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Sukie Crandall's avatar

I had too strong a RESPONSE (rather than a reaction) to one of the CoVID-19 vaccines. It is rare, but as you so well know, can happen. I just skip that manufacturer now and have been fine with another manufacturer’s vaccine approach. In my case my uvula swelled but was distinctly different in presentation from how it can with an allergic response, and the distal end soon went necrotic and slipped off like a sock. My life was never at risk, my snoring lessened greatly, and my mouth dryness worsened some. And, yes, my physician knew and checked with vaccinologists and other specialists for the best approach.

I have not mentioned it to some people who i know who would put two and two together to reach twenty-two.

Something a bit light-hearted but generally on-topic from an engineer friend:

given the number of neurodivergent people in the sciences, it’s far more likely that autism caused vaccines [rather than the inverse].

Joan Yost's avatar

I also had a very severe adverse reaction and I rarely tell anyone either.

Paul John M.'s avatar

why not share taht adverse reaction? what is the reason for that?

Joan Yost's avatar

Honestly, I don’t talk about it because what happened to me was very, very rare. Other women had a similar reaction (according to VAERS) and by itself it was not life threatening. In my case, the statistically rare reaction intersected with another medical condition. The timing turned out to be dangerous for me. It was literally a one-in-a-100 million reaction. Explaining this is too complicated (and too intimate) for most conversations.

Paul John M.'s avatar

Joan.

I totally respect the intimate nature of your health--choice to keep it private and not served up for public consumption.

I jsut wonder about the other reasons for not sharing which (I think) can be summed up as something like "anti-vacciners can't handle it and will use it against us".

That may feel responsible, but it also signals a lack of respect for others’ ability to reason.

Would you respect anyone who doesn't respect you? Listen to someone who refuses to listen to you? Consider their viewpoint when your viewpoint is collectively dismissed? Trust someone who doesn't trust you?

Indiviudals who hold hesitate views are as unique as you. They aren't cartoons. And they shouldn't be labelled as "anti-anything" for questioning substances injected into loved ones (in some cases) within 24 hours after birth.

Joan Yost's avatar

I think you are mischaracterizing me, although I am not sure why. I have challenging discussions with people I disagree with when possible. Often circumstances do not allow it, unfortunately. I have had these discussions for years. It is rare that I cannot find some area of shared agreement with someone who I otherwise vehemently disagree with. (Gun rights and a local debate about property taxes and who is responsible for maintaining street trees come to mind.) The problem is time.

It takes about half an hour to explain just the very basics of what happened. But without a complete explanation it is easy to conclude that a vaccination nearly killed me. Except it was not the vaccine alone. It was a vaccination in combination with an unusual condition that is very specific to perimenopausal women, further combined with an underlying reproductive health issue that no one, including me, knew was there. The easy conclusion simply is not correct. Without the other circumstances I would have had the usual sore arm and maybe had a cycle irregularity like thousands of other women had with the COVID vaccine. Scaring someone unnecessarily by not explaining the whole story is irresponsible. My story is pretty dramatic but like every health issue it needs context. Drama without context is just fear mongering. That is hardly respectful.

As for the injection immediately after birth? (Since you brought it up.) It is a vitamin, not a vaccine. It prevents potentially bleeding to death. Another treatment is putting an antibiotic or silver nitrate in a baby’s eyes to prevent infection leading to possible blindness. There are people whose religious beliefs lead them to accept an infant’s blindness (or death) as divinely ordained. They know the risk and accept it. Why anyone without strong religious devotion would choose to risk that baffles me. Close friends lost their baby three years ago it was easily the worst tragedy I have ever wittnessed.

A couple of months ago I dug into the CDC VAERS database to see just how common childhood vaccine injuries are. There are two vaccines responsible for nearly all of the injuries or deaths of people under the age of 50. Over age 50 vaccine-related injuries become more common, but there is no pattern to who or why or what vaccine. They are very random.

One of the problematic early childhood vaccines is an optional combination vaccine for rotavirus. It appears to be a formula tied to a specific manufacturer. That is really concerning!

The other vaccine was the MMR. However the problem wasn’t the vaccine itself. It was how it was used. All of the deaths occurred in children who were much too young to have been given that vaccine or who were sick on the day they got the shot. The problem isn’t the vaccine in those situations. The problem is the doctor’s judgement. Giving a vaccine to a baby too early is dangerous. I was shocked. Giving a vaccine to someone who is sick and running a fever is also dangerous. I had to look that up because I didn’t know. Both things go against standard medical practice.

The VAERS database does not contain follow up information, but those are the kind of mistakes that cause doctors to lose their licenses. Medical professionals (usually nurses) who witness that kind of thing are legally required to report it to their state. And they do.

The vaccine injury settlement program partially shields pharmaceutical companies (but only partly), but it does not stop lawsuits against doctors, medical practices, and hospitals for wrongful death. It does not stop criminal charges such as medical negligence or homicide. The database does not contain that information, but there is more than enough information for someone with determination to find out if the doctors were held responsible. They should be.

edit: I think I accidentally made it sound like gun control and taxes were topics where I couldn’t find common ground. Just the opposite. Those were things where we unexpectedly DID find common ground. I wasn’t the only one who was surprised by that.

Seth Finkelstein's avatar

Paul, I see you have a lot of resentment there, do I have that correct? (humor)

More seriously, while I probably shouldn't do this, can I ask you to help workshop a paragraph for me? How do I non-aggressively convey, in a short number of words that: Yes, I do think the anti-vaccine viewpoint is lunacy, and no, I'm not open to it. Basically, I rank anti-vaccine as in the same category as Holocaust Denial - it's the purview of cranks, downright evil people, and those who have been taken in by them. Now, I know the way this often goes, the Denier then says that if I'm not willing to believe that vaccines, err, Holocaust, is a hoax, then that's close-minded. It's stopping debate. It's disrespectful of them. On and on. No, I'm not going to lie, it's nonsense. Now, you don't have to rush, to leap, to immediately tell me one can take this too far - I'm fully aware of the logical problems. The way this can lead to fanaticism, that it is ultimately philosophically unsolvable. But there's a problem in the other direction too, the difference between being open-minded and having one's brains fall out. There's just too much crazy in the world.

How can I get past that "catch-22", where persuasion supposedly demands I respect some of the most vile ideas around, on pain of being deemed the one who is wrong?!

Paul John M.'s avatar

Seth---

Maybe what you’re describing is coming from over-grouping. Vaccines aren’t one thing—each is different and have different risk–benefit profiles—and the people questioning them aren’t one cartoonish character either.

You are right....that fair dialogue means engagment. But his idea of "connection before corrrection" is so closed. Total dismissal can drift into fanaticism. That’s the intellectual line you’re trying not to cross.

But once a view is framed as morally wrong (e.g., ‘evil Holocaust stuff’), the shift is already happening—you’re no longer assessing claims; you’re deciding who is worthy to be listened to (and then descrbing benefits of herd immunity). When its at that point, the discussion isn’t constrained by bad ideas—it’s constrained by who’s permitted to participate. Not sure anyone wins there.

--vaccines are all different and all have different risk and benefit

--people/kids getting them are different

--human factors count (both HCPs and patients)

--now that AI is taking of the evidence part...HCPs can be more open to guiding

---HCPs are all different.

Deborah Newbury's avatar

Thank you for a succinct summary of something I have been saying in a too-wordy and fumbling manner to rinds/acquaintances concerning effecting political change.

"Connection before correction."

I may steal that a bit!

Paul John M.'s avatar

"Correction kills connection"

Dar's avatar

First, I hope you're doing much better. Best wishes to you for good health. Next, I applaud you for your ongoing work, employing your strength for translating heavy science into something understandable but also hear-able, acknowledging that our roadblocks in thinking coexist with a simple desire to protect our loved ones and ourselves. Thank you for your work.

Regarding Trent, you did your best in a tough situation -- tough because you were seriously unwell and a childhood frenemy showed up to be combative. I wonder if he's reflecting on being aggressively contrary as much as you're reflecting on your effectiveness?

I appreciate that you're using your example as a teaching moment, and I'll honor that by sitting with the material. But the failure here is on that guy. He showed up specifically to throw punches. I empathize with the medical issue they experienced, but he is choosing to be close-minded and choosing to be hurtful.

I'm sure you gave him plenty of grace. To me, the question isn't whether you might have had an influence if you spoke differently. The question is: why did he feel compelled to show up at all? Why would he chime in to mock the life's work of a thoughtful woman with excellent credentials? I'm guessing his motivation has only a little to do with a vax reaction.

Seth Finkelstein's avatar

I don't know the guy, but I've seen enough similar attitude that I think I can try to answer the "Why" issue for you. People who are anti-vaccines have been fed a line that they are the smart ones, going against the "sheeple" who have been deluded (see above quote, "You keep sticking to scams. As long as it pays the bills."). Thus when someone who has been vaccinated gets sick anyway, they react by wanting to point out that they (anti-vaccine) Are Right, and pro-vaccine perspectives then Are Wrong. It's basically, to put it bluntly: "See? See? We anti-vaccine people are called dumb, but look, look, you're the dumb one, you got vaccinated and it didn't work, even harmed you - Checkmate, VAXTARD!".

I'm extremely dubious that personal connection changes any of this.

C Bradford's avatar

You are 100% correct! There is a certain psychological profile at work creating this type of anti- vaxxer. It is not caused from any bad experience had with a child. I see and hear it with a certain acquaintance and one family member. Put into context: this anti-vaxxer wants you to KNOW he is superior, smarter, victorious and that moreover, that you are wrong. Trent spent so much of his energy knocking her down further when she were very ill. There is a true lack of respect, remorse or concern for a fellow human being at play here. This type of personality would initially be studied in an Abnormal Psychology college course. Look up Trent's behavior from a psychological standpoint and see what you find. I don't think you would be stocked, but OP might. Unsuspectingly, she went for the "bait". Just what Trent wanted. I no longer entertain any discussion regarding vaccines or other medical topics with these psychological types. It can only result in exactly and unfortunately what OP experienced: confusion, injury, guilt and feelings of defeat. Exactly what Trent intended.

Rick's avatar

Interesting article. What I find so frustrating are people like Trent who, for lack of a better word, “deny” the science. Then reference snippets of science from reputable sources, like CDC, and use it totally out of context. As he did.

Shelley's avatar

Ha! The Trent I know has been my husband for over thirty years. He is one of the few people who has been there for me as I have struggled with multiple Long Covid health issues and worsening chronic lung disease. Too many in my family and community believe vaccines are the problem and dismiss my symptoms (even some doctors). It has been an isolating and difficult few years. I appreciate your work and hope you are feeling better soon.

Lauren Neko's avatar

I’m more upset he didn’t show you concern or empathy for being ill. Like hell, pick a better time for that convo

Vic Nogay's avatar

Thank you so much for this!

Jason Merchey's avatar

Don’t be too hard on yourself. When you wrote “I doubt it would have, due to the veracity of his vaccine skepticism,” you were very correct. America has had a problem with fantastical thinking for a long time, see the book “Fantasyland” by Kurt Andersen. Or see the MAGA movement that is developing this country like a smallpox epidemic. Point being: the conversation was probably destined to be like two ships passing in the night; there was really nothing you could’ve said that would have convinced, educated, Shams, or manipulated him into changing his worldview. Look what the Israelis are doing now based on their worldview… it is almost impossible to play one cards right enough to get past another person‘s defenses.

So he scored a cheap shot on you, or failed to score a cheap shot on you— it doesn’t matter all that much; fuck that guy.

It’s easier for me to say that because I am not a public health specialist or a public personality. My tack would have been to say:

“You show your ass, guy, when you come at a very sick person with some talking points that you learned at the RFK school of public health. Stick to rent-seeking and do not try to engage me in a discussion about public health—or private health—for that matter. What happened to your child is sad, and it may even be a utter coincidence. Either way, that is your pain, not mine.”

In other words, an approach probably not all that different than if my MAGA neighbor wanted to show me the light. Or a Jehovah’s Witness comes to my door.

You can lead a horse to water, as they say. Perhaps you feel a responsibility to lead horses to water, but happily I am free of that responsibility.

Joan Yost's avatar

I don’t personally use the same kind of language you suggested. But you have to speak in the language and ideas of your listener. Obviously.

Greene, D/C's avatar

Sadly, I suspect Trent only hardened his suspicions and left the discussion feeling angry. Something primal seems to get challenged during certain types of conversations, and the brain loses capacity to see beyond the reptilian fear for survival. Understanding the difference between PUBLIC health (involving millions) and INDIVIDUAL heath (involving you or me) requires acceptance of probability, not perfection. Data don't stack up well, against what WE KNOW happened to us. The demand, or need, for certainty is why so many people do not understand science at all.

Joan Yost's avatar

Here is what you should have said. “Yes, I was vaccinated and that is why, despite having gotten two major infections back-to-back, I am not in an ICU hospital bed.”

Human hubris prevents making the connection between a percentage reduction and personal risk of severe illness and death. No one anticipates being hospitalized or even dying because of something “simple” like the flu. (Most people mistakenly believe flu is something much more mild than it really is.)

Unfortunately, stating the percent reduction in hospitalizations says “I want you take a shot (and maybe have a bad reaction) to protect the hospital.”

George Nikolich's avatar

As they like to say over at TWiV, and echoing your point: "But did you die?"

"The great thing I like about this is they define vaccine efficacy against what? In its vaccine efficacy against influenza-associated hospitalization, and that was 49%. Hopefully, reminding people of our lesson that vaccines do not prevent all infections, but they do reduce our risk of severe disease. Listeners may recall my question, my insensitive question to all my patients that complain, "I got the flu and I got the vaccination," and I say, "But did you die?" Remember, here's an opportunity to reduce that risk." -Daniel Griffin, TWiV #951

There was another, more recent episode where they shared an anecdote about someone who said the COVID infection they had wasn't that bad. That person had suffered some sort of episode during their COVID illness, fell and wound up in the ICU, but the COVID wasn't that bad.

Tamara's avatar

I'm in the UK and I hate that it's practically impossible to get up to date Covid vaccines, but the Government have decided it's a waste of money, because of course that's what's seen as more important than human lives. But when I bring this up people treat me like I'm crazy (and while vaccination scepticism is increasing here, our government still advertises that vaccinations are advisable and necessary for those who can take them). They insist all the new symptoms people are experiencing aren't due to repeated Covid infections, but because of vaccinations received when they first became available. I know info dumping doesn't help, but I haven't found personal stories don't seem to make a difference either.

Valerie Olney's avatar

Thanks for this, very helpful. And glad you are home and recovered.

Another anecdote but I wonder if some of the viruses circulating this year provoked more of a histamine response than is usual. I had a very short lived mild illness and a week or so later had a post viral rash that I read could be a histamine response. I’ve never had that happen before that I know of. Really glad you are OK.

erin's avatar
Apr 8Edited

Wow. Nobody in all the comments is open-minded enough to consider that, maybe, just maybe getting more covid shots at this point is... foolhardy? Esp. since covid has mutated into a common cold, more or less. I mean, even in this short thread there are several people who were quite vax-injured.... why risk it?

Edit: Sorry, there is one. :-)

Seth Finkelstein's avatar

Erin, I hear you asking "Nobody in all the comments is open-minded enough to consider that, maybe, just maybe getting more covid shots at this point is... foolhardy?" - is that right? (joke)

I just don't see evidence that this stuff works (meaning, the connection/reflection/acknowledgment etc, not vaccines!).

As in, I'm vaxmaxxed. It's unreasonable for me to try to pretend that I don't think what I do. And no, I'm not going to be "open-minded" when, analogy, there's a full-on Holocaust Denier as the government Foreign Minister and someone asks me if I'll consider that, maybe, just maybe the death toll was ... exaggerated.

When the advice is don't bring facts to a feelings-fight (and that's true), I don't know what follows after that.

erin's avatar

Hey Seth, good to see you again. Perhaps "open-minded" was not the right word. I was just wondering... given the rather frequent reports of harm from the jabs in the past, some of them severe, and the virus having mutated to rather like a common cold, why do you keep jabbing?

Seth Finkelstein's avatar

Erin, I hear you saying "Hey Seth, good to see you again" - is that right? (joke!). It's a small net-world.

My view is this: https://www.explainxkcd.com/wiki/index.php/2515:_Vaccine_Research

I keep jabbing because vaccines are great. These days, I've come to think sometimes there's simply no substitute for looking at empirical evidence. Whatever intellectual charity one wanted to grant people opposed to the Covid vaccine at the start of the pandemic, at this point, the experiment has been run. Literally billions of doses delivered worldwide, that is, under every kind of medical system and political regime. The pro-vaccine medical consensus is far more likely to be correct than whatever comes up in social media.

And Covid can still be far worse than the common cold. My reactions to the Covid shots have been quite bearable. It's soreness and aching comparable to when I've moved many boxes which are too heavy. Whatever protection the vaccine gives me, I'll take that deal. The shingles vaccine was actually the worst I've had, I could barely function for a day - but a friend of mine had shingles, and he was in pain for *weeks*. Another deal I'll take. Medical treatments have side-effects.

The right-wing anti-vaccine campaign is just evil, and I use the word deliberately.

erin's avatar

I appreciate the explanation. You are one of the very few people on the woke/progressive side willing to talk across the divide, and that sure is a breath of fresh air.

Myself, I don't do upper respiratory virus vaccines, because I think, not without reason, that those viruses mutate too fast for the vaccines to work in a meaningful fashion. But they keep Big Pharma humming.

As for who is evil and who is not in this discussion... your side tends to throw that word around too liberally, IMO. Looking forward to seeing you on the other site -- if they ever regain their umph. :-)

Suzanne Robotti's avatar

Hi, I feel apologetic to say as a non MD but an avid health armature, I could not connect the dots on your illness. What was the diagnosis? You quote: “It sounds like your body basically got a double-dose of cytokine storms…” And you move into a discussion of myocarditis and pericarditis, both connected with cytokine storms (I read your link). Is that what you suffered? And congratulations on your recovery.

FYI, again, I’m not a doctor, but an avid supporter of integrative medicine. By that I mean I will happily and quickly use western medicine when I need it. All other times, I work hard to stay healthy and, when ill (most often with colds, first try waiting, self care, non drug (including nonherbal) interventions like nasal lavage, naps, hot drinks with honey.