Mommy, You’re Not Sick

I was walking into CVS recently with my boys when my four year old son grabbed my hand and asked me what we were getting at the store.  He really wanted to know what HE was getting at the store.  Stickers?  Candy?  A Toy Story birthday card that sings “You Got a Friend in Me”?  When I told him that I needed to pick up my medicine, he pulled my arm to stop me from walking any further and yelled, “why, mommy??  YOU’RE NOT SICK!”  I looked around at all of the people that I thought for sure were staring at us now and replied, “um, ok, well, I’ll tell you why I need medicine when we leave the store.”  Well, he’s a four year old and he’s persistent.  He wasn’t about to leave that store until he got an answer and I knew that I didn’t have the time to even think about how to explain how a little bug, called a tick, put his germs in mommy and how mommy didn’t look sick but felt sick inside and that my germ was called “Lyme Disease” and it was hard to get rid of…sometimes.  I also knew that I needed to explain it in a way that would not frighten him.  He’s a city kid and is already terrified of flies and spiders.  The last thing he needs to hear is another frightening story about bugs with GERMS that make you sick!

I walked up to the pharmacy and told the pharmacist that I was picking up my medication and Rylan tugged on my shirt and yelled again, “but, mommy!  You’re NOT sick!  You don’t need medicine!”  I turned to him and said that we would talk about it as soon as we were done, but he continued to inform me that I was not sick.  All I could think of while Rylan was yelling at me and while Finn was happily pulling every piece of candy off the shelf in front of him was, how should I tell Rylan about Lyme disease and this woman thinks I’m an addict.  I come here twice a month to refill several different types of medication and now my son is telling her that I’m not sick.  I’m so embarrassed.  And, why do they display this darn candy so close to the floor?  I couldn’t even make eye contact with the woman who handed me my medication which probably made me look even more suspicious and I quickly picked up the candy and got out of there.  What am I, 12?  I’m a grown adult picking up my medication, prescribed to me, and I get so flustered at my son’s insistence that I’m not sick!

On the walk home, I thought very long and hard about how I was going to explain everything to him.  I never talked to him much about it before because I didn’t want my illness to affect him in any way.  And, I didn’t want him to be afraid to do the things I once did freely.  I also didn’t think he would really understand, but I’m beginning to realize he is a lot smarter than I give him credit for.  A few weeks before the incident at CVS, my husband asked me if I wanted some ice cream and Rylan replied, “no, she can’t, daddy.  She has Lyme disease.”  My husband and I looked at each other, stunned that Rylan knew what I had and why I couldn’t eat ice cream.

So, my four year old boy and I sat on the couch and had the talk.

“Mommy, did a bug get in your stomach and make you sick?  Why are you still sick?”

“No, honey.  I had a bug, called a tick, bite me.  He was on me for a long time so I couldn’t take him off before he put his germs in me.  His germs are called Lyme disease”

“Mommy, can lady bugs give you germs or Lyme disease?”

“No, sweety.  Do you know why we do “tick checks” every day?  So, that we can take the ticks off of you before they put the germs in you.  Only mommy and daddy can take the ticks off.”

“Can bees and ants give you germs?”

“I don’t think so.  But, the tick that bit me made me very sick.  I feel better now, but I need to take medicine a little bit longer so that we can make sure that we get all of the germs out.”

“Will I get sick if a tick bites me?”

“Honey, I’m going to make sure that doesn’t happen so don’t you worry.  If you do get sick, we will make sure you get better.  You don’t have to be afraid of bugs.  Only the ones that sting, like bees.  Mommy will look out for the ticks for you.”

“And, will you get better?”

“Yes, honey.  I’m feeling better everyday.”

Our talk went better than I expected and Rylan understands why his mommy takes medicine and that I’m getting better every day.  And, now we can pick up my medication without causing a commotion at CVS.  :-)  Score!


Testing Children for Lyme

I’ve been wanting to post this for awhile but have been mostly too busy to write.  I thought it was important to write about what recently happened to my niece in hopes that it would help those of you with children who might come in contact with ticks this summer.

A few months ago, my sister-in-law found a tick on my niece and immediately took her to the doctor’s office to have it removed and tested.  They live in a rural area so “tick checks” are a daily occurrence at their house.  The doctor informed them that she would test my niece for Lyme disease 4-6 weeks after she was bitten as the test would not be able to detect any antibodies for Lyme until then.  In the meantime, my sister-in-law made her doctor send the tick to their lab to get tested.  About a week later, my brother got a call from the lab and they informed him of the results.  It went a little something like this:

Lab:     “Mr. C., I have the results of the test on the tick that was sent to us.  The  tick is in fact a deer tick.”
Bryan:  “Ok… wasted five days just to tell me that you have identified that it was a deer tick?  Is that particular deer tick a carrier of the Lyme pathogen?”
Lab:     “There is no test for that.”
Bryan:  “Well then how can we know that deer ticks carry the Lyme pathogen if there’s no test for it?”
Lab:     “Well, there’s no test.”

My brother, Bryan does some research and finds a lab in New York that test ticks for Lyme.  The tick is then tested and eleven days later, they find out that the tick is a carrier of the Lyme pathogen.  So, TWO weeks have passed and it is very possible that my niece could have Lyme.

My brother is obviously very upset and concerned and calls my niece’s doctor so that she can put her on antibiotics.  Even though the tick had been attached for over 12 hours and had been agitated by my niece picking at it, her doctor refused to treat her and said they had to wait for a positive Lyme test from my niece and that she would not administer the test for another two weeks.  Her reason for not putting her on antibiotics:  the risk of C-Diff!  Well, C-Diff can easily be prevented with a probiotic and I think the risks of actually having Lyme disease are far worse than C-Diff!  I also know first hand how important it is to treat right away.  Weeks without antibiotics make a huge difference in how you will recover.  I am coming up on my one year anniversary of having Lyme myself. Happy Anniversary to me!

Well, after several heated conversations with my niece’s physician, my brother finally found a Lyme Literate MD in Albany, NY who met with my niece for over an hour and is now treating her with antibiotics.  She also tested her for Lyme and other co-infections and they will get the results of those tests on Tuesday.  This doctor is treating so many children in upstate New York and some that are very, very ill.  My niece is in good hands.  Thank God.

After writing this post, I talked to my brother on the phone and asked him what he would do if this were to happen again and this is what he said:

1.  Bring your child to his/her doctor immediately and have the tick removed at the doctor’s office and ask to have it sent off for identification AND testing.  It’s very important to ask for it to be tested for Lyme as most doctor’s offices only send the tick out for identification.  Some insurances cover this, but if yours does not, I believe the testing costs about $100-$130.
2.  Have your child tested with the ELISA AND the Western Blot.  Although these tests are highly inaccurate, a positive test in an endemic area like MA and NY should indicate that your child has Lyme.  I would try to arrange to have tests sent to the IGeneX lab.  Your child should also be tested for co-infections.  Most people with Lyme have one or more co-infections that need to be treated as well.  Unfortunately, most physicians do not test for co-infections.  That’s why it’s always good to have a good LLMD nearby.
3.  If your child tests positive, make sure they are put on antibiotics for at least 6 weeks.  Watch for symptoms after the course of antibiotics are complete.
4.  Find a Lyme Literate MD in your area.  Make an appointment right away as it can take several weeks to get in.  To find an LLMD, click HERE.

We are not doctors.  These are just suggestions from two people who have been affected by Lyme.

Bryan and Wen, little C will be in my prayers tonight.  I pray that all of the tests come back negative and that she is well.  I do believe though that you have found a wonderful doctor for her and that she is in very good hands.