Teen being treated for Lyme disease, mold toxicity
By Phyllis Moore
Published in News on October 26, 2016 10:13 AM
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Mary Lindsey Edwards, right, in a recent family photo with her parents from left, Kelli and Michael Edwards, and sister, Madeline Edwards, second from left.
Mary Lindsey Edwards was one sick girl.
Doctors now say the 18-year-old's problems -- she has been diagnosed with Lyme disease and mold toxicity, along with co-infections that sent her to more than 30 physicians -- could have begun as a child.
"I don't really know. You have things and you don't really put them together," she said from Florida, where she is being treated at Sponaugle Wellness Institute. "When I really figured out that there was something wrong was March 2015. That's when I just kept getting more and more symptoms. It just wasn't making sense."
She has learned that she has a gene that makes her predisposed to Lyme and mold. Her body was unable to fight it.
"It was very discouraging because I'd go to doctors and they basically implied that it was in my head," she said. "At one point, they said there's nothing wrong with you, stop seeing doctors.
"It kind of left me hanging, like we didn't know where else to go. We went to all the big name doctors and they just thought it was in my head. They didn't understand what it could be."
Her health worsened, though.
"I had really bad vertigo and muscle and joint pain, stomach issues," she said. "My vertigo would get really bad and my eyes would start twitching and fluttering and my stomach was twitching. Doctors would see that but just thought it was all in my head."
Then her left leg began to drag and she was having trouble walking. By December 2015, she could not walk at all, or even stand.
Taking matters into her own hands, Mary Lindsey began to do her own research, putting all her symptoms together and suggesting it might be Lyme.
"I told my mom and (we) wanted the doctors to test me," she said. "And they said, there's no way it could be that. So they wouldn't test me."
The search began to find a doctor willing to listen.
That's when they learned about Sponaugle Wellness Institute.
The teen checked it out, watching testimonial videos, even calling former patients.
It has been an arduous process, said Mary Lindsey, in her 22nd week at the center.
"When you start treatment, it's starting to kill the bugs and the bugs are moving around in your body and released toxins," she explained. "For like the first bit I was there, things got worse. I was having these seizure-like episodes. They weren't epileptic seizures but my whole right side would just be convulsing. It would last up to seven hours.
"Things like that (and) trouble breathing. It was because of the bugs -- they hide in this thing called a biofilm and what this doctor here does, after he gets the stuff out of the bloodstream, he targets the biofilm."
She also had an infection in her brain, which contributed to the seizures, she said.
The teen has made great progress so far, she says, taking her first steps in July.
"It just came back with the treatment. Once they were getting rid of the infection and toxins, that's what cleared it up," she said. "Because the infection in my brain was in the motor region, and it was also in my cerebellum, it affected the balance and coordination.
"I've gotten rid of all of the infection. We're working on parasites and getting rid of mold and just continuing to detox me so hopefully I can get rid of that soon and be on my way home. But I'll have to have a place to live that's mold-free."
The situation has made Mary Lindsey, and her family, much more vigilant about things they never would have considered previously. Kelli Edwards, a teacher at Tommy's Road Elementary School, said when her daughter comes home, they will probably move from their older home in downtown Goldsboro just to be safe.
"I had lived in that house since I was 6. But there's so many places where I could have gotten mold over the years," Mary Lindsey said. "I also can't go to certain places because of mold and because after treatment, my brain will be so sensitive from where there was infection that it has to heal before I can do any of that and because of the gene I have, I have to be very careful."
The process of restoring her health has been difficult, she admits, at some points getting worse before it got better.
"You just want to quit because it's, you know, just hard emotionally, physically, spiritually, but I just really had to rely on my faith and stuff to get me through it," she said. "The support of my parents and everything, because when we came here I was just so hopeful. It was kind of like my last hope because no other treatments were working.
"It was just like I knew I had to do it. I knew it was going to be hard."
She has come far, she said, and wishes others could appreciate the progress as she does.
"They call Lyme disease, like, an invisible illness because you don't really know when someone's sick," she said. "It's hard to tell because you try to feel good around people.
"When I've had some friends that would visit me, I'd put on a brave face and try to act all happy, but you're really in so much pain and people don't see the extent of how bad it is."
While many of her peers are enjoying their first year of college, she is undergoing treatment five days a week. Instead of complaining, though, she appreciates having had local support.
"I would really like to thank everyone for all they've done," she said. "The support I've received is truly amazing. Just people reaching out, people that I don't even know or don't know me well. They've contacted me and they're praying for me and trying to help out in any way that they can.
"It's very hard and it's very expensive. We need all the help we can get."
Until she is able to return to her hometown, Mary Lindsey has a message for her community.
"You know your body and you know when you're sick," she said. "When that happens you have to do everything you can, not to give up and fight for your health, which is what my family had to do for me because without your health you don't really have anything. Without health, and family and faith, nothing else really matters besides that. None of the material things and the trivial things in life.
"I would just really like to thank everyone for supporting me and for my family, for helping me through this, all they have done, especially my parents."