Friday, June 3, 2011

Our journey with Lyme Disease

This weekend we watched the documentary Under Our Skin which made me feel compelled to share our experience with Lyme disease.

In 2005 this tiny bug changed our lives forever.

Megan - "Mommy there's a bug on Michael's stomach"  Me - "That's not a bug it's just dirt" 

Those words will haunt me the rest of my life.  If I had a time machine that is the day I'd go back to.  If I had listened to my 4 year old I would have discovered the tick that gave my boy Lyme disease.  Maybe if I hadn't brushed her off I would have removed it before it transmitted this nasty disease to him.  But that's not how this story played out.  The next day when I went to give him a bath I discovered that in fact it was a bug.  I removed it, kept it in a baggie, and called our pediatrician.  I was told that is was "highly unlikely" that this tick was carrying Lyme but to keep an eye out for the bulls eye rash.  The next morning I checked his belly only to find this damned rash.
Bulls Eye rash
So off to the pediatricians office we went.  He was unfamiliar with how to treat Lyme and had to leave the room to check a book or website or something.  We were prescribed 30 days worth of Penicillin and told that all was well.

Fast forward 2 years.  We had just moved out of state when some strange behaviors started to pop up at home.  Michael began to get aggitated and angry at the drop of a hat.  After another year or so he became uncontrollable at times.  He would scream how much he hated us, that he wished he had a different family.  So of course we went to our pediatrician. (different group this time)  We were told that it was a behavioral issue and to put him in a corner and tell him that he could rejoin the family when he could calm down.  When we questioned how to keep him in this corner we were told to stand in front of him if we had to.  So home we went armed with this new knowledge that if we were just consistant then things would get better. We, however, were not armed with the knowledge that standing in front of him would endanger our safety.  He would kick and punch at us until we had to move for fear that we would really be hurt.  Somehow this 5 year old boy had strength enough to make me fear that he would break my leg.

Over the course of the next 3 years Michael saw numerous pediatricians for ear infections, pneumonia (which he had 6+ times in one year), H1N1, and a number of other illnesses.  He was sent to an allergist who discovered a horrific sinus infection and pneumonia yet again, and believed he had asthma (which we treated with an inhaler) an ENT who discovered that his adenoids were blocking 85% of his sinuses and removed them, a child psychiatrist who diagnosed him with anxiety (and prescribed Zoloft) and believed he may have Bi-polar disorder.  Not only did he have these physical problems but his violence and aggression got progressively worse.  It was at this point that I had had enough.  Enough of the doctors not knowing what was wrong, enough of being brushed off every time I mentioned Lyme disease, ("if he had antibiotic treatment then there's no way that that's the problem") enough of spending my hard earned money on "specialists", enough of pumping my little boy with drugs that I didn't believe he needed, and more than enough of being abused verbally and physically. 

I took to the internet and started to reseach. (what did we ever do before the internet?!) Michael did not present with "typical" Lyme symptoms but my gut kept telling me this was the problem.  He would complain that his brain shook, he didn't sleep, his immune system was completely compromised and he would get sick if somebody looked at him wrong, he couldn't make a decision because he couldn't think clearly, he was just a mess.  What I discovered was chronic Lyme disease.  (which the powers that be don't believe exists) I was lucky enough to find a Lyme specialist that would see children.  (not an easy feat mind you!)  It took 6 weeks and a letter written to her about Michael's symtoms for us to get an appopintment and I thank God every day that we did.  Michael has been on antibiotic treatment for the past 7 months.  I now have a different child.  Is he compeltely well?  Not yet.  Does he still lose it from time to time? Yes. (especially the 3rd day after taking Tindamax)  But for the most part we have our son back.  We don't fear for our safety.  The girls are no longer afraid of their brother.  This is a miracle in my book.

It's so difficult to describe to someone the pain and heartache we all went through for 5+ years.  Just before Michael started treatment when things were at their worst and I was at my wits end I wrote this poem, it is the only way I could put into words what we were going though.  I am sharing it today in hopes that it may help others.  What I have learned through all of this is to follow your gut.  Fight for yourself, your spouse, and your children.  Don't allow those who "know better" dismiss you.

I wave my white flag
But still he attacks.
I hear the battle cry
And feel him running towards me.

Somehow he cannot see that I have surrendered
I am defeated.
Still he charges at me.
He has taken everything yet he keeps coming back for more.

The sound of his voice rings in my ears
His words taunt me.
His actions haunt me.

Where once there was love
Now is contempt.
He spits words at me like bullets
Each one piercing my skin
Leaving gaping holes.

He leaves me to bleed.
Unapologetic for the carnage he has dealt.
Finally he retreats
But I know he will be back to fight another day.

I wave my white flag
Somehow he cannot see that I have surrendered.