long hauler of 2+ years struggling with decision to get vaccinated

Posted by aldersage @aldersage, Apr 17 8:55pm

I got Covid before the vaccines were available and started having symptoms that all my Drs thought were menopausal. It became clear about 6 months ago as things progressed that it is long Covid and I can feel it in my brain and spine, all over my body. I have tried so many therapies, natural meds, meditation, ect.. outside of my regular Drs because they have no advice for me. I have not been able to afford the oxygen therapy. I have made appointments over the years to finally just get the vaccine but something always comes up, they had run out of it or they only had the kids version or I get sick, ect. I have another appointment tomorrow and I have so much anxiety about it, fear that my symptoms will get worse. Everyone I know is boosted, my family who are all boosted think I should steer clear since I have had Lyme and Epstein Barr in the past. I am a single mom and need to get better. Please I would love to hear from anyone who maybe has any similar advice. Thank you.

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I might be too late but I wouldn't recommend getting the vaccine. I've been reading all of these discussions of all the various symptoms/problems people are having after covid but no one hardly says if they have been vaccinated or not. Quite a few of the promlems people are suffering from I believe are from the vaccine not just covid. I too am a long hauler that has not been vaccinated and even though my doctor says I should be vaccinated I choose not to. I feel it will just add problems to the ones I already have.

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I am in two major clinical long Covid tests/trials.
I’ve asked the same question to the doctors in both, who are fighting as hard as anyone for understanding Covid.
As of a few months ago, neither one is aware of any clinical research to answer the question of vaccines after long Covid, so they couldn’t offer an answer that’s based on anything.
I have my own view for myself based on all I know. But I’d be happy for some solid research to guide my decision in whatever direction I go. Based on my conversations, I believe science hasn’t caught up enough yet with long Covid to provide answers to the many questions.

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I'm definitely getting the next booster. I'm older with a few autoimmune diseases and I'd rather get a mild vaccine/booster reaction than a covid hit. I was boosted last September but got covid in March; it was mild because I didn't have to go on oxygen, but I still have fatigue and can't exercise as much as before. These vaccines work by triggering your immune response to a marker, a bit of protein characteric of the virus. Then your immune system can recognize when the virus invades your body and initiate the counteroffensive before it gets a foothold. Covid is war.

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I developed sensory and motor peripheral neuropathy after the Covid vaccine. My outstanding peripheral neurologist agrees that the vaccine was the likely cause. Vaccine injuries and long Covid both likely result from a toxic response to the spike protein. I would be cautious about introducing more spike protein by vaccination. The government is currently being sued due to its censorship of patients with Covid vaccine injuries. The mRNA vaccine technology is new. While it has saved many lives, many have also been seriously injured. There needs to be a risk:benefit decision and the government is not being open about the risks. The doctors are being silenced also.

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It is totally a personal decision that you should make with the help of your Dr.
There is a small research study that suggests the Pfizer or Moderna vaccines can help long haulers. The Moderna was slightly better in the study. I dont recall where I found the study but it was peer reviewed legit, just small.
The downside was that 10% of the people who participated actually got worse after.
I spoke with my primary care Dr and the head at the long Covid clinic about it. Both told me given my long Covid issues they would recommend not getting vaccinated. The long covid Dr. said you had Covid twice and handled it well, except for the long symptoms. He said I have enough resistance built up and would not recommend any additional potential risks.
Unfortunately, our society mostly thinks everyone should be vaccinated regardless. That is not sound medicine. If there is a need and recommendation by your Dr then absolutely get vaccinated.
My symptoms are slowing getting better. I have setbacks more often than I would prefer. If I knew 100% the vaccine would help it would not be a question at all. You and your Dr know your body and history. You know the potential benefits and possible risks. I personally couldn’t stand the possibility of getting worse. The risks outweighed the potential benefit in my mind and with the help of my medical team.

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@dprest56

I might be too late but I wouldn't recommend getting the vaccine. I've been reading all of these discussions of all the various symptoms/problems people are having after covid but no one hardly says if they have been vaccinated or not. Quite a few of the promlems people are suffering from I believe are from the vaccine not just covid. I too am a long hauler that has not been vaccinated and even though my doctor says I should be vaccinated I choose not to. I feel it will just add problems to the ones I already have.

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Do you also not get the yearly influenza vaccine?
I can’t wait to get the next booster.
Had Covid 9/22 and other that feeling tired and sore throat I was fine. I’m diabetic and have occasional arrhythmia. So glad I had the shots.

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Hello I am so sorry for your long covid, and I feel you. I am a long covid person also. I got covid March 2020 and ended up the the hospital because I got vertigo so bad. I still struggle everyday with my symptoms. They include: Dizziness, Vestibular headaches, fatigue, vertigo, and what feels like electric shocks in my body. I got one covid vaccine and had a bad reaction. I had to go to the ER with burning leg syndrome. I did not go back for anymore vaccines. The burning leg did clear up after 8 weeks. But my initial symptoms did not. I struggle to get more vaccine because I don't know if they would help or hurt me more. I just keep going forward the best I can. I hope we all recover soon!

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I don't advise anyone else. I agree we each have to make our own beat decision for us. But since you're wanting opinions, I've decided I'm not getting any more. I had the first 2 (Pfizer) & then 1 booster. I have a friend who got myocarditis 3 days after her second one, was in hospital. I have another friend whose husband suddenly started having parkinson's symptoms a couple of weeks after his last booster. Now, I see the report that lots of folks are getting tinnitus after this most recent one, and I'm thinking that if I got that in top of current symptoms, I just don't think I could cope. Listen to your inner wisdom, & pray about it. You'll know the answer for you.m

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