Amanda has moved across the country temporarily to undergo treatment with a doctor in Portland, OR. She has been in treatment for 2 months and has made some progress. Amanda is on the leading front of research for the vaccine injured and committed to doing whatever it takes to find successful treatment options. She has an incredible committed team of doctors who treat her daily with a multitude of therapies. Weekly testing, IR Sauna, IV nutrition though Picc line, IV Ozone and HBOT treatments are all costly options that need ongoing funding.
Her team of doctors believe in the success thus far and look forward to the day her body is healed from this horrific nightmare.
Real Not Rare Bio
Amanda has finally secured a doctor, 10 months into the journey who supports her and setting up treatment. She needs to raise $8,000 for hyperbaric oxygen chamber therapy. She has a script for the treatment and the only barrier holding her back at the moment is finances.
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.