Learning he has Lyme

It wasn't until I was asked about my son's health history, as much as I could remember all the way back to the beginning, that I found what must have been when John began to show Lyme signs.  He was almost 5 years old.  It was January 2010.  John came to me before bedtime and told me his knee hurt.  I figured he was stalling bedtime, like any typical child, so I didn't pay much attention to it.  In the morning, John woke up unable to bend his fingers.  I distinctly remember the way he showed me that none of his knuckles worked properly.  He also could barely walk, as his ankles were so swollen that he had "cankles."  The knee that was bothering him the previous night had a large hive on it, as did his other knee and one shoulder.

I immediately called his pediatrician and got an early morning appointment.  She hadn't seen anything like this, and sent me to the local children's hospital.  They ran a litany of tests, including a pretty traumatic blood test, which would become the first of many in his life.  It was like they were throwing darts at a dartboard.  After 3 hours, the staff doctor came in and told me that they had no idea what this was, but it was probably a weird virus.  I was to let them know if he didn't get better in 2 days.

The two days passed, and John was better.  The joint pain and swelling had left as quickly as it came and his hives disappeared.  It was strange, but it was over.  So I thought.

In February of 2015, we started noticing little things about John were off.  When he was playing hockey, it was like he couldn't react to the puck.  I thought maybe his vision was the problem, and I took him in for an eye exam.  He could use a minor correction, but not enough to cause problems.  He just wasn't moving as quickly as he used to.  

Major signs that something was wrong began in April of 2015.  He was having a hard time focusing on any writing, either creative or math.  If it involved paper and pencil, he struggled.. but not in the typical way.  He could dictate to me what he wanted to write, but the physical act of writing was incredibly taxing to him.  And, out of nowhere, he began to have daily headaches and low grade fever from 11am-2pm, like clockwork.  He would shut down, unable to function for 3 hours in the middle of every day.  He was also generally pretty tired.  

After a couple days of this, we took him in to the minute clinic.  He tested negative for strep throat.  If it doesn't clear up in a day or two, go to your regular doctor.  It didn't clear up, so we were back to his pediatrician.  She suggested a blood draw for Epstein-Barr virus, and a host of other likely suspects.  I remember the doctor caught me on the way out and said "Wait.. do you want me to run a baseline test for the autoimmune disease you have just in case?  I have enough blood."  Definitely!  This would be a comfortable diagnosis to me, as I wasn't new to Hashimoto's, and if that's all this was, then it would be manageable.

His blood work came back as hypothyroid and autoimmune thyroiditis, a.k.a. Hashimoto's.  When we got the word, I was out on business, and my husband, Paul, was home.  Paul took him back into the doctor the following Monday to discuss with the doctor.  He told her "You had better run all the tests for what my wife has... low Vitamin D, low ferritin, and a serum iron panel."  The doctor agreed, John had another blood draw, and he was low in everything I am.  I thought this was it.  After all, it made perfect sense.  The cyclical headaches and fevers could be caused by stressed out adrenal glands from untreated thyroid conditions like Hashimoto's.  Plus, John is 5th percentile for height and weight (born 50th percentile in both categories)... thyroid issues can mess with a child's growth and development.

Our pediatrician at the time didn't feel confident dealing with Hashimoto's.  She recommended we find someone else to help us.  We eventually found a knowledgable doctor who would treat John.  The first week John had thyroid support, my little man grew 1/2".  Woohoo!  We were very hopeful that this truly was our problem.  We continued with this doctor, adding thyroid medication until his numbers looked good.  We supplemented iron and vitamin D.  We thought we were making progress, but in fall of 2015, we stalled.  His numbers were not predictable.  He didn't feel better.  He didn't keep growing.  It just didn't make sense to me, and it didn't make sense to his doctor either.  She recommended we talk to a compounding pharmacist and ask him for direction.  He pointed us to a clinic known for functional medicine in pediatrics.  

The new functional clinic became our first foray into what would become our norm, out-of-pocket medical expenses.  The specialist ordered NutrEval to see what nutrients were getting to John's cells, and a hair minerals test to see what toxins were in his system.  After those results, she ordered an Igenix Lyme test.  When the results came back, she told me we "couldn't rule it out."

Lyme disease is one tricky beast to diagnose.  Only roughly 30% of people get a bullseye rash when they contract Lyme.  It's been said that if you get the bullseye, it's like winning the lottery.  You know what you have.  You can deal with it quickly using antibiotics and can move on with your life.   If you're one of the 70% who didn't get a bullseye rash, you may not have known you got bit by something carrying Lyme.  

If you start showing symptoms, of which there are dozens, and a doctor may do a blood draw to check for Lyme antibodies.  The problem is that the Lyme antibody test is nearly worthless.  There are many false negatives: a body's immune system might not have had time to make the antibodies, a body might not be well enough to mount an immune response to Lyme, or a body might be infected with a strain of Lyme not detected by the blood test itself.  Even the "gold standard" of Lyme testing isn't foolproof and 100% reliable.  The best Lyme literate medical doctors (LLMDs) tend to use a Lyme symptom checklist instead of blood results.  Experienced doctors know these blood tests fail to give the big picture when it comes to Lyme health.  I digress.

John's doctor said we should begin treating him as if he does have Lyme due to his symptoms and his lack of a negative Igenix test.  He had so many food sensitivities that she did not think antibiotics would be the best route.  We started with an herbal Lyme regimen from Beyond Balance, and we began focusing on detox using Pekana Big Three.  That first month, my son was a funky shade of green.  He felt as awful as he looked.  He was lethargic.  He couldn't even play hockey.  I remember his February 2016 tournament.  All the other kids playing in the hotel pool when we weren't on the ice.  And my son, all he wanted to do was be in bed watching HGTV.  He saved up all his energy to play the games, and rested the other 23 hours.  He missed the last month of the season after that tournament.  He couldn't overcome the lack of energy, and there was no doubt John was very sick.  There was no doubt John had Lyme. 

When I think back to the initial "my knee hurts" incident, I think about how it was January.  Who gets Lyme in January in a cold climate?  I never found an engorged tick on John.  What about as long as you find a tick within 24 hours, you're fine?  What about how Lyme is only carried by deer ticks?  If this is what you believe.....