Since my GBS was not related to a flu shot, I’m leaning on taking the vaccine. What do you all think about taking the vaccine when its available?
I don’t think I will be taking the COVID vaccine. I have CIDP and got it right after I got the flu vaccine. I can see your point but just be careful and wait a little while after it has been out for a while
Here it is. Dr Anthony Fauci recommends that people with GBS NOT take the vaccine.
However, one group of people who shouldn’t get the vaccine, are those who suffer from Guillain-Barre syndrome, a “reaction, which is a rare neurological reaction to either influenza or the vaccine for influenza,” he explained. “We recommend that those people do not get vaccinated because you might trigger a similar, serious response.” *
**He did emphasize that not many people fall into this category. “You got to remember, that number of people is very, very small,” he said.
I am writing on behalf of my 72 year old sister. She contracted CIDP when she was about 13, almost assuredly a direct result of a measles vaccine. She has never taken a vaccine for any other virus. Her neurologist for the past 20 years is trying to assure her that the COVID19 virus is perfectly safe and that she could be at amplified risk should she contract the virus. Being such a close relative of GB, and given the recent advice of Fauci regarding GB, I am very concerned about her submitting to the COVID19 VAX. I try to give her as much information as possible without making strong recommendations either way, and now she is apparently leaning toward getting the C-19 VAX.
Based on the Dr. Fauci statement, I wrote to my neurologist. He replied with comments and a very informative link to the GBS|CIDP Foundation International. Here is his reply:
GBS and the COVID vaccine
Happy New Year and Thank you for bringing up this interesting discussion.
Dr Fauci made a big mistake by saying so and it is disappointing.
Following Fauci’s statement, a number of neuromuscular experts sent an open letter to Fauci. Please see their letter below:
Unless there is a clear allergic reaction to the vaccine, people should get the vaccine. Thousands of people got COVID-19 vaccine and there has been no concern yet about GBS. The GBS is also different from CIDP although there are rapid onset variants of CIDP that in the beginning are hard to differentiate from GBS.
Assistant Clinical Professor
UCLA Department of Neurology
I received the flu vaccine 10 years ago and had at least 10 episodes of laryngospasm 10 days after the vaccine. I am scheduled for COVID vaccine. My neurologist said that people with CIDP have funny reactions to vaccines. What is your opinion?
I experienced what was thought to be GBS following a TDAP vaccine. I have not gotten the flu shot since. My neurologist did not recommend it. However, since the Pfizer Covid vaccine is different , my primary doctor recommends it. I am reluctant not because of the vaccine but my potential reaction to it. I don’t know if I could live through that again. It was rough and I have never been the same. I know that Covid has the potential to cause GBS and I definitely do not want Covid but I am not sure what to do. Once my immune system gets triggered I may not get the help that I need. Previously, I did not get a diagnosis so I did not receive treatment. I suffered in tremendous pain from ascending nerve destruction. I had a normal EMG and never lost my reflexes. I actually had hyperreflexia which didn’t make sense. I could neither walk nor work for months and I was a marathon runner. I would love to hear your experience with the vaccine and additional thoughts on taking the vaccine. Thanks!