After two years with Lyme disease, she can dance again

Written by: Zoe Schaver

Photos by: Tess Allen

GOLDSBORO — It started with hip, neck and back pain, then came the dizziness and the migraines. One morning, she woke up and couldn’t move her neck at all. At the summer camp where she was on the sailing staff that summer, in 2015, other staffers found her wandering disoriented in the woods, unable to find her way.

Still, no doctor could diagnose Mary Lindsey Edwards.

The 19-year-old high schooler from Goldsboro went to see a total of 30 doctors in her quest to find out why she was so sick. One told her she might have multiple sclerosis. Another said it could be vertigo. A third said she must just be anxious about dancing and that anxiety was manifesting physically.

Neurologists at both Duke and UNC hospitals told her that she was fine, and the neurologist at Duke said she should stop seeing new doctors.

Meanwhile, other symptoms were emerging. Edwards’ eyes would flutter uncontrollably and the muscles in her stomach would contract involuntarily. She lost the ability to drive or even to dance, a favorite hobby.

***

Before falling seriously ill, Edwards was a highly active young girl, attending regular dance practices and playing sports and working at summer camp. She lived in a brick house on a quiet suburban street in Goldsboro with her parents, Michael and Kelli, her older sister, Madeline, their dog, Piper, and two cats.

The family members are devout Catholics, and Edwards has attended church weekly her whole life. She decided to be home-schooled midway through high school, even before her illness, because public high school life didn’t fit her. Before her schooling was interrupted entirely, Edwards had hoped to attend the University of North Carolina at Wilmington.

On the last day Edwards was working on the summer camp sailing staff in that summer of 2015, Kelli Edwards called to tell her results from a recent test had come back: she had Lyme disease.

“I was so relieved at that point,” she said. “I’m like ‘Oh my gosh, I know what I have, I have a diagnosis now, so we can treat it.’ But I didn’t realize that it was going to be that hard to treat.”

Meanwhile, Edwards’ symptoms were getting worse. Her legs began to drag when she tried to walk, becoming less and less stable until she was only able to crawl, scoot, or use a wheelchair. Then her speech began to slur. Sometimes, she would babble uncontrollably or get stuck on saying the same word, like “Mommy,” over and over again. For a full week, she couldn’t talk at all, instead writing her thoughts on a pad of paper.

Edwards’ parents had a wheelchair ramp installed at their house. Her mother had to bathe her, and all of her family members helped lift her onto the toilet when she needed to use it.

Someone had to be with Edwards at all times while she sat in the same chair all day long, covered in heating pads and blankets to ease the pain she felt in every part of her body. She became close to her mother’s friends, who took turns sitting by her side. Some close friends visited, but Edwards lost touch with most of her friends from school.

“I was out of sight, out of mind,” she said. “It’s not that they didn’t care, but some people don’t know how to respond to people who are really sick.”

***

After searching in vain for a specialist in North Carolina, Edwards’ family found a clinic in D.C. Jemsek Specialty Clinic, run by Dr. Joseph Jemsek, specializes in treating Lyme disease. Jemsek told her she would likely be wheelchair-bound for several years.

Bacteria such as the type that causes Lyme disease, called Borrelia burgdorferi, can encase itself in structures known as biofilm that protects the bacterial cells inside the body, making them much more resistant to treatment. Treating this type of bacterial infection requires dispersing these cells by destroying the biofilm, which releases the free-floating cells into the body.

That means, essentially, that when Lyme disease is treated, symptoms get worse before they get better, because the infectious bacteria is free to float around the body and colonize itself further — but it is also more susceptible to treatment with antibiotics.

It’s important to note that little research has been done into whether Borrelia bacteria form biofilms, though research has demonstrated these formations in culture and in the bodies of ticks.

During her first round of treatment, Edwards went through an intensive detox process that made her feel progressively worse because of the breakdown of the biofilm.

“It’s like disturbing a beehive — everything’s being released,” she said.

To be treated by Dr. Jemsek, Edwards had to travel back and forth from D.C. often, which was difficult with her worsening condition. Her family began looking into other options that might not be so hard on her body.

Edwards’ grandmother found the name of a treatment center in Florida called Sponaugle Wellness Institute, whose website boasted dozens of patient success stories. The center specializes in treating undiagnosed medical disorders, focusing not only on Lyme infections but also on mold toxicity, industrial toxicity and gut toxicity.

Edwards can recall the moment when she first heard of Sponaugle. At the time, she was in a wheelchair and could not walk.

“I didn’t even know what it was, I hadn’t seen the website or anything, and in my stomach I felt this leap, like I knew I was supposed to be there,” she said. “So I crawled across the floor to my mom, and I said ‘Mom, we have to go.’”

At this point, Edwards had lost more than 20 pounds and was beginning to lose hope that she would ever be cured.

When she met with the doctor at Sponaugle after medical staff had run several tests, he asked the nurse to close the door and told her gravely that her body was badly infected. Edwards was infected with several types of parasites, mold and Bartonella. A PET scan, the doctor said, showed the infection had reached Edwards’ brain, which explained her speech problems.

From that point on, the road ahead would be hard. Edwards was determined to work as hard as she could at getting better, but she was also having daily seizures that caused her body to rock forcefully back and forth for hours. One seizure lasted seven full hours, she said.

“I was so exhausted all the time,” Edwards said. “I’d go back to the apartment we had at night, and it would happen again during the night. We’d have to call the nurses and the doctor, and sometimes I’d have to come in to the clinic at night.”

“Thinking about going to Florida, I was excited. I’m like, ‘I’m gonna get treatment, but I’m gonna get to go to the beach every day.’ It was not like that at all.”

Instead of the beach, Edwards received daily antibiotic IV treatments and did detoxes with Colonix, which clears bacteria from the colon.

During treatment, Edwards was constantly surrounded by doctors, nurses and crash carts in case she took a turn for the worse, said her mother, Kelli.

Edwards said her Christian faith kept her from an emotional breakdown.

“During a seizure one day, I had a vision from God,” she said. “He was telling me that I’m going to walk. I come out of my seizure — I had visions all throughout when I was having seizures — but I told my mom and the nurses, ‘I’m going to walk today.’”

Later the same day, Edwards did leave her wheelchair, though she could barely drag her legs across the floor.

“From there, things started shifting,” she said.

***

Edwards eventually left her wheelchair completely. Six months into treatment, she was feeling as close to normal as she had in more than a year. Finally, she could come home.

These days, Edwards still has to be careful to avoid a fresh onset of infection. The doctors at Sponaugle told her she should stay out of any building that could have mold for at least a year. That means Edwards is still confined to her house most of the time. She can only eat at three restaurants whose buildings are new and likely mold-free.

Coming home meant some major adjustments for the family, too. They had to give away their two cats and remediate the house to remove any sign of mold. That was expensive, and it meant getting rid of all furniture except beds, two chairs and a couch. Edwards has also changed her diet to mostly eliminate gluten, dairy, and sugar, including swearing off chocolate.

All told, the family’s medical bills from Edwards’ treatment along with the cost of living in a Florida apartment for six months totaled close to $100,000. Their insurance doesn’t cover Sponaugle, which is considered an alternative treatment center.

***

The Centers for Disease Control and Prevention (CDC) does not recognize “chronic Lyme disease” as a legitimate diagnosis, saying Lyme disease cannot become a chronic illness.

Dr. Paul Lantos, a Duke University M.D. specializing in infectious diseases, has written extensively about the controversy surrounding chronic Lyme disease.

Lantos writes that chronic Lyme disease is a catch-all term used to describe chronic pain, fatigue, neurocognitive symptoms, and behavioral symptoms, though there are no objective clinical findings supporting the diagnosis. Many patients are misdiagnosed with CLD who in fact have other conditions, he writes.

“Chronic Lyme disease isn’t defined even by its advocates, and the term in practice is applied to many different patient types who have different underlying diseases,” Lantos said in an email. “Its lack of a definition makes it unclear what we’re even talking about.”

One study Lantos cites found that only 2.1 percent of 285 randomly surveyed Connecticut physicians were willing to diagnose a patient with CLD.

The problem for patients like Edwards is that this can mean going on an endless trail of different diagnoses and treatment suggestions without ever finding an effective solution.

Dr. Neil Spector, an oncologist and cancer researcher at Duke University, once required a heart transplant to survive what turned out to be a Lyme infection attacking his heart. He acknowledges the difficulty of treating this type of illness, because it can be caused by chronic active infection, the interaction of co-infections, or an autoimmune reaction to an infection.

“The problem is, the diagnostics to distinguish between these possibilities are not available.  And therein lies the controversy. Who has what, and who needs more antibiotics, and who needs something else,” Spector said in an email.

“The tragedy is that men, women and children are the ones caught in between this battle and they are the ones suffering. What we need are better diagnostics and better therapies.”

***

Edwards said it was frustrating to hear doctors say nothing was physically wrong with her or that there was no way what she was experiencing was a result of Lyme disease.

“It made me question myself, like, am I crazy? Am I making this up?” she said. “But I know what I’m feeling. You know your body so well that you know when there’s something wrong.”

These days, Edwards takes online community college classes at home and plans to transfer to UNC Wilmington after getting her associate’s degree. She still takes supplements and does detox regimens regularly. Edwards even has a personal sauna in her bedroom that she uses to detoxify her body, though medical practitioners are divided on whether sweating is an effective way to remove toxins.

She said her treatment has brought her family closer together, especially now that every member of her family has seen her at her worst. Her mom still helps her do weekly enemas to clear out her colon.

“Normal 19-year-old people don’t do that,” she said.

Edwards’ mother, Kelli, said it’s tough seeing her daughter continue to suffer emotionally — she refers to it as Post-Traumatic Stress Disorder — after the trauma she’s been through. Any time Edwards feels sick, for example, the teen worries her infections are coming back.

“When you go through all that and you know that you’re 18 years old and can’t walk, can’t talk — looking back on the videos of her not being able to talk, it’s scary,” said Kelli Edwards.

“You almost forget until you look back and see, this was horrible.”

While the fight isn’t over, Edwards has found a new normal — and she can dance again.

Since she didn’t get to do her senior solo recital because she was so sick, Edwards is working on that now and hopes to eventually perform for friends and family.

“It’s really sad and scary what I went through. There’s always that fear inside of me — could that happen to me again?” she said.
“These doctors aren’t going to realize it until it happens to them or someone in their family.”

 

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