“My hearing was not good, and my balance was off. My taste buds were crazy because everything I put in my mouth, even water tasted like I was trying to chew aluminum foil. It was this horrible metal taste. And then the imbalance became really difficult to handle.”
An ear, nose and throat doctor diagnosed Edwards with vertigo and treated her. When her symptoms failed to resolve, he sent her to an audiologist. That was frustrating, she said, because it was clear they had no idea what was causing her symptoms.
Then one night, as she was walking through the house, she said, “My legs just gave out from beneath me. I just went down like a rock. No notice, no warning, nothing.”
They went to the emergency room “out of desperation.” After four days, unable to determine the cause of her symptoms, the doctors sent her home. But a few nights later, she was back in a different hospital, where she underwent four more days of testing — again with no diagnosis.
At that point, Edwards was wheelchair-bound, couldn’t hear the conversations going on around her and had nearly lost her vision.
One of the nurses gave her the name of a neurologist who she said was extremely well-versed in unusual neurological diseases. “If he sees you, you might be able to get some answers, and it would be a gift,” the nurse told Edwards.
That neurologist immediately suspected Edwards had Guillain-Barré syndrome, a rare neurological disorder where the immune system attacks the peripheral nervous system.
He said there had been some cases linked to the COVID-19 vaccine and he wanted to hospitalize her and test her.
Tests revealed Edwards suffered from a rare sub-variant of the disease, Miller Fisher syndrome, that also affects vision, hearing and coordination.
“And from then on,” she said, “it was rough.”
Edwards spent more than six months moving between a rehab facility and a hospital. Her “normal, active, everyday” life became a thing of the past. She was too sick to be at her mother’s bedside when she passed away.
Intravenous immunoglobulin treatments — plasma infusions often used to treat autoimmune disorders — didn’t help. Edwards’ neurologist reluctantly offered her an intervention called plasmapheresis, which consists of removing blood and plasma from the body, treating and returning it.
It could be risky, Edwards said, because she already had a serious heart condition. Still, she insisted on the procedure because she was desperate for some relief.
“I told him, ‘I’ll sign any piece of paper you have that exonerates you, blameless, for having to do this,’” she said.
Afterward, she could stand for the first time and walk with the help of a walker, and even pack her own things to move from the hospital to the rehab. “That was a step forward,” she said, “so I knew I could improve somewhat.”
“And from then on, it became my battle or my determination to overcome this as much as possible. And I have fought every step of the way.”
But that wasn’t the end of the serious issues.
Edwards was home for about a month — after spending nearly a year in the hospital — when her legs suddenly gave out while she was standing at her stove. She collapsed and broke her hip.
“Oh God. Back to the hospital,” she said, “I had my hip replaced. Back to the rehab center for another month-and-a-half and home.”
She finally started to relax into her “new normal” at home, but then had another fall and hit her head hard. By the evening, her cognitive symptoms were so severe she couldn’t recognize her family.
“The next day they did brain surgery on me because they said I had a brain bleed and really was not doing well at all,” she said. “They gave me a 5% chance of survival.”
“I survived that and came out and actually had my memory and was able to talk,” said Edwards, but sometimes she couldn’t find the words to express her thoughts. She had to learn to swallow and go through speech and physical therapy.
The disease ‘eats away at your nerves’
Today, Edwards continues to face many challenges, including severe pain.
“I have what feels like great big bands, rubber bands going around my legs, up my legs,” she said. “It’s just the weirdest sensation. And then my nerve endings that constantly put out sparks. It’s like an electrical cord that you take the plastic wrap off or the rubber wrap off of the cord, and all you have is exposed wires.”
The disease “eats away at your nerves” she said, “so all you have is raw nerves, like raw electrical outlet things. And so it shoots down your body like electricity, and it feels like electricity.”
The bouts of pain occur randomly and are so intense, she said. “I cannot describe it. It is shocking, pardon the pun.”
Pausing to find her words, random bouts of extreme pain and difficulty walking are the “new normal” for Edwards. “That’s pretty much a forever deal,” she said.
But some of the biggest challenges, she said, are how life has changed. Her husband has taken on the role of primary caretaker, and daily activities are limited.
Recently, she went to her grandson’s graduation, but she couldn’t keep up with the fast pace everyone needed to move at, so she was unable to actually see him get his diploma. “It’s one small example,” she said, “of all kinds of ramifications, all kinds of things that I miss out on every day.”
Edwards told The Defender she was sharing her story because she hopes it can be a warning to others considering getting vaccinated against COVID-19.
She said she sees the news warning of a new variant, and, “It makes me mad to see the commercials now that you need to get the next booster or people should wear masks again.”
To people considering more COVID-19 vaccines, or any vaccines where this is a possible side effect, such as the shingles vaccine, Edwards says, “Look at me and decide, because it’s not a good idea. Please don’t swallow that [idea], it’s not a good one.”
“To this day, it’s devastating,” she said, “And I’m so angry.”
Edwards and her husband are particularly angry, she said, because they “never should have gotten a vaccine in the first place.” They both had COVID-19 and they were still advised to be vaccinated.
It was only later that “small snippets of information started to leak that if you’ve had COVID, you have developed natural immunity.”
For her, she said, “There’s no recourse other than to help other people find a way out of this.” Despite the total transformation of her life, Edwards also hopes her story can be a message to other people suffering injuries.
She said has learned how important it is to be an advocate for yourself in negotiating the healthcare system. “There’s just no way out of this without being your own best friend through the whole thing and just pressing for answers or that kind of thing.”
“If I hadn’t thought that I might find some answers and get better, I think I would’ve probably given up,” she added.
Edwards also warned people suffering from symptoms of Guillain-Barré to get to a doctor quickly. Early diagnosis is key to more effective treatment. The longer the disease is embedded in the body, the more damage it does, she said.
Vaccine-injured people should “press the docs to think outside the box and do their research. There are answers and treatments, but individuals must be their own advocates in a strong, gracious way. And do it sooner rather than later!!”
Edwards and her husband talked with Children’s Health Defense’s (CHD) Polly Tommey, program manager for CHD.TV. Polly is on CHD’s nationwide “Vax-Unvax” bus tour gathering stories from people injured by vaccines.