The Vaccine Experience in the Autoimmune Community

Let’s acknowledge something right off the top . . . it’s no secret that the COVID-19 vaccines are currently a very divisive issue in the United States. Although the vaccine debate has been around for just about as long as vaccines have existed, the impact of that debate during a pandemic has been particularly profound. Here at Autoimmune Wellness we take our responsibility as community leaders with a large public platform very seriously and have been thinking about steps we can take to help bridge this divide.

Step One: Validation

The first step is affirming the lived experience. Restoring our health and wellness despite autoimmune disease is a huge challenge. It makes sense then that maintaining our wins becomes paramount and doing that during a global viral outbreak has not been easy. We want to validate the uniquely demanding circumstances that the pandemic and vaccine decisions present for those of us with autoimmune disease. This is a worldwide event with far reaching consequences for everyone, but we want our community to know that we understand the extra stress this situation presents for those with autoimmune disease.

Step Two: Community Care For Hesitancy

The next step is providing personal context about the vaccine experiences of others in the autoimmune community. When we can relate to others it helps ease our concerns around any kind of decision, especially one so impactful to our health. We recognize that in the autoimmune community there may be some legitimate vaccine hesitancy due to the complexity of the chronic disease paths we are all navigating, so we are offering education, not alienation, as an act of community care.

Here’s what the vaccine experience has been like for seven of your fellow autoimmune warriors:

Nicole’s Experience

Age Range: 25-34
Location: Toronto
Autoimmune Diagnosis/Diagnoses: Graves' Disease

Are you considered part of any "high risk" categories for COVID (excluding autoimmune disease)?
No

Did you have any concerns about receiving your COVID vaccine?
Yes

Are you under a medical provider's care? If so, did you consult with them before receiving your vaccine?
Yes, to both

What sources of information (other than your personal medical providers) did you use to help address concerns or learn more about the COVID vaccines?
Speaking to others in the autoimmune community + breathwork and meditation to trust that this was in my highest interest and in the best interest of my community.

What was your COVID vaccine experience like? Any side effects, autoimmune flare, or other symptoms?
Dose 1 - I had a sore arm and a lot of anxiety awaiting a potential reaction but there was none. Dose 2 - my arm was a lot less sore than dose 1 and I had no side effects. One week after dose 2, my thyroid did feel swollen and was painful, but this lasted less than 24 hours and I have felt fine since.

Since receiving your COVID vaccine has your behavior changed (ie, have you felt safer in public, traveled, or seen family, etc)?
I have felt a lot less anxiety, felt safer in public, seen family outdoors and resumed lots of the healthcare appointments that I was regularly seeking pre-pandemic including acupuncture and osteopathy. My quality of life has greatly improved.

As someone with autoimmune disease, what other steps have you taken to protect your health during the pandemic (beyond vaccination)?
Wearing a mask, reducing trips to the grocery store.

Anything else you'd like to add that was not covered here, but that you feel is valuable to others in making their COVID vaccine decision?
It's smart to have questions about medical interventions and technologies and to seek out answers to these questions from trusted medical professionals. A lot of my vaccine consideration was around minimizing side effects and reducing the chance of an autoimmune flare. I liked the idea of one shot vs two in this regard, but in the end, J&J wasn't available to me in Canada so I got an mRNA vaccine. I delayed my first dose until I felt I was in a good enough place mentally and emotionally, and prioritized sleep and meal prepping the week before.

Stephanie’s Experience

Age Range: 45-54
Location: Montana
Autoimmune Diagnosis/Diagnoses: Hashimoto's Thyroiditis

Are you considered part of any "high risk" categories for COVID (excluding autoimmune disease)?
No

Did you have any concerns about receiving your COVID vaccine?
No

Are you under a medical provider's care? If so, did you consult with them before receiving your vaccine?
Yes, to both

What sources of information (other than your personal medical providers) did you use to help address concerns or learn more about the COVID vaccines?
Physicians that I follow on Instagram, reading studies, CDC, science journals.

What was your COVID vaccine experience like? Any side effects, autoimmune flare, or other symptoms?
I had no side effects and no flare.

Since receiving your COVID vaccine has your behavior changed (ie, have you felt safer in public, traveled, or seen family, etc)?
I have felt safer in public, traveled, seen family and friends, and largely returned to a normal life.

As someone with autoimmune disease, what other steps have you taken to protect your health during the pandemic (beyond vaccination)?
Socialize indoors only with vaccinated people, be very careful about sleep and nutrition, don't eat indoors in restaurants (but do on patios), maintain healthy Vit D status.

Anything else you'd like to add that was not covered here, but that you feel is valuable to others in making their COVID vaccine decision?
I work with clients who are struggling with long Covid, so I've had a very close look at how devastating it is. This is a game of odds, so it's important to constantly be looking at the data and the odds of adverse reaction from vaccine vs. Covid itself. Those of us with AI disease are constantly weighing risk, because everything is a risk, so we're not new to this. In this case, the calculation is: what is the greater risk of harm? When you look at the data, there is no comparison between the risk of harm from vaccines (less than 1%) vs. Covid (1 out 3 Covid survivors suffer lingering symptoms). Four billion people have been vaccinated to date, there is now an ocean full of data.

Sue’s Experience

Age Range: 55-64
Location: Seattle
Autoimmune Diagnosis/Diagnoses: Pulmonary Sarcoidosis and Hashimoto’s Thyroiditis

Are you considered part of any "high risk" categories for COVID (excluding autoimmune disease)?
Yes

Did you have any concerns about receiving your COVID vaccine?
Yes. Not with the general safety of the vaccine, but with the potential for flaring my sarcoidosis

Are you under a medical provider's care? If so, did you consult with them before receiving your vaccine?
Yes, to both

What sources of information (other than your personal medical providers) did you use to help address concerns or learn more about the COVID vaccines?
Multiple medical providers (general practitioner, pulmonary specialist, immunologist and naturopathic doctor) as well as medical providers who shared information online with various autoimmune support groups I'm in, and studies about immunosuppressants and the vaccine from reputable medical sites.

What was your COVID vaccine experience like? Any side effects, autoimmune flare, or other symptoms?
Pfizer vaccine #1 - slight soreness in my arm which was worse if I raised it straight up - felt like I had lifted a little too much weight on a shoulder press - for about 24 hours. Vaccine #2 - had only a slight headache for about 24 hours and barely noticed any arm discomfort. No autoimmune flares as far as I'm aware. They did have me wait 30 minutes after each and to come with an Epipen just in case, but there was no problem. I was also advised to stop my immunosuppressant drugs for a week after each vaccine.

Since receiving your COVID vaccine has your behavior changed (ie, have you felt safer in public, traveled, or seen family, etc)?
Because I am on immunosuppressant drugs I have been advised to act as if I'm not vaccinated as we really have no idea as to its effectiveness in my case. So I have changed nothing, staying isolated for the most part and always masked in public, inside or outside.

As someone with autoimmune disease, what other steps have you taken to protect your health during the pandemic (beyond vaccination)?
Limiting exposure outside of my home, always being masked when outside my home, frequent hand sanitizing and hand washing, not eating out, cooking good quality foods, taking immune boosting supplements prescribed by my naturopath

Anything else you'd like to add that was not covered here, but that you feel is valuable to others in making their COVID vaccine decision?
It was helpful to me to stay out of the vaccine conversation on social media. Everyone's got an opinion, and often a very strong one. I did not announce that I got the vaccine as I didn't want to hear anyone's opinion of whether I made a mistake or not. I made a reasoned decision with the help of my medical team and my own intuition and knowledge of my condition, and anyone else's opinions are irrelevant.

Orleatha’s Experience

Age Range: 35-44
Location: Los Angeles
Autoimmune Diagnosis/Diagnoses: Eczema, Urticaria

Are you considered part of any "high risk" categories for COVID (excluding autoimmune disease)?
No

Did you have any concerns about receiving your COVID vaccine?
I have severe anaphylaxis reactions to foods including tree nuts and latex which means I have a very real chance of going into anaphylactic shock as soon as the shot is administered. I chose to wait to receive the vaccine as I work from home, my husband works from home and our children are homeschooled so our risk is minimal.

Are you under a medical provider's care? If so, did you consult with them before receiving your vaccine?
Yes and I have not received the vaccine yet.

What sources of information (other than your personal medical providers) did you use to help address concerns or learn more about the COVID vaccines?
I spoke to several different doctors who specialize in different areas and they all told me the same thing - wait. So I'm waiting and staying in our own little lock down until the time comes.

What was your COVID vaccine experience like? Any side effects, autoimmune flare, or other symptoms?
N/A

Since receiving your COVID vaccine has your behavior changed (ie, have you felt safer in public, traveled, or seen family, etc)?
N/A

As someone with autoimmune disease, what other steps have you taken to protect your health during the pandemic (beyond vaccination)?
I stay hydrated, including taking trace minerals. I move every day. I meditate. I pray. I keep my stress levels as low as possible. I also include spending time in the sun and supplementing with Vitamin D. I also supplement with quercetin and vitamin C. I maintain social distance when in public places. I wash my hands and change my clothes as soon as I come back from any trip outside of my home. Of course, I mask up!

Anything else you'd like to add that was not covered here, but that you feel is valuable to others in making their COVID vaccine decision?
Please know that you have to make the best decision for you. If that means getting your entire family vaccinated, then please do so! I really want people to talk to a PROFESSIONAL and not just some 'influencer' on the interwebs and then make an informed decision. Professionals can help you make the best decision. It can be complicated and scary but please get real information so that you can make the best decision.

Jesse’s Experience

Age Range: 25-34
Location: Virginia
Autoimmune Diagnosis/Diagnoses: Ulcerative Colitis

Are you considered part of any "high risk" categories for COVID (excluding autoimmune disease)?
Yes. I am currently taking immune system suppressing medication as part of the management for my autoimmune disease.

Did you have any concerns about receiving your COVID vaccine?
Yes. I tend to react to the flu vaccine every year, causing a flare up in my UC symptoms, so I was nervous about the COVID vaccine. I have suspected that one of the reasons I react to the flu vaccine is because of the additional ingredients (preservatives, fillers, etc.) more so than the virus’s genetic material. After researching the ingredients in all of the COVID vaccines and learning there were no other ingredients besides the viral genetics, I decided to get it. I did a risk assessment and felt strongly that if I were to get COVID itself I would be putting my body, health, family, and community at a much higher risk than if I were to get the vaccine.

Are you under a medical provider's care? If so, did you consult with them before receiving your vaccine?
Yes, I spoke with my gastroenterologist beforehand to see if he had had any other patients who were also taking immune suppressing medications experience adverse reactions to the vaccine. He did not, so that also eased my concerns.

What sources of information (other than your personal medical providers) did you use to help address concerns or learn more about the COVID vaccines?
Center for Disease Control (CDC). I also spoke with other people in the autoimmune community who had received the vaccine to hear more about their experience so I could know what to expect.

What was your COVID vaccine experience like? Any side effects, autoimmune flare, or other symptoms?
The only thing I noticed after the first dose was a little more fatigue 24 hours after. I also noticed a few (3-5) small, raised bumps down the arm where I was injected about 7 days after injection. I contacted my pharmacist to see if I should be concerned and he simply told me to monitor them. They were itchy for about a day and then went away completely after a week. After the second dose I experienced flu-like symptoms for about 48 hours after injection. I had a fever for about 12 hours, chills and body aches for 24 hours, and fatigue/ lethargy for 48 hours. I received my second dose about a week before my menstrual cycle. I noticed my period symptoms were worse - heavier bleeding, more painful cramping. However, my next cycle the following month was back to normal. I never experienced a flare up of my autoimmune disease. Everything I experienced was just the result of my immune system learning how to attack a new virus in the future.

Since receiving your COVID vaccine has your behavior changed (ie, have you felt safer in public, traveled, or seen family, etc)?
Yes! I have definitely felt safer in public. I am still exercising an abundance of caution because I am on immune suppressing medication. So I still wear a mask inside stores or at the yoga studio or in crowded public areas. I have felt more comfortable spending time indoors with friends and family who are also fully vaccinated, but I still keep group gatherings to under 10-15 people. I also feel more comfortable staying in hotels. I haven't flown since the pandemic, but I have started to do road trips again.

As someone with autoimmune disease, what other steps have you taken to protect your health during the pandemic (beyond vaccination)?
Definitely wearing a mask and social distancing where appropriate! I've also been mindful about what kind of masks I use (double or triple layered.) I'm careful not to touch my face in public and carry hand sanitizer with me. I've also continued to eat my own modified version of the Autoimmune Protocol (AIP) and been mindful about my nutrient density - including foods like organ meats, bone broth, lots of leafy greens and seafood. Managing stress to the best of my ability is important in managing my autoimmune disease too. This has been more of a challenge in this incredibly stressful climate, but I've been prioritizing it where I can by seeking out mental health support with a counselor, taking breaks from work, spending time in nature, doing activities I enjoy, and getting good quality sleep.

Anything else you'd like to add that was not covered here, but that you feel is valuable to others in making their COVID vaccine decision?
Talk with people in your community and ask them their experience!

Parker’s Experience

Age Range: 35-44
Location: Minnesota
Autoimmune Diagnosis/Diagnoses: Psoriasis and psoriatic arthritis

Are you considered part of any "high risk" categories for COVID (excluding autoimmune disease)?
No

Did you have any concerns about receiving your COVID vaccine?
No

Are you under a medical provider's care? If so, did you consult with them before receiving your vaccine?
No

What sources of information (other than your personal medical providers) did you use to help address concerns or learn more about the COVID vaccines?
Independent research and a family decision.

What was your COVID vaccine experience like? Any side effects, autoimmune flare, or other symptoms?
Moderna 1st dose = zero symptoms, the 2nd dose knocked me out 1 day after and I slept for 20 hours, very lethargic but returned to normal within 48 hours.

Since receiving your COVID vaccine has your behavior changed (ie, have you felt safer in public, traveled, or seen family, etc)?
Felt safer and returned “to normal.”

As someone with autoimmune disease, what other steps have you taken to protect your health during the pandemic (beyond vaccination)?
Increased focus on diet and trigger foods, trying to get more sunlight (Vitamin D), and focusing more on my mental health with breathing exercises.

Anything else you'd like to add that was not covered here, but that you feel is valuable to others in making their COVID vaccine decision?
No

Rachel’s Experience

Age Range: 25-34
Location: Indiana
Autoimmune Diagnosis/Diagnoses: Hashimoto's Thyroiditis, and just recently Celiac Disease

Are you considered part of any "high risk" categories for COVID (excluding autoimmune disease)?
No

Did you have any concerns about receiving your COVID vaccine?
Yes

Are you under a medical provider's care? If so, did you consult with them before receiving your vaccine?
Yes, to both. 100%.

What sources of information (other than your personal medical providers) did you use to help address concerns or learn more about the COVID vaccines?
The CDC was one, but I also looked to trusted leaders in the autoimmune community (Dr. Terry Wahls was a great one, as well as Mickey Trescott and Dr. Billy Mitchell). I also had many conversations with friends and connections who have autoimmune diagnoses as well. The important thing for me was compiling this information and sharing it with my medical providers to make sure I was interpreting this data through the lens of my unique health status — as everyone's situation is unique. I also have the benefit of having a few physicians in my extended family, so I consulted with them as well. Leverage your network, if you feel they are going to provide supportive, unbiased information.

What was your COVID vaccine experience like? Any side effects, autoimmune flare, or other symptoms?
I actually had a really difficult time with the first dose. My side effects were extreme muscle soreness and body aches, as well as a slight fever, which all lifted after a few days. I reminded myself that this means that the vaccine was working, and just how serious it could be if I contracted the virus. My second dose didn't give me any issues.

Since receiving your COVID vaccine has your behavior changed (ie, have you felt safer in public, traveled, or seen family, etc)?
I have felt a lot safer since getting the vaccine. I've still been keeping travel to a minimum, but getting the vaccine has allowed me to see more friends and loved ones (and know that I'm minimizing their risk, too!). I think an added benefit of being able to do more of these activities is that my mental health has greatly improved, and a significant amount of stress and anxiety has been lifted from my shoulders. Considering how important stress management is to managing autoimmune symptoms, I see getting the vaccine as an important part of managing my autoimmune diagnoses.

As someone with autoimmune disease, what other steps have you taken to protect your health during the pandemic (beyond vaccination)?
Wearing a really good mask anywhere in public. Even after mask mandates were relaxed and I was vaccinated, I recognized the possibility of breakthrough infections (and the need to protect those around me, to be honest). Before vaccination, I limited my time in public spaces, especially indoor. This meant not going out to eat for a year, but an added benefit of that was that I really fell in love with cooking nutrient dense food again!

Anything else you'd like to add that was not covered here, but that you feel is valuable to others in making their COVID vaccine decision?
It's definitely a personal decision, but I think the most important thing is getting reliable information from your care providers and reputable sources. Weigh the pros and cons of both decisions — and make sure to weigh it all within the lens of your unique health situation (ideally with your physician!).

We hope this information is helpful for those in our community still making their vaccine decision. We’d also recommend checking out the episode archive and listening to an extensive series by Dr. Sarah Ballantyne on the Whole View podcast about the vaccine. And finally, we’d love to hear from you: has talking about this sensitive topic openly here on the Autoimmune Wellness site felt supportive to your autoimmune journey?

(Please be aware that while we invite thoughtful, respectful dialogue in asking for your feedback, comments on this article will be closely moderated. Abusive language, statements meant to instill fear rather than inform, and misinformation will not be tolerated.)

About Angie Alt

Angie Alt is a co-founder here at Autoimmune Wellness. She helps others take charge of their health the same way she took charge of her own after suffering with celiac disease, endometriosis, and lichen sclerosis; one nutritious step at a time. Her special focus is on mixing “data with soul” by looking at the honest heart of the autoimmune journey (which sometimes includes curse words). She is a Certified Health Coach through the Institute for Integrative Nutrition, Nutritional Therapy Consultant through The Nutritional Therapy Association and author of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol and The Autoimmune Wellness Handbook. You can also find her on Instagram.

119 comments

  • Shayla says

    Thank you for sharing. I really struggled with making the decision as there was no information such as this to help me make a decision for someone with AI. I did go into a flare up and still working to resolve 8 months later but my antibody levels are starting to decline. As a health care provider to those who are in the highest risk categories I still am satisfied with my personal decision and applaud you for posting.

    • Angie Alt says

      Shayla, thank you for your work as a healthcare provider & for sharing your experience.

    • Marilyn says

      Shayla, may I ask what autoimmune disease you have? Glad to hear you are slowly getting better.

  • Emma Szentgyorgyi says

    Thank you so very much for this article. I have Castlemans disease, and fibrosis of the lungs due to chemo treatment.. I am very very scared to take the vaccine.. I see my oncologist later in August, I think she is going to say I must get the vaccine. I also get very sick from the normal flu vaccine. I don’t know what to do?

    • Angie Alt says

      Emma, I’m glad this article was helpful & I’m glad to hear you are working w/ your doctor’s to make a decision. Thanks for sharing & wishing you full health.

  • Faith says

    Thank you for posting this! I hope you are planning to interview more people!

    • Angie Alt says

      Faith, you’re welcome! I’m not sure you we can realistically interview many more people, since it is actually a big organizational effort behind the scenes on top of our other work in the space, but we’re hopeful these stories are relatable & support others in making their decisions.

      • Jenn says

        Hello, it would be helpful to hear more stories from more serious types of autoimmune disorders and diseases. A lot of these stories were the same types of condition…psoriasis and eczema. It’s scary for people with family history of much more serious AI diseases.

  • Vanessa says

    Thank you, reading these comments are helpful. I have not been vaxxed yet as I am still trying to gather info. Thank you for creating a safe space to process.

    • Angie Alt says

      You’re welcome, Vanessa. I hope the info helps you in finding relatable stories as you make your decision.

  • Maria Kiternas says

    Thank you Angie, very helpful information for many of us out there. I have hashimotos, with many symptoms and also suffer from a skin disorder, called vitiligo. I was very concerned having the Astra Zeneca injection and hesitated for months. It’s been two months since my first jab, has slight symptoms twelve hours after the jab. Headache and flu like symptoms, and a sore arm with little swelling around the jab area. Flu like symptoms past over the 12 hour period and my arm sore for three days.. nothing major. I was also concerned with the pigment on my skin getting worse. Glad to report, no changes. Thanks again. Stay safe all. Regard

    • Angie Alt says

      Thank you for sharing your experience, Maria!

  • Jane says

    Thank you for this – there is so much negativity around the vaccine for all people. It is a difficult time to navigate through this Covid situation, and with so much news and fake news bombarding us on the internet, it is so important to make informed choices. This was really good to read. The questions were great too. Together we can do this.

    • Mickey Trescott says

      Jane, we’re happy you found it helpful!

  • Jane says

    PS: i have had my two shots of AZ – and had no significant side effect except for some tiredness after each, but nothing major. I also have an autoimmune disease but when i weighed up the facts, spoke with my doctor and look forward to getting my freedom back to travel and live as we once did, the choice to vaccinate was straight forward.

    • Angie Alt says

      Jane, thank you for sharing & encouraging.

  • Abbe says

    Can’t thank you enough for doing this-I have Hashi’s, I’m histamine intolerant, celiac, & have MCAS- I have just been cleared by my Endo to do the vaccine. Been reading, weighing, along with social distancing, eating Only on patios, not socializing with anyone not vaccinated- this was Very helpful. I’m very worried about the shot &/or getting the virus. Going to get vaccinated soon.

    • Angie Alt says

      Abbe, so glad this helped along w/ discussing thoroughly w/ your doctor.

    • Mickey Trescott says

      Hi Abbe, if it helps I have Hashimotos & celiac, and I received Moderna in April & May and have had no flare/side-effects (besides a sore arm). Wishing you luck!

    • Sherilyn says

      Hi Abbe, I hear you! I was right there with you. I have Hashis, Psoriasis, Raynaud’s, Rosecea, IBS, MCAS, CFS, and who knows what else, oh and I am a corona long hauler from Swine Flu (or at least now hearing about COVID long haulers and recognizing they are going through exactly what I went through 11 years ago and still live with my doctor and I are speculating that’s a lot of my unresolved problems). I was extremely scared to get the vaccine for fear of flaring everything especially since I’m in a pretty good space. I read/watched arguments from both sides (my sister is a huge anti-vaxer so she gave me plenty to contemplate!) and tried to debunk what I was reading/hearing. Listening to Dr Sarah’s multi-part podcast series on vaccination in general really helped me better understand what the vaccination was about, but it was Mickey’s interview with Dr Terry Wahls which put me over the top when I finally decided to get the vaccination. I was sick to my stomach waiting in line to get the shot. My anxiety was through the roof so I had to self-talk to keep myself calm (oh and I took Sunthianine). In the end, I got Moderna in April and May. I was prepared for the worst so got the shots on Friday afternoons. I ended up with a mildly sore arm, more like a bruise (I could still lift my arm unlike many). The 2nd shot was even milder and I didn’t seem to have any flare of any of my AIs. Even went to a small, family baby shower the next day). I know we all react differently but I hope hearing my story will help you too! Best wishes!

  • David Ross says

    Thanks for posting this. My Facebook support groups have pretty much banned all vaccine talk because of the divisive nature of it, but as someone with genuine concerns we need these peer discussions to help make a decision. I’m yet to have mine because of fear – not fear of the vaccine itself but what will happen with my condition (Ankylosing Spondylitis). How can we know unless people allow us to talk about it! I’m that little bit closer to getting mine now, so thank you!

    • Angie Alt says

      David, we’re so glad this could help you further evaluate. We’d encourage you to work w/ your doctors on making the final decision, but if it’s helpful I have group members w/ AS who are in Europe & done w/ their vaccines at this point. They’re doing great.

    • Lynn says

      I to have AS and have not received my vaccine for the same reason as David’s. Friends and family members with AI have advised against the vaccine because of unknown long term affects. I have researched the CDC website and other resources to help aid in my decision. I go back and forth and have not received satisfying, confident information from health care providers. In fact l have gotten conflicting information from health care providers from news media, internet and personally. I am waiting before I decide to get the vax or not. It’s an agonizing decision.

      • Mickey Trescott says

        Lynn, I know others in a similar situation weighing conflicting information and balancing fears of covid with fears of vaccination. Wishing you peace and good health no matter what you decide.

  • Lilly says

    I have been diagnosed and am being treated for late Lyme and multiple coinfections. My health care provider is not advising me to get the vaccine yet due to unknown long term side effects, etc.. I would like to hear your experience with Lyme patients.

    • Angie Alt says

      Lilly, thank you for sharing & glad you are working w/ your healthcare provider to make the best decision for you. Maybe others w/ Lyme will add their experiences here?

  • Mary Ellen says

    Thought I would add in my vaccine experiences. I have Hashimotos and I was worried about side effects. My first dose was Astra Zeneca and after the vaccine I experienced a very sore arm, flu-like symptoms lasting for several days, and I was unable to sleep the first night. I didn’t feel back to normal for about a week and a half, but then I felt fine. My second dose was Moderna, and again I had a very sore arm, and body aches, mostly in my neck (my neck has always been a sore spot for me as I have forward head posture and go to the chiropractor for it). I had enough neck pain (back of neck/ not the thyroid) that I had to take Advil ( I normally try not to take NSAIDS for pain), but this helped alleviate the pain. This went on for about 2 weeks. Then, everything felt normal again. Two months later, I still feel normal. I am glad I am vaccinated.

  • Melanie Whittington says

    I have Hashimoto’s. I took the Moderna vaccine. Between my first and second dose I started getting hives every morning. I only had hives once before & that was 15 years ago. I am not sure if the hives are from the vaccine or if the vaccine caused my hashi’s to flare, which created the hives. For 4 months I experienced hives almost every morning. I am seeing an allergist now. Nothing else has changed that I can think of that would cause this type of reaction. Six months later & I am still experiencing frequent hives.

    • Angie Alt says

      Melanie, I’m sorry to hear you are getting hives & have not been able to figure out the cause yet. Wishing you lots of care w/ the allergist & hopefully getting it cleared up. Thanks for sharing your experience.

      • Evan says

        Angie, have you heard about a situation like my brothers, described in the comment to Melanie?

        • Angie Alt says

          Evan, I have not. I’m sorry to hear it & hope he finds answers.

  • Maggie says

    I really appreciate this information and the way it was presented. It helps me to have an example about how to have this conversation with others in a compassionate and graceful way. Thanks again for the work you all put into it.

    • Angie Alt says

      That was really our deepest intention, Maggie. Glad it helped!

  • Cathy Enright says

    Thank you for this article. I’ve shared it on my social media because I know some folks who are hesitant and maybe this will help. I have autoimmune diseases and while I wasn’t quite hesitant, I was very concerned that the vaccine may set off a flare. I was prepared and had decided (with docs help) that I would without a doubt get the vaccine as soon as available for me. I’m glad I did! No autoimmune flare, though I did have flu-like symptoms after the second dose. Well worth it!

    • Angie Alt says

      Good job working w/ your doctors & making the best decision for you, Cathy.

    • Christie says

      I has psoriasis and psoriatic arthritis and work in a hospital but not with patient care (but with a good medical understanding). I sat on the fence for a very long time before deciding to get the vaccine. I was especially hesitant to get the AZ since I found out the cause of the blood clots people were having from it was due to AI response. Australia didn’t have enough Phizer until recently so I only just got my 2nd jab in August. I had a sore arm and general muscle aches and pains the next day after the first vax but was fine after the second. What eventually pushed me to make the leap to get the vax apart from working at a hospital, was that I also have asthma and so does my 2yo daughter and I knew we would unlikely fair well if we caught covid. So instead of worrying about the possible long term effects of the vax I had to think about the here and now and also possibly long covid effects too. Goodluck to all having to make this decision.

  • Leigh says

    Thank you for this article! It’s really helpful to hear from people in similar situations! As someone still unsure of whether or not to get it (in recovery from Lyme and CIRS), it’s nice to not read something polarizing, shaming, or fear-inducing! Thanks for some more input. Also, nice to see additional personal experiences in the comments.

  • JoAnn says

    Thanks so much. This was very helpful.

  • Kat says

    After years of becoming extremely ill with the flu despite getting flu vaccine , testing revealed my body does not make antibodies and there is a problem with TCell 4 and 8 and B cell and IgM. I was cautioned to never again receive any kind of vaccine. Prior I had been diagnosed with MECFS and FS. Needless to say I am the first on the block to get whatever is going around and the last to get over it. So yes I did not get the Covid vaccine and yes I have had Covid …twice, possible because I don’t make antibodies.
    I am writing to reassure people’s fears about becoming ill with Covid. I was immediately put on antibiotic prophylactically to prevent pneumonia, 2 different antivirals, an antifungal, and supplements of zinc, vit D,C.A glutathione plus Tylenol codeine 3 and prescription lidocaine patches and cream. I rested and did a lot of yoga deep breathing. It was like being sick with a bad flu, not fun but definitely manageable. I just want to reassure those who cannot get the vaccine that there are steps they can take to minimize Covid susceptibility and/or treatment. If you can get the vaccine absolutely do so. For yourself and to create herd immunity.But if you can’t, don’t panic and don’t bury your head in the sand. Follow AIP and take those products you can to support your immune system.Also wear a mask, wash you hands, wipe down door handles, social distance etc.

    • Angie Alt says

      Thank you for sharing, Kat. It’s for folks like you that those of us who can take the vaccine safely should do so. This is community care.

    • Cheryl says

      What does FS stand for?

      • Mickey Trescott says

        Cheryl, sometimes people use FS to refer to fibromyalgia syndrome, but maybe Kat will chime in to clarify.

  • Margo Ervin says

    Thanks so much for putting this article together for our community. I’m glad you featured the majority who got the shot because we’re all wondering what the symptoms are like for those of us in the AI community. I have celiac, Hashimoto’s and a couple AI skin conditions. For my first Moderna shot I had the typical symptoms that most people get with the second. For my second shot, it was the same, minus the fever and a headache for about a week. I was tired that whole week too. But I am SO glad I’m vaccinated because I just know that I would be one of those people with the cytokine storm and probably long Covid too. I’m waiting to see what the CDC says about booster shots. I am confused about one thing though… are we considered immune deficient? I read articles that say we are and some that don’t seem to mention us at all.

    • Angie Alt says

      Thanks for sharing, Margo. Some people w/ autoimmune disease may also have immune deficiencies, but in general autoimmune disease means our immune systems are overactive, not under.

  • Cheryl Lundgren says

    I got the Moderna shots. I have Hashimoto’s. I’m 73 years old. Shot #1 had very very slight flu symptoms for first day. About 4 days later my arm started inching and I got COVID arm. Big welt about 4 inches across and 4 inches wide. Lasted about two weeks but only itched those first few days. Shot #2 I had flu like symptoms for about a day and a half. Ran a fever of about 3 degrees. Got COVID arm again but not as big as the first shot. Definitely glad I did it. Symptoms weren’t bad.

    I do get a welt from flu shots too so it’s probably some reaction to whatever is in the shot.

    My youngest daughter who is 41 is anemic. She really had some strong reactions to the shots she got. She also got Moderna. She waited a while longer to take the second shot until she was able to reduce her anemia through supplements. Second shot made her very ill but only for about a day or two. First shot really messed with her menstrual cycle for about two weeks. She is incredibly glad she’s through the shots and very relieved to have had them.

    • Angie Alt says

      Thanks for sharing this experience, Cheryl.

    • Mickey Trescott says

      Cheryl, thanks for sharing these experiences, and I’m happy you are both on the mend. I also have Hashimoto’s, and although I was lucky to not have any side-effects from either shot (Moderna), I did have a short menstrual cycle after shot #2 that normalized my next cycle. I’ve heard similar things from other women as well.

  • Lois says

    I was very concerned about getting the vaccine. I consulted with my naturopath, and she said she had not been able to get enough information to feel comfortable making any kind of recommendation. I finally found some info on the CDC website. I chose to get the Jansen shot because I thought there was less risk involved. [The 2 newer vaccines had not been tested on people with autoimmunity.] I got very sleepy 24 hours after the shot but otherwise no problem.

    • Angie Alt says

      Thanks for sharing Lois!

    • Brittany says

      This is a very cool space and I am grateful people are discussing their experiences. Thank you all for sharing. I do reccommend if you had any sort of reaction to the vaccine – please report it to Vaers. This is still experimental and the more data they have to track what is going on, the better.

  • Brenda Eisele says

    Thank you for posting. My husband and I had made the decision to get vaccinated. With the out break we are facing we knew that we really needed to do it. I have had a lot of anxiety about it, afraid it would cause me to have complications with my Hashimoto’s. Before we were scheduled to go I received your article. This put me more at ease. I have had my first shot yesterday. Arm is a little swore with no other reactions. Thanks again for the information, it made all the difference in the world!

    • Angie Alt says

      Brenda, what great timing! I’m so glad this helped you good about your decision.

  • Alisa Elliott Rector says

    Thanks for posting this! I think psychologically it’s important to do what makes one feel safe. As a pediatric therapist, I have worked closely with children who were irreversibly injured by their vaccines- we know statistically that a minority will have an immune response to a vaccine that injures them. The United States has a fund for these people. So having seen the worse case scenarios makes me very uneasy about vaccines. Both for what they do to the integrity of our own immune system (we really don’t know the accumulated effects over time) but the expectation that it’s okay to injure people for the “greater good”.
    To me the greater good is collectively taking care of our own and each other’s health through cleaner living. We know so much more about how to do this- we just haven’t learned how to make clean living accessible and motivating for everyone.
    One extra step that we take as a family is daily saline nasal flushing.

    • Angie Alt says

      Alisa, thanks for sharing your professional experience. You do point out something really important & weakness in your vision of the “greater good.” In your own words, “We just haven’t learned how to make clean living accessible . . . ” There are ways to mount huge, nation-wide efforts to vaccinate as part of our pandemic response, but as a society there is NO cohesive movement to help every person “live clean.” Even more important, in this pandemic situation the “collectively taking care of each other’s health” has proven to be unachievable, due to denialism that COVID even exists, rejection of basic masking & physical distancing, etc. We are not rejecting the idea that in rare instances vaccines can injure people or that injury is “no big deal,” but your proposed approach to remedying that isn’t possible & would leave us w/ no option to ever control the pandemic.

  • Stephen says

    Hi,
    Thank you for the informative and poignant newsletter. The simple question I asked myself when making the vaccine decision was,
    “Would I use the first-class medical services available to me in this country if the situation arose”?
    The same wonderful medical industry, with all the dedicated doctors, nurses and hospital staff that helped me recover from my heart attack.
    The answer was obviously Yes.
    By pushing my fears and apprehensions aside and having the ‘Jab’, I know I will help protect any health worker that I will ever engage in the future.
    The question pushed the ‘little me’ out of the equation and gave me a focus of ‘Us’.
    Cheers from Oz.

    • Angie Alt says

      Stephen, what a great way to frame this! Thank you for sharing & focusing on community care.

    • Mickey Trescott says

      Stephen, thank you for adding this to the discussion. Often the impact on our health care workers is not considered, which is unfortunate as they are under an incredible amount of stress due to this pandemic. Wishing you the best.

  • Grace Krogh says

    Thank you for being willing to dive into this issue, it’s so important! Sarah Ballantyne’s four part podcast series on the Covid vaccine was so reassuring for me and ultimately convinced me to go for it even though I have Hashimoto’s. I’m so glad I did! Three months post vaccine and I didn’t have any side effects or an autoimmune flare.

    • Angie Alt says

      Grace, thank you for sharing & yes, Sarah did us all a big service providing that information.

    • Mickey Trescott says

      Grace,
      Sarah’s podcast series was instrumental for me as well. For anyone looking, here is a link: https://www.thepaleomom.com/podcast-covid-19-mrna-vaccine/

      I also have Hashimoto’s and experienced no side-effects from either dose (Moderna). 30 days after my second dose my antibodies were 1/2 what my usual (non-flare) levels are, and I feel great.

  • Morgan says

    I have axial spondyloarthritis. I administer Covid-19 vaccines as a nurse, and got the Moderna vaccine myself. My arthritis, fatigue and POTS did flare a bit with both doses but leveled off after a week or so.
    Deciding whether or not to hold my immunosuppressant medication was a difficult decision. I talked to my doctor and did decide to hold it because I was working with unvaccinated patients and felt safer knowing I had a full response to the vaccine. I did find that my medication was not as effective for me after holding it, and ended up eventually switching meds. Because of that it took some time to get back to my prior baseline for my symptoms, but I am there now! I feel good about my decision. I finally felt comfortable starting physical therapy after my vaccination which has given me a big boost in my well-being and self-confidence.

    • Angie Alt says

      Morgan, thanks for sharing your experience & working w/ your healthcare team to make a decision. Additionally, thank you very much for your work in this time. We are indebted to frontline healthcare workers like you.

    • Mickey Trescott says

      Morgan, thank you for sharing how you handled vaccination with the decision to hold your immunosuppressant medications. These are the kinds of situations I know a lot of autoimmune folks are facing right now, and I know someone will be helped by hearing you talk through your options and strategy.

  • Sasha says

    Awesome post, Angie, and I think the comments that follow reflect the wonderful community you’ve created.
    I got Pfizer. Sore arm after the first; flu-like after the second for about a day. I wound up taking some Tylenol because the fever and neck pain interferes with sleep. I spent most of the next day in bed but then was better the next day. I am happy to say I have not experienced flares in Hashi’s, lichen schlerosis or raynauds. I think my period has gotten lighter but that may be unrelated.
    I was nervous, but for me, I figured if the vaccine caused a flare, actual COVID would be worse. And my son is in daycare, so I consider myself exceptionally lucky that we got through several daycare exposures without illness.
    I’m super glad that my family (besides my son) and I got the vaccine. We got to travel to see family and likely wouldn’t have gotten on a plane without vaccination. I have even looked for vaccine trials for my son but there aren’t any in our state.
    Thank you again for creating this space!

    • Angie Alt says

      Sasha, you are so welcome. We are working hard for this space to be all about community care. Thanks for sharing your experience.

    • Mickey Trescott says

      Sasha, thanks for sharing your experience. Your period changes may be related to vaccination – I experienced a super short cycle after my 2nd dose of Moderna, which normalized by my next cycle. I have Hashimoto’s and had my antibodies & thyroid hormones checked 30 days after vaccination, and not only were my antibodies 1/2 my “healthy normal,” but my hormone levels were fine. I’ve heard of other women having temporary menstrual changes as well.

  • Deb says

    I have a rare neuro auto immune condition for which I take an immune suppressant. I am allergic to several medications including steroids. I have been medically advised not to get the vaccine as a) it could trigger an attack and I am immune suppressed with very good reason – why would I mess with that? and b) I don’t mount an immune response so there is simply no point in injecting me with something that could cause such harm in someone like me. I would assume this medical contraindication applies to most people who take an immune suppressing medication. I hope everyone is doing their own research.

    • Angie Alt says

      Deb, thanks for sharing your experience & working w/ your medical providers to make the best decision for you. It is important that we don’t assume this applies to all people on immune suppression, because it does not.

    • Mickey Trescott says

      Hi Deb! We definitely recognize that there are some people for which vaccination is not appropriate. Part of my reason for wanting to get vaccinated is to offer further protection for those who can’t (like immunocompromised and children).

  • Tania says

    Thank you so much for this. I agree with the comment from someone who thanked you for presenting this with grace and compassion. Since it has been hard to get specific information about COVID and vaccines as they relate to the auto-immune community, it was a gift to read folks’ experiences. I have Hashimoto’s and did not have any concerns about the vaccine because my fears about how COVID might affect me were greater. I also wanted to do whatever I could to protect my younger children. The first shot of Pfizer only led to a slightly sore arm. The second shot did cause flu symptoms that lasted maybe 24 hours (fever, fatigue and a headache). I did develop a rash on my arm but it went away on its own and I do not know if it was related. I have continued to mask and practice social distancing in public, but getting the vaccine allowed me to enjoy the most important things I missed like hugs and small bookstores. 🙂 I was very grateful to get the vaccine and I am eager to get a booster when available to protect against Delta and other future variants.

    • Angie Alt says

      Tania, I’m glad this feels supportive to you, thanks for sharing your experience.

    • Mickey Trescott says

      Tania, thanks for sharing and I’m happy you were able to get those important hugs and bookstore-trips in post-vaccination! Wishing you well.

  • Silvana Schulz-Brown says

    This is a wonderfully thought out way of sharing experiences around vaccination in the AI community! I am a certified Health Coach currently studying Gut Health and have Hashimoto’s and urticaria. It is refreshing to see alternative health practitioners embrace the amazing science that is behind developing the lifesaving Covid vaccine. My sister is an oncology nurse and fellow Hashimoto’s & asthma sufferer, living in Germany where BioNTech co-developed the Pfizer vaccine. I leaned heavily on her testimony and research by her clinic as well as following the WHO information, Sarah Ballantyne’s Podcast on vaccine safety and my own medical provider’s (ND’s & MD’s) as well as reading anything and everything I could get my hands on to inform myself. I decided that getting Covid was a risk that I did not want to take with my auto-immune body and so I had the Pfizer 2 shot series and had very minor side effects (sore arm after 1st dose, slight shivers & tiredness after 2nd dose). I hesitated vaccinating my 12 year old daughter for fear of it being harmful to a young & developing body but with school fast approaching we went ahead and she received her first dose of Pfizer and only had a sore arm for 1 day. Knowing that she is going back to a full time in person school scenario (after 1 1/2 yrs of being at home) and she will be on a campus of 800 students and 100+ faculty staff it just seemed too high risk to send her unprotected. I am happy with my decision and have had no auto-immune flare or any other change in health.

    • Angie Alt says

      Silvana, thank you for sharing your experience & working so closely w/ your own healthcare advisors & trusted sources to make your decision. And so thankful for your sister’s work in this time, all healthcare providers deserve our support right now.

    • Mickey Trescott says

      Silvana, thanks for sharing your story and wishing both you and your daughter well.

  • Sandra says

    Thank you for the information, it was interesting to hear others’ experiences. I have RA but not taking any meds. I was a little concerned about possible reactions, but nothing but a sore arm and some extra tiredness. I will take a booster when it’s recommended. I don’t want to end up in the hospital with astronomical medical bills if I can help it.

    • Angie Alt says

      Sandra, yes, even if we “survive” the virus, the after effects, including, unfortunately, the financial ones are a serious long-term issue. Glad this was helpful.

  • Lynn Massey Liles says

    Thank you for this article. I’m 66 years old with IBS, severe allergies and rheumatoid arthritis. I was concerned about all I’d read about the side effects so I spoke with my rheumy doc. He wanted me to get only the Pfizer vaccine. He thinks it’s the mildest. He’s lost 5 patients to the delta variant in the last month so he wanted me to get it immediately. I got the 1st shot 2 weeks ago and am getting the 2nd shot tomorrow. The only side effect that I had with the first shot was a very sore arm and I got a severe sinus and ear infection a few days later. Had to get antibiotics and steroids. Am off of the them now. I have to stop my rheumatoid arthritis drug for 5 days to get the shot so I start to hurt a lot by then. Hoping to be finished soon because, I, like those in the article, will feel much safer out in public. I’ve avoided public place except when I had to. Thank you again…Lynn

    • Angie Alt says

      You’re welcome, Lynn. Glad this felt supportive & you had a good doctor to help w/ your decision.

  • PM says

    Thank you for posting all of these experiences and providing information in such an objective and informative way. I have Crohn’s and got the Pfizer vaccine back in April/May. It went perfectly fine (only some expected fatigue for a day or two), and I was really grateful that modern science brought us a solution so quickly to this pandemic. I happen to work in the biotech industry, so I have a real appreciation for the rigor of clinical trials and how well these vaccines have been studied given the time pressure scientists were working against; it’s really a feat of human ingenuity.

    • Mickey Trescott says

      Thanks for sharing PM, and thanks for sharing your perspective as someone who works in biotech.

  • Tina says

    Just wanted to say thank you for this article and to everyone for sharing their experiences. I was wondering if anyone with the MTHFR gene mutation has taken a vaccine and what their experience was like. It’s not an autoimmune issue, but I know many (myself included) who see a functional or integrative doctor have been tested for this. Thanks!

    • Mickey Trescott says

      Hi Tina! I think you will find a lot of folks with MTHFR mutations in the autoimmune community. I am compound heterozygous (one mutation on each gene) for MTHFR and I had no side-effects from the Moderna vaccines I received in April/May. I do think it is smart for those who have methylation dysfunction to ensure they are well-nourished/managed before getting vaccinated, if that is their choice. That might look like eating lots of those methyl-donors or taking some supplements as recommended by their practitioner. Personally, I had some liver pate the morning of both vaccination appointments. Not sure if it helped, but I’m sure it didn’t hurt!

      • Nicole says

        Thank you for sharing your experience Mickey! I have Hashimotos, beginning markers for Lupus, and 2 MTHFR gene mutations. I’m very nervous about getting the vaccine because of it. I also had Covid last December & was thankfully able to beat it with no hospitalization or long haul symptoms to my knowledge. Really thankful for this thread and discussion for being such a safe space to share and learn.

        • Mickey Trescott says

          Hi Nicole, I’m happy to hear you recovered well from Covid, and that you are finding this discussion helpful. Wishing you well.

    • Angie Alt says

      Tina, I am homozygous C677 for the MTHFR mutation. I had no side-effects from the Pfizer vaccine I received in Mar/Apr. Like Mickey I concentrated on high-quality whole foods ahead of vaccinations + I take a doctor recommended supplement to help support methylation. Hope that is helpful.

  • Wendy Lerch says

    I did appreciate this article, and the contributions from various people about their experiences. I have also been following a survey group specific to the MS community which has people globally responding as to whether they have had difficulty with the vaccines – that population seems to be running about 50% with no issues and 50% with issues ranging from mild to severe. Your article does certainly provide a clear space for honest and open dialog with a focus on acceptance and validation, however I was surprised with the choice of this phrase: “…there may be some legitimate vaccine hesitancy…” I believe we need to see all vaccine hesitancy as legitimate, and this phrase suggests that there could be some vaccine hesitancy that isn’t. Thank you for providing a space to share concerns and realities with the purpose to provide more information as people do their best to make informed decisions.

    • Angie Alt says

      Thanks for sharing about the MS community, Wendy. And we understand your position on hesitancy and appreciate that you recognize the efforts we are trying to make here.

  • Doranne says

    I have Myasthenia Gravis. The first shot was fine. My arm was a tad sore. The second shot by the evening of the first night i could not move my arm, I had chills and fever over night and body aches as well. My fever broke the next morning and i was very tired and achy so slept all on day 2. The next morning!” Day 3” I woke up 100% back to normal , no aching, not tired etc. I have been in remission for 5 yrs. No meds.I am Vegan. And only have minor muscle weakness from my MG unlike in the past, so now i rest as needed daily.

    • Angie Alt says

      Thanks for sharing your experience, Doranne.

  • Kerri Myhre says

    I had 47 days of menstrual bleeding and an significant increase in my ANA and now test positive for anti dsDna antibodies that I have never tested positive for in my 25 years with multiple autoimmune diseases. Graves, RA, Sjögrens, psoriasis

    • Mickey Trescott says

      Kerri, I am sorry to hear this, and I hope you are on the mend!

  • I so much appreciate the intentions and nature of this article. At the same time, I did not see my experience, nor the experience of a close friend of mine, reflected in any of the responses. I have Epstien-Barr, both MTHFR gene variants, lots of skin issues, and chronic fatigue. My friend has Lupus and Epstien-Barr, among other things. We both experienced large menstrual cycle changes (she ended up in the ER with hers, for me it was my period coming back for four months after menopause). After the second dose in particular, my whole body was flaring/painful/inflamed and I could barely walk for about 48 hours without my joints collapsing. As the pain subsided, I was left with about six weeks of dull headaches, extreme sleepiness and thirst, brain fog, muscle pain and tiredness, and a burnt tongue feeling (I had so many symptoms for Sjorgen’s suddenly, as did my mother incidentally, that I got tested and was thankfully negative.) My friend, too, was exhausted and not able to function well for about 2 months. I say this not to scare anyone away–I will be getting the booster and I would rather have these reactions than the unknown of Covid or long haul Covid, but I have to say it was not easy, either, and in reading everyone’s stories I felt strange that no one in any of the stories had anything beyond a few days of flu-like symptoms.

    • Mickey Trescott says

      Hi Robin! I am sorry to hear about the experience you and your friend had – we are definitely aware that some folks have not responded well, and I’m grateful for your sharing here in case others are in a similar boat. I also experienced a change in my first menstrual cycle post second dose (Moderna), I had a 24-day cycle opposed to my typical 28. I was back to normal by the next cycle and have had no changes since (Its been about 4 months). As Angie has mentioned a few times in the comments here, the folks interviewed were ones that we’re close to in the AIP community that had various reactions and reasoning to getting or not getting the vaccine, but they definitely do not represent all of the possibilities of what is possible or reasons for hesitancy. Hope you are both feeling well again, and thanks again for sharing.

      • Robin says

        Thank you, Mickey. I appreciate your care. Yeah, the period returning after not having it for months and months was really weird! I wonder, too, if I had Covid in March 2020, as many people in my community did. It was hard to know if not feeling well then was stress and/or flare, or actual Covid. (Though having a strong response to the vaccine a year later seems like too much time in between.) I had Moderna, by the way, and will get the booster in two months. I’m thinking after reading some of these other responses that perhaps going strict AIP for a month before and 6 weeks after would help (as I have tested in three or four things over the past few years). Thank you for all you do. <3

  • CG says

    Hi, I have received both the J&J vaccine and a Pfizer shot and wanted to share my experiences. I am 38 with Celiac and Hashimoto’s, and I may have had the original Covid back in late February 2020, but since testing was not available then, I can’t be sure. However, I was so sick at the time that I went to Urgent Care where I tested negative for strep and flu. It took me 6 weeks to fully recover from that original illness.

    Initially I was very hesitant to get the mRNA vaccines because of the higher percentage of reported side effects, since I have a history of autoimmune reactions to medications and the flu shot. So I went for J&J in April 2020 because it was one shot and had a lower side effects profile, and all members of my family were working at home so I had a low risk of exposure and didn’t need to go for the higher efficacy rates of the other vaccines. After the shot, I had one day of flu-like symptoms followed by about 10 days of off and on brain fog and an odd sort of inflammatory headache that came and went. For six weeks after the shot, I ate strict AIP and made sure to do all the things I could to lower inflammation (good sleep, supplements, yoga, meditation). I had no lingering health problems after about 10 days.

    Now because of the Delta surge, my doctor felt that the J&J might not be providing me with enough protection, and my spouse is now working outside the home, so she advised me to get a Pfizer booster. I had a very strong reaction to this shot as well, including fever, aches, headache, elevated heart rate, and shortness of breath, for about 36 hours. However, 48 hours after Pfizer, I was feeling great!

    My reactions to both vaccines felt very similar to how I felt when I was originally sick with probable Covid, and some doctors have observed stronger reactions to the shots in people who previously had Covid. Many people I know with autoimmune disease, who did not have Covid, had no reactions to the vaccines at all.

    I plan to take care of myself for the next 6 weeks the same way I did back in April, strict AIP for 6 weeks and other anti-inflammatory behaviors (good sleep, supplements, yoga etc.) If vaccines are going to cause any kind of additional autoimmune situation, it would happen within the 6 weeks following the shot (as I learned from the Whole View podcast!), which is why my timeframe for post-vaccine anti-inflammatory care is 6 weeks.

    I know this is a stressful decision to make when many of us have been sick for so long already and worked so hard to get well. But ultimately my doctor and I determined that a severe case of Covid, or developing long Covid (which my doctor says is another autoimmune disease), posed more of a threat to my health than the vaccines.

    • Mickey Trescott says

      Hi CG! Thank you for sharing your response here. I know a lot of folks are looking for information about “mixing” vaccines as well as what to expect with vaccination after a covid infection. Wishing you well!

      • CG says

        Thank you! Also, I forgot to mention I do also have the MTHFR mutation. I know that’s a concern for many people with vaccination, so I wanted to make sure I didn’t leave that out from my experience in case others are worried about that in their situation. Making sure I eat liver and all the other good foods that promote methylation is on my post-vaccine care list!

  • Pauline Zink says

    Mickie and Angie,
    thank you for addressing this important topic. I think so many of us rely on your website as a source of valuable information to help in dealing with our individual health challenges. I appreciate you both so much. Although hesitant myself, I found that the “mental health” and “stress” was profoundly affected in a positive way, which was not something I had considered until afterwards. I had J&J in April 2020 and did not experience much other than a slight soreness at the sight. I did however within two weeks have extreme inflammation in left hip and knee which lasted for several months. My knee kept locking. Doctors could not see anything on x ray or MRI. I am in no way saying this was caused from the vaccine but just an observation which had no explanation. After 4 months the inflammation has subsided. I am relieved none the less to be vaccinated and feel more protection because of it.

    • Mickey Trescott says

      Hi Pauline, we’re happy this post has been helpful for you, and thanks for sharing your experience.

  • Kristen says

    All I have to say is THANK YOU! Even more encouraging than the article were the comments of people respecting and encouraging each other’s decisions and choices. Going through autoimmune issues is NO fun, but for those of us who have suffered it has obviously affected how we respect and honor the difficulties of going through this and the decisions we must make instead of one way being right and the other way being wrong. This shows that no matter what your decision we can be respectful, kind, and supportive. Now THAT is how it is done!! Wow!

    • Mickey Trescott says

      Kristen, we are grateful to everyone who has shared respectfully here, as it continues to add to the important discussion. Wishing you well!

  • Pam says

    Thank you for this article, and for all of the commenters as well. I have Hashi’s, celiac, a casein allergy, multiple drug/medication/substance allergies, MTHFR mutations, and have had allergic reactions to vaccines in the past. I have Epstein-Barr as well. I’ve worked really, really hard to be in as good health as I am in right now and am unwilling to take the risk in getting vaccinated.

    I believe I had Covid in Dec 2019, but like another poster cannot be sure because testing was not available for me in time. I was very ill for 2 weeks, and had lingering symptoms for another 2 months, and am now fine as far as I can tell.

    This past week I had a terrible interaction with my GP (who I see once a year, my primary care physician is my endo) about vaccination. She was unwilling to listen to my concerns, and was very patronizing and dismissive in light of my myriad health issues. I’m the person who, if there is a reaction that can/will happen – it will happen.

    Thanks to reading this, along with many many many articles and studies over the past few days feel more resolved hold off. I don’t go to restaurants, I do basic things around my neighborhood, see a few select people, exercise outdoors, eat well… all the things we all do with AI to stay healthy – in this, and all, times.

    • Mickey Trescott says

      Hi Pam! I’m sorry to hear you had a bad interaction with your GP. I appreciate that even if you are continuing to wait, that you are trying to minimize exposure to others, which I think is an important piece for anyone who is going without.

  • Erin says

    What are your thoughts on the Johnson & Johnson vaccine now (considering current data and studies)? My husband got it last week and only had some fatigue and just felt run down for half a day. He took a short nap and felt much better. I have a history of Hashimotos (thyroid numbers fine now), chronic pain, and histamine issues. I’ve never had a reaction to a vaccine, but I have reactions to other things (like a crown on my tooth, local anesthetics, and a breast biopsy clip). Can anyone speak to their experience with the J&J vaccine? I am hoping to get it on Friday, as I’ve had a lot of debilitating anxiety about covid lately and would like to gain some immunity faster. I’ve been taking some supplements to prepare my body for vaccination for the past two weeks and I’ll continue those for at least three weeks after.

    • Mickey Trescott says

      Hi Erin! I can’t comment much on the J&J because I focused my own personal research on the mRNA vaccines (specifically Moderna, which is what I received). I recommend Dr. Sarah Ballantyne’s podcast series on the J&J vaccine specifically for more info (and her other podcasts on mRNA are great as well): https://www.thepaleomom.com/podcast-jj-astrazeneca-vaccines/

      Wishing you luck!

  • Kendrah says

    Hi, I have Lupus SLE, Lupus Nephritis, Sjogren’s, RA, Fibromyalgia, High blood pressure , Asthma, and pre-diabetic. I have yet to receive the vaccine. My doctors are recommending it but I am allergic to so many foods and drugs. Me and my children don’t go anywhere because of my health and they have asthma also. I worry about not making any antibodies. I worry that I will have major reactions and either be worse off than I am right now or die. I am not anti vaccine but this is such a hard decision. However being anxious all the time about getting Covid is also not helping. I also don’t like the fact that they give you a shot and then send you home. I am afraid I will get symptoms while I am at home with my kids. I wish I could get it in the hospital and they monitor me for a day just to be safe. It’s such a catch 22 for me.

    • Mickey Trescott says

      Hi Kendrah! Thank you for your vulnerability here. You are not alone, and sending you peace and good luck for navigating this tricky situation.

  • Patria M. Lugo says

    Thank you for this information.
    I am a community pharmacist and a psoriasis and psoriatic arthritis patient. I received orientation from my Rheumatologist and my sister, a Family Medicine doctor. We also wait for the American Rheumatology Association guidelines for the third dose which I received. It was like the second: sore arm and tiredness for 48 hours and back to normal. I feel more confident in my work, in my medical appointments and in running errands… I continue wearing mask indoors and in public when I’m around people not from my household. I am vaccine confident.

    • Angie Alt says

      Thank you for sharing, Patria & for your work as a pharmacist.

  • Loretta Evans says

    My doctors suggested I get the vaccine because getting Covid would be so much worse. I have Psoriasis & Psoriatic Arthritis and take Enbrel. I recevied the Moderna vaccine and the 1st dose only sore arm. 2nd dose, flu symtoms on the day after and then felt fine. I just received my 3rd dose and my symtoms were the same as the 2nd. 24 hours after receiving the 2nd & 3rd, I had flu symtoms and run a fever, but the next day back to normal. I have had friends die from Covid and die from problems after surviving Covid. I feel much better having the vaccine!!

    • Mickey Trescott says

      Hi Loretta! Thanks for sharing your experience, especially with a booster as there haven’t been too many in our community navigate that yet. Wishing you well.

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