Extraordinary Struggles With Persistent Lyme Disease

Extraordinary Struggles With Persistent Lyme Disease

Brian and Risha Gustafson were getting ready to move with their three children from a townhouse in Countryside to a more rural home set back in a densely wooded lot in Aldie.

Then, they finally got a diagnosis for what had been causing their son, Tillman, an 8-year-old with bizarre symptoms for the past year – it was Lyme disease.

Suddenly, the idea of moving from a home with virtually no yard to a “The Little House in the Forest” seemed somewhat perilous.

“I said to Brian that if Tillman got lyme disease while we’re living in this townhouse, what’s going to happen when we are living out in the middle of the woods,” Gustafson said.

That diagnosis came almost a year after Tillman began experiencing confusing and intermittent symptoms, each of which would fade or disappear just as they were deciding to take him to a doctor.

“Looking back now, we know what his first symptoms were, we just didn’t know at the time,” Gustafson said. “We never found a tick. No rash. Nothing. Lyme disease wasn’t even on our radar at the time.”

 

The Gustafsons: Risha, Brian, Sophie, Tillman and Lydia.

The first symptom was severe and persistent headaches.

 

“We took him to the eye doctor, and his vision was 20-20,” she said. “We were just about to take him to see his pediatrician, and the headaches stopped.”

The headaches were followed by joint pains that seemed to move around randomly to different parts of Tillman’s body. They also noticed, at one point, that his thyroid was enlarged. Like the headaches, these symptoms would come and go, so the Gustafsons chalked it up to growing pains or “whatever is going around.”

A family friend who already had experience with lyme disease finally connected the dots.

“She said he either has juvenile arthritis or lyme disease,” Gustafson said. “They did a blood test and sure, enough, he had lyme disease.”

Tillman was prescribed the standard 30 days of antibiotics and the symptoms went away. Unfortunately, that was not the end of the story.

“Almost exactly a year later, it started all over again,” Gustafson said. “He has been reinfected numerous times.

“He is a like a tick magnet. We can all go out somewhere and none of us will get ticks, but he will find one or two on him. He has gotten so he can feel them, and he will say, ‘Mom, is there a tick right there?’”

Tillman is on antibiotics again and looking forward to a day he doesn’t have to live with the disease.

For Emily Adams, the diagnosis was easier but the treatment turned into an eight-year nightmare.

“I was diagnosed in 2010 when I was in sixth grade,” Adams said. “I had always been very athletic. I played basketball and soccer and was into swimming and track. All of a sudden, I started getting these headaches all the time and I couldn’t even stand up for more than a couple of minutes.”

Adams also tested positive for Lyme Disease and was prescribed antibiotics, but that was not the end of the story for her. She had several relapses, saw numerous doctors and seemed to be over it during her high school years at Stone Bridge High. As she was preparing for her freshman year at Mary Washington University, she relapsed with another severe bout that kept her off the swimming team and disrupted her first two years of college.

“I had horrible back pain and I started losing my memory,” she said. “I got horrible anxiety and started having uncontrollable panic attacks. I was tired all the time and I would get brain fog, where I would be talking to someone and couldn’t remember what we were talking about.”

At this point Adams’ mother, Cindy, took a more proactive approach.

“I had gone through this lyme disease, so I thought when she tested positive that she would be fine,” Cindy Adams said. “Luckily, I had a friend and she knew everything about it. She said, ‘You need to be smart about it’ and I learned a lot from her. She pointed us in the direction of what they call lyme-literate medical doctors – or LLMDs. He knew enough to go beyond just what they tell doctors in the publications.”

What followed was months of a treatment called pulsing. Pulsing is capable of killing bacteria during different life cycle stages of Lyme Disease.

A study published by the American Society for Microbiology described the benefits of pulsing as follows: “They suggest that 5 days on/5 days off may be a better schedule than every day dosing. This gives the persister cells a chance to morph back into antibiotic susceptible cells. Currently, the persister cells are not affected by antibiotic treatment. So this means that once the active spirochetes are killed, there’s no point in taking antibiotics continuously if they have zero effect on the persister cells.”

Emily Adams had a medical port inserted near her shoulder so her medicine could be injected in a method similar to intravenous tubes in a hospital. Her mother became an expert on her care and treatment, helping her inject her medicine while being careful to keep the opening clean and sterile.

For eight months I was going on and off different antibiotics,” Emily Adams said. “We had the option of getting a home nurse, but the insurance didn’t cover it. So, they trained my mother and she was like my nurse for eight months.”

Emily Adams said he feels like “a new person” and hopes to get stronger over the summer so she can get back to a full schedule – perhaps even get back on the swimming team – this fall.

As for outdoor activities, her outlook on that may have changed for good.

“I don’t go hiking anymore,” she said. “I hate going near woods or anything like that. I go outside with my dog, but we stay on the paths or in the backyard.”

Joseph Dill
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