am #110794ranger1787Participant
I was diagnosed with CIDP in Dec after experiencing tingling and numbness up to my knees in the spance of three days in early Nov of 2014. Surprisingly this was three weeks after getting my annual flu shot in Oct. Of 2014. I do not know if the flu shot was the cause or not but highly suspicious. Is there a way to make a correlation besides timing? It might help with the compensation fund procedings. Was feeling halfway normal after IVIg in Feb but the last four days have been miserable again.
April 26, 2015 at 3:55 pm #110800
Ranger, numerous studies, some of which are reported in this forum, have failed to find any causal relationship between vaccines of any type, and the influenza vaccines in particular, and GBS or CIDP. Many millions of people receive flu shots each year. If acquired peripheral neuropathies have no connection at all to vaccination, there will nevertheless be some people every year who develop their symptoms a few days to a few weeks after receiving the vaccination. There is no way to tell whether the vaccination actually triggered the disorder. GBS and CIDP tend to start during flu season, so there will naturally be some correlation whether or not there is any causation.
I had a serious case of CIDP although I had never had a flu shot in my life. Since my illness, I now get a flu shot every fall and have had no ill effects from it.
Even if it is possible that a few cases could be triggered by a flu shot, the most important factor is a person’s succeptibility to the disorder, which is not understood by medicaal science.
April 30, 2015 at 7:06 am #110819EricParticipant
I’m assuming I’m not the first to make this point but isn’t it possible (probable?) that the whole vaccine argument is backwards? Maybe the real culprit is a flawed immune system. I too had a flu shot about a month prior to getting GBS. I also had flu shots for at least the previous 10 years with no ill effects. But, prior to GBS I had shingles and lyme disease. So, sometimes my immune system worked and other times not. Oh yeah, I got GBS in October, which I believe is during the flu season.
June 2, 2016 at 10:46 pm #111528tstratton51Participant
I took the Hep. B vaccine at my job. After that the bottom of my feet went numb and so it began, CIDP.
June 24, 2017 at 7:56 pm #112897Karen6542Participant
My father, who was in dialysis, had to have a flu shot in order to be put on the transplant list (all his other vaccines were up to date). Not long after that, he began with the numbness. GBS was diagnosed at first, but when the symptoms worsened, and another neurologist saw him, CIDP was the verdict. he underwwent IVIG and the usual drug therapies, and was in a remission that allowed him to walk without a walker, even to go up short flights of stairs. Unfortunately, this did not last long, and before long, he was in a motorized wheelchair. He ended up in a hospital bed, at home, as my mother would not allow him to go into a nursing home. He died on January 28th, 2014 of aspiration pneumonia.
None of us knew of that you could get money if a flu shot was suspected of causing CIDP, which my dad’s neurologists strongly suspected. Although money was not an issue (God bless the UAW for getting him such wonderful retirement health benefits from General Motors! If you think unions are harming this country, think of how my dad’s quality of life would have been, had he been shuffled off to a nursing home as a welfare patient, where overworked aides and nurses would never have given him the quality treatment he was able to have with therapists, in home aides and nurses, specialists, the treatments they prescribed, and that wonderful motorized wheelchair), the money my mom could’ve received could’ve been donated for the care of someone less fortunate.
January 5, 2018 at 12:43 pm #113717Willis HammondParticipant
My daughter has been diagnosed with CIDP and after 5 IViG treatments she is in an acute Rehabilitation center. Her symptoms began to develop two months ago coincidentally after receiving this years flu vaccine. Our neurologist discounted this connection. When my daughter checked into the rehab. center the nurse told her she was the third patient with these symptoms that had come to the center in the past month. The other two reported onset of symptoms shortly after receiving the flu shot.
January 7, 2018 at 7:59 pm #113736rina1953Participant
I had the flu shot December 2014, march 2015 I was diagnosed with GPS, after having 4 relapses I was diagnosed with cidp 2016 and have been in a wheelchair since August 2016, I don’t have health insurance without any treatment i am getting weaker, I’m convinced that I got gbs from the flu shot, any advise what I should do.
March 23, 2018 at 10:12 am #114047ranger1787Participant
In 2014, approximately 2 weeks after getting the flu shot in Late October, I woke up with tingling and numbness in both legs up to the knee. It kept getting worse over the next few days. I was diagnosed very quickly with CIDP and started IVIG with in a month. It did not seem to have any effect, then I gradually started to see less tingling and numbness. It is now restricted to my feet with accompanying fatigue, and occasional other oddities. I applied for compensation through the Vaccine Injury Compensation Program and was able to get a settlement but it took two years and supplying all of my medical reports. There are several law firms that deal only with vaccine related injuries and they do not charge fees. Whether or not the vaccine caused the CIDP is still unknown and I have been told that research has not shown getting flu shots can reinjure you but I still do not get them and avoid hospitals and anybody who appears sick. I have also stopped eating inflammatory foods and started eating anti-inflammatory foods and exercising regularly and I remain stable. So far a positive outcome to a scarry circumstance
January 8, 2018 at 4:09 am #113739Jim-LAModerator
According to the GBS/CIDP Foundation Summer 2015 newsletter “…While its true that that the Flu vaccine can raise your GBS risk …”. The Centers for Disease Control (CDC) website states “… they may develop GBS in the days or weeks after getting a vaccination.”
The US Department of Health and Human Services created the National Vaccine Injury Compensation Program (VICP) in recognition that, in part, Flu shots can cause GBS and related auto-immune disease.
The CDC helped found the Vaccine Injury Compensation Trust Fund to provide compensation for those injured. The program is actively administered by the US Federal Court of Claims.
The studies that are cited about getting GBS from Flu shots deal with the incidence of triggering GBS for the first time. That incidence is very low. However, there are essentially no studies that deal with the incidence of RE-triggering GBS in patients that have already had the disease. I believe the risk of re-triggering GBS is quite a bit higher.
The bottom line is that a flu shot can trigger the immune system into producing antibodies that attack “self”. “Self” usually refers to the insulation surrounding the nerves called Myelin. When Myelin is attacked some of the nerves short out and we experience many weird symptoms. The condition can be responsible for various forms of peripheral or poly neuropathies (PN), including GBS.
My neuro recommended not getting Flu shots post GBS/CIDP. Nobody knows with certainty that a flu shot will or will not trigger a new episode of the disease for them. My feeling is that the Flu is a lesser disease and easier to treat than GBS/CIDP. Getting the flu and being miserable for a few weeks pales in comparison to getting a recurrence of GBS/CIDP.
In my case, the risk of reactivating my CIDP, now in remission, was not warranted to me. I think it is prudent not to take the risk. However, not everyone will feel the same and you must make your own decision.
There are several attorneys that specialize in VICP related claims. Here is one possibility: http://www.vaccine-law.com/default.htm
January 11, 2018 at 12:22 pm #113753
Jim, I recognize that you have done a great deal to become well-informed on GBS, but the information you give here is not accurate. It is true that GBS after a vaccination for influenze is now included in the vaccine injury compensation program (a recent addition, I think), but this does not constitute recognition that there is a causal relationship between the vaccine and GBS. The position of the Centers for Disease Control and Prevention (CDC) is pretty much what is has always been: that the cause of a particular case of GBS generally cannot be determined (except in cases of outbreaks due to Campylobacter jejuni), and that if there is a causal relationship with the flu vaccine, it is too low to measure. The risk of getting GBS is the same regardless of vaccination. Here is a link to the CDC on the subject:
The purpose of the vaccine compensation program is threefold: 1. to encourage reporting of possible harm caused by vaccines (whether actual or not); 2. to promote vaccination; 3. to avoid litigation. It is a no-fault insurance program. For listed circumstances, it is not necessary to prove that a causal relationship exists.
The National Academy of Medicine (formerly Institute of Medicine) periodically reviews research on the effects of vaccines. There position on this question has not changed. Their conclusions are:
Conclusion 6.10: The evidence is inadequate to accept or reject a causal relationship between influenza vaccine and GBS.
Conclusion 6.11: The evidence is inadequate to accept or reject a causal relationship between influenza vaccine and CIDP.
I’m glad that it is now easier for those afflicted with GBS to be compensated under VAERS — any way that people can get financial help with this expensive disease is good — but I object to misinformation which tends to discourage people from getting vaccinated when appropriate. We used to have a few hysterical anti-vaccination types on this website attacking vaccines of all kinds, and I am happy that they seem to have gone into hiding.
Influenza is a dangerous disease. This season is an especially bad one. In California alone, 27 people under age 65 have died from influenza-related disease. This is at least five times the usual incidence. I personally have been vaccinated for seasonal influenza every year since my illness (seven years ago) without ill effect. I do this for my own protection, but also because I visit hospitals and nursing homes and want to avoid carrying the virus to vulnerable people, and because I know from the extensive research on the subject that the risk of GBS is not increased by vaccination.
September 2, 2018 at 2:44 pm #114336Glenn Duerr Glenn DuerrParticipant
Here’s a twist on the vaccine avenue of developing GBS/CIDP. In 2014 I had a bad stomach infection (probably food poisoning per my neurologist at Duke) and went to CVS to fill an Rx for Cipro and Flagyl since the PA at Urgent Care thought I had diverticulitis (I didn’t). I noticed they were giving shingles vaccines and, since I didn’t have a fever, I was OK’ed for inoculation. I was out with GBS within a few days, but it took 5 months to Dx it. Luckily, I have a mild form with persistent stomach issues, fatigue, vertigo, and peripheral neuropathy. I filed for the flu court, but was told shingles are not “yet” included. I say “yet” because I found there are others that contracted GBS this way. Just not enough to make a good case. I my case it could have been the stomach issue or the strong antibiotics as well. Every year I am torn whether to get a flu shot since I am asthmatic. I have 6 docs, 3 say “yes” and 3 say “no”. I guess I need a tie breaker.
September 3, 2018 at 11:12 pm #114338
Glenn, it is more likely your case was triggered by your infection than by the shingles vaccine. No causative relation between GBS and the shongles vaccine has been established. Correlation in a few cases is not evidence of causation. People were getting GBS long before there was a shingles vaccine.
As for the influenza vaccine, I had never had one in my life before developing CIDP. Now I get one every year.
October 6, 2018 at 2:29 pm #116106edithParticipant
GH I’m glad the flu vaccine does not cause an exacerbation of your CIDP, but youshould fear giving advice one way or another to individuals regarding vaccines. It’s generally accepted that GBS can be triggered by vaccines even though the mechanism by which some people develop GBS or CIDP in response to vaccines has yet to be elucidated. This is why the same government which neither confirms nor denies a mechanism of causation, nevertheless compensates people injured by vaccines. In the NIH report Adverse Events, you will find a case of measles encephalopathy which was triggered multiple times in the same individual as the person completed a series of measles vaccinations. The first two times the individual was told it was merely coincidence the encephalopathy began shortly after administration of the measles vaccine. So this individual continued with the vaccine series after recovery. The final time the individual received the measles vaccine, and developed encephalopathy requiring ICU admission, a doctor with a high degree of suspicion biopsied the brain of the then comatosed individual and through Polymerase Chain Reaction testing identified the strain of measles causing the encephalopathy. The encephalopathy was not caused by a wild type of measles but the strains used in the vaccine the patient was given. Even in this case where there was a smoking gun the report uses the same equivocal language that government can neither confirm nor deny the vaccine caused this case of measles encephalopathy. Clearly in this case we can see that the denial of causality flies in the face of the science. If this victim of measles encephalopathy, caused by vaccine strains that do not exist in the wild, cannot get a government admission of cause and effect, people with GBS and CIDP from vaccines should not hold their breath waiting for a government admission of cause and effect…even if science one day elucidates the mechanism. This language is written for reasons of liability and for public health goals, not to protect individuals who have an autoimmune disease. Each individual needs to weigh the risk versus benefit of each vaccine, the risks of acquiring the disease itself, and the treatments available should the disease be acquired. People who do not have devastating autoimmune diseases can provide herd immunity to those who do.
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