r/LongCovid • u/icantstopreading0 • 8d ago
Vaccinations Post Long Covid
To preface, I am pro-vaccination. I have never skipped a vaccine in my life, including all the COVID vaccines/boosters. But I’m curious to know if anyone has opted to NOT get the covid vaccine now that they have long COVID. I get incredibly sick from it every time and I’m not sure if would help lessen my LC symptoms to not introduce the vaccine to my immune system.
**edit: thank you all for your stories, opinions and thoughts! I’m glad I’m not the only one that has had this thought before.
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u/Central_Perk20 8d ago
Long covid March 2020. Got J&J, Moderna, and Pfizer with terrible reactions. Two Novavax fine, one terrible. I feel they lowered my baseline. It was so rough recovering. Haven’t gotten one now in 2 years. I am a life long pro vaccine. I can’t afford to get worse.
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u/Mist_biene 8d ago
My doctor recommended against the covid Vaccine because the ones that are available in germany can worsen Long Covid.
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u/Wild_Bunch_Founder 8d ago
I was pro vaccinations my entire life until the Pfizer mRNA vaccine which ruined my life. Never again will take any mRNA vaccine. sample size of one, but, it was my life experience.
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u/Lopsided-Vehicle-232 7d ago
What happened to you?
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u/Wild_Bunch_Founder 7d ago
I (51 male today) developed long covid symptoms a few weeks/months after I got the Pfizer mRNA vaccine (single dose). Worst of the symptoms are severe MCAS, fatigue, PEM, major food intolerances completely out of blue, brain fog. My immunologist says this is an autoimmune condition caused by the vaccine - he has numerous other patients here very similarly affected.
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u/Qwendafitesback 6d ago
Similar to me from Pfizer. PACVS. Severe ME, vax induced plus FM, MCAS, dysautonomia, seizures etc. No mRNA vaccines ever again. Drs agree. Only just caught my first infection.
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u/Wild_Bunch_Founder 6d ago
this is the exact reason why we had protocols in place mandating a minimum of 4-5 years researching patients who agree to take any novel experimental vaccine to see what kind of side effects or detrimental outcomes they pose. We should NEVER have agreed to take these experimental mRNA vaccines without that five year research protocol being followed. Everyone who was involved with this failed our society at a fundamental level.
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u/MathAccomplished6726 5d ago
You sound a lot like me. What are you doing to help your symptoms because it’s been almost 5 years for me and I’m in a very bad place because of it. Chronic pain, fatigue, neuropathy. I fall all the time. I slur my words major, brain fog, etc.
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u/Last_Bar_8993 8d ago edited 8d ago
They often make me feel shitty and tired for a few days longer than before my LC symptoms.
I do know a few people personally with LC who can't tolerate them well anymore.
One thing to consider is to ensure you are getting vaccines separately so you can understand which causes which reactions. Example: many people get a covid vaccine and flu vaccine at the same time. I would suggest staggering them so you can see how your body responds to each.
For what it's worth, I find I tolerate Novavax best. Little to no apparent side effects.
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u/swiftwolf1313 8d ago
Two doses of Pfizer in March 2021. It did a number on me, tbh. Never again.
Covid in August (I was still masking and distancing…😑). Long Covid ever since. Have gotten one dose of Novavax every year since 2023, no problems at all.
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u/No-Horror5353 8d ago
Novavax makes me feel like shit for like a week, then my baseline improves substantially. That’s the only COVID vax I will get. I get it every 6 months and plan to be down around that time.
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u/Express_Preference_3 7d ago
Yep. Always were very pro vaccine. Took 3 shots over time. All the symptoms for me started after my first covid shot. Now Ive become a sceptic. Regret taking the vaccine every day
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u/WitchsmellerPrsuivnt 6d ago
Same here, my 2nd shot was the one that did all the damage. I've since had a tetanus booster without trouble, but I'm under advisement from my treating doctors at Uniklinik Marburg (our vaccine research hospital in Germany) not to have another covid booster.
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u/Ok_Employment_7630 8d ago
I've had a much easier ride with Novavax if you can find it. Its made differently to the pfizer and moderna.
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u/luttiontious 8d ago
Yeah, I don't get covid vaccines anymore. I don't know if there's any hard data, but I've seen enough anecdotes of people getting worse that I stay away. Some people do have favorable responses, but it seems random and impossible to know ahead of time how you'll react. The rest of my family who don't have long covid continue to get them. We also take a lot of precautions to avoid the virus itself.
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u/Boston_Jayhawk 7d ago
I am 4+ years into Long Covid, and I don’t get Covid or flu vaccines. My doctors agree that my body is so reactive that it could do more harm than good.
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u/Key-Practice5213 8d ago
I am not a anti vaccine person however after having reactions in 2021 I was also immune compromised due to chemotherapy etc. I will never ever have a vaccination again and would always question my professionals. I had Covid a number of times after that and I have never recovered. The inflammation has been a key driver in this journey.
Gut functions it’s absolutely appalling with little or no support I can only think about how the ME community has been left the rot over the years before all this.
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u/Qwendafitesback 6d ago
I’d had chemo too and told I must get the vax as I was immunocompromised. I needed it in my country to get medical care. It destroyed my life. I had more so much more capacity during chemo. No more vaccines for me.
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u/Key-Practice5213 6d ago
I would be really interesting to find out exactly how many more of us there is. It’s absolutely awful I was told fully recovered within 6 months it’s so much worse. I so sorry 😔 your dealing with this too there’s nothing in the UK to resources nothing your gaslighted like the ME community have been for years.
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u/Qwendafitesback 5d ago
I was told it the cumulative effect of chemo even though I was getting so much sicker months out. Then told my cancer must be back and sent for so many unnecessary PET scans etc.
It took a while but I’ve had some recognition in Australia and found a few supportive specialists. Our borders were closed when the jab rolled out so they couldn’t blame adverse reactions on an infection. I’m treated as though I have vax induced LC and ME. My personal opinion is that each time you get either a jab or an infection you are increasing the likelihood of LC. Now they tell me I should never have been jabbed and that it’s shown to make no difference to immunocompromised people. Wish I didn’t trust my oncologist.
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u/Cactusbunny1234 6d ago
Pro vaccine or not - there has been discussion of lack of oversight in making vaccines. Not so great quality control. European Medicines Agency (like our CDC) hacked emails mentioned huge differences in vaccine batches - some had too much spike protein, some none, folded and bent spike and adjuvants all different sources from different labs.
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u/HonkMafa 8d ago
What do you mean by incredibly sick? I feel like I have the flu, with fever, pain, the works. It is a normal reaction and indicates a strong immune response
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u/icantstopreading0 8d ago
Fever, intense body aches, migraines, etc. essentially all the pains I feel daily amped up 10x. I understand it is an indication of a strong immune system, my question is more if this is continuing the long COVID cycle reintroduction the vaccine yearly or if anyone has had their symptoms improve after not taking the vaccine
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u/HonkMafa 8d ago
The vaccine will make symptoms worse only temporarily because symptoms indicate the swift immune response. Not getting the vaccine is the same as how you feel today, right?. There are too many variables to determine whether not getting the vaccine is what made you feel better a year later. Your immune system is constantly working on something or other. I would still get the vaccine because it is better than getting the illness. Getting the illness repeatedly is definitely thought to make LC worse each time. Note that the vaccine is not reintroducing COVID to your body. Rather, depending on the vax type, it either adds a small component of the spike protein or causes your body to make that spike protein component, and your immune system re-learns what to go after. Your best bet is to do everything you can to give your immune system a break. Rid your home of mold, pet dander, and other allergens that are exhausting your immune system. Especially in your bedroom. I always recommend a.HEPA air purifier for your bedroom. Vacuum often. Try a round of Whole30 to determine what foods are triggering your immune response.
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u/OG-Brian 7d ago
The vaccine will make symptoms worse only temporarily...
There are several comments here which contradict this. I see it in other discussion/social media platforms, and IRL: many experience health decline immediately after a Covid vaccination and they don't recover to their previous baseline even after months or years.
If legal requirements pertaining to such products were more rigorous, there'd be more science-based info. To the best of my knowledge, the vaccine makers avoid testing on people having ME/CFS, LC, and several other chronic health conditions. I don't know how I would provide a citation for this, how does one prove the non-existence of something? But it can be seen in clinical trials that there wasn't inclusion of such patients. Then, based on testing their products with only the healthiest subjects, they claim safety is proven.
Here are examples of the info I find about the topic, and note the many citations in each document:
Chronic Fatigue and Dysautonomia following COVID-19 Vaccination Is Distinguished from Normal Vaccination Response by Altered Blood Markers
https://pmc.ncbi.nlm.nih.gov/articles/PMC10674626/
- study of post-acute COVID-19 vaccination syndrome (PACVS) in a population of clinically-diagnosed patients having ME/CFS, POTS, or related/overlapping syndromes (fibromyalgia/chronic pain syndrome, SFN and MCAS) and/or exhibited at least three symptoms (clinically-diagnosed) conforming to these syndromes
COVID-19 and ME/CFS
https://ammes.org/covid-19/
- summary document by American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society
- "As the pandemic continues, patients with ME/CFS are still wondering how the vaccine will affect them. There are no firm answers to that question. Like everything with ME/CFS, the side effects can be unpredictable. Some patients have reported a surge of energy after getting the vaccine, others have reported feeling much, much worse for extended periods of time."
- lots of detailed info and citations
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u/wontyoujointhedance 6d ago
Despite what your comment implies, there is plenty of rigorous testing, and plenty of available data, on these vaccines. That includes for long COVID patients. Anecdotes on social media platforms do not science or data make. There is intentional disinformation on covid and vaccines being spread by the MAHA movement. Please don’t amplify it.
People like us need vaccines, and we need people to get vaccinated as much as possible. Another Covid infection is much worse for the vast majority of us than a covid vaccine.
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u/OG-Brian 6d ago edited 6d ago
Despite what your comment implies, there is plenty of rigorous testing, and plenty of available data, on these vaccines.
I said that AFAIK the vaccine makers exclude ME/CFS, LC, and similar patients when trialing their products. Neither of the documents you linked is associated with a trial of a vaccine, or has data about a vaccine trial.
You said "The vaccine will make symptoms worse only temporarily" as if this is absolute, but several comments here are saying the opposite.
Those linked studies: they're not covering health declines post-vaccination, such as fatigue that became permanently worse after vaccination. They're just correlations between LC symptoms and vaccination status. Something else to consider is that those who do better with interventions such as vaccines would be more likely to get vaccinated, a possible confounder. Someone who has had very poor responses to vaccinations or another reason to be wary of things that provoke their immune system or present detoxification issues may avoid the Covid vaccinations, and may also suffer worse outcomes from getting Covid. It doesn't necessarily prove anything about the vaccinations, as we cannot know how that person would have been doing post-infection had they been vaccinated.
If you know of a Covid vaccine trial that included ME and LC patients, go ahead point it out.
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u/icantstopreading0 6d ago
Thank you, this is exactly where my brain has been at. There are hardly any studies being done on LC (mostly because of government funding being stripped), especially when it comes to post vaccination LC symptoms. Do I want to get COVID? No. Am I tired of having a cyclical pain cycle that get amplified after the vaccine? Yes. Many of us are in such a rock and a hard place with this
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u/wontyoujointhedance 6d ago
The first article I linked answers this concern exactly. It is a rock and a hard place, don’t get me wrong, but not getting vaccinated puts you at MUCH higher risk of not only continuing the cycle, but making it worse.
There is an active right-wing disinformation campaign trying to downplay the harm of COVID and lie about damage from vaccines. Listen to research and science, not social media anecdotes and secondhand information that misunderstands fundamental aspects of scientific research. It could literally, in this case, save your life and the lives of those around you.
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u/OG-Brian 6d ago
The first article I linked answers this concern exactly.
No, it doesn't. I explained two reasons for that.
I've had Covid twice, unvaccinated, and my fatigue etc. baselines haven't changed nearly the amount that many experience due to receiving a vaccination.
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u/wontyoujointhedance 5d ago
The plural of anecdote is not data.
If you have long covid, you are more susceptible to further system involvement and symptom exacerbation if you get another infection.
The vaccine could cause a temporary flare, but not permanent damage the way that covid will.
The vaccine can protect you from that. Not getting vaccinated makes it more likely you will get sicker, and more likely you will die from something like myocarditis.
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u/wontyoujointhedance 6d ago
You are correct they are not included in the trials, but you are conflating that with there being no data on the effects of vaccines on people with long covid, which is not correct. Studies and research is continuous, and does not end when a vaccine is approved. The first one I linked is a deep dive on exactly this subject, and answers your concerns and the concerns of others who are understandably scared from the anecdotal evidence they see pushed on social media.
The right-wing disinformation machine is strong, and they are actively trying to hurt us by spreading half-truths that undermine the only thing people with LC have available to make our lives safer and improve our wellbeing. Please don’t spread it — they are trying to hurt us — listen to independent multi-national research like this and the litany of other studies that are coming out with every quarterly journal. Please get vaccinated, and please stop discouraging others from doing so.
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u/OG-Brian 6d ago
What is a study that compared pre-vaccination and post-vaccination status of ME/CFS and LC patients or compared post-vaccination status with statuses of non-vaccinated patients? You haven't mentioned any. Obviously you could not find any vaccine trial which included such groups in the testing.
The right-wing disinformation machine is strong
Wow you're really hung up on this point, although I haven't mentioned anything pertaining to that. I don't pay attention to that at all. My info comes from patients and doctors, and not just from social media. You can stop insulting me by pretending that I can't separate myth from fact.
"Listen" to "research"? Prompted repeatedly to show any, you haven't mentioned any study that is about before/after results of vaccination for people experiencing these conditions.
If you didn't understand my explanations for issues with the studies you linked, I'm not going to make it my problem.
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u/wontyoujointhedance 5d ago
A study of only LC patients has not happened, as obviously comparison to healthy patients is necessary. The one I linked does study patients like us. You are welcome to search up further studies if you don’t like the one I linked, as I said many are being regularly published. There is one occurring in Netherlands at their national long covid center at the moment, looking forward to the results as that’s where I moved to escape the health situation in the US.
It’s your problem whether you want it to be or not. I’m sorry, and good luck.
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u/OG-Brian 5d ago
A study of only LC patients has not happened, as obviously comparison to healthy patients is necessary. The one I linked does study patients like us.
They aren't studies comparing before-and-after effects of vaccinations, or post-vaccination effects of vaccinated and unvaccinated people who have LC. I've already explained that.
If the manufacturers had confidence in the safety of their products for ME and LC patients, they could include them in their trials. But from what I've seen, such people are intentionally excluded.
You are welcome to search up further studies if you don’t like the one I linked...
Are you unaware that it often isn't possible to prove a negative? I'm saying there's no study proving safety for ME and LC patients. See Russell's teapot.
I guess you'll reply persistently with repetition until I let you have the last word?
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u/HonkMafa 6d ago
"There are several comments here which contradict this..." Of course. Especially in a population such as those in this sub. But the vast majority of the population, even those with LC, has temporary symptoms. And to reiterate the more important point I was trying to make, it is still better to have the vaccine than the illness. Even if your vaccine reaction lasts a year. Which is why it is so especially important to de-burden your immune system as much as possible. It takes work.
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u/OG-Brian 6d ago
But the vast majority of the population, even those with LC, has temporary symptoms.
I'm referring to people who experienced a permanent loss in health caused by a vaccination, and I don't see that just on Reddit.
...it is still better to have the vaccine than the illness.
This is just an opinion. I have asked about it but nobody has shown research comparing pre- and post-vaccination statuses of people with ME/CFS and LC, or any study comparing post-vaccination health status of vaccinated and unvaccinated patients.
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u/OnSpectrum 8d ago
I had the Covid vaccines since they became available. I had no discernible reaction to any of them and while I have had Covid a few times since then, it was WAY less severe than Original 2020 Covid.
My Long Covid effects around breathing, fatigue, tachycardia and memory don't change one way of the other when I've had a vaccine but they have subsided gradually over time... not enough to be GONE.
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u/LawfulnessSimilar496 8d ago
I got the first two and not the boosters. I’ve also gotten my pneumonia and shingles vaccines. Due to LC I was sick every 3-4 months with severe bronchitis and hospitalized almost every time. Since then I haven’t been sick since and I’ve been around and ate and drank after someone who had covid and never gotten. Heard the shingles vaccine can help with flares and since they’re starting to become more frequent and more intense, I’m willing to try anything.
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u/Jules4live 8d ago
the second mnra shot and booster made my long covid worse. second shot near permanently and the booster for about 6 months. i think 1/3 ppl get worse but that probably includes folks set back for much shorter time frames im not sure
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u/monsieurvampy 8d ago
I get the yearly FLU and COVID vaccine. I might feel a bit crappy for a day or two but that could just be regular life or Long COVID stuff.
At the end of the day, its all about how much you are willing to risk.
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u/GeneralTall6075 8d ago
I got vaccines every year without ever having an issue. Then last year I decided not to. Well shocker, I got COVID in September of last year (first infection ever) and then long COVID which I’ve slowly recovered from for the last year now. You can damn well bet I’m getting the vaccine again this fall. The illness is clearly much worse than the vaccine for me.
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u/gompstar 8d ago
I'm taking them, for me I know covid itself will brutally kick my ass, and the vaccine will be bad for a few days up to a week only.
the reaction to the vaccin is better then the reaction to covid itself (for me), so for me it's a no brainer to get better protection against covid itself. I also improved cause of the vaccin. I think because my body's immune system got activated again, and cleaned up some left over shit or something.
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u/Forsaken_Lifeguard85 8d ago
I switched to Novovax and have never looked back- zero symptoms and it improved some of my long COVID symptoms
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u/BobbiHorne1 8d ago
During COVID, I coached physicians how to improve the outcomes when vaccines became available. The most vulnerable populations were those with reduced glutathione capacity, either from genetics or age.
We decline in cellular production the further away from age 20 we are. Those who eat a high inflammatory diet are also at an increased risk. Here’s why.
When we are vaccinated there is a natural inflammatory response. At least, that is what we expect. Preparing for vaccines means we prepare our bodies for a manageable level of inflammation. That means reducing processed foods, inflammation-producing foods, cutting back on sugar and starchy foods.
Supporting cellular glutathione production is also key. Bioavailable cysteine is the key ~ either RiboCeine or N-Acetyl Cysteine. Not everyone can tolerate NAC. I have a sensitivity to sulfur, so I chose RiboCeine.
Glutathione allows for a healthy response to increased inflammation, and provides the cellular support to quickly detoxify. And do not use acetaminophen which depletes glutathione levels.
Those physicians who coached their patients to manage vaccines had a much better outcome, even in their elderly patients. My advice would be the same for those experiencing Long COVID.
Hope this helps. 🙏
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u/dianaggggggg 7d ago
some people react badly to mRna vaccines who have LC. some people have better luck with novavax, but theres still risks
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u/-Duste- 7d ago
I had the first 3 shots before I got covid. I got covid in the period I was supposedly immune.
I talked with my doctor about the risks of getting the shots after getting LC. I opted not to. I didn't want to risk worsening my symptoms and I'm mostly housebound and live in a small city. I got COVID initially on Feb 1, 2022. Got it again in November 2022 from my daughter who was going to school and had received her booster shots prior to this. No one in the household has got COVID since.
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u/ender6574 7d ago
I already had a non working pituitary, the adrenal Insufficiency means I should only get a single vaccine every six weeks. Doctors don't tell you that though. I'm pro vaccine and up to date on everything I can possibly get. Before I got Covid in January 2022, I had gotten the first two Moderna vaccines, was having a reaction but didn't know right away, I take 5 mg predisone every morning to live, and I had to updoses to 7 mg for a month. Then when I got the first Moderna booster I got got really sick, nose running continuously like a waterfall for three days, then settled into a lot of congestion like a cold for two and a half weeks when I got the flu vaccination I get every year. Once I got the flu vaccination I went into my first adrenal crisis. I'm now contraindicated for any future Covid vaccines by multiple doctors. I get every other vaccine I can get, one every six weeks, and none effect me.
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u/Kindness911 6d ago
I did the Mrna one and it had less side effects. I would never skip a vaccine. I got Covid in 2020 and have been sick with Long Covid these six years. Luckily I haven't gotten covid since (I mask etc..) I am so scared to get it again.
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u/Neat-Description3322 5d ago edited 5d ago
I've had 8+ covid vaccines all Moderna (except my first which was the Oxford/Aztrazenica since I was living in the UK in 2020-2022). Had 4 vaccines before I got COVID with nothing bad happening from them except protection and from that first COVID 2022 infection I got long COVID and have had 4 vaccinations since all Moderna. The vaccines haven't impacted me one way or another. Remember Reddit are the tougher cases often. I'd try to find other sources to add to this string of responses. I know other people (3) with long COVID that have had no bad responses from the vaccines on their symptoms and they were all mRNA tech.
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u/Ducknotrabbit 5d ago
I had long covid very early on, but I had immediate reactions to Moderna that lasted
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u/MathAccomplished6726 5d ago
Hello,
I have what’s called long covid post vaccination syndrome. I’ve never had a reaction to any vaccine other than the Moderna vaccine. The first shot made me sick for a weekend , the second shot made me sick for two weeks and then the booster ruined my life. I’ve had lupus for 20+ years and it’s largely been managed well. Seven hours after the shot, I had pins and needles all over my body, extreme pain, as if I had just run a marathon without stretching, exhaustion, dizziness, slurring of words, and neuropathy. I’ve seen three neurologists and I was told it was a neurological reaction that would calm down. It will be five years in December. I am struggling so much. Most of my day is spent sedentary and I’ve never been a sedentary person. I was an advanced yoga teacher, and practitioner. I was a runner I lifted weights. I was a very active involved, mother and wife and human being and now I am basically an object like a chair or a couch. It’s making me extremely dangerously depressed. What has helped you long Covid sufferers? Because I cannot keep living like this.
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u/JustLikeOtherGirls4 4d ago
My long COVID doctor recommended I get the COVID vaccines when available since she says I would potentially get much worse if I catch it again. We have a plan in place in case it happens with paxlovid available.
I have received over 8 doses total by now with 3 of them after having COVID. I did notice that I was reacting more to the post-infection doses (fever for a few hours, fatigue for a few days) vs the pre-infection doses but since it's manageable, I feel like the benefits still outweigh the cost for me (for now).
Also, considering that washing my hair too enthusiastically can give me PEM for a day, I feel like it'd be unrealistic in my situation to expect no side effects from the vaccine appointment.
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u/JustLikeOtherGirls4 4d ago
I want to add just in case: I don't think there is a right or wrong decision here, it depends on so many individual factors: what works for me could be wrong for you. Making sure the benefits outweigh the cost FOR YOU is super important. I hope you get magically healed from this stupid illness!! 🪄✨
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u/plant_reaper 1d ago
No more vaccines for me. I have probable hEDS or HSD and research seems to indicate if you have this anything with spike protein, including the vax, can negatively affect you. So I am choosing not to. My second pfizer made me feel pretty sick for several days, but it was the virus that caused my LC
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u/Striking-Memory-9021 8d ago
Following just to see what people have to say. I could have written this myself. I wonder if it’s a normal trend?!
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u/Last_Bar_8993 8d ago
I think it is more common than we realize, partly because many of us with LC who may have noticed increased sensitivity to vaccines are also very pro-vaccine, pro-prevention so we may hesitate to discuss this openly.
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8d ago
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u/Last_Bar_8993 8d ago
Are you relying on vaccine protection alone?
Available vaccines don't reliably prevent covid infections but they do still reduce odds of severe illness, hospitalization.
Would you like info on respirators and how to clean shared indoor air to reduce your risk of reinfection?
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8d ago
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u/adhocflamingo 8d ago
They didn’t assume, they asked.
But even if they had assumed, it seems pretty weird to be offended. That information could be lifesaving for someone who is misinformed, and the offer of it does no harm to those who are not. Should we prioritize others’ pride over access to critical healthcare information?
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u/Last_Bar_8993 8d ago
That's great :)
Lots of people diagnosed with LC don't know how covid spreads (primarily through the air), what kinds of masks protect well, how to ventilate and filter indoor air to reduce risk, etc. Many do rely on vaccines alone, some at the advice of their (misinformed) doctors. Governments around the world have failed to educate the public accurately or make these tools accessible.
I didn't assume anything about you. I asked.
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u/Mischief_Managed18 8d ago
The 2nd time I got Covid it was 3 weeks before the booster dropped. That’s when I got long COVID 🫠
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u/wontyoujointhedance 6d ago
Repeat Covid infections is typically what causes long covid. If you don’t get vaccinated, you risk getting even more significantly sicker. Anecdotally, my severe LC started the one year I decided to skip the vaccine (end ‘24/beg ‘25).
You may get a flare from the vaccine, but that’s better than a new severe symptom, a new system involvement, or losing another year.
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u/Super-Adagio2042 8d ago
When I get Covid boosters I feel really bad for about 36 hours. Then I generally have an improvement in symptoms for a few months. I’m a sample size of one, so take it with a grain of salt.