Covid-19 vaccination experiences

I'm so sorry to hear you still haven't recovered You are definitely not alone, there are lots of people sharing similar stories in the Facebook group ME/CFS and the COVID VACCINES.

Thank you so much for sharing your thoughts on this. It's a really difficult decision...

Also, I recently learned that people who came down with POTS after a vaccination (flu vaccines, for example) have been recommended by one of the main Swedish POTS specialists/researchers to very carefully consider the risks when deciding whether to have the covid-19 vaccine or not. Some have been recommended to not have it. OI was my first and main symptom after the vaccination that made me ill, before the typical ME symptoms started appearing, and nowadays I have very severe OI (most likely POTS and NMH). So, this is one more piece of advice that I'm keeping in mind.

I think I'm going to suggest/ask my GP to try and contact the POTS specialist and/or a couple of ME specialists who know more about vaccine associated ME onset and severe ME (including the neurologist who diagnosed me, although he no longer sees ME patients), to ask for their opinion.

 

@mango

I'm sorry to read about your exacerbation from medical investigation. We do NOT need any extra burden, especially from a system that people turn to for help.

 

I'm getting my first Pfizer jab tomorrow

Home visit finally.

 

Can you confirm which vaccine you had, @DokaGirl? Was it Pfizer?

 

@Trish

"Making COVID-19 vaccines widely available is key to getting people vaccinated and bringing the pandemic to an end. Pfizer Inc. submitted data to the FDA to support storage of undiluted, thawed vials of its COVID-19 vaccine for up to one month at refrigerator temperatures. This change should make this vaccine more widely available to the American public by facilitating the ability of vaccine providers, such as community doctors’ offices, to receive, store and administer the vaccine".

https://www.fda.gov/news-events/pre...torage-thawed-pfizer-biontech-covid-19-vaccin

 

Yes, it was Pfizer.
Hope to not feel so noodle - like soon.

It would be interesting and maybe a bit illuminating if a study was done for pwME, pre and post vaccination. Re certain blood markers, e.g. cytokines etc.

 

A passive (not powered) portable cooler can be quite effective for a few hours. Things can be carted around with regular ice, dry ice, or liquid nitrogen. But in the latter two cases you wouldn’t want to inject that right away ;-)

 

Just got my Pfizer. Feel fine.

 

Had my first Pfizer dose a few days ago. Side effects were muscle soreness at injection site and some next day tiredness. To my surprise there was no increase in dysautonomia symptoms. One would think that something that triggers an immune response would also provoke a reaction in the autonomic nervous system.

 

I had Moderna at the start of May, due the follow up jab next week. Had the expected sore arm for a few days and was more drained than normal but didn't have an exacerbation of ME symptoms.
One thing I found interesting is that I had a quantative antibody count done 4wks after the first shot, which showed only a poor protection. Hoping the second jab improves my protection.
I'd once seen an infectious disease specialist and she was asking people to have the test, if they could pay for it, as she's interested in the response to the vaccine in different people.

 

An ME/CFS researcher has joined the Facebook group ME/CFS and the COVID VACCINES, and is having a look at the group's vaccination reactions surveys Do join the group and take the surveys, if you haven't already

(The group is private, that's why I'm not sharing the name of the researcher.)

 

This study is doing the rounds as an "explanation" of why the viral vector vaccines have increased risk of the Thrombosis and Thrombocytopenia syndrome:
https://www.biorxiv.org/content/10.1101/2021.06.29.450356v1.full.pdf

They claim that the vaccine accidentally being injected into a vein, rather than the muscle is the cause of the increased risk.

But the authors did not actually observe any thrombosis, nor delayed antibody induced thrombocytopenia in their mouse model, hence their explanation is speculative at best.

 

3 weeks on fro m AZ second jab, and my nervous system is still shaken up: more bad nerve pain than usual and pain not improving when I rest. The last 2 months I had been able to cut Tramadol by a third...now back up to previous level.

 

For what its worth.

Today I am 3 weeks after my second shot of Pfizer/BionTech.

My second injection experiences are very slim. And that’s good. I had some very slight soreness in the arm for about 24 hours, but close to nothing of what I call the two days of more “usual” immunological side-effects. So by today, it’s sort of the other way around of the “normal” here, then assuming that younger and relatively young people in general are having a greater immune response after second shot. At least that what the experts say. But most side-effects to first shot here.

It’s hard what to make of the longer though period (relapse) after shot one. It might not have been a reaction to the vaccine at all, but simply just a long period in PEM at level 9-10.

If I were an immunologist I would like to know what, if anything, to make of it, the worse reaction to first shot, then close to nothing after second shot. But I don’t have a clue.

 

My experience with my first Pfizer last week was uneventful. I had a sore muscle around the injection site for a day, but I was concerned about side-effects from the jab because I've been dealing with a vestibular virus for over a year, and I broke out with fever sores/HSV around my lips and tongue just a few days before the jab, so I'm assuming that my immune system was already in 'overdrive' for lack of a better term.

The jab didn't have any negative effect on me at all.

 

I am now near the 4th month anniversary of my first jab (AZ). Still the same. Extra weak and shaky. My legs are like dragging weights on them. My stamina is much reduced and PEM has a lower threshold and longer effect.
The head pain is excruciating and so sensitive to light and noise that my days are now mainly spent in a darkened room. Even with filters using the computer is very hard and rationed. My eyes are so painful.

My senses of smell and taste are still "off" but returning slowly. The stabbing pain in my lower right abdomen is getting better.

Filled in a yellow card form and sent emails to everyone I can think of that might be interested or able to help but no luck.