Sunday, May 02, 2010

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.

21 comments:

  1. Sue
    I am so sorry that this has happened and as a mother I know how easy it would be to blame yourself...like you said, the symptoms all overlap and that is why it is so hard to distinguish one from another. I am glad he got the rash because that is a neon light isn't it!
    Joel and I both have Bartonella and take Zithromax/azithromyacin and I take the herb cumanda that my LLMD recommended too. Die off is challenging and bartonella is a formnable foe, but Jamie is young and meds are there to help get rid of it.
    Some day I believe we will see how the Lyme and CFS/ME are connected in many more cases...I think it will be the which came first question! What makes us susceptable to the other or what is the result of the other. Joel and I have CFS as a result of the Lyme according to my LLMD.
    Anyway, looking forward Sue ~ Jamie has a great mom who advocates for her kids 150% ~ how blessed he is. You are all in my thoughts and prayers...

    ReplyDelete
  2. Yay & Boo! Yay that you figured it out & can begin treating him! Boo that he has it :( I hope the treatment is good to him; keep us posted.
    ((hugs))

    ReplyDelete
  3. I know it's been a stressful weekend, but this is potentially great news because, not only will antibiotics treat the bartonella but it sounds like the bartonella has been aggravating his CFS. So Jamie could get "double better." Wonderful!

    ReplyDelete
  4. Anonymous8:14 PM

    Wow Sue that is really interesting! My 16 year old son has marks just like those...horizontal ones that look like stretch marks across his lower back. When we went to the pediatrician in October his back was aching, he was exhausted, serious fatigue (discovered later acute Epstein Barr - mono)the doctor thought it odd that he had those marks and assumed they were stretch marks. I'm going to forward your link to his infectious disease doc. FYI: After about a month of battling with the insurance company (long and annoying story) we finally got his Valcyte script filled and he started taking Friday night. He is very tired, but happy to be starting treatment. Thank you for posting!! Twoboysmom

    ReplyDelete
  5. Renee -
    Yes, the herx reaction is now what I'm worried about, especially with the end of the school year coming up. I'm hoping it won't be bad for him, but there's really no way to tell. Obviously, it's worth it to treat the infection and help him get better - we'll see how it goes...

    2boys mom -

    Oh, my gosh! I can't believe your teen son has the same rash. It's pretty distinctive - I don't think anything else causes those lines. Let me know how it goes with his doctor.

    Sue

    ReplyDelete
  6. A quick note to Anynomous. Epstein Barr (EBV) almost always accompanies Lyme - you can get it without LYme, but Lyme rarely shows up without it.
    Consider finding an LLMD in your area (I'd get a second opinion to your infectious disease doc) ... it's such a tricky disease!

    ReplyDelete
  7. Twoboysmom -

    Just another thought...if your son has bartonella, there's an excellent chance that he also has Lyme. he should definitely be tested for Lyme and all the co-infections (though the tests are not 100% accurate - they're prone to false negatives). E-mail me if you need more information.

    Sue

    ReplyDelete
  8. PJ - Good advice - I just said something similar!!

    Though I've never heard before that EBV accompanies Lyme. Jamie's had Lyme twice but still tests completely negative for EBV (he's never had mono). I have heard, though, that Lyme - like CFS - causes reactivation of any latent viruses, so if you've had EBV in the past, the Lyme could reactivate it. That's why I've stayed on antivirals during my Lyme treatment. I definitely need to read some more about Lyme and its co-infections, despite my own experiences.

    Sue

    ReplyDelete
  9. Now that I read what others have said, Sue, I apologize for being overly upbeat in my comment. I'm just not Lyme literate. I didn't realize there could be a herx reaction to the antibiotic. I hope the treatment goes as smoothly as possible for Jamie.

    ReplyDelete
  10. Anonymous10:45 PM

    Hi Sue and PJ,
    We did more extensive blood work at the end of March locally and thru Wisconsin Viral. He initially had "equivocal" for Lyme, but with more detailed testing negative overall - with only 41kD IGG as "reactive" , all IGM were non-reactive so the doc told us no Lyme. He did test positive for HSV1 and HHV-6, as well as a pretty low NK cell count. He has had a tough time with the fatigue, pain in the joints and muscles, POTS, along with serious 'brain fog'... or what he tells me "my brain just won't work". Hanging in there. Very glad that ya'll post such helpful information for a newbie like me! Sent doc the info. and will likely hear from him tomorrow.
    2boysmom

    ReplyDelete
  11. Oh my gosh! I have lines similar to those on my lower back also. I developed them around the time I was 14 and growing very fast one summer (I'm 28 now). Can it be that they are 'just' stretch marks? I can try to take a pic later when I have a chance for comparison.

    ReplyDelete
  12. Toni -
    No need to apologize - I'm very optimistic and excited, too!! A herx is temporary and means the abx are working. If he herxes, it's just further proof that the treatment will help. I'm waiting for the doctor's office to open this morning - can't wait to get him started on treatment!

    Twoboysmom -
    Those negative test results don't guarantee he doesn't have Lyme. I have Lyme and had no positive test results (just one band on my Igenex test). The fact that he has both joint pain and brain fog as primary symptoms, plus the bartonella rash, points to a strong case for Lyme, regardless of the test results. It's also possible that our CFS gets in the way of the Lyme and co-infection testing because our immune systems don't respond normally to the presence of the spirochetes and bacteria. The only true test is to try doxycycline and see how he responds - getting better - or worse (herx) indicates it IS Lyme - no change in symptoms means Lyme is unlikely. Here's another post on Lyme testing:

    http://livewithcfs.blogspot.com/2009/03/cfs-and-lyme.html

    David -
    Wow! This is amazing, isn't it? It is entirely possible that you've had bartonella (and maybe Lyme) for 14 years without knowing it. There are other readers of this blog who had Lyme for 20 years or more before being accurately diagnosed. You should definitely look into it, especially if the rash matches. Let me know what happens!

    Sue

    ReplyDelete
  13. Sue, you are so knowledgable on CFS and Lyme ~ always amazes me how to see a problem and just tackle it head on. Inspirational for the rest of us...And your positive attitude is what I need more of!
    I am learning some things here too...Joel tested positive for EBV before we knew he had Lyme! I do not test positive for any viruses at all...none my LLMD tested me for which was a big surprise to her and me.
    As you know some herx alot, others not so much. Joel's big herx symptoms is fatigue..I have that plus on going pain. And like you said, IF you herx that means those nasty bugs are dying!!!!

    ReplyDelete
  14. I'm sorry to hear about this, but hope that the treatment will be as painless and profitable as possible!

    And your point about not assuming it is (just) CFS/FM/etc is one I keep trying to follow. It's hard to know when to speak up, as you don't want to miss an important clue, but it's also impossible to mention the 5409 things that are going wrong/just off about my body.

    ReplyDelete
  15. Anonymous7:28 PM

    Ok,
    Well my son's doctor sent me a lab order (one to monitor him for the Valcyte, but also one to test for Bartonella IgM and IgG - hensalae and quintana). We go in for the labwork tomorrow and will see where this leads. He also had me send him pics of the rash/stretch marks and I just sent that late this afternoon. Will update if anything intersting comes up.
    2boysmom

    ReplyDelete
  16. I'm not sure how to respond to your weekend. My gosh! It seems to me that figuring out one has Bartonella would be a worrisome thing.

    I really hope that the medication helps Jamie get well...on both fronts.

    ReplyDelete
  17. It's one of those bad news/good news stories. It's reminded me it's time to speak to my new doctor about the possibility of Lyme, so I'll be doing that on Thursday. I already have an appointment.
    Also, before I joined this blogging community I wouldn't have known to check for ticks. So, thank you, from about ten people in my immediate circle who are now tick aware.
    I hope Jamie's treatment goes well.

    ReplyDelete
  18. Anonymous10:02 AM

    Sue -

    If you do not get a positive test for Bartonella from IgeneX, I would take a look at this other company called Galaxy Diagnostics. They were in my local newspaper the other week, and when I read your blog, I remembered hearing about a new test that this company offers. Google "news and observer bartonella" or go to

    Good luck!

    ReplyDelete
  19. Anonymous6:24 PM

    I know this is an old post but many with CFS may have lyme, bartonella or other vector-borne infections. Or other chronic stealth infections.

    I had previously been diagnosed with fibromyalgia, then CFS, then lupus, then MS, then bi-polar. All were wrong. I had lyme and 2 other tick-borne infections and 2 other stealth infections, Cpn and HHV-6. More detail here:

    http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

    Diagnosing Lyme Disease (&/or whatever else is going on)

    Other tick-borne infections and other chronic stealth infections.

    ReplyDelete
  20. Anonymous7:21 PM

    I have a sad story My daughter had lyme/bartonella and my ex husband worked against me claiming she was fine. I ended up fighting dcf in court and losing custody of my girls ages 8 and 11 at the time. It has been 2 yrs I was accused of munchausens by proxy and parental alienation. They are with their abusive dad now. I am sick too and broken hearted. No one understands these diseases!

    ReplyDelete
    Replies
    1. Oh, my gosh - that is horrible, on so many levels!

      Can you see a doctor for yourself and maybe hire a lawyer? Do you suspect you have Lyme also or do you have a different diagnosis?

      Please let me know if you need help finding a doctor.

      I'm so sorry for all you have been through.

      Sue

      Delete