Thursday, April 26, 2007

Whirlwind Week

We've had another crazy, exhausting week here. I can't even seem to find time to write regularly!

Both of our boys ended up being out sick from school all last week. I was pushed to my limits trying to take care of them, worrying about them, and dealing with school issues. Craig had a virus that's been going around our area, with sore throat, cough, and losing your voice. He was horribly sick for about 6 days but, thankfully, bounced back by Monday in time to head back to school.

Jamie, our 12 year old, just wasn't recovering. At first, we thought it was "just" a CFIDS crash, but since Jamie's been on Florinef, his crashes have typically lasted only 2-3 days. We'd noticed some mild fatigue and brain fog for several weeks, and then the 8-day severe, can't-get-off-the-couch crash. When he started telling us his knees hurt horribly, the lightbulb went on in our minds. Pain has never been an issue with Jamie's CFIDS, and now his knees hurt so much that he couldn't get up the stairs or walk without severe pain.

In our area, sudden joint pain, fatigue, and brain fog usually mean one thing: Lyme disease. By Monday, we were convinced of it. Jamie's severe crash symptoms had improved, but he could barely walk and was still moderately brain fogged.

I took him to see his pediatrician Monday, and she did a thorough exam. Her first suggestion was to test for Lyme, and, if the test was negative, wait another 6 weeks and test again (the antibody test is often negative for the first 6 weeks of infection). I pushed hard to start antibiotics right away (after having the blood drawn) because of the very high risks of leaving Lyme untreated in someone with CFIDS. Lyme is one of the known infections that can trigger CFIDS to start or trigger a severe relapse. She understands CFIDs and has been very supportive all along, so she agreed.

Jamie started 30 days of doxycycline on Tuesday. Within 24 hours, his knee pain began to abate, and his brain fog lifted dramatically. Even though I was pretty certain he had Lyme, I was still stunned by the quick change. His natural sparkle was back!

Meanwhile, my husband's been out of town all week, and we've had an exhausting itinerary of doctor's appointments, soccer, and chorus rehearsal. Oh, and we were getting a new roof put on the house, so it sounded like elephants were crawling on our roof - tough to nap! Jamie and I spent over 2 hours at the eye doctor's on Tuesday (he needs glasses). Anyway, I'm totally worn out.

This experience just emphasizes - once again - that we have to be our own (and our children's) strong advocates, trust our instincts, and be aggressive in seeking answers when we know something isn't right. It's hard work, but we can't let ourselves get lost in the mainstream medical system.

2 comments:

  1. Good grief what a week! Is it the lyphm nodes in the knee area that is cause the aching, I know I over did thing on the weekend and my knees and neck have been so sore, with flu like aches.

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  2. This experience just emphasizes - once again - that we have to be our own (and our children's) strong advocates, trust our instincts, and be aggressive in seeking answers when we know something isn't right. It's hard work, but we can't let ourselves get lost in the mainstream medical system.

    Oh, absolutely! I'm so glad Jamie has such a strong, assertive, knowledgeable mom! And that the antibiotics are working! :)

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