WALTER, Ala. – When Madeline Hill was 4 years old, she spent a fun day with her family at a petting zoo in Key Largo, Florida. It was when the family returned home that evening that her mom, Becca, discovered a bullseye rash on her daughter. After four years searching for answers, when Madeline was 8, the family discovered the source of the rash and the long-term consequences. Madeline was diagnosed with Lyme disease.
The LymeLight Foundation, a nonprofit dedicated to raising awareness and supporting children and young adults with Lyme, states, “Lyme disease is an infection caused by the spirochetal bacteria- Borrelia Burgdorferi. If left untreated, infection can spread to the joints, the heart and the nervous system. Because the bite is painless, fewer than half of people with Lyme disease realize they have been bitten. Likewise, fewer than half of patients with Lyme disease recall any rash. Lyme and tick-borne diseases are prevalent across the entire United States with cases in each of the 50 states. The Lyme disease bacteria is powerful and has the ability to enter the brain less than 24 hours after a tick bite.”
It is through a bite from an infected tick that Lyme disease is transmitted, and it’s typically from a species of black-legged ticks. LymeLight cautions that several types of ticks have been known to be carriers and the “nymphal, or immature, form of the tick, which is about the size of a poppy seed, causes most human cases.”
Madeline was bitten by a tick that carried Lyme disease and other co-infections.
Her mom recalled, “There was a deer there at the petting zoo, so it could have been a deer tick.”
Madeline, now 12, explained her symptoms.
“Well, I used to be a gymnast and I used to play soccer, but whenever I would do gymnastics, after, my knees would start hurting and all my body and elbows would ache,” she said. “At first, we just thought it was growing pains, so we didn’t really think anything of it. We went to doctors and they didn’t know. The feel was almost, I don’t really know how to explain it. You would have to experience it to get it.”
She also stayed in bed and was tired all the time. Her joints would pop and she experienced a variety of other symptoms.
Said Becca, “Things as a mom- I remember taking her to the doctor for stomachaches that wouldn’t go away or unexplained fevers. She would run a really high fever, and the next day it would be gone. She would have sore throats so I would think she had strep throat. They would test her for strep throat and it would be negative. She would have all the symptoms of strep throat, but the doctor would say, ‘Well, she’s just one of those kids that has a great immune system and catches something and then it’s gone,’ or, ‘Stomach pain is the number one reason parents take their kids to the pediatrician.’”
Madeline was not putting on weight. The activities she had loved to do, she no longer wanted to participate in.
“I knew it was just not right,” said her mom.
Doctors told the Hills it was or could be many different things, including lymphoma, rheumatoid arthritis and thyroid issues. Finally, through a friend who told them about Lyme disease, they had Madeline tested and it was positive.
Becca explained that testing for Lyme disease is not the normal or “go-to” thought.
“We had people in Florida tell us that Lyme doesn’t exist in Florida,” she said. “You have all these people who travel down from the northeastern states to Florida bringing their animals. How can they not? I used to joke, ‘What do they do, stop at the Florida-Georgia line and say sorry, I can’t go in?’”
Lyme disease is most prevalent in the northeastern states, but according to the Centers for Disease Control and Prevention (CDC), cases in Alabama have increased over the past 10 years.
Ticks carry more than just Lyme disease. Tick-borne illnesses include Anaplasmosis, Babesiosis, Borrelia Mayonii, Bourbon Virus, Powassan disease. In the Southeast, Rocky Mountain Spotted Fever and STARI (Southern tick-associated rash illness) are transmitted through the brown dog tick and the lone star tick.
Madeline’s initial rash was slow to go away. Doctor’s thought it was allergy-related and began removing foods from her diet. Eventually the symptoms went away. It wasn’t until she turned 8 that her symptoms reappeared.
“Getting treatment and getting someone to listen was probably the most difficult. Clearly, she went from cartwheeling everywhere to not wanting to get out of the bed. We knew something was wrong,” Becca said.
Madeline has chronic active Epstein Barr.
Becca explained, “In a normal person, all of us have been exposed to Epstein Barr- 90% of the world’s population. That’s mono (mononucleosis). She could have come in contact with someone with Epstein Barr and it just reactivated any type of infections in her body. What’s interesting about Lyme and all the co-infections, is once you treat, it’s always good to treat the worst one first. She has mycoplasma (infection) which to you and I is walking pneumonia, but to her, it’s intracellular. That is her biggest hurdle. It makes her chest hurt, it makes her joints pop and have really sore muscles. Then, they treat that and then to the next one and the next one. What happened with her, we treated these larger viruses with antivirals, antibiotics, supplements and all these crazy things. Then, all of a sudden, Bartonella showed up. Bartonella attacks the brain. She went from being able to read and being a math whiz to not being able to read or do basic math. So, once you start treating something else, something else may come out of dormancy.”
She added, “Not every patient that gets bit by a tick has actual Lyme. There are all types of tick-borne illness. Now some are coming out saying that Lyme can be contracted by mosquitoes, lice and fleas. There are all different ways to get it. So, a lot of people will say ‘I have Lyme disease,’ but when they go through a series of tests, it doesn’t come back, but all these other co-infections do.”
Lyme disease, caused by spirochetes of the Borrelia burgdorferi sensu lato complex, likes tight spaces such as joints and the brain.
When Madeline was being treated for Lyme she would say, “My knees are buzzing. My ankles are buzzing.”
Her mother explained, “When you have an infection and take an antibiotic, you are breaking up that infection and it’s a live organism. She would feel these buzzing sensations. That is where the majority of her joint pain is and she has what they call myoclonic seizures.”
Lyme carditis is also something Madeline’s doctors monitor closely.
Becca believes there are many children and adults with sicknesses caused by Lyme or tick-borne illnesses. She said one of Madeline’s physicians in Orlando realized one day he was treating illnesses such as rheumatoid arthritis and Crohn’s and decided he was always treating symptoms and not the root cause.
“He would send tests off around the world and see these patients did had tick-borne illnesses or West Nile, Zika or malaria and had lingering symptoms because the actual virus was never killed or treated,” she said.
Becca encourages her friends and others who are experiencing illnesses to find out why and ask to be tested for Lyme.
The Hill family moved to the Cullman area in late June of this year and is in the process of seeking doctors who are knowledgeable about Lyme disease. Madeline has been to different specialists throughout the United States including a seven-week stay at a Ronald McDonald House in Orlando last fall where she received three IV treatments a week.
Travel and treatment are costly, and the family applied for a grant through the LymeLight Foundation to assist. They were awarded a grant, and now, Madeline is very active in helping the foundation, raising money and awareness about Lyme disease. She said she saw how her mom was trying to take on odd jobs to help with her treatments and she wanted to help other families. Last May, she raised $3,000 at her Lift for Lyme event and she has sold lemonade at her “Take a bite out of Lyme” lemonade stand.
Madeline has also become an advocate for Lyme Warrior, another organization helping kids with Lyme.
Becca said, “They give Smile Boxes to kids. They sent her a Smile Box last year and this year she wanted to help give Smile Boxes to other kids.”
Madeline is now a Lyme Warrior volunteer and is doing videos on what it’s like to be a kid with Lyme.
She is also participating in this year’s Lyme Warrior Throwdown, which is being done virtually this year. She has raised almost $550 so far.
About the Throwdown, Madeline said, “I had to go into town with lime green pajamas on. I let my sister do my makeup blindfolded and I am in the process of dying my hair green.”
If Madeline raises $1000, she will run a 5K.
Lyme disease will be with Madeline for the rest of her life. She is doing well right now and has joined a travel basketball team.
“Now, I feel pretty much normal,” she smiled. “I will have little flare-ups with Lyme every now and then. Last night, I played basketball. After the game, my thighs and ankles were all sore. Whenever I go up the stairs, it will ache. Today I am fine and was able to ride skateboards with my friend Chloe.”
To help Madeline as she raises money for LymeLight and Lyme Warrior, www.facebook.com/MadeLyme-612884939158788 or www.madelyme.com, where she shares more about her journey with Lyme disease as well as the fun and creative ways she is giving back to others.
Copyright 2020 Humble Roots, LLC. All Rights Reserved.
