Wednesday, May 05, 2010

Update on Bartonella...Or Not

Whew, what an emotional rollercoaster I've been on this week!  I've spent every waking moment researching bartonella (sorry I haven't been to any blogs this week) and every sleeping moment worrying about it (which does not make for good quality sleep!)  I went from elation that maybe Jamie has something to explain some of his symptoms that can be treated to despair at learning that bartonella can be as hard to treat and get rid of as Lyme, especially when it goes undiagnosed for a while.  We finally met with Jamie's pediatrician this morning.

Bottom line is that she doesn't think he has bartonella, but - as always - she took our concerns very seriously and spent a full hour with us, thoroughly examining Jamie and questioning him about his symptoms.  She's also going to order the bartonella tests, plus some other bloodwork, but first wants to consult with some experts on which tests are most accurate (understanding that none of them are very good and all are prone to false negatives).

Her take on Jamie's symptoms which could possibly be associated with bartonella:
  • She doesn't think the lines on his back are a bartonella rash.  She says those lines are very common on teens and are normal growth striations and that they differ from bartonella striations in their coloring and their texture.  She did a thorough check of other parts of his body where bartonella rashes are common - on the side of the torso under the arms, lower on his back and thighs, stomach, higher on his back - and didn't see anything.  Still, she agrees it's worth checking out.  She said she knows how common bartonella is in our area and has no doubt there are many people walking around with it who don't know they have it.
  • She questioned him about the pain in the soles of his feet and did a thorough exam.  She thinks this may be more of a vascular problem, due to OI, especially since the pain only occurs when Jamie first starts to exercise and then goes away completely after he rests for a few minutes.  It does happen every time he plays soccer or plays outside, but once the pain subsides 10 minutes later, he's able to go on and play a 90-minute soccer game without any pain at all.  So, she wants him to check for color changes the next time the pain hits and also try some lying-down legs exercises before starting to run to see if improving circulation before exercise helps.
  • She also questioned him about his headaches, GI problems, and light sensitivity (all of which are often "normal" CFS symptoms).
  • Finally, there's the fact that Jamie's CFS symptoms are not particularly flared up - he's been pretty steady for the past year.  When I got Lyme two summers ago, I knew immediately something new was going on because all of my "normal" CFS symptoms were much worse.
She plans to call 2-3 local experts - a pediatric rheumatologist who deals with a lot of Lyme and co-infections, a pediatric infectious disease specialist, and maybe Dr. Rowe, the OI specialist at Johns Hopkins.  Then she'll call us back and order the appropriate tests.

So, I'm feeling relieved and cautiously optimistic now.  We'll see what happens, but I know he's in good hands.  I've said it here many times before, but we are so very fortunate to have this pediatrician.  She is always thorough and attentive, always willing to learn new things and consult with other experts, and always takes our concerns seriously.

Interestingly, a friend of Jamie's at school probably DOES have bartonella.  When they took swimming in gym this winter, Jamie noticed similar marks on his friend's back.  I sent some information on bartonella into school with Jamie to give to his friend.  Jamie asked him how he's been feeling lately, and he said, "Awful.  I'm really tired all the time and have no appetite." (fatigue and loss of appetite are two bartonella symptoms).  When Jamie gave him the information, he looked at the Symptom section and said, "Oh my gosh, I have every one of these symptoms!"  And this is a kid who is normally healthy, without any chronic conditions.  So, regardless of what happens with Jamie, maybe we've helped someone else get diagnosed.

It's time to go pick up Craig, but I'll post symptoms of all the Lyme co-infections tomorrow.  It's still something to be vigilant about!

if you think you or your child might have bartonella, check out these photos of various types of bartonella rash.

10 comments:

  1. You must be utterly exhausted, Sue. Such a roller coaster ride. Hang in there. You're such a great parent to those two boys!
    P.S. The spam check word that I'm supposed to type in below is: frantic. Can you believe that?

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  2. Thanks, Toni. I'm actually feeling pretty good right now - can you say stress-induced flare-up?? The meeting with the doctor really helped to calm me down and reassure me. Whatever happens next, I feel better able to handle it now.

    And I love it when the Word Verification word matches my mood! That's a good one!

    Sue

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  3. You need to see a LLMD, bart is very hard to test for so don't be surprised if the test comes back negative. Plus most general practice docs are clueless about bart.

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  4. Thanks for the advice, Luke. I have a Lyme doctor myself, and I will certainly take Jamie to see him, if I need to. But his pediatrician is quite familiar with bartonella (it's practically an epidemic here!) and made some very good points today about his symptoms not really matching those of bart very well. For now, we will see what she finds out from the experts she plans to talk to, see what the tests show (we both understand they're prone to false negatives but it's a starting point), and keep an eye on him. I'll keep you posted.

    Sue

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  5. Toni - 'Frantic' Oh my gosh!

    Yes, I think roller-coaster aptly describes your week.

    Dealing with my own CFIDS is hard enough but how you do it and take care of two boys with it plus lyme is just beyond me.

    Incredible is the word to describe you!

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  6. Thinking of you - thanks for taking the time to share this information while you've got so much going on!

    Love your doctor, by the way.

    I hope you all get some much needed and much deserved rest soon.

    Peryl

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  7. I'm so glad your doc is being so thorough. It must be a huge relief to you. Crumbs Sue, if it's not one thing it's another. I feel for you. Hang in!

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  8. My gosh, Sue. I'm a little out of the loop and didn't realize all of this was going on. Just stay strong and thank goodness she's checking in with specialists.

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  9. Sue, does your pediatrician have a wait list? She sounds fabulous. =)

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  10. Hi Sue!

    My sons both have congenital Bartonella. One is clinically dx, the other with a blood test. There was just an article about it published in a great medical journal. . . finally some solid evidence!

    I plan to settle in and read more of your blog later.
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