First Dose of Moderna on 3/11/21 Lot 032M20A
April 8, 2022:
Dec 8, 2021:
Amanda is a wife, daughter and mom of 8 year old son Max. She willingly stepped up to get her vaccine in early March.
Immediately after receiving the Moderna vaccine, she got numbness and tingling in her throat. That progressed to severe tachycardia, back pain, shortness of breath and syncopy episodes landing her in the ER. That first ER visit was met with lack of knowledge on how to treat the symptoms along with being sent home with a referral to cardiology. She returned to the ER 5 times after that event for continuous syncope episodes, rash and cardiac concerns. The symptoms progressed and she woke up weeks later with bilateral limb paralysis and was hospitalized for a week. Many tests were done including MRI's, CT scans, bloodwork and Lumbar Puncture showed abnormalities. The neurologist that she saw in the hospital refused to connect these symptoms with the vaccine and later wrote in her chart, "bilateral weakness due to lack of effort". She was discharged to have surgery at a different hospital to have a medical device in her body removed so that further MRI testing could be performed. She has sent her blood to researchers across the country to try and help figure out what is happening in her body since no one in the medical community has been able to figure it out. This has been met with frustration from her team and lack of treatment plan.
Since then, mobility has returned slowly and is very inconsistent. Some days her legs can support her, others they cannot. She has been diagnosed with Guillian Barre Syndrome, Mast Cell Activation Syndrome and undergoing testing for a vasculitis diagnosis.
Getting treatment has been extremely difficult and obtaining IVIG treatment has been impossible thus far even though her cardiologist, pcp and other doctors on her team are highly supportive of this treatment option. She advocates daily for treatment options and is very active in supporting others in online support groups. Amanda helped plan the last D.C. Rally and continues to be instrumental in event planning and helping run the Real, Not Rare website.
AMANDA'S REAL NOT RARE STORY:
Q: What was your life like before you got the vaccine?
During the covid lockdown, I spent my time grocery shopping and taking care of the elderly in my community. I served hundreds of clients and provided critical support to keep them safe and at home. I worked 7 days a week for many months to care for my community.
Q: What was your reaction, symptoms, & timeline?
I received the Moderna vaccine on March 11 at a vaccine clinic at a local college in Northville MI. I willingly signed up to get the vaccine and was happy to do my part in keeping myself, community and my family protected. I had an immediate reaction landing me in the ER. Each of the next 7 ER visits was met with disbelief from the doctors along with them not knowing how to treat me.
Waking up on May 2nd with the inability to move my arms or legs at all was one of the scariest days of my life. Having to sit in the ER for 8 hours while they tried to figure out what to do was torture. They had already done the bloodwork, scans and the only thing they could come up with was “chronic inflammation”. They tried sending me home to wait for my neurology appointment that was scheduled 2 months later. I had no choice but to advocate for myself and demand to be admitted into the hospital for further testing. On day 3, a neurologist finally came to see me. She did her evaluation and looked me in the eye and told me that there was “no way this was related to the vaccine”. She had never seen this before and decided to order a LP, which came back abnormal. She wrote in my follow up notes “bilateral limb weakness due to lack of effort”. I never saw her again and I gladly fired her from my team. Later I learned that she published a medical paper about a patient she treated, before me, with the same symptoms as I was experiencing due to a reaction to the Moderna vaccine.
In my own family and friends circle, I’ve experienced disbelief and those who remain cognitively dissonant. This journey is extremely lonely at times and frankly I’m at the end of my rope on getting others to believe me. When I tell my story on social media, I get labeled as misinformation. I am not misinformation, I am SHARING MY TRUE STORY. The constant censorship has to stop! What you don’t see is the constant fear in my 8 year olds eyes each time mom has another set back and rushed to the hospital not knowing if he will ever see me again and his constat worry of if I’ll ever be the same.
I have seen 2 cardiologists, 3 neurologists, rheumatologist and allergists. I’ve suffered through a lumbar puncture, CT scan, brain scans, tilt table test and surgery to remove a device that controls by bladder in order to have a full MRI of my spine, the list seems to never end. I have had 22 covid tests since March 11, ALL NEGATIVE. I've had seizures, psychiatric episodes from medication and required others to help me use restroom and bathe me. To say this has been torture is an understatement. My medical bills currently are $139,112. The doctors tell me that my inflammatory markers are amongst the worst they’ve seen, yet I cant afford the $2,000 a month pill they suggested.
Q: What was your life like after you got the vaccine?
My Life has completely changed. I am not able to be the wife and mom I need to be. My inability to function, especially standing and walking has not only affected me, but my family and friends who I now rely on to help me daily. In addition to learning a new way of life, disabled, I am a full time learning coach to my 8 year old in 3rd grade at a virtual online academy.
Q: Share your experience with any medical care and any diagnoses you have received:
I NEVER imagined fighting as hard as I have for months on end to get treatment for this injury. Fighting to get appointments, bringing treatment options to my medical team because they are not doing anything to research how to help me and fighting the insurance company for medical approval for equipment I need has been a full time job. No one should have to do all of this, just for getting a vaccine they were "told was safe".
Q: Was your reaction reported, and what was the response?
Reported to VAERS on 3/13/21. No response.
Reported 2 times to Moderna directly, they said someone from their safety team would contact me. No one has ever called. Radio Silence.
Q: Is there anything that has helped, and have your symptoms improved?
I have not found anything to help with the constant electrical pain in my body, tinnitus, POTS and vasculitis problems throughout my body.
Q: What do you want others knew?
For the media, I NEED you to hear us. I NEED you to share our challenges to the cognitively dissonant. We cant keep fighting this battle without the ability to tell the truth.
For those suffering, I HEAR YOU. I SEE YOU, you are not alone. Thank you for sharing your stories and we will bring the truth to light.