Children and Lyme Disease – Part 3 – In For the Long Haul

Continued from my last post… 

I stood motionless with the copies of my son’s latest blood work in my hand.   All appeared normal until I perused the results for the Lyme test.  Three bands highlighted.  By the current medical standards three bands was just three bands.  Five bands were required for a diagnosis of Lyme Disease to be considered.   However, I was shocked.  Had I not requested this paperwork, I would have never been informed by my doctor that there was Lyme activity going on.  My son was symptomatic…this was a bit of a big deal.

I immediately called the doctor’s office and demanded to speak with him.  For the next fifteen minutes we spoke, I in rather forceful, loud tones, he in a calm, yet genuinely perplexed manner.  He had known me to be a calm, level-headed woman.  We had enjoyed many a conversation and laugh together.  We had an incredible rapport with each other.  Our visits were often longer than normal because we talked and shared so much.  At times we had our disagreements, but they were always respectfully received from both sides.  Today, I was a grizzly bear.  I told him that I was concerned that my son had tested positive for three bands on the Lyme test.  He proceeded to tell me about the minimum five band requirement.  I asked him if he was planning to let me know that there was activity going on.  He said that there was no reason to.  I asked him what his protocol was for this type of situation.  He told me that he would recommend coming back in six months for a retest.  I asked him how I was supposed to take my son in for a retest if I didn’t know there was an issue.  There was no answer for that one.  This back and forth continued as I challenged him and his views.  Most doctors do not appreciate challenges from their patients.

Then things got a little personal.  I had experienced similar push back from this doctor when dealing with my oldest son’s Lyme Disease.  He had refused to even consider a Lyme diagnosis and was furious when another doctor did and treated it as such.  My oldest son would eventually test positive for Lyme, and had it not been for a young dermatologist’s forward thinking, he would have suffered the consequences of untreated Lyme.  I flat out asked the doctor why he was so opposed to diagnosing and treating his patients for Lyme Disease.  I equated it to medical neglect and malpractice…my exact words to him.  Let’s just say that I hit a sore spot.  I told him that his intention was to simply file the paperwork (which he had signed off on) and not to give it another thought.  And with that, he handed the phone to his colleague.

I recounted my concerns to her.  Her response troubled me more than the first doctor, “If we retested and/or treated every child who came in with three or four bands positive, then we would be treating and retesting an enormous number of children.”  Read that again and think that through.

My response was a simple one: “Then maybe that’s what you should be doing.”

Our conversation was done.  I would eventually find myself in the pediatrician’s office, his personal office, to calmly discuss this in person.  He told me that he was very taken back by our phone conversation.  I told him that I would only apologize for my decibel level that day, not the content.  He again tried to defend himself.   I again told him that I thought that he was practicing dangerous medicine.  We live in an endemic area.  Lyme disease is very real and has the potential to be devastating if not promptly treated.  He didn’t agree.  We then agreed to part ways.  I felt like I was breaking up with a boyfriend.  I have to tell you that I was quite saddened by this.  I trusted this man and respected him.

As I walked out the door I stood face to face with the row of awards our doctor had received.  “Top Doc.”  “New Jersey’s Best.”  “100 Best…”  Not so much.

Now I was left without a pediatrician.  The thought of finding a new doctor seemed daunting.  I began taking my son to my own doctor who was currently working with me regarding Lyme issues.  She took a look at my son’s blood work and did not ignore it.  Thankfully, my son has been under her care now.  Actually all of my children are under  her care.  She knows my history with Lyme and understands its impact on my children’s own health.   She gets it.  Why does she get it?  Her young daughter had Lyme.  Why did that young dermatologist get it with my older son?  She was a mom with young children and knew the risks.  For us, we are most comfortable dealing with doctors like this.  They see people in their exam rooms, not statistics or numbers.  They listen to their stories and empathize.

My son’s journey with Lyme has been a long one.  I don’t know when it will end, but I pray that he will get better.   Antibiotics have not proven effective for him.  Traditional treatment produces only temporary improvement.  I am left to research, leave no stone unturned, and advocate for my son.  I will admit that I grow weary and tired.  I sometimes wish for “normal”…whatever that may be.  Yet, the Lord has allowed this to be our lot for whatever His purpose may be.

So, my message to parents is this:  be your child’s advocate.  Research.  Find a doctor who you are comfortable with.  Do not allow yourself to be bullied.   Be a grizzly bear if necessary.  You know your child.  You know what normal is for them, and you know when something just isn’t right.  Do not ignore your gut.  Most importantly, pray and pray some more.

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