Personally Speaking
September 4th, 2008 by Sonja

I haven’t written in a while and I apologize.  Things have have been bubbling here in the LightHouse, some good, some … eh.  So I’ll fill in the gaps for you.

Back in July LightGirl was visiting a friend and they went walking in the woods chattering away as girls are wont to do.  A few days later, she found a tick in her bellybutton (of all places).  She had a rash and some other odd symptoms so I took her to the doctor … who chastised her for not wearing insect repellent and did some blood work.  And off we went on our trip to Vermont.  Some days later I received a phone call from the doctor’s office saying that the test for Lyme Disease was positive and they were calling in a script for antibiotics.  Okay.  She didn’t do well on those particular antibiotics, so we changed to a type called Ceftin.

She finished that round last Thursday (a week ago today).  But she wasn’t doing well.  She was lethargic and achy.  Her head hurt and she didn’t have a very good appetite.  I had to beg her to go to hockey practice (which is very unlike her).  So we went back to the doctor, who put her on another round of antibiotics and got us an appointment with an infectious disease specialist if she did not improve by the end of this round (mid-September).  By Tuesday morning, something was seriously wrong with my girl.  She couldn’t stand up longer than a minute or two and was complaining that her knees hurt.  She would not go up or down the stairs more than once a day.  So I called the doctor to get in to see the infectious doctor earlier.  It took two days, but we finally got an appointment to see a specialist in Charlottesville today.  Our doctor faxed her records to him.  Imagine my surprise, when he called yesterday afternoon to tell us that her Lyme blood test results from July were NEGATIVE!  They had never been positive at all.

LightHusband looked up her antibiotic on the internet and it seems that the symptoms we had attributed to Lyme Disease are also less common side effects of the Ceftin.  She has not taken any of the antibiotic since that phone call (she’s missed two doses) and she is steadily improving.  She has no joint pain and her soul is back there in her eyes.  She’s laughing with us and eating normally again.  She has a lot of her sass back … which I may regret, but I will enjoy.

So there have been quite a few ups and downs over the past few days.  I’ve been reading the political news fairly avidly and will probably be sharing some of my thoughts on that soon.  I have a few more book reviews to post in the next couple of weeks.   I’ve been trying to get school organized and begun … but of course, with LightGirl sick, no school has happened.  However, LightBoy has begun making SockMonsters from all of our singletons this week.  He is also using LightHusband’s old ties as accoutrements.  He is busy dreaming up an internet kingdom selling these recycled toys.  So, this is an education of a different sort.

Sigh … onward and upward.

UPDATE:  And now the rest of the story …

We had an appointment with our primary care physician this afternoon and an education at the same time.  So … it turns out that there are “strict constructionist” doctors, just as there are strict constructionist judges.  Who knew?  When testing for Lyme Disease there are these things called bands.  I have no idea what those are … but they … um … are.  In any case, there are five of them.  For a strict constructionist doctor, you must have five of five positives to get a diagnosis of Lyme Disease.  Now, our primary care doc, saw LightGirl … saw that she was presenting with a tick bite and a rash AND three out of five positive bands and decided to be conservative.  She does this all the time.  She said that only one of her Lyme Disease cases presented with all five bands positive this summer.  It’s a gray area, as she freely admitted.

LightGirl is doing better and better the longer she is off the meds so all is well and we are all breathing a little easier now.

12 Responses  
  • grace writes:
    September 4th, 200812:44 pmat

    I am relieved that Lightgirl is on the mend, but slightly infuriated about the misdiagnosis. It’s awful that she had to go through all of that unnecessarily.

  • Ken Berggren writes:
    September 4th, 20083:55 pmat

    Glad your daughter is doing better. I do wish doctors were more up-front with their methods of diagnosis and the side-effects of meds. Doctors should be consultants helping us make the best decision ourselves, not making those decisions for us.

    Prayers for you and yours as you begin the school year.

  • Patrick O writes:
    September 4th, 20085:20 pmat

    Thanks for the update. Glad that by the end of the post everything was working out. I got really worried around the middle.

  • Julie Clawson writes:
    September 4th, 20086:03 pmat

    yikes. I hope she continues to improve.

  • cindy writes:
    September 4th, 20089:00 pmat

    yikes is right- sonja! i’m so glad she’s better, but wow. you seem to handling it very well.

    isn’t it funny/strange how the word “conservative” in doctor land can mean “treat you like you’ve got Ebola when it’s really just the flu” or it can mean, “we don’t like to give meds until we’re sure you need them.”

    And then it’s our job to guess which way any particular doc is going to go. geez. makes me crazy.

  • Ken writes:
    September 4th, 200811:43 pmat

    Glad to hear she is doing better, we were worried!!!

  • Erin writes:
    September 5th, 200812:08 amat

    I’m so sorry she had to go through that, and thrilled that she’s on the mend!

  • brad writes:
    September 5th, 200812:15 amat

    Good news indeed about your daughter. Glad for the update!

    Meanwhile, I wonder if I have some ummm … exotic … ’80s ties running around that could be untransmogrified into accoutrements?!

  • Lyn writes:
    September 5th, 20082:25 amat

    Oh my GOODNESS! I’m glad she is doing better now.

  • Sonja writes:
    September 5th, 200812:43 pmat

    Wow … everyone thanks for the support and love. It’s wonderful that she’s doing better now too. I never thought I’d be so glad to have her sass me again. She and LightBoy and I just had lunch together and laughed and laughed. It felt good.

    @Brad … just hold on to those ties for a while. He’s got a significant (how shall I say this?) product testing phase to engage in before he’s ready for supply lines. 😉

  • vikingfru writes:
    September 7th, 200812:26 pmat

    Oh that is scary. It makes me think that we need to investigate everything we give our kids. I am glad that your daughter is better. How frustating that they screwed up the diognosis!

  • Heidi writes:
    September 15th, 20089:23 amat

    Ugh. Docs can be so stupid. I have heard some pretty terrifying stories of Lyme misdiagnoses, although they usually go the other way – a little girl I knew had Lyme, but they diagnosed her with Lupus, and the drug they gave her for Lupus is fatal in someone with Lyme. So yeah. Very bad. Her dad KNEW, but could not refuse treatment or he would be charged with neglect and she would have been placed as a ward of the state. That was the worst funeral I will ever attend.

    Then there are people who have chronic Lyme, which is very hard to diagnose, because they will never have 5 out of 5 bands positive but the disease is still at work.

    It’s very tricky, and impossible to know these things when first encountering a diagnosis. So you think that’s the doctor’s job…..riiiight. I’ve found in the last two years and all my health issues (I’ve seen 5 doctors now) that I basically have to be my OWN doctor, and know enough to make educated decisions. The most recent doc I’ve seen is fabulous -for the first time I learned something rather than feeling like I had to educate the doc. Pretty crazy yeah?

    I hope she keeps feeling well and gets her system all cleaned out from the strong antibiotics. Some probiotics (kefir, yogurt, or supplements) might speed the recovery if you haven’t already started those.

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