Hi Elizabeth,My daughter was bitten by three nymph deer ticks at the end of July '04. She was 3-1/2 yrs old at the time. I called our HMO the day I extracted the first tick. I would estimate that it had been attached for at least 48hrs. Probably longer. The HMO told me to "wait and see" (wrong!) if she came down with flu-like symptoms, a rash, etc.. 27 days later, at the site of the tick bite, appeared a EM rash. I got my daughter in to see her pediatrician that same day and she was clinically dx'd with Lyme Disease. The HMO pediatrician took out her red book and rx'd our daughter 21 days of amoxicillin. That's it. 21 days. Wrong again! She ordered an ELISA test at a HMO friendly lab which came back negative. No surprise there since she had probably only been infected for a month. Anyway, the ELISA test is a big joke ... you might know this already ... but if you don't, don't let any doctor get away with saying that your son doesn't have Lyme because his ELISA came back negative or any other test for that matter. Lyme is a clinical diagnosis - something I've had to beat into my head over and over and over again. And something the Lyme-illiterate docs should beat into their heads as well.
Approx. one week after stopping the amoxicillin, my daughter's EM rash reappeared. It took the HMO ped and the ID doc 18 days to get their act together and rx my daughter with 21 days of Ceftin. So, she had a break in tx of 18 days. Not good!
In the meantime, I found an LLMD in our area. We brought our daughter to see her and the LLMD wanted to extend the Ceftin tx for up to at least 6 weeks. While on the Ceftin, the LLMD had testing done for our daughter - a Western Blot and coinfection testing at IGeneX Labs. Fortunately, our HMO pediatrician agreed to extend the Ceftin tx to 6 weeks. When our daughter's test results came back, the LLMD knew that more antibiotics were needed and for an extended period of time. However, at the time (and possibly still), she hadn't had much experience treating children, so that is when we got in contact with Dr. J in CT. Dr J is the world's leading (only?) Lyme Literate pediatrician and I highly suggest you get in contact with him yourself.
Somewhere in there - when our local LLMD suggested she continue on antibiotics due to clinical dx and test results, our HMO refused to rx our daughter any more antibiotics. They claimed she was "cured". (wrong! wrong! wrong!) Okay, so as if we hadn't already paid enough money out of our own pockets, we now were totally on our own even though we faithfully pay our huge HMO bill every month. And what is really sad is that there are so many Lyme sufferers just like us. Insurance DENIED. Insurance DENIED. It really sucks, but that's the way it is.
So, it's been just shy of 6 months and our (now 4yr old) daughter is still on antibiotics with two LLMDs watching over her (local one and Dr J in CT). She is currently on Septra and Zithromax and has gotten a LOT better! We actually thought she was on the home stretch up until a little over a week ago whe she experienced another herx reaction. So, we're now set back again for another two months ... which, if successful ... will have been a total of approx. 8 months of antibiotic tx. Still, there's always the chance that she may herx again and we'll have to set the timer back another 2 months. You just never know with Lyme and coinfections. They are so unpredictable - so frustrating - so heartbreaking.
Believe me when I say to you that I know what you're going through. I know how much it is killing you inside to see your child suffering. The pain is immense and learning to cope with it is a whole other issue that you have to deal with while you're trying to find proper treatment for your son...fighting docs all the way...fighting everyone that gets in your way just to get your son the right tx. And I've said to myself a million times over, "Why her? Why couldn't it be me instead?!", just like you're probably saying to yourself right now about your son.
So, that is our story. I've shared this with you so that you know you're not alone. So that you know there are people here who will help you and your son every step of the way simply by asking for it. There are quite a few very *strong* moms on Lymenet that have watched their children suffer Lyme and coinfections for many years. Stories far worse than mine as you'll probably read yourself.
There IS help and there IS hope! Children's bodies tend to fight Lyme/coinfections much better than adults do and they have a tendency to bounce back relatively quickly in some cases. Still, you need to jump on this and jump on it as quickly as possible. My suggestion, if you can afford it, is to skip all the doctors whose minds are closed on the subject of Lyme Disease/coinfections. Skip over them as fast as you can and go straight to Dr. J.
Had I known back in July what I know now, I wouldn't have even bothered dealing with ANYone other than Dr. J. We've ended up having to pay nearly all costs out of our own pockets anyway, so why did I waste all of that precious time with doctors that don't know their...well, you know what I'm saying.
If you do decide to skip the lyme-illiterate doctor route and need some help in how to go about contacting Dr. J, please don't hesitate to email me. I've been where you are and I know all too well how maddening it is. How frustating. How it tends to eat you up inside. How you feel like you're in a boat way out in the middle of the ocean, all alone, with no one there to grab your hand and pull you to land.
Do I sound overly dramatic? Maybe so, but hey, that's the reality of it. And if you need a helping hand, there are many here on Lymenet who are more than willing to hold theirs out for you to grab onto.
Best of luck to you and your son. Hopefully his case will be an uncomplicated one like my daughter's, but brace yourself just the same. Better to be prepared for the battle than to turn up naked and defenseless.
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