Last May, my 6 year-old had two light red bulls-eye rashes on her thigh after a camping trip in Utah. Pediatrician dismissed it, but tested for lyme at my insistance. Doc said her book recommended WB but to wait 6 wks for antibodies to form. After 6 wks, the test was negative.
Daughter was pretty healthy before all this, but since has been sick a lot (strep, URI, etc.), lots of itching, blotchy skin, aches and pains, behavioral issues, and reactions to foods she never had before, etc. In Dec, a LL friend said it's probably unresolved lyme.
In late Nov, got amoxicillin for strep. She reacted REALLY bad with rash (raised inflammed bumps) and screaming from skin pain (IMO~~probable Herx). Benedryl Rx'd by doc made skin pain worse as did their recommended soak in baking soda bath. They dc'd the amoxicillin.
I mentioned lyme and at my friend's suggestion, asked for and got 6 wks of cefuroxime. Finished in mid Feb, but have since had sore thoat & cough twice, aches, pains, blotchy skin, reactions to food, worsened behavior, and now 103 degree fever for 2 days. I feel lyme is at the root of this, but not sure what to do next.
Pediatrician knows zip about lyme, but is willing to do anything we ask and will Rx any test or treatment we want if we can back it up. My friend has directed me to look at the Central Florida test that replaces the Bowen Q-Rib and the Igenix tests, but not sure what test(s) to get, or what treatment to embark on.
I hate to keep thinking it's lyme if it's not and the doc would also like some sort of positive test result before giving any more abx, if that's a direction we want/need to go. Any advice would be very much appreciated!
mddamus
[ 10. March 2007, 12:54 PM: Message edited by: mddamus ]
Posted by Lymetoo (Member # 743) on :
I'm very sorry your young daughter is feeling so ill! I agree that Lyme could be at the root of this, but I am not a dr!
Personally, I would stick to the Igenex test until the new test becomes more established....but who knows....the new test may be better??
I've read that strep and Lyme can go hand in hand. Maybe you could do a search here by clicking on the little word "search" in the upper portion of this page. Then type in "strep."
Well, you should start with IGeneX testing. Call them and they can send you a whole kit including their paperwork which your doctor can fill out and sign off on. Keep in mind that Lyme is a clinical diagnosis which can be confirmed by bloodwork but not ruled out by bloodwork. Your doctor can and should treat her based solely on the symptoms and history. I'd get the testing drawn and then start on abx immediately.
My LLMD runs the following tests (listed by IGeneX's codes): 188, 189, 200, 203 and 206. These will cost about $565 out of pocket, but sometimes insurance will reimburse you for part or all of it, especially if your ordering doctor is an in-network doctor.
You'll need a Lyme-literate MD, though. If you haven't already, post on the seeking a doctor forum with "need LLMD in ________ " listing where you live.
The idea is to get her on meds ASAP until you can get to someone who is experienced in treating Lyme.
Sorry you're here, but glad you have found this helpful group. I don't know where we'd be without them!
Posted by bettyg (Member # 6147) on :
welcome to this wonderful, educationnal/SUPPORT board.
i'm going to send you a private message, PM, with my 46 pages newbie links/advise.
fyi, only 9 children's LLMDS NATIONWIDE! almost all on EAST COAST! Posted by Lymetoo (Member # 743) on :
If you have trouble in affording the tests, then order #188 and #189.
That's around $200.
Posted by chiz (Member # 10301) on :
Hi mddamus
I am so sorry to hear about your daughter's illness. It must be such a worry for you. I empathise as my 9 year old son has lyme and has been on abx for 10 months now and is slowly getting better.
The key thing is that you suspect lyme and clearly have the persistance to get her tested for this. It's hard going against the advice of doctors but it sounds as if your pediatrician is open to suggestions even if not au fait about lyme. Better than being in denial.
I would recommend Igenex as a WB is the gold standard test in a less than perfect testing environment!
If you still get nowhere, consider travelling to see a lyme literate paediatrician. You cannot put a value on your daughter's health.
Good luck and cyber empathy Chiz
Posted by nikkib (Member # 10016) on :
Get your daughter to Dr J in CT! He is a GOD! He treats my 5 year old and 2 1/2 year old who both have congenital Lyme disease. He is the smartest Dr I know. He will do ALL of the testing! PM me if you need more info. Good luck. -Nikki
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