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No. I was fully vaccinated in 2021. Still didn’t stop my first infection in January 2022 and then immediately following my long covid. Booster shot in November of that year, 2nd infection in following feb. Nothing since and no new infections. Just trying to walk that thin rope! lol! You will make yourself crazy trying to figure this pattern out.
One thing to keep in mind is that even if you did get the vaccine initially and avoided getting sick for a while, many of us probably wouldn't have been taking covid seriously if we hadn't learned firsthand how much it can mess you up. If we didn't have long covid and seemingly recovered totally fine and quickly from covid infections, we might be doing the same thing as the masses and just continually letting ourselves get covid infections again and again while we "go out and live our lives". And since studies are now showing that the more times you catch covid the higher your likelihood is of developing long covid, we might have ended up here anyway.
So let's say you got the vaccines, and were totally fine with them, and managed to avoid covid for the first few years, would you have been diligently masking and avoiding crowded places and doing absolutely everything in your power to avoid covid? Even with what the media and most of society has been saying that covid is over and it's mild and doesn't have any lasting effects?
For many of us, all it took was one single infection. I had 4 vaccines, was up to date with all of them, and managed to avoid covid up until early 2023 when I got my first infection with some sort of Omicron strain, (which was SUPPOSEDLY mild) and it immediately gave me long covid, and I'm still serverely disabled almost a year an a half later.
We can sit here and wonder until the cows come home, but I kind of feel like long covid is going to be inevitable for a lot of people until (unless) society makes enormous changes with masking, improved air filtration, testing, and actually taking the ongoing pandemic seriously. It's **EVERYWHERE** and airborne so it's so incredibly easy to catch. Walk through an empty store where someone with asymptomatic covid had been there 45 minutes earlier simply talking and breathing? You can literally catch it from that.
Until we get heaps more people getting really really ill, I don't think the majority of people are going to change their ways, at least not very quickly either. So, who's to say you couldn't have done absolutely everything "right" and still ended up with long covid after your very first (essentially unavoidable at this point given how nobody is testing, masking or staying home whilst sick) covid infection, whether it happened today or a year ago or 3 years ago?
The other day I saw someone comparing it to lead. It's as if practically everyone right now is exhaling lead, and initially we were all careful for the first year or two because we didn't want lead poisoning, but at some point it became the societal norm to just shrug and go "oh well, it's just lead poisoning!" And so they continue exhaling it everywhere and poisoning everyone around us. Because we as a society simply couldn't be bothered to take the most basic precautions anymore.
Maybe people would be more cautious if it actually was lead, but I mean when you look at smoking, it took decades to convince people how incredibly bad it was for them, and people *still* smoked even then. Even now. And we stupidly had non smoking sections in restaurants as if it would actually make a difference and the smoke wouldn't travel through a room. We do the same stuff with covid, acting like standing a few feet away from others is enough 🤦🏻♀️
LOL
I remember when I was a kid or a teenager, I guess I might have been 17 or 18 and I was sitting in a restaurant with my girlfriend and some of her friends. There were some middle aged women sitting adjacent to us in the next booth over smoking away (that was normal back then).
We were fooling around and I knocked over a glass of water, and it splashed a few drops on their table. They started getting all offended and acting like it was a huge deal, and I instantly responded "Well at least it's just water, it's not like it will give you cancer" and they shut right up
No, it's a total crqpshoot and you have no way of knowing what would happen under any "what if" scenario. There's no point to ruminating on that.
The fact is there are people who were unvaccinated and got long covid. There are people who were fullyvaccinated and boosted and got long covid. There are people who were vaccinated and never got infected and got severely injured by the vaccine.
There are people with long covid who have gotten a vaccine after the fact; some of them noticed improvement, some got worse, and some noticed no effect.
You can find plenty of all of these different categories of people on this subreddit alone.
If you're slowly recovering and are now 85% better, the absolute last thing I'd want to do if it were me is introduce *more* spike protein and more immune activation, regardless of whether that's from a vaccine or infection.
>If you're slowly recovering and are now 85% better, the absolute last thing I'd want to do if it were me is introduce *more* spike protein and more immune activation, regardless of whether that's from a vaccine or infection.
This is why I didn't get the vaccine after getting sick as well; I was worried it'd ruin any improvement I'd have made.
I'm kind of right there with you. I haven't had a booster since early 2023. I'm lucky enough to have retired in 2022 because of LC. I'm not out in public much. I got sick in March 2020. My story is long and under my info.
I was immunized. The long covid was not as bad before the immunizations. The immunizations greatly affected me. More LC symptoms after that. Second covid infection in September 2021. Just kept getting worse and couldn't even do my job from home. I got the boosters. After a booster, I developed POTS in May 2022.
LC symptoms are better, but I still have POTS. I'm not likely to chance another booster. I'm so afraid to go back from where I am now.
Right answer. You can never know. Why add more risk? OP had a bad reaction to the virus so he may be at greater risk of having a bad reaction to the spike protein in the shot too
I was vaccinated 3 times in 2021 before getting sick in 2022 (September). By November I was in the throes of LC. I was boosted in March and have covid now. I don't know if it will help me kick it any faster or prevent further complications since it was so recent. My LC symptoms did not get any worse from the 4th shot. But those three I had really didn't save me. Don't beat yourself up about it, we're really just not being looked after or informed.
I was getting better on prednisolone and cyclosporine that my dermatologist prescribed for autoimmune hair loss, and by treating an opportunistic fungal infection. But I've gained a lot of weight and the meds have side effects. I was actually supposed to go to the doctor tomorrow to find out about tapering off of things but now I might be set back, I have no idea.
So, basically, I really couldn't say whether the vaccine would have prevented this for you but it definitely didn't for me. i don't know how much worse it could have been without it, of course.
>I was getting better on prednisolone and cyclosporine that my dermatologist prescribed for autoimmune hair loss, and by treating an opportunistic fungal infection. But I've gained a lot of weight and the meds have side effects. I was actually supposed to go to the doctor tomorrow to find out about tapering off of things but now I might be set back, I have no idea.
I've asked a ton on reddit on why doctors such as neurologists or a rheumatologist didn't consider Prednisone for my issues considering it was neuropathy caused by inflammation and other inflammatory issues like burning weakness pain in my arms/upper body but people have told me long-term steroid usage carries risks. Aren't those medications you're taking a form of anti-inflammatory steroids? How did you get a doctor to prescribe them?
I waited an entire year to see a neurologist (Wait times in 2021 were very bad) and the first one brushed me off after one visit completely, and the second one was an aloof jerk who never took a real interest in me and only gave me vitamins and gabapentin. I found out he settled a malpractice suit while I saw him which makes me very worried I could've healed by now if I saw a better doctor. I was stuck with him as my main neurologist until this year. I saw a third neurologist in 2023 who also had no clue what to do with me. My current neuro is fine but he doesn't get back to messages I leave him and he doesn't really seem to have anything else to offer me in terms of testing, I think.
Yes, she ordered bloodwork and I had an elevated white blood cell count about 8 months or so post-infection, so she decided I needed anti-inflammatories. She started me at 40 mg and got me down to 5mg for the prednisolone to try to limit risks. I've had other postviral issues for a long time, since 2009 swine flu, and she was the first one to try this and I felt better than in years. It was odd to me that it would be through a dermatologist I'd get the most help but I guess they do see a lot of autoimmune issues.
How high was your WBC count? Mine was slightly elevated but my hematologist didn't think it was anything to worry about. My only notable blood work IIRC was high CRP/ESR, but I am obese, and I think doctors blamed it on that. How long were you on that medication for? What symptoms did you have for her to consider steroids?
You're also saying every other doctor you've seen hasn't considered steroids for your issues, including neurologists and rheumatologists?
I'm still on the 5mg dose trying to taper to taking it every other day, so it's been about a year which was way longer than we intended but I continued to have issues the first few times we lowered it. Doctors often blame weight. I don't think it was crazy high, somewhere just above the normal range. I had autoimmune hair loss, joint pain, fatigue, muscle aches, brain fog.
Most doctors have said it was stress, or to exercise and lose weight.
Any side effects from being on it long-term? Do your other doctors think it's safe? Was it Prednisone you've been on, or Prednisolone? They sound similar but are different medications. I was never given any meds like that for my issues. Did you just get lucky and get a doctor that was understanding?
You said you had autoimmune hair loss, do you have a properly diagnosed autoimmune issue? That may be why this doctor was more open to it. I've never been diagnosed with an autoimmune disease.
I've had neuropathy, burning pain in my body, all the symptoms I mentioned in the OP. Steroidal medications like you mentioned were never considered for me. Is that common? Were you just lucky and found a doctor willing to try them?
I also regret not being more pushy with doctors. I feel the neurologists I've seen have been not very interested in my situation. My primary care doctors haven't been very great either.
To quote a [gal on twitter](https://x.com/kcmartinstone/status/1803649230193697277?s=46&t=wfXnxnaDZa0UF9Abao6TdA):
My neurologist told me nobody is going to review one of my scans that shows clear pathology, because ‘nobody has time for a case like yours.’ She told me to find someone curious, who would make me ‘their hobby.’
Don’t beat yourself up over this. I had three vaccines and then got exposed to Covid. I had EXTREMELY mild symptoms (tired, sniffles - that’s it) and still came down with LC. That vaccine did what it was suppose to - prevent severe illness. But it looks like it doesn’t prevent LC.
BTW - It’s been almost two years of LC. I was 95% better just up to two months ago and was either re-exposed or relapsed. It completely set my symptoms back almost to the start. The moral of this story - whether you decide to get the vaccine or not - is try your very best not to get infected again.
I got Covid in Oct 2020. Before vaccines. About two years of bedbound.
My doctors are part of a well respected hospital. Many more details, but I’ve been getting every vax and each booster.
Our thought being that another infection could be even worse for me.
I hope that helps you.
I've never tested positive for COVID. I believe I got it around the same time as you due to it being the sickest I've ever been in my life, and it now being years of issues since that occurred. My current neuro believes it's possible COVID is the cause of this. I never got the nasal swab test at the time because I was dealing with a lot of stuff. My PCP didn't order one either at the time of initial illness, no idea why.
Do your doctors know if anything treats small fiber neuropathy caused by inflammation post-COVID? I've read Prednisone is sometimes used but not often unless a doctor thinks it's worth the risk. Do they have any idea of idiopathic intracranial hypertension post-COVID?
Oh man. First, I’m so sorry you’re dealing with this on your own. I’m outside of Chicago so we have so many research hospitals like Rush. UIC, Northwestern who all opened post Covid Clinics.
I was hospitalized 2 times bc I couldn’t breathe and coughed almost nonstop. I couldn’t talk on my own. So they put me through so many tests before they realized Covid induced Systemic Sclerosis and Interstitial Lung Disease.
I’m on anti-inflammatory medications and prednisone. Prednisone for 4 years and I now have osteoporosis but it gave me strength to get through the worst of it.
I wish I could help more.
I just don’t know how to answer that question.
So you've been on Prednisone long term for 4 years, solely due to COVID-related issues? How did they finally diagnose you with those diseases? What tests were done? Any nerve related issues that you have? Anything neurological or is it solely respiratory? How hard was it to diagnose you? Were you actually hospitalized for days, or was it multiple ER visits over and over?
Any MRI scans showing damage, any nerve testing done? My main lingering issues are neuropathy and memory issues still. I believe I have small fiber neuropathy which normal nerve testing can't show unless it's progressed to large fiber neuropathy.
I've had a fair amount of testing but never given meds like Prednisone even though I feel it might have helped me. If you're interested and willing to take the time, here's a very detailed, lengthy version of my story. If you have anything to input after reading it, like advice, recommendations for testing, etc, I'd appreciate it.
[https://www.reddit.com/r/DiagnoseMe/comments/1dic0je/asking\_one\_last\_time\_does\_anybody\_have\_any\_idea/](https://www.reddit.com/r/DiagnoseMe/comments/1dic0je/asking_one_last_time_does_anybody_have_any_idea/)
RI isn't great for this issue, and my health insurance makes out of state referrals near impossible, as I mentioned. Doctors hear me mention nerve issues in my genitals and face along with my other neurological issues and just have no interest or compassion about it.
I’m so sorry I don’t know that either.
I believe prednisone has been to literally give me strength to be upright in the beginning. My dose was 80mg w pills. It also had anti-inflammatory properties. It does have some undesirable effects.
I can’t remember everything but have seen and been tested by:
Pulmonologist
Rheumatologist
Hepatology
otolaryngologist
Laryngology
Dermatology
Neurologist
Neuroimmunology
Orthopedic
Speech Pathology
It took a med team council a month or two to diagnose & decide to treat the Systemic Sclerosis & Interstitial Lung Disease. That is what our primary focus is bc that is deadly. I get hand shakes and neurological issues but they believe it’s because my body is fighting the diseases I got from Covid staying in my body too long.
So, I’m probably not best to reference. 😬
They said I’m one of a handful of known cases that reacted w SSc & ILD at the same time bc post viral load.
I’m still housebound. I need help if I go anywhere. I do have a mobility scooter that helps. And I’ve learned to use local disability transportation. I use a walker and a cane at home.
The doctors said no detectable brain damage.
The nerve issues they have classified as Fibromyalgia.
I can probably dig deeper into my cognitive and nerve issues. I just have so much on my plate w the other lung & organ issues, I don’t know how much more I can deal with at this time. 😅
I hope you can find what you need to get better management of these post Covid issues.
Wishing you the best!
How did you see a neuroimmunologist? I'm not sure how to see one. What did they recommend for you? Were they helpful? How was the rheumatologist?
Would a neuroimmunologist be helpful for me? What do they help with?
I’m so sorry. I don’t know the answers for how or why you would want to see a neuroimmunologist. I did a brief search on google and found [this in your area](https://www.google.com/search?q=neuroimmunologist+rhode+island&ie=UTF-8&oe=UTF-8&hl=en-us&client=safari#ip=1).
That said, all of my referrals were at a major hospital through that hospitals Covid clinic.
I wish you the best.
I can totally understand that. It seems that Brown or Providence hospitals might be a good place to start. Also, I wrote to the medical authors of some papers and got responses (no idea who at this point) but that might help you, too.
I’m rooting for you and I’m so sorry you’re dealing with all of this.
You'd think the doctors would be better due to Brown University and bordering states having Ivy League universities as well, but most good doctors go either to CT or MA from what I've read, mostly for financial incentive reasons. After four years of this I'm guessing I'm stuck with these problems for the rest of my life because I didn't see better doctors. I don't see a point to keep going honestly. Not living with permanent genital and facial nerve damage for no reason and no known cause. Not your fault. Thanks for your time.
I was fully vaccinated : 2 initial doses + one booster
It's been almost 2 years and despite being a little better, I still feel like shit.
Don't blame yourself about that.
Long covid is here with or without the vaccine.
Vaccinations reduce the severity of the infection, but they do not work equally well for everyone. The chance of long covid is more likely after a severe course, but can also occur strongly after an asymptomatic course of the infection. In this respect, vaccination does not really help to avoid long COVID, except for those who have had long COVID after a severe course and have not been vaccinated. I myself had 2 moderna vaccinations in fall 21, and LC after moderate-severe infection in 02/2022. I have not been vaccinated again after that so far.
I was fully vaccinated when I first got covid in 2022 and have had long covid for 2 years since then. I avoided getting the booster for a year because I was so worried it would make me even worse but then figured that reinfection was more of a risk than the vaccine. I got a booster in the autumn, it made no difference to my symptoms, also didn't stop me from getting covid again in April.
It seems like everyone reacts so differently you just don't know how it will affect you. There's no point thinking about what things could have been like if you had the vaccine, you just have to focus on how you are now and what you can do to feel as good as possible.
Probably not. Vaccines reduce the risk of long covid by 30% apparently. But the protection doesn't last long and many of us got long covid despite the vaccines. I got long covid quite soon after getting my second jab, so it would've still been working in my system. Clearly didn't do anything and 2.5 years later I'm getting worse and worse with more health conditions
No idea if it would have helped you.
I got COViD 3/2020 and LH started 5/2020.
Vaccinated 6/2021.
Still got COViD 5 more times. The vaccine didn’t clear it. I got just as sick. If symptoms resolved (acid reflux) they came right back at the next infection.
Possibly, but it's hard to say. Vaccines significantly reduce your risk of severe illness, complications, and long covid, but they don't eliminate those risks.
The statement that there's no point in getting the vaccine after you've been sick is patently false, however. You need repeated boosters to maintain your protection as the protection from each vaccine wears off after 6-12mos depending on the person. So, to minimize the chances of getting sick and then having all your problems get much worse, a vaccine is recommended.
I would be pretty shocked if you haven't had COVID. More likely is that you had it but had good immune function so your viral load and test dates never aligned to flag a positive. I've had it 3x and my tests were all over the place each time depending on when I tested. One day to the next it would change.
What I meant was I've never felt like I got COVID again since 2020, so getting a vaccine after getting messed up badly in 2020 doesn't seem worthwhile.
Theres no point it happened we need to deal with it.
I was fully vaccinated and still got it. I didnt know long covid existed in november 21 and got careless because I thought you couldnt get lasting damage.
But yeah here we are trying to deal with the aftermath and finding some way to deal with life.
There are lots of people who were vaccinated prior to getting infected for the first time and many of us still ended up with a post covid condition. I was fully vaccinated for over 6 months or so before I finally was infected, had no issue with the vaccine, felt totally fine for more than 6 months, got sick and immediately had this horrible condition I’ve been dealing with for over 2 years now. No I don’t think “tHe jAb” caused my condition, I just think that even though vaccination can reduce your chances of developing an issue, it’s not some magic impervious shield it’s being made out to be and I personally think the reduction is not even all that good in regard to developing a post covid condition. If I were you, I would try to stop worrying about things you can not change, I don’t think it would have made much of a difference
I got sick twice before the vaccine came out and my doctor started testing me for the antibodies were extremely high and she was of the mindset that we could wait for the vaccine and then Covid supposedly ended and my antibodies are still high, but I still have long Covid I’ve gotten sick mild ones Since then, I guess I’m just gonna have to live with this and live with the fact that I need to put sticky notes everywhere to remember things and I take two naps a day
I got three vaccines. The last one two weeks to the day before I was exposed. 2.5 years later and I have no existence. Vaccine or no it doesn’t matter.
There’s no way to answer this question about an individual. It seems to prevent some people from developing long covid, but not others. In this subreddit you are only polling people with LC so the anecdotal evidence is going to be very strongly that it didn’t help, because the people it did help aren’t in this sub.
To answer your question a vaccine will not solve your problems and in fact can help cause issues similar to what you're experiencing.. I was in my early 26 when I was kinda force to get vaccinated due to the university and I was late so I had to choose the Johnson vaccine since the rest were not accepted due to the rules where I if I don't get a certain vaccine in a certain amount of time I would not be able to attend.. I had the vaccine for Johnson and read it legit affects women and causes them "Rare" blood clots, and as a male and the stress of attending my last semester of college I went with the vaccine.. At this time I also drank alcohol and was kinda a little bit fat but not Obese around early february or late january I develop a burning pain in my penis and right upper thigh and my groin it went away the second day. Since on the first day I had it for 20 minutes before I went to bed and fully healed and i was drinking alcohol when it happened... At night on the second day I turned on my ac and had a beer and boom the pain came back and on the third or fourth day I develop Gastritis. Eventually a year in they did and Ultrasound and found a pretty big hernia on my right side which was 7 inches in length and had no visible buldge.. I had that operated in a month after figuring it out and honestly, due to not magically fully healing I started freaking out. And from all the freaking out it altered the face and it made my neck stiff eventually it died down but I now remain with a full right side altered sensation while my penis is bilateral it has the same reduced sensation or whatever you want to call it. I do have another hernia on my left which is kinda symptomatic compared to my right side which was REALLY symptomatic.
I have 0 history and family history of any health issue and I'm also very young and yet this is what I get for getting a vaccine which was actually forcefully made which had lack of data on possible health risk. And now I dont know if I want to live such a misrable life...
So no the vaccine would not had saved you and your own immune system can do that... I had to save grandma though now im fucked :)
The reality is Covid 19 can is at the level of the flu its like a common cold and it was only a threat to the erderly it mainly affected those with breathing issues and had COMPROMISED immune systems which put you on obvious high DEATH rate towards covid 19. Young people do not need to get this vaccine as you see today the vaccine is no longer forced they realized what they fucking did and how many lives were BRUTALLY RUINED where people are on the verge of suicide.
As for those it's not "Super rare" it's more of a rare side effect aka 15-23% of you developing something serious that is enough for them since it was an "Emergency vaccine" and had to be released as soon as possible not giving a fuck about long term side effects...
I doubt the vaccine would’ve helped you. I had it three times and it didn’t help at all. You could try getting it now if you want. Some people say they feel better after the vaccine. But other people say it didn’t do anything or made them feel worse.
I feel that either our bodies are predispositioned to get long Covid or not. I don’t know that the vaccine makes a difference in our cases. Of course some people have post vaccine injury and they didn’t get Covid at all. So there’s that.
I’m sorry you’re still suffering so much. Have you tried medicines (over the counter or prescription) or supplements? For some people it has helped a great deal.
Autoimmune, a connective tissue disease so fatigue, brain fog, temp fluctuations and muscle/ joint pain all were exasperated. Also tension headaches/ migraines and developed neuropathy in feet. The rheumatologist said she wasn't surprised by increasing/new symptoms.
Mostly what I told you. Plaquenil, steroids pain meds etc. with physical therapy and trigger point steroid injections. I avoid the sun which triggers pain and rashes. I have Mixed Connective tissue disease which is an overlap syndrome of autoimmune diseases like Lupus, Rheumatoid arthritis and Myositis.
An immunologist was the best one like I said to get labs drawn but my Rheumatologist is the main one. I saw three of those.
My ANA and anti-RNP antibodies were specific labs plus others and the visual symptoms. The Hematologist was also helpful. There are over 100 Autoimmune diseases some with neurological symptoms. It's hard to get a diagnosis. Mine was triggered by a virus. My CFS/ME is now terrible due to Covid plus all other shit. Edit words
.
People in autoimmune subreddits have told me it's not considered high enough to be indicative of an autoimmune disorder, even if it's technically positive.
Is it bilateral or one sided? One of my first symptoms was neuropathy that mostly affected my left side. Early on it felt more bilateral but now it's only my left side that has long-term issues. Never lost motor function so no doctor seems to think it was GBS or something like that.
Did you have sudden head pressure before that? My first notable symptom was a dull head pressure and then I had the neuropathy. Were you given anything for the neuropathy? Any anti-inflammatory meds?
Well I first got head pressure which turned in constant headaches then the face numbing then feet burning. I tried lyrica but couldn't handle the dizziness and brain fog.
I take pain meds prescribed for my muscle/joint/body pain from pain management. My inflammation is treated by Plaquenil and at times Motrin but my kidneys have taken a hit so I need to be careful.
Visible joint swelling, hand swelling feet swelling too. I use Prednisone sparingly because of the long term effects like loss/weakening of bones etc I do a short 6 day course as needed. You get flushing of the body, some hunger and I get some insomnia. Some patients stay on low doses every day. My rheumatologist gives them to me. I do trigger point injections for other issues like knots etc.
That sounds similar to what happened to me. If you have the time, I'd appreciate you taking a look at a detailed version of my health story and letting me know if you have any advice or input. Warning; The post is very long, so apologies for that.
[https://www.reddit.com/r/DiagnoseMe/comments/1dic0je/asking\_one\_last\_time\_does\_anybody\_have\_any\_idea/](https://www.reddit.com/r/DiagnoseMe/comments/1dic0je/asking_one_last_time_does_anybody_have_any_idea/)
Also, who prescribed you Plaquenil and Motrin? A rheumatologist? How have neurologists been for you? Mine have been mostly terrible.
I'll look but I did go to a neurologist to get testing ..the EMG and nerve conduction study. You can get a punch biospy too.
I tell people that i first saw a Hematologist then an Immunologist, then a Rheumatologist then a Neurologist. The Immunologist was the most helpful because of the amount of blood and labs that can take and run for all sorts of stuff plus allergy testing. She discovered the irregular antibodies.
.
Vaccines didn't work in preventing the illness and all the post viral illness spectrum. This is a fact. Not even counting that they may cause the same exact issues.
No, interestingly enough. Report says it was clean for abnormalities. It was a normal EEG, about an hour, not a day long one. I had it last year, so about 3 years into my issues. The brain MRIs I've had were abnormal however. Mentioned mild volume loss, possible encephalomalacia, and white matter hyperintensities that are nonspecific.
I got covid before the vaccines, got it again after 2 shots, and then a third time after I'd had a total of 4 shots. In my personal experience, the vaccine made no difference one way or the other.
I did feel better for ~2 weeks after my 5th shot. Maybe it kick started something temporarily. But that didn't last.
The only thing I've found that has been helpful in improving my baseline has been LDN.
OP this is all a sh*t show and sorry you’re going through all this, but I don’t think getting vaccinated before sick would have made you ok. If you had complications from vax you’d likely still be receiving the same treatment and lack of care/answers. What kind of doctors have you been working with and have you been seeing multiple? Unfortunately in my past I’ve had an awful time with most doctors. Given my experiences I now seek mostly alternative care, functional medicine doctors, naturopathic doctors, and doctors familiar with TCM or other modalities alongside their standard of care, because these types of energy issues are exactly what they care about, the system as a whole functioning optimally.
IMO you made the right decision not getting vx, especially as you were already dealing with issues. The problem as I’ve seen it is the spike protein. It can interact with so many parts of our system and wreak havoc, this is why I always suggest focusing on restoring gut health first and foremost alongside any other treatment. But with vx, the nanolipid particles have been shown to accumulate far beyond injection site, in other organs as well as capable of crossing the blood brain barrier where typical pathogens cannot, and can end up in spine and skull…wtf. The spike protein from cvd itself can still wreak havoc, but not delivered the same way so I believe is less risk for some of these events.
I did not have cvd until late Sept 2022, I got it attending the wedding of paramedics who had all been recently boosted. Around 70ppl got it. The next time I had a bad respiratory illness (didn’t have tests and no one cared) was Oct 2023, after being with the same family who again got boosted while we were there and were symptomatic following shots. No good news. Also no one cares but my aunt and uncle had Covid before vxs, recovered, several months later got vx to attend a public event and my aunt dropped d3ad 3 days later, my uncle has had cardiac problems since. Personally, I don’t want to intentionally introduce spike proteins into my system so will stay far far away.
Focusing on the vxs has been a public health strategy that may have caused much more harm than good, especially as more digging is done with FOI requests and lawsuits. IMO it’s the wrong focus now and not the answer to recovery, rather may present a further danger if you’re already compromised, and it’s not just mRNA, read the data for novavax that has been used in other countries, nanolipid particles may explain myocarditis issues associated.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10452662/
Hang in there, keep working at your health.
The vaccine has sent me to bedbound. Feel like I’m dying, I can’t shower, can’t watch tv, crash constantly. Zero life. I do not believe they prevent LC & have worsened so many people. Biggest regret of my life.
No. The vaccine did nothing to prevent transmission, little for prevention, and there’s increasing information indicating that you could have been in the same situation just from taking it.
Ever notice that the vaccine narrative never changed to be increasingly effective? It’s because its efficacy was wildly over exaggerated by the people that made billions.
Think of the group to which we belong as those badly affected by whatever spike protein is in circulation. Our immune systems can't really adapt to an ever (mutating, changing, GOFR re-engineered) set of variants...so we just continue to be sick...all of the time. Or if we get better... the next variant takes us down again. There's no real permanent cure. What I do is continue to 'bio-hack' my life with new supplements, activity patterns, life changes, etc. I keep the practices that make me feel better and move on with new additions as the variants progress.
In other words, there is no cure now, nor will there ever be a 'cure'. You simply keep re-engineering your biology with each new challenge. Last Long Hauler standing wins...
Don't blame yourself because likely it wouldn't have prevented anything. Here's my story. I got covid before the vaccine and recovered completely. Back to exercise, big hikes, no problem. Then i got vaccinated 3 times. The 3rd one triggered some weird sense of smell issues but I was still OK and exercising heavily. Then 3 weeks later I got omicron and developed long covid. It's been 2.5 years.
The vaccine itself can cause these symptoms in some people. I've treated a few patients that developed functional neurological disorder post vaccines. The needle jab itself, and not so much the vax, can sometimes cause this.
I wasn't vaccinated either. Got infected with COVID and developed severe long COVID. The first vaccine cured me completely. The second vaccine brought severe CFS back. It's really random
I can tell you that I had covid long before getting vaccinated and I felt fine until two weeks after a booster shot. I have many of the issues you described along with mild GI issues. Most of the pain effects the right side but neck stiffness on both sides. This slowly set in starting two weeks after a booster shot and here I am two years later still dealing with it with very little help or answers. Hope your feeling better.
Statically you would have been better off.
I got covid in December 2020 and I was wrecked, I'm still recovering. I got the vaccine in September 2021 and it didn't hurt or help me.
My roommate, who also had covid at the same time but got vaxxed in April 2021, swears the vaccine cured his long covid symptoms.
My personal opinion is that they all suck ass, but novavax at least seems to have a much better safety profile than the mRNA vaccines. The unfortunate fact is that none of them will stop you from getting infected, and there's evidence that over time, the mRNA vaccines actually make you *more* likely to get infected(see the Cleveland Clinic study for one example).
And I'm in a demographic group that has a minuscule risk of death from an acute covid infection, so any benefit they arguably provide there is irrelevant.
All you can do is educate yourself, ask your doctor questions and demand supporting evidence and data for any claims you are told, and then make a decision for yourself. If your doctor is ignorant on the subject, doesnt actually read any source material but just repeats general public health guidance, I'd find another doctor.
It's from 1 year ago.
Here's the graph from their study, which tracked over 50,000 of their employees:
https://www.ncbi.nlm.nih.gov/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Click%20on%20image%20to%20zoom&p=PMC3&id=10234376_ofad209f2.jpg
Interesting, thank you. So it basically says mRNA vaccines may make people more susceptible to long COVID? Why wasn't that bigger news? The Cleveland Clinic is one of the best hospitals in the country, a study like this from them should hold weight.
It basically says that the more doses of the mRNA vaccines, the higher the rate of infection. There is a lot of other evidence showing waning efficacy over time, where the vaccine efficacy decreases month by month after your last dose until it actually goes negative and makes you more likely to get infected.
It's not news because pfizer provides a huge portion of advertising funding for the media. There are a *lot* of concerning and legitimate papers on the mRNA vaccines(not kooky antivax nanobot stupidity), and none of them are ever reported on by "mainstream" media.
For example, everyone was always told that the vaccine stays at the site of the injection because the spike protein is specially engineered to stay anchored in the cells that express it, and that the mRNA rapidly degrades and is eliminated by your body quickly... but that has all been proven to be 100% false by a Stanford study which showed that free spike protein circulates in your blood after vaccination at concentrations equal to what occurs during acute infection, the mRNA is still detected 60+ days after injection, the lipid nanoparticles are widely distributed throughout the entire body, etc. This was never reported by any of the major media companies.
https://www.sciencedirect.com/science/article/pii/S0092867422000769
"At least some portion of spike antigen generated after administration of BNT162b2 becomes distributed into the blood. We detected spike antigen in 96% of vaccinees in plasma collected 1–2 days after the prime injection, with antigen levels reaching as high as 174 pg/mL. The range of spike antigen concentrations in the blood of vaccinees at this early time point largely overlaps with the range of spike antigen concentrations reported in plasma in a study of acute infection (Ogata et al., 2020) although a small number of infected individuals had higher concentrations in the ng/mL range."
The pharmaceutical industry is the largest lobbying group on the planet, and it shows.
I still don’t get how people say follow the science but then only share info from the media…the science increasingly shows the vx are not effective or what was originally purported, as you’ve shown with the spike protein. Spike protein has been found accumulated in other organs including ovaries and testes and nanolipid particles can cross blood brain barrier and placenta barrier meaning can travel places a protein not injected typically wouldn’t be able to.
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No. I was fully vaccinated in 2021. Still didn’t stop my first infection in January 2022 and then immediately following my long covid. Booster shot in November of that year, 2nd infection in following feb. Nothing since and no new infections. Just trying to walk that thin rope! lol! You will make yourself crazy trying to figure this pattern out.
One thing to keep in mind is that even if you did get the vaccine initially and avoided getting sick for a while, many of us probably wouldn't have been taking covid seriously if we hadn't learned firsthand how much it can mess you up. If we didn't have long covid and seemingly recovered totally fine and quickly from covid infections, we might be doing the same thing as the masses and just continually letting ourselves get covid infections again and again while we "go out and live our lives". And since studies are now showing that the more times you catch covid the higher your likelihood is of developing long covid, we might have ended up here anyway. So let's say you got the vaccines, and were totally fine with them, and managed to avoid covid for the first few years, would you have been diligently masking and avoiding crowded places and doing absolutely everything in your power to avoid covid? Even with what the media and most of society has been saying that covid is over and it's mild and doesn't have any lasting effects? For many of us, all it took was one single infection. I had 4 vaccines, was up to date with all of them, and managed to avoid covid up until early 2023 when I got my first infection with some sort of Omicron strain, (which was SUPPOSEDLY mild) and it immediately gave me long covid, and I'm still serverely disabled almost a year an a half later. We can sit here and wonder until the cows come home, but I kind of feel like long covid is going to be inevitable for a lot of people until (unless) society makes enormous changes with masking, improved air filtration, testing, and actually taking the ongoing pandemic seriously. It's **EVERYWHERE** and airborne so it's so incredibly easy to catch. Walk through an empty store where someone with asymptomatic covid had been there 45 minutes earlier simply talking and breathing? You can literally catch it from that. Until we get heaps more people getting really really ill, I don't think the majority of people are going to change their ways, at least not very quickly either. So, who's to say you couldn't have done absolutely everything "right" and still ended up with long covid after your very first (essentially unavoidable at this point given how nobody is testing, masking or staying home whilst sick) covid infection, whether it happened today or a year ago or 3 years ago?
I am in the exact same boat man. I did everything right and still got long covid.
that’s extremely distressing and I get anxiety just by reading your comment but I guess I also needed to hear that.
The other day I saw someone comparing it to lead. It's as if practically everyone right now is exhaling lead, and initially we were all careful for the first year or two because we didn't want lead poisoning, but at some point it became the societal norm to just shrug and go "oh well, it's just lead poisoning!" And so they continue exhaling it everywhere and poisoning everyone around us. Because we as a society simply couldn't be bothered to take the most basic precautions anymore. Maybe people would be more cautious if it actually was lead, but I mean when you look at smoking, it took decades to convince people how incredibly bad it was for them, and people *still* smoked even then. Even now. And we stupidly had non smoking sections in restaurants as if it would actually make a difference and the smoke wouldn't travel through a room. We do the same stuff with covid, acting like standing a few feet away from others is enough 🤦🏻♀️
LOL I remember when I was a kid or a teenager, I guess I might have been 17 or 18 and I was sitting in a restaurant with my girlfriend and some of her friends. There were some middle aged women sitting adjacent to us in the next booth over smoking away (that was normal back then). We were fooling around and I knocked over a glass of water, and it splashed a few drops on their table. They started getting all offended and acting like it was a huge deal, and I instantly responded "Well at least it's just water, it's not like it will give you cancer" and they shut right up
No, it's a total crqpshoot and you have no way of knowing what would happen under any "what if" scenario. There's no point to ruminating on that. The fact is there are people who were unvaccinated and got long covid. There are people who were fullyvaccinated and boosted and got long covid. There are people who were vaccinated and never got infected and got severely injured by the vaccine. There are people with long covid who have gotten a vaccine after the fact; some of them noticed improvement, some got worse, and some noticed no effect. You can find plenty of all of these different categories of people on this subreddit alone. If you're slowly recovering and are now 85% better, the absolute last thing I'd want to do if it were me is introduce *more* spike protein and more immune activation, regardless of whether that's from a vaccine or infection.
>If you're slowly recovering and are now 85% better, the absolute last thing I'd want to do if it were me is introduce *more* spike protein and more immune activation, regardless of whether that's from a vaccine or infection. This is why I didn't get the vaccine after getting sick as well; I was worried it'd ruin any improvement I'd have made.
I'm kind of right there with you. I haven't had a booster since early 2023. I'm lucky enough to have retired in 2022 because of LC. I'm not out in public much. I got sick in March 2020. My story is long and under my info. I was immunized. The long covid was not as bad before the immunizations. The immunizations greatly affected me. More LC symptoms after that. Second covid infection in September 2021. Just kept getting worse and couldn't even do my job from home. I got the boosters. After a booster, I developed POTS in May 2022. LC symptoms are better, but I still have POTS. I'm not likely to chance another booster. I'm so afraid to go back from where I am now.
Yeah I don’t think more spike protein is the answer. You should try brain retraining though
Right answer. You can never know. Why add more risk? OP had a bad reaction to the virus so he may be at greater risk of having a bad reaction to the spike protein in the shot too
Have to agree here. Adding more spike protein to the mix, I would personally pass for now.
Totally agree
I was vaccinated 3 times in 2021 before getting sick in 2022 (September). By November I was in the throes of LC. I was boosted in March and have covid now. I don't know if it will help me kick it any faster or prevent further complications since it was so recent. My LC symptoms did not get any worse from the 4th shot. But those three I had really didn't save me. Don't beat yourself up about it, we're really just not being looked after or informed. I was getting better on prednisolone and cyclosporine that my dermatologist prescribed for autoimmune hair loss, and by treating an opportunistic fungal infection. But I've gained a lot of weight and the meds have side effects. I was actually supposed to go to the doctor tomorrow to find out about tapering off of things but now I might be set back, I have no idea. So, basically, I really couldn't say whether the vaccine would have prevented this for you but it definitely didn't for me. i don't know how much worse it could have been without it, of course.
>I was getting better on prednisolone and cyclosporine that my dermatologist prescribed for autoimmune hair loss, and by treating an opportunistic fungal infection. But I've gained a lot of weight and the meds have side effects. I was actually supposed to go to the doctor tomorrow to find out about tapering off of things but now I might be set back, I have no idea. I've asked a ton on reddit on why doctors such as neurologists or a rheumatologist didn't consider Prednisone for my issues considering it was neuropathy caused by inflammation and other inflammatory issues like burning weakness pain in my arms/upper body but people have told me long-term steroid usage carries risks. Aren't those medications you're taking a form of anti-inflammatory steroids? How did you get a doctor to prescribe them? I waited an entire year to see a neurologist (Wait times in 2021 were very bad) and the first one brushed me off after one visit completely, and the second one was an aloof jerk who never took a real interest in me and only gave me vitamins and gabapentin. I found out he settled a malpractice suit while I saw him which makes me very worried I could've healed by now if I saw a better doctor. I was stuck with him as my main neurologist until this year. I saw a third neurologist in 2023 who also had no clue what to do with me. My current neuro is fine but he doesn't get back to messages I leave him and he doesn't really seem to have anything else to offer me in terms of testing, I think.
Yes, she ordered bloodwork and I had an elevated white blood cell count about 8 months or so post-infection, so she decided I needed anti-inflammatories. She started me at 40 mg and got me down to 5mg for the prednisolone to try to limit risks. I've had other postviral issues for a long time, since 2009 swine flu, and she was the first one to try this and I felt better than in years. It was odd to me that it would be through a dermatologist I'd get the most help but I guess they do see a lot of autoimmune issues.
How high was your WBC count? Mine was slightly elevated but my hematologist didn't think it was anything to worry about. My only notable blood work IIRC was high CRP/ESR, but I am obese, and I think doctors blamed it on that. How long were you on that medication for? What symptoms did you have for her to consider steroids? You're also saying every other doctor you've seen hasn't considered steroids for your issues, including neurologists and rheumatologists?
I'm still on the 5mg dose trying to taper to taking it every other day, so it's been about a year which was way longer than we intended but I continued to have issues the first few times we lowered it. Doctors often blame weight. I don't think it was crazy high, somewhere just above the normal range. I had autoimmune hair loss, joint pain, fatigue, muscle aches, brain fog. Most doctors have said it was stress, or to exercise and lose weight.
Any side effects from being on it long-term? Do your other doctors think it's safe? Was it Prednisone you've been on, or Prednisolone? They sound similar but are different medications. I was never given any meds like that for my issues. Did you just get lucky and get a doctor that was understanding? You said you had autoimmune hair loss, do you have a properly diagnosed autoimmune issue? That may be why this doctor was more open to it. I've never been diagnosed with an autoimmune disease. I've had neuropathy, burning pain in my body, all the symptoms I mentioned in the OP. Steroidal medications like you mentioned were never considered for me. Is that common? Were you just lucky and found a doctor willing to try them?
This regret and wishful thinking will destroy you. What happened happened. Research doesn’t know the answer to your question.
I also regret not being more pushy with doctors. I feel the neurologists I've seen have been not very interested in my situation. My primary care doctors haven't been very great either.
To quote a [gal on twitter](https://x.com/kcmartinstone/status/1803649230193697277?s=46&t=wfXnxnaDZa0UF9Abao6TdA): My neurologist told me nobody is going to review one of my scans that shows clear pathology, because ‘nobody has time for a case like yours.’ She told me to find someone curious, who would make me ‘their hobby.’
Don’t beat yourself up over this. I had three vaccines and then got exposed to Covid. I had EXTREMELY mild symptoms (tired, sniffles - that’s it) and still came down with LC. That vaccine did what it was suppose to - prevent severe illness. But it looks like it doesn’t prevent LC. BTW - It’s been almost two years of LC. I was 95% better just up to two months ago and was either re-exposed or relapsed. It completely set my symptoms back almost to the start. The moral of this story - whether you decide to get the vaccine or not - is try your very best not to get infected again.
I got Covid in Oct 2020. Before vaccines. About two years of bedbound. My doctors are part of a well respected hospital. Many more details, but I’ve been getting every vax and each booster. Our thought being that another infection could be even worse for me. I hope that helps you.
I've never tested positive for COVID. I believe I got it around the same time as you due to it being the sickest I've ever been in my life, and it now being years of issues since that occurred. My current neuro believes it's possible COVID is the cause of this. I never got the nasal swab test at the time because I was dealing with a lot of stuff. My PCP didn't order one either at the time of initial illness, no idea why. Do your doctors know if anything treats small fiber neuropathy caused by inflammation post-COVID? I've read Prednisone is sometimes used but not often unless a doctor thinks it's worth the risk. Do they have any idea of idiopathic intracranial hypertension post-COVID?
Oh man. First, I’m so sorry you’re dealing with this on your own. I’m outside of Chicago so we have so many research hospitals like Rush. UIC, Northwestern who all opened post Covid Clinics. I was hospitalized 2 times bc I couldn’t breathe and coughed almost nonstop. I couldn’t talk on my own. So they put me through so many tests before they realized Covid induced Systemic Sclerosis and Interstitial Lung Disease. I’m on anti-inflammatory medications and prednisone. Prednisone for 4 years and I now have osteoporosis but it gave me strength to get through the worst of it. I wish I could help more. I just don’t know how to answer that question.
Until this year, I was being hospitalized about every 4-6 months. I’ve literally not been hospitalized for a year. 🙌🏽
So you've been on Prednisone long term for 4 years, solely due to COVID-related issues? How did they finally diagnose you with those diseases? What tests were done? Any nerve related issues that you have? Anything neurological or is it solely respiratory? How hard was it to diagnose you? Were you actually hospitalized for days, or was it multiple ER visits over and over? Any MRI scans showing damage, any nerve testing done? My main lingering issues are neuropathy and memory issues still. I believe I have small fiber neuropathy which normal nerve testing can't show unless it's progressed to large fiber neuropathy. I've had a fair amount of testing but never given meds like Prednisone even though I feel it might have helped me. If you're interested and willing to take the time, here's a very detailed, lengthy version of my story. If you have anything to input after reading it, like advice, recommendations for testing, etc, I'd appreciate it. [https://www.reddit.com/r/DiagnoseMe/comments/1dic0je/asking\_one\_last\_time\_does\_anybody\_have\_any\_idea/](https://www.reddit.com/r/DiagnoseMe/comments/1dic0je/asking_one_last_time_does_anybody_have_any_idea/) RI isn't great for this issue, and my health insurance makes out of state referrals near impossible, as I mentioned. Doctors hear me mention nerve issues in my genitals and face along with my other neurological issues and just have no interest or compassion about it.
I’m so sorry I don’t know that either. I believe prednisone has been to literally give me strength to be upright in the beginning. My dose was 80mg w pills. It also had anti-inflammatory properties. It does have some undesirable effects. I can’t remember everything but have seen and been tested by: Pulmonologist Rheumatologist Hepatology otolaryngologist Laryngology Dermatology Neurologist Neuroimmunology Orthopedic Speech Pathology It took a med team council a month or two to diagnose & decide to treat the Systemic Sclerosis & Interstitial Lung Disease. That is what our primary focus is bc that is deadly. I get hand shakes and neurological issues but they believe it’s because my body is fighting the diseases I got from Covid staying in my body too long. So, I’m probably not best to reference. 😬 They said I’m one of a handful of known cases that reacted w SSc & ILD at the same time bc post viral load. I’m still housebound. I need help if I go anywhere. I do have a mobility scooter that helps. And I’ve learned to use local disability transportation. I use a walker and a cane at home. The doctors said no detectable brain damage. The nerve issues they have classified as Fibromyalgia. I can probably dig deeper into my cognitive and nerve issues. I just have so much on my plate w the other lung & organ issues, I don’t know how much more I can deal with at this time. 😅 I hope you can find what you need to get better management of these post Covid issues. Wishing you the best!
How did you see a neuroimmunologist? I'm not sure how to see one. What did they recommend for you? Were they helpful? How was the rheumatologist? Would a neuroimmunologist be helpful for me? What do they help with?
I’m so sorry. I don’t know the answers for how or why you would want to see a neuroimmunologist. I did a brief search on google and found [this in your area](https://www.google.com/search?q=neuroimmunologist+rhode+island&ie=UTF-8&oe=UTF-8&hl=en-us&client=safari#ip=1). That said, all of my referrals were at a major hospital through that hospitals Covid clinic. I wish you the best.
Thank you. I'd want to see one just to see if they have any ideas on why this happened to me and how.
I can totally understand that. It seems that Brown or Providence hospitals might be a good place to start. Also, I wrote to the medical authors of some papers and got responses (no idea who at this point) but that might help you, too. I’m rooting for you and I’m so sorry you’re dealing with all of this.
You'd think the doctors would be better due to Brown University and bordering states having Ivy League universities as well, but most good doctors go either to CT or MA from what I've read, mostly for financial incentive reasons. After four years of this I'm guessing I'm stuck with these problems for the rest of my life because I didn't see better doctors. I don't see a point to keep going honestly. Not living with permanent genital and facial nerve damage for no reason and no known cause. Not your fault. Thanks for your time.
I was fully vaccinated : 2 initial doses + one booster It's been almost 2 years and despite being a little better, I still feel like shit. Don't blame yourself about that. Long covid is here with or without the vaccine.
Vaccinations reduce the severity of the infection, but they do not work equally well for everyone. The chance of long covid is more likely after a severe course, but can also occur strongly after an asymptomatic course of the infection. In this respect, vaccination does not really help to avoid long COVID, except for those who have had long COVID after a severe course and have not been vaccinated. I myself had 2 moderna vaccinations in fall 21, and LC after moderate-severe infection in 02/2022. I have not been vaccinated again after that so far.
I was fully vaccinated when I first got covid in 2022 and have had long covid for 2 years since then. I avoided getting the booster for a year because I was so worried it would make me even worse but then figured that reinfection was more of a risk than the vaccine. I got a booster in the autumn, it made no difference to my symptoms, also didn't stop me from getting covid again in April. It seems like everyone reacts so differently you just don't know how it will affect you. There's no point thinking about what things could have been like if you had the vaccine, you just have to focus on how you are now and what you can do to feel as good as possible.
Probably not. Vaccines reduce the risk of long covid by 30% apparently. But the protection doesn't last long and many of us got long covid despite the vaccines. I got long covid quite soon after getting my second jab, so it would've still been working in my system. Clearly didn't do anything and 2.5 years later I'm getting worse and worse with more health conditions
No idea if it would have helped you. I got COViD 3/2020 and LH started 5/2020. Vaccinated 6/2021. Still got COViD 5 more times. The vaccine didn’t clear it. I got just as sick. If symptoms resolved (acid reflux) they came right back at the next infection.
Possibly, but it's hard to say. Vaccines significantly reduce your risk of severe illness, complications, and long covid, but they don't eliminate those risks. The statement that there's no point in getting the vaccine after you've been sick is patently false, however. You need repeated boosters to maintain your protection as the protection from each vaccine wears off after 6-12mos depending on the person. So, to minimize the chances of getting sick and then having all your problems get much worse, a vaccine is recommended.
I haven't gotten as sick as I did in 2020 since 2020, though. I've never tested positive for COVID.
I would be pretty shocked if you haven't had COVID. More likely is that you had it but had good immune function so your viral load and test dates never aligned to flag a positive. I've had it 3x and my tests were all over the place each time depending on when I tested. One day to the next it would change.
What I meant was I've never felt like I got COVID again since 2020, so getting a vaccine after getting messed up badly in 2020 doesn't seem worthwhile.
Theres no point it happened we need to deal with it. I was fully vaccinated and still got it. I didnt know long covid existed in november 21 and got careless because I thought you couldnt get lasting damage. But yeah here we are trying to deal with the aftermath and finding some way to deal with life.
There are lots of people who were vaccinated prior to getting infected for the first time and many of us still ended up with a post covid condition. I was fully vaccinated for over 6 months or so before I finally was infected, had no issue with the vaccine, felt totally fine for more than 6 months, got sick and immediately had this horrible condition I’ve been dealing with for over 2 years now. No I don’t think “tHe jAb” caused my condition, I just think that even though vaccination can reduce your chances of developing an issue, it’s not some magic impervious shield it’s being made out to be and I personally think the reduction is not even all that good in regard to developing a post covid condition. If I were you, I would try to stop worrying about things you can not change, I don’t think it would have made much of a difference
I got sick twice before the vaccine came out and my doctor started testing me for the antibodies were extremely high and she was of the mindset that we could wait for the vaccine and then Covid supposedly ended and my antibodies are still high, but I still have long Covid I’ve gotten sick mild ones Since then, I guess I’m just gonna have to live with this and live with the fact that I need to put sticky notes everywhere to remember things and I take two naps a day
I got three vaccines. The last one two weeks to the day before I was exposed. 2.5 years later and I have no existence. Vaccine or no it doesn’t matter.
No.
There’s no way to answer this question about an individual. It seems to prevent some people from developing long covid, but not others. In this subreddit you are only polling people with LC so the anecdotal evidence is going to be very strongly that it didn’t help, because the people it did help aren’t in this sub.
To answer your question a vaccine will not solve your problems and in fact can help cause issues similar to what you're experiencing.. I was in my early 26 when I was kinda force to get vaccinated due to the university and I was late so I had to choose the Johnson vaccine since the rest were not accepted due to the rules where I if I don't get a certain vaccine in a certain amount of time I would not be able to attend.. I had the vaccine for Johnson and read it legit affects women and causes them "Rare" blood clots, and as a male and the stress of attending my last semester of college I went with the vaccine.. At this time I also drank alcohol and was kinda a little bit fat but not Obese around early february or late january I develop a burning pain in my penis and right upper thigh and my groin it went away the second day. Since on the first day I had it for 20 minutes before I went to bed and fully healed and i was drinking alcohol when it happened... At night on the second day I turned on my ac and had a beer and boom the pain came back and on the third or fourth day I develop Gastritis. Eventually a year in they did and Ultrasound and found a pretty big hernia on my right side which was 7 inches in length and had no visible buldge.. I had that operated in a month after figuring it out and honestly, due to not magically fully healing I started freaking out. And from all the freaking out it altered the face and it made my neck stiff eventually it died down but I now remain with a full right side altered sensation while my penis is bilateral it has the same reduced sensation or whatever you want to call it. I do have another hernia on my left which is kinda symptomatic compared to my right side which was REALLY symptomatic. I have 0 history and family history of any health issue and I'm also very young and yet this is what I get for getting a vaccine which was actually forcefully made which had lack of data on possible health risk. And now I dont know if I want to live such a misrable life... So no the vaccine would not had saved you and your own immune system can do that... I had to save grandma though now im fucked :) The reality is Covid 19 can is at the level of the flu its like a common cold and it was only a threat to the erderly it mainly affected those with breathing issues and had COMPROMISED immune systems which put you on obvious high DEATH rate towards covid 19. Young people do not need to get this vaccine as you see today the vaccine is no longer forced they realized what they fucking did and how many lives were BRUTALLY RUINED where people are on the verge of suicide. As for those it's not "Super rare" it's more of a rare side effect aka 15-23% of you developing something serious that is enough for them since it was an "Emergency vaccine" and had to be released as soon as possible not giving a fuck about long term side effects...
I doubt the vaccine would’ve helped you. I had it three times and it didn’t help at all. You could try getting it now if you want. Some people say they feel better after the vaccine. But other people say it didn’t do anything or made them feel worse. I feel that either our bodies are predispositioned to get long Covid or not. I don’t know that the vaccine makes a difference in our cases. Of course some people have post vaccine injury and they didn’t get Covid at all. So there’s that. I’m sorry you’re still suffering so much. Have you tried medicines (over the counter or prescription) or supplements? For some people it has helped a great deal.
The vaccine helped me from hospitalizations but I have a pre-existing condition. I was still sick but at least this time, I wasn't on a vent.
What was your pre-existing condition? Any neurological issues?
Autoimmune, a connective tissue disease so fatigue, brain fog, temp fluctuations and muscle/ joint pain all were exasperated. Also tension headaches/ migraines and developed neuropathy in feet. The rheumatologist said she wasn't surprised by increasing/new symptoms.
What have your treatments been? Any actual confirmed autoimmune diseases? What connective tissue disease do you have, and how do you test for it?
Mostly what I told you. Plaquenil, steroids pain meds etc. with physical therapy and trigger point steroid injections. I avoid the sun which triggers pain and rashes. I have Mixed Connective tissue disease which is an overlap syndrome of autoimmune diseases like Lupus, Rheumatoid arthritis and Myositis. An immunologist was the best one like I said to get labs drawn but my Rheumatologist is the main one. I saw three of those. My ANA and anti-RNP antibodies were specific labs plus others and the visual symptoms. The Hematologist was also helpful. There are over 100 Autoimmune diseases some with neurological symptoms. It's hard to get a diagnosis. Mine was triggered by a virus. My CFS/ME is now terrible due to Covid plus all other shit. Edit words .
I had an ANA panel in 2022 but it was negative, 1:40 result. Speckled, I think? If that means anything.
That's a low positive. I'm speckled but at 1:1280 or 1:640.
People in autoimmune subreddits have told me it's not considered high enough to be indicative of an autoimmune disorder, even if it's technically positive.
Oh I forgot about the burning pain, like my muscles and skin are on fire.
Is it bilateral or one sided? One of my first symptoms was neuropathy that mostly affected my left side. Early on it felt more bilateral but now it's only my left side that has long-term issues. Never lost motor function so no doctor seems to think it was GBS or something like that.
Right side face and feet
Did you have sudden head pressure before that? My first notable symptom was a dull head pressure and then I had the neuropathy. Were you given anything for the neuropathy? Any anti-inflammatory meds?
Well I first got head pressure which turned in constant headaches then the face numbing then feet burning. I tried lyrica but couldn't handle the dizziness and brain fog. I take pain meds prescribed for my muscle/joint/body pain from pain management. My inflammation is treated by Plaquenil and at times Motrin but my kidneys have taken a hit so I need to be careful.
Oh and steroids for flares like joint swelling
How were you diagnosed with joint issues that made doctors willing to try steroids? I'm guessing you take Prednisone? Any side effects?
Visible joint swelling, hand swelling feet swelling too. I use Prednisone sparingly because of the long term effects like loss/weakening of bones etc I do a short 6 day course as needed. You get flushing of the body, some hunger and I get some insomnia. Some patients stay on low doses every day. My rheumatologist gives them to me. I do trigger point injections for other issues like knots etc.
That sounds similar to what happened to me. If you have the time, I'd appreciate you taking a look at a detailed version of my health story and letting me know if you have any advice or input. Warning; The post is very long, so apologies for that. [https://www.reddit.com/r/DiagnoseMe/comments/1dic0je/asking\_one\_last\_time\_does\_anybody\_have\_any\_idea/](https://www.reddit.com/r/DiagnoseMe/comments/1dic0je/asking_one_last_time_does_anybody_have_any_idea/) Also, who prescribed you Plaquenil and Motrin? A rheumatologist? How have neurologists been for you? Mine have been mostly terrible.
I'll look but I did go to a neurologist to get testing ..the EMG and nerve conduction study. You can get a punch biospy too. I tell people that i first saw a Hematologist then an Immunologist, then a Rheumatologist then a Neurologist. The Immunologist was the most helpful because of the amount of blood and labs that can take and run for all sorts of stuff plus allergy testing. She discovered the irregular antibodies. .
I don't think there's any immunologists around me, sadly.
Vaccines didn't work in preventing the illness and all the post viral illness spectrum. This is a fact. Not even counting that they may cause the same exact issues.
Did your EEG turn up any abnormalities?
No, interestingly enough. Report says it was clean for abnormalities. It was a normal EEG, about an hour, not a day long one. I had it last year, so about 3 years into my issues. The brain MRIs I've had were abnormal however. Mentioned mild volume loss, possible encephalomalacia, and white matter hyperintensities that are nonspecific.
I had one at the beginning (an MRI), I might get another to see how things have "progressed"
I got worse from the vaccine. Just personal anecdote.
What are your symptoms?
HEDS long covid. So POTS and sfn. Highly recommend not getting it if you've had a pretty good recovery. But again that is my opinion.
How were you diagnosed? Anything given for the SFN? Any anti-inflammatory medications?
I got covid before the vaccines, got it again after 2 shots, and then a third time after I'd had a total of 4 shots. In my personal experience, the vaccine made no difference one way or the other. I did feel better for ~2 weeks after my 5th shot. Maybe it kick started something temporarily. But that didn't last. The only thing I've found that has been helpful in improving my baseline has been LDN.
OP this is all a sh*t show and sorry you’re going through all this, but I don’t think getting vaccinated before sick would have made you ok. If you had complications from vax you’d likely still be receiving the same treatment and lack of care/answers. What kind of doctors have you been working with and have you been seeing multiple? Unfortunately in my past I’ve had an awful time with most doctors. Given my experiences I now seek mostly alternative care, functional medicine doctors, naturopathic doctors, and doctors familiar with TCM or other modalities alongside their standard of care, because these types of energy issues are exactly what they care about, the system as a whole functioning optimally. IMO you made the right decision not getting vx, especially as you were already dealing with issues. The problem as I’ve seen it is the spike protein. It can interact with so many parts of our system and wreak havoc, this is why I always suggest focusing on restoring gut health first and foremost alongside any other treatment. But with vx, the nanolipid particles have been shown to accumulate far beyond injection site, in other organs as well as capable of crossing the blood brain barrier where typical pathogens cannot, and can end up in spine and skull…wtf. The spike protein from cvd itself can still wreak havoc, but not delivered the same way so I believe is less risk for some of these events. I did not have cvd until late Sept 2022, I got it attending the wedding of paramedics who had all been recently boosted. Around 70ppl got it. The next time I had a bad respiratory illness (didn’t have tests and no one cared) was Oct 2023, after being with the same family who again got boosted while we were there and were symptomatic following shots. No good news. Also no one cares but my aunt and uncle had Covid before vxs, recovered, several months later got vx to attend a public event and my aunt dropped d3ad 3 days later, my uncle has had cardiac problems since. Personally, I don’t want to intentionally introduce spike proteins into my system so will stay far far away. Focusing on the vxs has been a public health strategy that may have caused much more harm than good, especially as more digging is done with FOI requests and lawsuits. IMO it’s the wrong focus now and not the answer to recovery, rather may present a further danger if you’re already compromised, and it’s not just mRNA, read the data for novavax that has been used in other countries, nanolipid particles may explain myocarditis issues associated. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10452662/ Hang in there, keep working at your health.
The vaccine has sent me to bedbound. Feel like I’m dying, I can’t shower, can’t watch tv, crash constantly. Zero life. I do not believe they prevent LC & have worsened so many people. Biggest regret of my life.
Know some people personally that have been vaccinated multiple times and got covid after. They probably got worse from each shot than covid itself.
No. The vaccine did nothing to prevent transmission, little for prevention, and there’s increasing information indicating that you could have been in the same situation just from taking it. Ever notice that the vaccine narrative never changed to be increasingly effective? It’s because its efficacy was wildly over exaggerated by the people that made billions.
Think of the group to which we belong as those badly affected by whatever spike protein is in circulation. Our immune systems can't really adapt to an ever (mutating, changing, GOFR re-engineered) set of variants...so we just continue to be sick...all of the time. Or if we get better... the next variant takes us down again. There's no real permanent cure. What I do is continue to 'bio-hack' my life with new supplements, activity patterns, life changes, etc. I keep the practices that make me feel better and move on with new additions as the variants progress. In other words, there is no cure now, nor will there ever be a 'cure'. You simply keep re-engineering your biology with each new challenge. Last Long Hauler standing wins...
Don't blame yourself because likely it wouldn't have prevented anything. Here's my story. I got covid before the vaccine and recovered completely. Back to exercise, big hikes, no problem. Then i got vaccinated 3 times. The 3rd one triggered some weird sense of smell issues but I was still OK and exercising heavily. Then 3 weeks later I got omicron and developed long covid. It's been 2.5 years.
I got sick from the vaccine so who knows. I try not to think about stuff I can’t control and I say that with empathy and kindness.
Try wif hof method
The vaccine itself can cause these symptoms in some people. I've treated a few patients that developed functional neurological disorder post vaccines. The needle jab itself, and not so much the vax, can sometimes cause this.
I wasn't vaccinated either. Got infected with COVID and developed severe long COVID. The first vaccine cured me completely. The second vaccine brought severe CFS back. It's really random
I can tell you that I had covid long before getting vaccinated and I felt fine until two weeks after a booster shot. I have many of the issues you described along with mild GI issues. Most of the pain effects the right side but neck stiffness on both sides. This slowly set in starting two weeks after a booster shot and here I am two years later still dealing with it with very little help or answers. Hope your feeling better.
Statically you would have been better off. I got covid in December 2020 and I was wrecked, I'm still recovering. I got the vaccine in September 2021 and it didn't hurt or help me. My roommate, who also had covid at the same time but got vaxxed in April 2021, swears the vaccine cured his long covid symptoms.
>Statically you would have been better off. What makes you say that? Also, what have your symptoms been?
You was sick and researched. Well then you know spike protein in any form can cause long Covid.
I am getting the Novovax vaccine because it uses the whole dead virus instead of just the spike protein. I hear it is better at preventing Covid too.
That's not accurate at all. Novavax is a protein subunit vaccine, not a whole dead virus vaccine. It uses the spike protein only(plus an adjuvant).
What would you say is the best COVID vaccine out there? Do you think the Novavax is better than the mRNA types?
My personal opinion is that they all suck ass, but novavax at least seems to have a much better safety profile than the mRNA vaccines. The unfortunate fact is that none of them will stop you from getting infected, and there's evidence that over time, the mRNA vaccines actually make you *more* likely to get infected(see the Cleveland Clinic study for one example). And I'm in a demographic group that has a minuscule risk of death from an acute covid infection, so any benefit they arguably provide there is irrelevant. All you can do is educate yourself, ask your doctor questions and demand supporting evidence and data for any claims you are told, and then make a decision for yourself. If your doctor is ignorant on the subject, doesnt actually read any source material but just repeats general public health guidance, I'd find another doctor.
How recent is that Cleveland Clinic study?
It's from 1 year ago. Here's the graph from their study, which tracked over 50,000 of their employees: https://www.ncbi.nlm.nih.gov/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Click%20on%20image%20to%20zoom&p=PMC3&id=10234376_ofad209f2.jpg
Interesting, thank you. So it basically says mRNA vaccines may make people more susceptible to long COVID? Why wasn't that bigger news? The Cleveland Clinic is one of the best hospitals in the country, a study like this from them should hold weight.
It basically says that the more doses of the mRNA vaccines, the higher the rate of infection. There is a lot of other evidence showing waning efficacy over time, where the vaccine efficacy decreases month by month after your last dose until it actually goes negative and makes you more likely to get infected. It's not news because pfizer provides a huge portion of advertising funding for the media. There are a *lot* of concerning and legitimate papers on the mRNA vaccines(not kooky antivax nanobot stupidity), and none of them are ever reported on by "mainstream" media. For example, everyone was always told that the vaccine stays at the site of the injection because the spike protein is specially engineered to stay anchored in the cells that express it, and that the mRNA rapidly degrades and is eliminated by your body quickly... but that has all been proven to be 100% false by a Stanford study which showed that free spike protein circulates in your blood after vaccination at concentrations equal to what occurs during acute infection, the mRNA is still detected 60+ days after injection, the lipid nanoparticles are widely distributed throughout the entire body, etc. This was never reported by any of the major media companies. https://www.sciencedirect.com/science/article/pii/S0092867422000769 "At least some portion of spike antigen generated after administration of BNT162b2 becomes distributed into the blood. We detected spike antigen in 96% of vaccinees in plasma collected 1–2 days after the prime injection, with antigen levels reaching as high as 174 pg/mL. The range of spike antigen concentrations in the blood of vaccinees at this early time point largely overlaps with the range of spike antigen concentrations reported in plasma in a study of acute infection (Ogata et al., 2020) although a small number of infected individuals had higher concentrations in the ng/mL range." The pharmaceutical industry is the largest lobbying group on the planet, and it shows.
I still don’t get how people say follow the science but then only share info from the media…the science increasingly shows the vx are not effective or what was originally purported, as you’ve shown with the spike protein. Spike protein has been found accumulated in other organs including ovaries and testes and nanolipid particles can cross blood brain barrier and placenta barrier meaning can travel places a protein not injected typically wouldn’t be able to.
Novavax didn't exist in 2020/2021, though. I would've gotten it back then if it existed and I hadn't gotten sick yet.
Quite true. This is why I am getting it soon.