Will You Be Getting the Covid Vaccine?

[2Cor.12:19]

On the other hand I had a bad reaction to the classic flu vaccine done in november, with neutropenia (and enthesis pain that is still not resolve), because of the immune system activation...

@pattismith I share the same concern as I had a severe reaction to a flu/pneumonia vaccine 20 years ago that permanently impacted my autonomic nervous system. But I'm going to take my chances on the vaccine because COVID kills - and when it doesn't, it can cause permanent organ damage.

Sue Levine MD – New York ME/CFS Expert –

“In general, I’ve been cautious about recommending flu vaccine, pneumococcal vaccine, and most strongly the shingles vaccine in the ME population because a large proportion of my patients have experienced an adverse reaction of one sort or another with varying degrees of severity. The patients that are disabled are mainly homebound ( so less likely to get exposed to these pathogens) and in those I request that household contacts do get vaccinated.”

“Also, as you know there have been limited published reports of Gardisil being an instigator of ME in a subgroup of patients.”

“I feel, however, because of the current circumstances of COVID being potentially a deadly virus that although caution is warranted, that in general I will be supporting vaccination with either Pfizer or Moderna vaccines whichever is more easily available.”
ME/CFS and FM Experts on Whether to Take the Coronavirus Vaccine – Plus The Vaccine Polls

 

[nyanko_the_sane]

I'd rather not take my chances with Covid.

Covid is a type of thing that if you don't come to it, it could come to you.


With headlines like this:
New, extreme precautions urged for L.A. County residents because COVID is ‘everywhere’
Some people are living in fear even when they don't leave their house.

 

[Gingergrrl]

With headlines like this:
New, extreme precautions urged for L.A. County residents because COVID is ‘everywhere’

This article is really accurate and COVID cases are completely out of control right now here in LA. Do you live in LA, too, @nyanko_the_sane? I don't want to take this thread off-track but I was supposed to have an outpatient surgical procedure in 2-weeks and am seriously considering postponing it until COVID is better here and we are no longer the COVID epicenter of the country.

Now back on topic...

Regardless of my personal feelings about the vaccine (and I am still leaning against getting it), it isn't relevant to my upcoming procedure b/c the vaccine is not available to me at present anyway. And at this rate, I do not think the vaccine will be offered to the general public for many more months.

I read Cort's excellent blog with all of the different doctor's opinions re: the vaccine (plus I have done a lot of other research) and it reinforced that the vaccine would not be right for me. But I have an autoimmune condition that causes neuromuscular weakness (different from ME/CFS) and there are potential vaccine side effects that could end my remission.

I would be willing to risk anaphylaxis from the vaccine (because I would do the vaccine at a hospital with MCAS pre-meds and EpiPen on hand) and I would also be willing to risk any short-term relapse. But I am not willing to risk the vaccine completely ending my remission and re-activating my autoimmunity and neuromuscular weakness. I am trying to find evidence that guarantees that this would not happen but so far, I cannot find any.

 

[2Cor.12:19]

This article is really accurate and COVID cases are completely out of control right now here in LA. Do you live in LA, too, @nyanko_the_sane? I don't want to take this thread off-track but I was supposed to have an outpatient surgical procedure in 2-weeks and am seriously considering postponing it until COVID is better here and we are no longer the COVID epicenter of the country.
...But I am not willing to risk the vaccine completely ending my remission and re-activating my autoimmunity and neuromuscular weakness. I am trying to find evidence that guarantees that this would not happen but so far, I cannot find any.

@Gingergrrl I don’t live in LA but my kids/grandkids do so I follow their local news. Terrible!!! They all got COVID the week before Christmas, but thankfully, relatively mild cases and they’re back to work now.

I don’t know what your autoimmune neuromuscular disease is, but I just lost a family member (in her 60’s) to COVID who had MS. I also have a nephew (40’s) who has an autoimmune disease who has COVID and is currently fighting for his life. He may not make it.

I have idiopathic Axonal Polyneuropathy with muscular wasting/weakness. Mine was not determined to be autoimmune but I do have another AA disease. So I’m concerned about my neurological condition worsening too - especially since they don’t know what caused it. But having lost 1 family member with an AA disease and another one that might not make it, I think I’m going to take the risk.

These are certainly hard decisions we all have to make with so many things to weigh.

Very best wishes to you.

 

[Gingergrrl]

@Gingergrrl I don’t live in LA but my kids/grandkids do so I follow their local news. Terrible!!! They all got COVID the week before Christmas, but thankfully, relatively mild cases and they’re back to work now.

I didn't realize that your kids & grandkids lived in LA and COVID is literally out of control here right now. I am sorry to hear that they all got COVID but thank God they all had a mild case! I just spoke to my doctor who was going to do my outpatient surgical procedure in 2 wks and she felt that I should wait 1-2 months until COVID is (hopefully!) better here so that is what I am going to do and am very relieved.

I don’t know what your autoimmune neuromuscular disease is, but I just lost a family member (in her 60’s) to COVID who had MS. I also have a nephew (40’s) who has an autoimmune disease who has COVID and is currently fighting for his life. He may not make it.

I am so sorry about your family member who you just lost to COVID and also about your nephew. I will pray for his full recovery. How is he doing now? My autoimmune neuromuscular disease is an (atypical) form of LEMS (Lambert Eaton Myasthenic Syndrome). I can explain more about it if it is useful for anyone but I don't want to take this off-track. I also have Autoimmune POTS, Hashimoto's, and MCAS. Everything is in remission for me right now although there are several medications that I will take for the rest of my life. It turned out that I did not have ME/CFS (after three years of 100% believing that it was my diagnosis b/c every doctor I saw told me that it was). But that is also another story that would take this off-track

I have idiopathic Axonal Polyneuropathy with muscular wasting/weakness. Mine was not determined to be autoimmune but I do have another AA disease. So I’m concerned about my neurological condition worsening too - especially since they don’t know what caused it. But having lost 1 family member with an AA disease and another one that might not make it, I think I’m going to take the risk.

I am so sorry to hear this and it is such a tough decision re: the COVID vaccine. I truly feel that each person's situation is highly nuanced and no two people are alike. In my own case, my assessment is still that the vaccine is more dangerous for me than the virus. I will not be eligible for the vaccine until it becomes available to the general public (which the news today in CA was predicting might not be until May or June). So, luckily, there is a lot more time for me to see how people with autoimmune diseases and history of anaphylaxis (like me) do with the vaccine over the next 5-6 months.

These are certainly hard decisions we all have to make with so many things to weigh. Very best wishes to you.

Thank you and likewise to you. Please keep me posted (in this thread or PM) if you get the vaccine and if you have any side effects from it. At the moment, I am doing a pretty strict quarantine and wear a mask 100% of the time when I leave my home, and take all the precautions (although I know this is still not enough to be safe ).

 

[Rufous McKinney]

I just spoke to my doctor who was going to do my outpatient surgical procedure in 2 wks and she felt that I should wait 1-2 months until COVID is (hopefully!) better here so that is what I am going to do and am very relieved.

My town receives many who come up here....from LA. My husband then is still going out daily....making me more nervous. Entering stores at 5:30 pm prime time. But he won't change...nope another one of the stubborn.

Now I wish I'd gotten out, with care, to do a couple of things which now feel like its even more dangerous.

I"m now awash in dental guilt...so your comments..about waiting...suggest I will wait..a bit longer.

 

[2Cor.12:19]

@Gingergrrl Thank you for your kind thoughts. My nephew has greatly improved! He's having some heart issues but it sounds like he's going to make it.

I've never heard of LEMS so I looked it up. I can sure see why you don't want to risk a flare. I have Hashimoto's and POTS as well (although my cardio doc never said my POTS was autoimmune.

I'm glad they were able to postpone your surgery. I'm in Nevada and they've cancelled all non urgent surgeries here too until further notice. My daughter's was cancelled.

I'll be sure to post when I get the vaccine. It'll be awhile because I think I'll be in Tier 3? I'm glad there will be plenty of guinea pigs going before us - LOL. I don't go out in public or gather with friends. We do our grocery shopping curbside or delivery. My husband only goes to Home Depot, but wears an N95 and wipes everything down. But COVID is everywhere no so like you said, there's always a chance. We can only do the best we can and try not to worry about it.

 

[Gingergrrl]

Now I wish I'd gotten out, with care, to do a couple of things which now feel like its even more dangerous. I"m now awash in dental guilt...so your comments..about waiting...suggest I will wait..a bit longer.

I relate to the dental issues. I saw a holistic dentist in Feb 2020 b/c I have 4-5 cavities (that I've now had for several years but it was not possible to address them in prior years when I was having anaphylaxis). I did Clifford testing to assess which dental materials I had the best chance of not being allergic to and was going to do allergy testing of the materials w/my MCAS doc and then set up the dental work. But then COVID happened and LA went into strict lockdown and then my MCAS doc retired! So it was not possible to do the allergy tests of the dental materials. At some point I need to figure out how to safely do this dental work but it is low on my list of other priorities. But it is stressful when I think about it

@Gingergrrl Thank you for your kind thoughts. My nephew has greatly improved! He's having some heart issues but it sounds like he's going to make it.

That is great news about your nephew!

I've never heard of LEMS so I looked it up. I can sure see why you don't want to risk a flare.

I've thought about this endlessly (since COVID started) and I am not willing to risk potentially ending my remission for the vaccine. It was immuno-suppressants that led to my remission and this vaccine would be very immuno-stimulatory (the exact opposite).

I have Hashimoto's and POTS as well (although my cardio doc never said my POTS was autoimmune.

I was tested for the Cell Trend autoantibodies that correlate with Autoimmune POTS and had very high levels of almost all of them (and it was treatments for autoimmunity that put my POTS into remission).

I'm glad they were able to postpone your surgery. I'm in Nevada and they've cancelled all non urgent surgeries here too until further notice. My daughter's was cancelled.

It is officially cancelled and will be re-scheduled in 1-2 months if COVID cases are down here. They have not yet cancelled all non-urgent procedures in LA but I think they are very close.

I'll be sure to post when I get the vaccine. It'll be awhile because I think I'll be in Tier 3?

Is there a website that lists the different Tiers or is this just for Nevada? I know every state is doing the vaccine roll-outs differently.

I'm glad there will be plenty of guinea pigs going before us - LOL.

Agreed

 

[pamojja]

An detailed and easy to understand analysis on the benefit and risk of the 3 vaccines published till now by a young MD in Sweden:

Are the covid vaccines safe and effective?

I'm pasting only the concluding remarks for not violating copy-right regulations here. Still worth reading the whole detailed analysis on its site.

Ok, let’s wrap up. So all three vaccines appear to be highly effective at preventing covid-19, although both the Pfizer vaccine and the Moderna vaccine are clearly more effective than the Astra-Zeneca vaccine. In terms of safety, I have significant concerns about the Astra-Zeneca vaccine, considering that there is a signal suggesting that it increases your risk of developing transverse myelitis by a hundredfold or more. Future research will have to show whether that is a real risk or not. I also have concerns about the Pfizer vaccine, since there was a 60% increase in severe adverse events among those taking the vaccine, an issue that Pfizer hasn’t bothered to address at all, and I am also concerned about the fact that Pfizer does not provide a detailed breakdown of adverse events, which makes it impossible to see if there is anything in there that we should be worried about. The Moderna vaccine does appear to be safe however, based on the data available up to now.

One final point. None of these studies tell us whether the vaccines are safe and effective for children. It would be unethical to start vaccinating children without first having made sure that it’s safe, especially considering that the risk to children from covid is infinitesimal. The same applies to pregnant and breastfeeding women, people with immune disorders, and people with severe allergies. If you belong to one of these groups, you should probably think extra long and hard before getting vaccinated, because these groups were not represented in the studies, and it is therefore not clear that the benefits outweigh the harms.

 

[Bronc]

There is an alternative to those who are vaccine hesitant which is Ivermectin, which works both as a prophylactic and for the viral/pulmonary stages of Covid-19. Please find below a 1 page summary of the clinical evidence regarding the efficacy of Ivermectin. Sadly, this cheap, extremely safe( over 3.7 billion doses given over the last 25 years) is being ignored in rich Western countries. Since last summer millions of people, have been given Ivermectin to prevent infection with sars-cov2 in developing countries from Peru to India. Surprise, surprise it has dramatically brought down infection and mortality rates again something that is being ignored in the western press.
https://covid19criticalcare.com/wp-...rials-Evidence-for-Ivermectin-in-COVID-19.pdf

 

[Lieselotte]

This is what worries me:
Reaction of Human Monoclonal Antibodies to SARS-CoV-2 Proteins With Tissue Antigens: Implications for Autoimmune Diseases
https://www.frontiersin.org/article...NfDJA317hYLHv7d2qwmGjaX_aBI4_hPErNBD9A9OSRoT4

Susan Levine stated in the Health Rising article:
“Unlike flu and pneumococcal proteins patients who get the COVID vaccine will never have `seen’ this virus before so the body will have to mount a primary immune response as opposed to a `memory’ response so this reaction could potentiate an adverse response in a subgroup of ME patients and may lead to `autoimmune conditions’ further down the road."

So this worries me, I have 2 autoimmune conditions already. Of course, these implications could come from the vaccine or coming down with Covid itself, so what are the chances I can escape both lol?

The biggest Covid risk for me will be when I go back to work...I haven't been sick since I started working from home last March! I hope the culture of coming-to-work-sick-so-I-don't-look-like-I'm-faking-it-or-slacking changes after this Maybe I will get the vaccine before going back to the office.....

 

[Wayne]

Just ran across the following:

• The mRNA injections are gene therapies that do not fulfill a single criteria or definition of a vaccine
• COVID-19 “vaccines” do not impart immunity or inhibit transmissibility of the disease. They only are designed to lessen your infection symptoms if or when you get infected. As such, these products do not meet the legal or medical definition of a vaccine

 

[Alvin2]

I'm totally getting it, though its not widely available yet here.
I will be careful about which one i get, i want to have several options and will look at each one before deciding which one i'm going to go for.

 

[Gingergrrl]

This is what worries me:
Reaction of Human Monoclonal Antibodies to SARS-CoV-2 Proteins With Tissue Antigens: Implications for Autoimmune Diseases
https://www.frontiersin.org/article...NfDJA317hYLHv7d2qwmGjaX_aBI4_hPErNBD9A9OSRoT4

Thank you for this article and I just saved it to my computer. I have only skimmed it so far but it says many interesting things:

Segal and Shoenfeld have raised concerns for vaccine-induced autoimmunity by citing examples of how previous vaccinations have induced cross-reactive autoimmunity in susceptible subgroups. They cite specific examples of how vaccine-induced cross-reactivity has led to the onset of systemic lupus erythematous, demyelinating autoimmune diseases, narcolepsy, and postural orthostatic tachycardia syndrome

immunologists who focus on autoimmunity have been concerned whether the infection or even a newly developed vaccine itself can trigger autoimmunity via cross-reactivity.

An insufficiently vetted vaccine might mean trading freedom from COVID-19 to an autoimmune assault in the future.

Also, @Lieselotte, you wrote:

Susan Levine stated in the Health Rising article:
“Unlike flu and pneumococcal proteins patients who get the COVID vaccine will never have `seen’ this virus before so the body will have to mount a primary immune response as opposed to a `memory’ response so this reaction could potentiate an adverse response in a subgroup of ME patients and may lead to `autoimmune conditions’ further down the road."

Was this from Cort's article a few weeks ago or is this a new article or addendum?

So this worries me, I have 2 autoimmune conditions already.

I have several autoimmune conditions also and do not plan to get the vaccine. (It is not available to my age group yet but in the future).

 

[Lieselotte]

@Gingergrrl , yes the Susan Levine quote was from Cort's article.

 

[Gingergrrl]

@Gingergrrl , yes the Susan Levine quote was from Cort's article.

Thank you and I just found it in the article. It looks like they updated the Blog with more info and comments (since I originally read it last month).

 

[Bronc]

This is what worries me:
Reaction of Human Monoclonal Antibodies to SARS-CoV-2 Proteins With Tissue Antigens: Implications for Autoimmune Diseases
https://www.frontiersin.org/article...NfDJA317hYLHv7d2qwmGjaX_aBI4_hPErNBD9A9OSRoT4

Susan Levine stated in the Health Rising article:
“Unlike flu and pneumococcal proteins patients who get the COVID vaccine will never have `seen’ this virus before so the body will have to mount a primary immune response as opposed to a `memory’ response so this reaction could potentiate an adverse response in a subgroup of ME patients and may lead to `autoimmune conditions’ further down the road."

So this worries me, I have 2 autoimmune conditions already. Of course, these implications could come from the vaccine or coming down with Covid itself, so what are the chances I can escape both lol?

The biggest Covid risk for me will be when I go back to work...I haven't been sick since I started working from home last March! I hope the culture of coming-to-work-sick-so-I-don't-look-like-I'm-faking-it-or-slacking changes after this Maybe I will get the vaccine before going back to the office.....

Thank you for sharing this. I have similar concerns myself.
Do you have a link for the article with the comments from Susan Levine? Many thanks

 

[Lieselotte]

@Bronc here it is
https://www.healthrising.org/blog/2...gue-fibromyalgia-experts-coronavirus-vaccine/

 

[2Cor.12:19]

I've registered online for it and will get it when my turn comes up. I emailed my electrophysiologist yesterday, asking if she would recommend it given that I have dysautonomia and ME/CFS. She replied in minutes saying: "Yes, Absolutely! Very important--please get ASAP."

To me, Nancy Klimas's statement makes sense: https://www.healthrising.org/blog/2...gue-fibromyalgia-experts-coronavirus-vaccine/
By the time it is actually available to us, more data on ME/CFS patients should be available as patients are tracking their reactions on various online sites.

@Sushi - Did you get it yet? I'm waffling again.

 

[Sushi]

@Sushi - Did you get it yet? I'm waffling again.

Yes, I have had both doses (Pfizer) and in one more day will be two weeks out from my last vaccination—I will go inside a grocery for the first time in nearly a year! I followed Nancy Klimas’s guidelines and it wasn’t bad at all—more or less the same as the general public, I do think that taking some mitigation measures helps for people like us.