re: An Open Letter to Dr. A.S. Fauci, Director NIAID, NIH

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    • #117822
      buckthorn
      Participant

      Well, this is sort of what I feared. Dr. Fauci makes a statement advising GBS patients, and particularly ones who got GBS as a reaction to the flu vaccine, to avoid the COVID vaccine. The GBS Foundation says — correctly, I expect — there is no data to back up such a recommendation. But now the small number of people in this category, which includes yours truly, are already receiving mixed signals from the medical community regarding the vaccine(s). I can’t say I’m surprised, given the small amount of data available. I was not planning to seriously consider getting the vaccine for perhaps another 4-6 months anyway. Which leaves (or will leave) us between the rock of contracting COVID-19 and the hard place of possibly experiencing a relapse or another GBS reaction if we do get the vaccine. I know this is a pretty quiet board, but I wonder what others think about this.

    • #117823
      Katherine Burroughs
      Participant

      I agree. My doctors’ best guess is my GBS was caused by taking the Humira drug, and several months later I had a significant “flare” after having a routine tetanus shot. I also had a bad relapse/ flare about a year later, and unfortunately I have been left permanently disabled by my residual symptoms. My doctors view my autoimmune system as “hot wired” and therefore will not clear me for the Covid vaccine, or any other vaccine at least at this point. I would very much like to have the vaccine so am hoping to re-visit this in a few months when we have more data. I am concerned though that not unlike the flu vaccine, the vaccine manufactures could exclude GBS people from receiving it.

    • #117825
      jon swanson
      Participant

      Way to go Dr. Fauci. Now I have to remember to NOT mention to anyone I have GBS to get the covid flue shot. The numbnutz should clarify his statement after reading the “open letter” from the real GBS doctors.

    • #117826
      buckthorn
      Participant

      Let’s not get into name-calling, please. In defense of Dr. Fauci, first, the guy has been doing interviews nonstop for 6-7 months, trying to explain medical commonsense to people in the midst of horrible mis- and dis-information about COVID emanating nonstop from the White House. He just turned 80, and he must be exhausted. God bless the man. Second, I think that his statement was not unreasonable, perhaps erring on the side of caution even when there is insufficient data to draw any firm conclusions one way or another. Maybe he will reconsider his position after having a chance to think about it. The GBS Foundation’s position is equally reasonable, although the absence of data may not be the most solid basis for concluding that the vaccine is safe for GBS patients. We just don’t know one way or the other, do we?

    • #117827
      rcg03040
      Participant

      I think we all have to do a reasonable risk assessment with our healthcare provider… My GBS onset was within six weeks of my receiving my flu shot in 2010. I don’t have any evidence that the shot caused GBS, but the recommendation from the CDC is that I not have the flu shot because they were so close together. I don’t know what to do about the Covid vaccine. I will talk with my healthcare provider and reach out to my neurology team if I need to, but I think that what Dr. Fauci said makes a great deal of sense in my situation.

    • #117830
      Fred Martin
      Participant

      In september of 2017 I got GBS while traveling in Spain. Within days I was completely paralyzed and diagnosed with AMAN. It was determined that I got this from a Bacteria. I got my first flu shot a few months ago; no side affects. I am planning on getting the covid-19 shot as soon as it’s available. By the way I was 70 when I got this and I am only back to 60% of normal. ( Who needs working hands and lower legs anyway!)

    • #117831
      jon swanson
      Participant

      Fauci was the same idiot that recommended NOT wearing face masks in the spring. Anybody remember that? He should be fired!

    • #117832
      buckthorn
      Participant

      Engaging in misleading and ad hominem attacks against a dedicated public servant just doesn’t add any value to the conversation. It also happens to be off-topic.

    • #117836
      jon swanson
      Participant

      Well you can continue to live in fear, or you can get the covid vaccine, it’s as simple as that. I have chosen to not be afraid. Plus there are more actual GBS doctors telling me to get the shot rather than one misled public servant.

    • #117837
      Hedley LaMarr
      Participant

      In 1978 nearly two hundred people contracted GBS after getting a flu shot. My thought is that the batch of vaccines were faulty. It happened with the polio vaccine as well. A few dozen people died and they tracked the vaccine back to a producer that made a bad batch. They resumed the program after that and everyone got the polio vaccine. I had GBS in 2009 which followed a bout with the flu. My flu shot was in mid-October 2008 and I got GBS in February (6th)of 2009. The gap in time was too big to blame the flu hot. Nonetheless, I avoided vaccines for 10 years. This year I took both the flu shot and the pneumonia shots. Dr. Fauci was the one who said that Covid was not coming here! He flipped on wearing masks and made other dumb predictions. I just took two vaccines and I’m still standing. I will take the Covid vaccine. I notice the GBS Foundation is fence sitting. They’re no help.

      • #117839
        Hedley LaMarr
        Participant

        The Foundation is not fence sitting. I just read their open letter to Dr. Fauci. It refutes his advice and rightly so. This is the same Fauci who said that Covid was not coming here. I apologize to the Foundation. But the letter was not easy to find. It should be bold and up front.

    • #117838
      buckthorn
      Participant

      Well, I’m beginning to regret starting this thread. It’s apparent that some people suffer from unrealistic expectations, and have a mistaken view that medical experts exist solely to serve their personal needs. Anything less than that makes the latter subject to appallingly flippant — and unfair — criticism. Science depends on data and evidence. You can’t expect anyone to make flawless predictions or express certainty in their conclusions when data and evidence are scarce. That’s one of the things that makes being a GBS patient so difficult; there is much that remains unknown. But lashing out at medical experts is not going to improve your situation, except perhaps to make you feel good because you’re “brave” enough to stand up to the “big shots”.

      And I guess I had unrealistic expectations that participants in this forum would show some decorum — *in spite of* their often difficult and frustrating health situations. For that, I apologize.

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