Covid vaccine. Anyone not having it?

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Jemima37

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My view is that you should trust your instinct and resist any pressure to go against it. After suffering with ME/CFS, we have all developed a map of reality as to what we can handle.
Unless someone has had our illness or its like, they do not understand fully. Flu vaccines cause a two-day crash for me.
In my case, I am waiting. I want to see the effects on the early adopters as well as truthful data as to its effectiveness.
As someone who received the totally needless Anthrax vaccine because it was compulsory in the military ... I am wildly unenthusiastic about the COVID vaccine which may or may not be of help against variants of the virus.
I feel the same. I feel anxious about my son and husband getting it, even my husband is worried but he knows he has to for my sake and to work safely.

I am going to wait and see how it pans out. My health has suffered enkugh
 

Jemima37

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Thank you all for your replies, it’s really helped to know it’s not just me who doesn’t want to take the risk. My husband and son will be vaccinated as both over 18 but my 2 younger children age 15 and 17 can’t have the vaccine yet. I don’t know when it will be available for children’s if ever, so that’s where my risk will continue with them going to school etc
 

minimus

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I went from moderate to severe ME, with a rapid and severe worsening of muscle fatigability/weakness, after an allergist convinced me to switch from Xolair to allergy immunotherapy shots in early 2018. After each allergy shot, my legs became increasingly leaden almost immediately. I would mostly recover, but never get back to my prior baseline after each weekly shot. The allergist thought I was nuts when I reported this side effect, of course.

I stopped the allergy shots after four or five doses, but my muscle problems continued to gradually worsen. I was later diagnosed with small fiber neuropathy, seemingly idiopathic, with skin biopsy showing my nerve fiber density to be below the first percentile.

One doctor speculated my muscle problems and neuropathy might possibly have been a result of one of the adjuvants, which can be toxic, that are added to allergy shots to provoke a stronger immune response, not to the allergens in the shots themselves.

But given that I am now homebound, trying to avoid becoming bedbound, and am socially isolated from everyone but my wife (who is good about mask wearing and social distancing), I have decided I will not get a Covid vaccine out of concern my reaction could mimic the reaction I had to allergy immunotherapy.

P.S. I have a brother who works at a biotech company in CA where all lab scientists have been deemed essential workers and were eligible to be vaccinated. He says they report that the side effects (flu-like symptoms) were much milder among those who got the Pfizer vaccine than among those who got the Moderna vaccine. Of course, this could be due to chance, but my brother says he will try to get the Pfizer vaccine when he becomes vaccine eligible.
 

Wayne

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I'm currently following a covid-19 vaccine thread on another forum. One guy has just reported that he, his wife, and his mother have just gotten covid-19--for the second time! They all got it last spring, and are now very ill again. He appears to be sicker this time, having to go to the hospital, whereas that wasn't the case last year.

My understanding has been that getting an actual disease lends much greater immunity than when getting vaccinated for that same disease. My limited understanding is that when one's body confronts a pathogen, it "activates" two major functions (pillars) of the immune system. A regular vaccine only activates one of those major pillars, thus less long-term immunity. -- I say "regular" vaccinne as the new covid-19 "vaccines" are apparently using a whole new approach, and don't even meet the medical definition of vaccine

So--to get to my point--if people who've already gotten sick with covid-19 are now getting sick again, how much immunity can we really depend on by getting the covid-19 vaccine? I think it's a worthwhile question to consider, especially for those of us who already know in our gut we're likely more vulnerable to serious adverse reactions than most healthy people.
 

Judee

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i see some igms in my report but related to things like evb. Is there a general igm?
Sorry, @bensmith. I'm not sure why I didn't notice this question yesterday.

So to explain it using your example. If your IgM values were elevated on the EBV that would likely indicate an active infection and that you were able to produce IgM immunoglobulins in response.

If the values indicated normal or low then that could still possibly be a false negative IF you do have IgM deficiency. At least this is how I understood it when it was sorta, kinda explained to me. Even the doctor was uncertain.
 

Mouse girl

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Just wanted to point out that 90% of the population getting the vaccine causes herd immunity, not getting covid.

You know, if you are nervous about it, take your time. It's not like it's going to be easy to get so no pressure. If you got sick from vaccines before, I can certainly understand your hesitation. Just make sure you and all your home family members are being safe with social distancing, masks, washing hands etc. I think it's best to get vaccinated in general, but do what feels best for you. And remember, there is no time limit, you don't have to decide now anyways and let's face it, even if things move faster, when will you even be able to get it? I mean, at the rate things are going, I figure I may not be able to get it for at least a year, if not two. And then there's the whole thing of being online all day for weeks trying to get an apt. Something I can not do. And then being in 8 hour long car lines. I physically can't do that. I live in so cal and that's the situation here right now and at the rate we are going it would take 2 and 1/2 years before we are all vaccinated. lol I would get one as soon as I could but I figure, I'll just have to see how things go and hope that somehow they can hire more people for more sites and do 24 hr, 7 day a week thing but I doubt it. We just aren't set up as a nation to do any kind of health care.

I had to laugh at how easy it is for my friends in England. Someone calls them up, they offer apts, you make one, go in, get the shot go home. No survival of the fittest, online, mutant struggle or days long wait in lines and then be sent home without a shot because they ran out. I don't know how sick people like me or old people without help will be able to get vaccinated.

Just be easy with yourself.
 

vision blue

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Anyone else starting to feel like a second class citizen if not getting the vaccine?

I'm getting increasingly frustrated/annoyed because I've learned that when someone asks me "Have you gotten the vaccine yet?", that's actually code for "I just scheduled my vaccine and aren't I oh so clever"

Today i started my new policy that when someone ask me this, I say "I don't discuss the vaccine". Wrote that in an email this morning.
Yesterday i pretty much hung up on someone who wanted me to babysit as they sat in the post-vaccine waiting room for 30 minutes.

One by one, everyone i know has gotten them, in fact, everyone in US as of today- just pepole i know now in canada and europe who have not yet. But its also people
's attitudes. It's the whiff of smugness in too many that is really grating to nerves. (and in some a downright stench. i had to put up in a zoom with friends i just should have bailed on a play by play on how she was so proud of herself putting her phone to alert her the moment there was a vaccine invite and how she left a meeting to snag an appoitnment...Ugh).

as for myself, if i do get it, still not ready. Since i have little resources, has to be in my comfort zone and in the US public health vaccine are the opposite of putting people in control. people are told when and where their appt is as well as what kind of vaccine they are getting. I do knkow taht i can NOT do things that way, so that may even be the deciding factor.

i'm not sure if this is a rant or a ramble- feeling pretty sick right now, so not sure i have the energy for an out and out rant.
 
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in the US public health vaccine are the opposite of putting people in control. people are told when and where their appt is as well as what kind of vaccine they are getting. I do knkow taht i can NOT do things that way, so that may even be the deciding factor.
i'm just waiting, longer.

So it might REALLY MATTER which vaccine one obtains, given pre-existing conditions, recommendations from one's own doctors, our ME recommendations etc.

So when a Dr. Fauci says- just get whatever vaccine is passed in your direction, wow, I do NOT agree with that at all. So no, until we, the patient, are in control, I won' t be going to any shot clinics.
 

vision blue

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@Rufous McKinney Yes, it may matter for folks like us. i had reasoned if i do get it, moderna might get me sick becasue it has TRIS, j and j might be a problem because more people in vax group got tinnitus and dizziness compared to controls, and the more traditional ones have adjuntivants that probably i should avoid. That leaves pfizer. conernec over potassium chloride and the whole proplyene glycol fat part, but may be least of evils for me. I guess becasue i'm sick i've learned i have to make decisions so carefully- but others seem not to bothered by not getting any choice or say about anythign regarding their vaccine.
 

vision blue

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And then there's the whole thing of being online all day for weeks trying to get an apt. Something I can not do. And then being in 8 hour long car lines. I physically can't do that. I

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This is a big issue for me too. And i'm finding it intolerable to discuss vacccines with others who have no such constraints. I cannot do the online fighthing thing, i cannot NOT have a choice as to what day or time of day the vaccine is, i cannot go to a stadium/convention center/huge high school gymnasium with crowds, i cannot wait more than 30 minutes in a car, I cannot drive more than about 5 miles and only on some roads, I cannot take any vaccine they happen to have. So all that means even if decide i better risk it, with those contraints, it will be a while yet, even though with my pre existing conditions, iu already qualify and have for some time.

but i also don't like the diviseness of it. since i can't do these things, and others can, its like now i have nothing in common with my former peer group and can only talk about this with other like minded people- but since vaccines are the only thing anyone will talk about...
 

vision blue

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I'm currently following a covid-19 vaccine thread on another forum. One guy has just reported that he, his wife, and his mother have just gotten covid-19--for the second time! They all got it last spring, and are now very ill again. He appears to be sicker this time, having to go to the hospital, whereas that wasn't the case last year.


So--to get to my point--if people who've already gotten sick with covid-19 are now getting sick again, how much immunity can we really depend on by getting the covid-19 vaccine? .
Do you mind posting what that other forum is on vaccines?

it's an interesting question- many think the vaccine will need to be a yearly thing like flu vaccines - so those who are thinking about whether they can risk a vaccine maybe should start thinking about whether they can risk it every year. well, that' isn't quite right, but i'm feeling too ill right now to fix it. Let's say one decided to only risk a vaccine once every 5 years. when is the best time? Now, buecause its still a pandemic? a little latter when the more deadly more contagious strain takes over? A lot later when an even worse variant surfaces? Before a major thing you need to do before going into seclusion for 5 years? Don't know. all interesting. I think at some point, attention will finally turn from vaccines to treatments as people realize vaccine only a small part of the full pic of keeping people alive. lots of good research being done on treatments that everyone can take - it's just not reachgin "public health". Keep in mind of course that public health is not in the business of keeping you or me alive- just in the business of making sure health care systmes don't buckle under the load. so a bunch of people with covid in icu and morgues is fine from public health standard as long as it's not TOO high.
 

Jyoti

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Its of course allways a very personal risks/benefits calculation. And therefore always turns out a different decission with different situations and experiences:
I couldn't agree more. I have friends who are choosing not to get vaccinated and others who were in fact surfing the web day and night to find an appointment. What really pains me is hearing about and encountering the judgement and disapproval that seem rampant around this question.

The truth is that the information any of us can access is all new--about a year old at best. There are no 10 year studies to lean on in defense of your choice. And the choices we have are both pretty poor the way I see it. One risk vs another. And precious little in the way of data to help us choose.

Additionally, everyone has somewhat different circumstances and their own values, ways of coping with and confronting challenge. So we are going to choose differently. What is hard to see, though, are those who insist that their way is the right way for one and all, who do not recognize that others are going through their own process and making the best decisions they can for themselves, their families and the world.

Shaming -- which is coming at times from all camps in my experience, is not helping any of us be safer or healthier.
 

vision blue

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What really pains me is hearing about and encountering the judgement and disapproval that seem rampant around this question.
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And another thing pissing me off is i think people are asking me if i've gotten vaccinated yet because they want to find they are not the last one! it's like being picked last for a baseball team. when they find out i haven't been, i almost think they then can feel good about themselves for having "beaten" others to it.
 
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Let's say one decided to only risk a vaccine once every 5 years. when is the best time? Now, buecause its still a pandemic?
Well as it's a pandemic you have a greater risk of getting infected. I can't see the point of having a jab when the infection rate reduces a lot, which it probably will in the next couple of months in the uk and usa. Europe is a different story. A fairly bad one.
 

Gingergrrl

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Anyone else starting to feel like a second class citizen if not getting the vaccine?
I haven't felt like a second class citizen YET but that is only b/c my state is sadly lagging way behind in vaccine distribution. At present, it is still only available to health-care & other essential workers, nursing homes, certain medical conditions, and people over age 65+.

But I know the time is coming that I will be deemed a second class citizen for not getting the vaccine. But thankfully, all of my family & close friends understand my choice and agree with it. I have also discussed it in great detail w/my doctor who is going to give me a medical exemption in the future (if I need one). But in spite of this, there will be people who will not understand and I am prepared to deal with them.

Today i started my new policy that when someone ask me this, I say "I don't discuss the vaccine". Wrote that in an email this morning.
My policy (at present) is that I have different responses re: the vaccine depending on who asks me, and this is similar to how I reply to any personal or medical question that I am asked. For example there is someone that I know pretty well in my apt building and when she asked, I just replied that, "I am not eligible yet b/c I am not 65" and she accepted my answer and I changed the topic.

But with many others, I tell them that I am not getting the vaccine and when they naturally want to know why, then I explain. This is how I explain it (for me) in case it is helpful to anyone else. I am diagnosed w/three different autoimmune diseases plus MCAS. The treatments that put me into remission were all immuno-suppressants. Versus vaccines are the polar opposite and are immuno-stimulatory. So it is very possible that the vaccine could literally end my remission (which for me means going back to using a motorized wheelchair 24/7 and having a caregiver). I am now completely independent and can do an hour walk, drive my car, take care of my apt, go to the grocery store, etc, with no limitations.

For friends & family who witnessed me go through the entire process (over the course of many years) of being healthy, then getting sick, then getting extremely sick, then doing 3+ years of infusions, then going into remission... when they understand that the vaccine could end my remission, and that my doctor agrees with it, they all support me 100%.

They all know that it is not political for me, that I am not an anti-vaxxer, and that I 100% support their decision to get the vaccine (or their decision not to get the vaccine) and I appreciate their support of me not getting the vaccine.

I also have another explanation that I give (when appropriate). Basically, I explain that the vaccine clinical trials had subjects who were healthy and had normal immune systems. The trials did not have people like me who have multiple autoimmune diseases/abnormal immune system and MCAS w/a history of anaphylaxis.

So when experts say that the vaccines are "safe", this statement is probably true for the average healthy person in society. However, let's pretend that the vaccine was like getting a peanut antigen/toxin. If you had a person with a known peanut allergy (anaphylaxis level), then for THAT person, the vaccine would NOT be deemed safe. That person would be excluded from a clinical trial and would not get the vaccine.

To stay with that analogy, if you took 1,000 random people in society who do not have a peanut allergy, and you said that the vaccines are most likely safe for those 1,000 people, that would be a true statement. However, an individual's risk cannot be assessed entirely by the risk of "society at large". The vaccine risk for someone w/a history of severe autoimmunity & MCAS is NOT the same risk level as a healthy volunteer in a clinical trial. Just like eating peanut butter is not the same risk level to someone with known anaphylaxis level peanut allergy.

When I explain to people that I am like the person w/the peanut allergy being asked to risk my life and to end my remission, then my risk level is different. I am the Unicorn in this scenario. So far, I have not encountered a single person who did not understand this. But I am selective in who I share this with and for some people, I simply say, "I have not gotten the vaccine yet" if it is someone who I do not trust to have my personal info.

Apologies that this got so long-winded and I hope it is helpful for someone else! :xeyes:

One by one, everyone i know has gotten them, in fact, everyone in US as of today
That is interesting and in my state, I don't personally know anyone yet who has had the vaccine except for my best friend who is a healthcare worker (and she got both doses of Pfizer at work several months ago). I do have friends in other states though who have already been vaccinated. I also have some family members & friends who plan to decline the vaccine (each for different reasons and none for the same reason that I will be declining it).

So it might REALLY MATTER which vaccine one obtains, given pre-existing conditions, recommendations from one's own doctors, our ME recommendations etc.
This is absolutely true and for anyone w/a history of autoimmunity, you would want to avoid all adjuvants which have the sole purpose of being extra immuno-stimulatory. Each of the vaccines are not identical as they make them sound on the news.

Yes, it may matter for folks like us. i had reasoned if i do get it, moderna might get me sick becasue it has TRIS, j and j might be a problem because more people in vax group got tinnitus and dizziness compared to controls, and the more traditional ones have adjuntivants that probably i should avoid. That leaves pfizer. conernec over potassium chloride and the whole proplyene glycol fat part, but may be least of evils for me. I guess becasue i'm sick i've learned i have to make decisions so carefully- but others seem not to bothered by not getting any choice or say about anythign regarding their vaccine.
I think if someone has not experienced the level of long-term adverse reactions (to something considered to be "safe") that you and I have, than it is almost impossible for them to grasp this. I had anaphylaxis to a dye that could have killed me and I've been instructed to avoid certain dyes in food & meds, as well as contrast dyes, for the rest of my life (by my former allergist who was an MCAS specialist). I also had a neurotoxic reaction to Levaquin that permanently damaged my arm. It is now 11 years later and my arm will never be fully normal.

I have friends who are choosing not to get vaccinated and others who were in fact surfing the web day and night to find an appointment.
Likewise.

What is hard to see, though, are those who insist that their way is the right way for one and all, who do not recognize that others are going through their own process and making the best decisions they can for themselves, their families and the world.
I think some people are just not capable of understanding this.

Shaming -- which is coming at times from all camps in my experience, is not helping any of us be safer or healthier.
I agree that sadly vaccine shaming is going to be a big thing in the future.
 
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I cannot do the online fighthing thing, i cannot NOT have a choice as to what day or time of day the vaccine is, i cannot go to a stadium/convention center/huge high school gymnasium with crowds, i cannot wait more than 30 minutes in a car, I cannot drive more than about 5 miles and only on some roads, I cannot take any vaccine they happen to have.

very much ditto.

I am unable to wear a mask for any amount of time. Its: my blasted eye balls...steaming...and I'm already feeling faint as it is.

So I have that problem too, and frankly I mostly stay home.

I got very very ill about 36 hours after being inside my local Pharmacy and staying too long. Since I'll never know what caused all that, well, the Pharmacy is a dangerous place I don' t enter (send Husband, who has great immune system). I would never get a shot in a pharmacy.

I happened to marry someone who has his own health issue (now) but has some fab immune system and literally for 50 years, I cannot come up with a case of flu or cold in my guy. So- he is sent forth. (and he is careful wears masks, does the hand cleansing etc).

Somehow- they need to get it. And until they do, well some of us wait, or avoid more.
 
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