First Dose of Pfizer on 04/06/21
37 yrs old
Q: What was your life like before you got the vaccine?
I was very active. Biking 45 mins a day, hiking 2-3 miles over weekends. I was a full-time grad student, working part-time, parenting an active kiddo and managing my home.
Q: Would you like to share your reasons for getting vaccinated?
I believed it was the right thing to do. I trusted vaccines, I trusted the healthcare system and believed that evidence-based medicine was the norm (If they have approved the vaccine, it had to be safe, right?). I have taken all my vaccines in the past, including yearly flu vaccines, and never had any adverse reactions. I felt that I needed to do my part to stop the spread of covid and protect the vulnerable. I was also tired of the lack of socialization and thought that vaccines will help us get back to normal, maybe travel, meet friends and go outside more. I trusted my doctor, and the CDC, FDA statements that the vaccines were safe and effective.
Q: What was your reaction, symptoms, & timeline?
I felt some mild fatigue and nausea for a day or two after the vaccine. About 4-5 days after the Pfizer vaccine, I started losing appetite and developed severe nausea and aversion to food. Then came a bunch of symptoms -- exercise intolerance, tachycardia, palpitations, inability to stand or walk, fluctuating blood pressure, extreme lack of appetite, nausea, diarrhea, severe bloating, stomach cramps and weight loss (I lost 15 lbs). I was bedridden for about 3 months. I also developed on-and-off itching and hives all over the body which lasted for a month.
Q: What is your life like now, after getting the vaccine?
I was diagnosed with POTS and orthostatic intolerance from the vaccine. I have flare-ups from time to time. I'm nowhere as active as I was before and some times even day-to-day is a struggle. I have to deal with constant flare-ups with shortness of breath, tachycardia and other neurological/ dysautonomia symptoms. I had to take an 8 month leave of absence from work and only in the last 2-3 month I have been able to get back to work slowly.
Q: Share your experience with any medical care and any diagnoses you have received:
I was diagnosed with POTS and orthostatic intolerance. One of the most frustrating things was being gaslighted and dismissed by medical professionals with a diagnosis of "anxiety." Being a woman, I'm generally used to being ignored / dismissed by the medical system, but this time was awful. My husband and I were beyond frustrated, because no matter what I told the doctors they insisted that the vaccine cannot cause this. I went to the ER 3 times and to my PCP about 4-5 times, and no one took me seriously. I was dismissed by 3 doctors before someone was ready to believe it was the vaccine. When I told my PCP that I have debilitating symptoms and that I had to take off from work, her response was the "this is probably a good thing, because the time off will help you destress." I lost 15 pounds and could not stand or walk. I had to take an unpaid leave of absence, lost 8 months of income and two quarters of my degree progress and have fallen behind significantly. Her response was truly appalling. I changed my PCP after that, found another doctor who was empathetic and believed me. She was the first one to believe that this started after the vaccine and told me that "the vaccine was new and we are still learning", so it was very possible that my symptoms were related to the vaccine. She also found a paper online that connected POTS to the vaccine. I was referred to a cardiologist as well as neurologist. The neurologist did not see me in person (covid protocols), refused to believe me, made an assessment based on a video visit and gaslighted me. I finally found an integrative medicine doctor who helped me get a diagnosis and treatment, after which my symptoms started improving.
Q: Was your reaction reported, and what was the response?
I have reported my reaction to VAERS.
Q: Is there anything that has helped, and have your symptoms improved?
I am overall better now, although I still struggle with flare-ups. Propranolol helped initially with the palpitation and tachycardia symptoms. Magnesium supplements and high salt + fluid intake have helped with tachycardia. For the body itching and hives, using hypoallergenic cleanser and shampoo helped. I'm now able to manage my symptoms with a plant-based diet (low in carbs and sugar), lots of fresh veggies and fruit, yoga and pranayama. I do some mild to moderate exercise and breathing for about 15-20 mins a day.
Q: Have you had Covid before? What was your experience if so?
Most likely in January 2020. I was taking a class (in a basement classroom) with several other students, many of who had traveled internationally over the Winter break. We all came down with a virus, which in hindsight I'm convinced was Covid. Severe cough (I had to take prescription cough meds), fever, fatigue and shortness of breath. I recovered in about 2 weeks. My husband also caught it with similar symptoms and recovered. Oddly enough, my 5 year old experienced only very mild symptoms.
Q: What do you wish others knew?
To those affected by adverse reactions -- please speak up and make yourself heard. Your experience is valid, your symptoms are valid. Don't let anyone, including medical practitioners, gaslight you. You are your best advocate, and don't let anyone tell you otherwise.
To doctors and medical practitioners -- Please listen to us. What we need is to be heard. We need empathy. We need diagnosis and treatment, not judgment and dismissal. Our adverse reactions are real, and it is our experience; it maybe different from your experience, but it is equally valid. Please advocate for your patient. We have not merely been "inconvenienced"; rather, life as we know it has been turned upside down. Stop labelling us as evil anti-vaxxers. We care as much about our community as you do.
To all those who are responsible - including the government, pharma and public health - the general public is losing / has lost trust in you. If you want to build back trust, please start with an acknowledgement of the truth. That this is a new disease, a new vaccine and an experimental vaccine technology, and we are still learning as we go. We don't know everything, which means we don't know some of the risks yet. Stop pushing mandates and start listening to those who are affected. Document the risks. Conduct more robust studies that go beyond mere observational data. Use larger sample sizes and more diverse and representative samples. Acknowledge risk versus benefit. Gather and share robust evidence, with all the positives and negatives. Let people decide where they stand.
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