I need to hear from people who've gotten BOTH shots of the covid vaccine

Booble

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Sorry, I don't think enough of us have had both shots to give you some good information to help you make a decision.

Keep in mind that 2 shots is the protocol because that is what they used in their trial but one shot is believed to be very effective against hospitalization and/or death from COVID-19. In fact in the Moderna trial they accidentally gave half doses and the efficacy was higher! Because this is being authorized for use by emergency authorization, they have to stick with offering exactly what was in the trials.

Good luck with your decision. (And if you do decide to get the second shot, please let us know how it goes!)

Oh, I can tell you one case that might be useful. My colleague's wife had a severe reaction to shot #1 including bad hives. She works as a nurse and was told that she should consider not getting the second. She talked to her doctor and others and decided to get the second shot. Surprisingly she had LESS of a reaction on shot 2. No hives and less of the knocked down feeling of the first.
 

jen1177

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One of the things about Hashimotos that alot do mot know is that there can be a period of hyperactive thyroid activity first before (i think even years) before the familiar hypothyroidism occurrs. One wonders how many people with hyperthyroidism are misdiagnosed as Graves
Yep, I knew about this. But I had all the symptoms of Graves including the goiter and bulging eyes. I'd had Hashimoto's for years before I got Graves and all my doctors missed it.
Yesterday I tried contacting my doctor who I had at the time I was diagnosed and had the thyroidectomy, to try to get my records to see blood test results but it was so long ago that the records have been disposed of. I'll never know for sure. I do have the test results from the radioactive iodine uptake which is what officially diagnosed me with Graves' disease.
I'll have to look back through the blood test results that I do have to see if I was tested for antibodies for both diseases. I'm pretty sure I was, but I can't remember for sure.
 

jen1177

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Sorry, I don't think enough of us have had both shots to give you some good information to help you make a decision.

Good luck with your decision. (And if you do decide to get the second shot, please let us know how it goes!)
See #37 :)

I realized after weeks of stressing about it and researching and forum-posting and FB posting and asking everyone I know....the information I need simply doesn't exist yet. It's just not out there. And I was fed up and exhausted from the quest for knowledge. So to be on the safe side I decided not to get the second Moderna shot. It's been 5 .5 weeks since the first shot and I'm still flaring pretty badly. I've also noticed I am more sensitive to light and sound, it's harder to speak and type -- words are harder to pronounce, constant typos. My occipital neuralgia is pretty bad some days. It's like my brain is having inflammation problems. And my muscle problems are very bad.
 

vision blue

What big eyes...
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See #37 :)

I realized after weeks of stressing about it and researching and forum-posting and FB posting and asking everyone I know....the information I need simply doesn't exist yet. It's just not out there. And I was fed up and exhausted from the quest for knowledge. So to be on the safe side I decided not to get the second Moderna shot. It's been 5 .5 weeks since the first shot and I'm still flaring pretty badly. I've also noticed I am more sensitive to light and sound, it's harder to speak and type -- words are harder to pronounce, constant typos. My occipital neuralgia is pretty bad some days. It's like my brain is having inflammation problems. And my muscle problems are very bad.
Seems rational and a worthwhile journey

Interestingly i am now flaring with all the symptoms you describe with your flare (and a few others like hot flashes and night sweats) Mine was caused by a sinus infection,- felt grear during ut but same day as it finally improved after nearly three weeks the flare symptons started pouring in. and feel awfulI think Lso have a herpetic virus recurrence

Have you taken the Poll for one month past vaccine? Maybe i shoukd recreate that. I didnt pilut poll in the subject gwading and think people nay have missed it. Id lije to know how long peoples symptoms last.

But congrats on having gotten one shot it wiill help.
 
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Hi @jen1177 with your propensity for injury that doesn't heal well and body issues you may want to look into whether you have eds if you haven't already ruled it out. Good luck with this shot situation
 

jen1177

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Hi @jen1177 with your propensity for injury that doesn't heal well and body issues you may want to look into whether you have eds if you haven't already ruled it out. Good luck with this shot situation
Wow! I was just googling EDS and I have many of the symptoms. I actually had recently remarked to my doctor that I am not getting wrinkles on my face the way my friends are (same age as me) and now it looks like I know why. My LiveWello gene variance report for EDS showed 3 homozygous SNPs associated with EDS. I will have to look into this with my doctor. Thank you!
 
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Woah! I'm so glad I said something. It's been a game changer for me. I'm still at the beginning of my journey with it too. I wish we were screened as children. It's so easy to just look at our range of motion. Because if we start pt early and stabilize our joints as best we can and learn how to operate in our particular bodies, that provides a good deal of prevention of developing symptoms or developing very bad ones. There's also particular things that we have to know to make good health decisions.

But wait... You have three mutations associated with eds? There's not been definite links yet to mutations for heds, the most common one that's associated with mcas, pots, and mecfs, from what I gather (I don't know for sure it's the most common but that's my impression thus far). There are mutation candidates and ongoing studies. So if they're reporting that it means they're including suspected mutations for heds and/or you have another type of eds, for which there have been definitive mutation links discovered. Severity can vary across all types, and all are progressive or potentially progressive, but there are some other ones that are really very serious as far as risks and potential damages. The need to know these things becomes high in these types. Vascular eds is the example I'm most familiar with. The Ehlers Danlos society is a great resource. Also check out the doctors near you who are involved with the society. There are webinars. They have a call line/question line where you can write in any questions you have about anything or searching for resources near you and the eds society will give you the best answers they know. I have a great video I can give you if you'd like that describes how many me/cfs, dyautonomia, and mcas symptoms, among many others, can be connected directly and indirectly to our dysfunctional connective tissue throughout our body and in our spine. Joint instability is a key feature of eds and this is the whole deal with cranio cervical instability that's been a big link for some people. Instability anywhere including the spine can really vary from individual to individual and have different effects.

I have an eds specialist pt who I love and that I'm recently beginning, and she referred me to an eds specialist doctor in my city who does prolotherapy/prp injections for eds who she's heard good reports from his patients about. I was going to go out of state for one until I found out they were unethical, and then got recommendations for in state that I wouldn't have realized were eds specialists if I was just searching online, which I've already done a lot of legwork on. If you want help or advice please reach out!! I'm sorry you've found out about this but also hopeful it will bring you much progress. I know I'm happy to have answers to my chronic pain, and progressive loss of function with that, not just for understanding it but clear paths for resolving it and reversing the progression. And also to have clear links with neuro and immune function which provide promising avenues for improvement.
Wow! I was just googling EDS and I have many of the symptoms. I actually had recently remarked to my doctor that I am not getting wrinkles on my face the way my friends are (same age as me) and now it looks like I know why. My LiveWello gene variance report for EDS showed 3 homozygous SNPs associated with EDS. I will have to look into this with my doctor. Thank you!
 

jen1177

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But wait... You have three mutations associated with eds? There's not been definite links yet to mutations for heds, the most common one that's associated with mcas, pots, and mecfs, from what I gather (I don't know for sure it's the most common but that's my impression thus far). There are mutation candidates and ongoing studies. So if they're reporting that it means they're including suspected mutations for heds and/or you have another type of eds, for which there have been definitive mutation links discovered. .
I'm just going off of what the LiveWello template says. https://livewello.com/library/ehler...searched-in-connection-to-eds-4352?id=3564048

A while ago I uploaded my 23andMe raw data to LiveWello and it's been very useful. Actually, the whole LiveWello website has been extremely useful -- especially the personal emergency medical info pages. I have a medical alert bracelet with my personal page web address on it, with the PIN, too.

Thank you so much for your help. I have a lot of other things going on that are taking precedence over EDS but I will look into it in the future.