Jack’s Story with Lyme

Meet Jack, our creative, intelligent, and go getter, almost 10 year old son.  Everything in this world started off easy for him.  He’s the oldest of 4 boys and was always well ahead of his peers.  As a 2 year old, he’d beg to “do homework”, and would cry when it was time to put it away.  His drive for information is what drove us to start homeschooling him, after no preschool would take him until he turned 3.  He was always a grade level above his peers and always craving more.  He excelled in just about everything he tried.

Almost 3 years ago, things started to change.  Jack, the kid that used to sit forever and work diligently on assignments, could barely sit still for 30 seconds.  I’d turn my back on him while he was doing homework, and he’d be off doing something else.  He started to get really angry and aggressive.  Like the flip of a switch, he’d be screaming his head off, destroying things in our (brand new) house, punching his brother to the floor, stealing, and lying.  He could no longer follow directions.  At first, we thought it was just a listening problem, but it got to the point where he couldn’t even follow a one-step direction to completion.  He lost interest in many of the activities he used to enjoy too.  We felt like we had lost our son and we had definitely lost the joy in our family, but we didn’t know what to do about it. We kept trudging along and prayed that things would somehow go back to what they used to be.  Every day started out rough, we were all walking on egg shells around him – trying not to set him off – and homeschooling became challenging.

We took him to the pediatrician as a starting point.  He was diagnosed with ADHD, anxiety, and depression, and was prescribed an anti-depressant.  We were worried about medicating our almost 9 year old.  We had tried medication with our other son and he began acting like a zombie.  We didn’t want Jack to lose his creativity, so we decided to forgo the medication and just keep plugging along as we had been doing.  I spent hours online each night, researching different things we could try at home.  We eliminated gluten, dairy, and refined sugars.  I tried essential oils and was giving him different vitamins to see if anything would help.  I soon began to realize I was headed in the direction of functional medicine, which I knew nothing about.

I hit a breaking point one day when Jack asked for help on an assignment.  It was a simple subtraction problem.  He didn’t know how to do it and we’d been working on multiplication already for months.  He was losing knowledge and slipping behind.  I spent hours researching what he could have.  This could not just be attitude and behavior.  This could not be normal.  I finally saw another mom post about Lyme disease in a Facebook group and realized Jack had so many of these symptoms.  I was ready to take him to the Dr. the very next day.  I brought him back to the pediatrician and mentioned Lyme and he brushed me off.  I joined a parent group on Facebook and soon found out, that Lyme disease is extremely difficult to diagnose (the testing is unreliable) and the best route was for us to find an LLMD (Lyme literate medical doctor).  A functional medicine Dr. in MN was recommended to us.  I had no idea that their services are covered only as out of network.  Many aren’t covered at all by medical insurance.  We already had our heads under water with our special needs (genetic mutation, low muscle tone, developmentally delayed, ASD) son.  His medical bills were already making it hard for us to get by.  After another extremely difficult day, we bit the bullet, and took Jack to the LLMD.  He was diagnosed with Lyme disease and many coinfections.  She was willing to fight with us to get our son back.  We had finally found a place that believed us and would help us to heal his body and not just treat his symptoms.

In one month, we spent well over a $1,000 for just Jack’s Dr. visits and supplements.  Soon after Jack’s diagnosis, I (his mom) was also diagnosed with Lyme and coinfections.  Our family’s medical situation was making it hard to get by.  A friend of mine recommended we apply for a Grant through Hope Rooted and we figured it was worth a shot.  Jack was awarded a grant and it helped us immensely as we tried hard to get him the help he needs.

We have now moved to ND and travel back and forth for Jack to seek treatment in MN.  We are have our good days and our bad days here.  We are forever grateful for what Hope Rooted has done for Jack and our family.