BIG NEWS: Jamie Has Bartonella!

Wow, I am completely stunned, in shock.  I was freaking out Friday night!  I discovered that Jamie has Bartonella, a tick-borne infection (sometimes called a Lyme co-infection).  His symptoms fit so perfectly that I can't believe we missed it - he's probably had it for at least 9 months, maybe even since his last Lyme infection 3 years ago.  Here's the story...

After soccer practice Friday night, Craig pointed out that the weird lines on Jamie's back had faded a bit.  I took a look at these strange marks we've been puzzling over for many months when a little bell went off in my mind.  I sort of half-remembered reading some discussion about "stretch mark-like lines on the back" just this week on the Pediatric Network, a discussion list on Yahoo Groups for parents of kids who have CFS, FM, OI, and/or Lyme.  That description matched what we saw on Jamie's back, so after the boys went to bed, I went down to the computer and looked back through this week's messages.  There it was - one of the moms had posted that bartonella causes a rash that can look like stretch marks across the lower back.  She advised another mom to search the internet for images of "bartonella rash."  I did, and one of the pictures I found exactly matched the strange lines on Jamie's back.  That's when I started freaking out.

I printed the picture and showed the boys in the morning, and Craig said, "Is that a picture of Jamie's back?"  That's how closely the photo matched Jamie.  The thing is, he's had these weird lines at least since last summer.  We never even considered that it might be a rash.  I did more searching on the internet and sent some messages to other parents on the Pediatric Network.  What I learned got me even more excited.  Though some of bartonella's symptoms (like Lyme's symptoms) are indistinguishable from Jamie's normal CFS symptoms, others stood out to me: headaches and painful foot soles.  On the way home from soccer Friday, Jamie was telling me how his foot pain was getting worse - a burning, aching sensation on the soles of his feet when he plays outside, runs, or plays soccer.  Again, this has gone on for a long time - he first noticed it back in September in gym class.  And, although he occasionally gets headaches with CFS, they've been more frequent lately.

So, I can't believe we've missed this for so long!  These symptoms are unique and so obvious when you know what to look for!  And I've been so worried lately that Jamie's CFS seems to be getting worse or staying the same when lots of other kids start to improve at about this age.  Bartonella is treatable with antibiotics.  As you probably know, any underlying infection makes CFS much worse.  Treating the bartonella could help Jamie improve!  I'm so excited - I can't wait to see his doctor - I'm going to call first thing tomorrow morning.

Here's more information on bartonella, including another picture of a different type of bartonella rash.  Apparently, there are several different antibiotics that work against it, and Zithromax is the first choice for kids under 18.

The lesson here?  It's something my own doctor has told me over and over.  I've said it before here, but it certainly bears repeating:

"ALWAYS check out any new or changed symptoms, even if they seem trivial or strange.  DON'T assume everything is "just" CFS.  Just because you have CFS doesn't mean you can't get something else."

How could I have forgotten this?  Why didn't we get those weird lines checked out sooner?

The other lesson is another one I've said here before...

If you have CFS, consider the possibility of Lyme disease and its co-infections.  It doesn't matter where you live - Lyme is now in every state in the US and almost every country around the world.  Its symptoms can mimic CFS.  And, obviously, don't overlook the co-infections!  These can occur with or without Lyme and have some different symptoms.  Here's an overview of Lyme co-infections and a chart of all tick-borne illnesses and their symptoms.  And some basic information on Lyme disease.

Wow.  I've had trouble sleeping all weekend because my head is just spinning with all this information and its implications for Jamie.  I'll let you know how his doctor visit goes.