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Our experience with kids and lyme disease in a tick endemic area (Massachusetts)

If you live in Massachusetts or any of the other tick-endemic areas in this world, nightly tick-checks just have to be a part of your bedtime routine. Brush teeth, check for ticks.

But even that will not ensure that you or your kids don’t end up with Lyme, because guess what… in some large % of cases (including our son) one never finds a tick or a bulls-eye rash.

My theory is that the statistics for numbers of cases is still low, even after the CDC upped them by 10x in August 2013. And that also the cases are going to (obviously) skewed towards people who are active outdoors people during the non-winter months. It has been my experience that pretty much everyone I speak to not only either themselves or someone they know had a deer-tick on them, but also knows someone that has been treated for Lyme! That’s pretty scary.

Our kiddo’s Lyme symptoms:

1 – Low-grade fever (his was never higher than about 102F and was often 98.6F in the AM and spiking a bit to 100 or 101 in evening). And no other flu-symptoms. Active happy jumping around kid. Only felt lousy enough to give ibuprofen for like 2 days but the late afternoon/evening fevers kept coming.
2 – Complained a bit of head hurting when jumping up and down
3 – He noted his knees hurt a little running around one day
4 – And then finally on the day we went to the doc he did start to have a rash or 2… but they we’re those resolved within 1-2 days of starting antibiotics. (amoxicillin since he’s under 8) (I think he experienced a flare as well, during the day he began treatment as explained in BURRASCANO’s guide below. It also discusses all of the above.)

Anyway, that was enough to start treatment right away and fingers crossed that he doesn’t experience “Chronic Lyme” symptoms or as CDC calls it, Post-treatment Lyme disease syndrome (PTLDS).

The key is to advocate for yourself and read the PDF linked here:
ADVANCED TOPICS IN LYME DISEASE

DIAGNOSTIC HINTS AND TREATMENT
GUIDELINES FOR LYME AND OTHER
TICK BORNE ILLNESSES

Sixteenth Edition
Copyright October, 2008

JOSEPH J. BURRASCANO JR., M.D.

In which you will learn that the most important thing is to begin initial treatment with AT LEAST a 6-week course of the appropriate antibiotic (and dosage) and adjust according to evidence of any flare-ups which happen in intervals.

Also excellent: the IDSA guidelines from 2006
http://www.idsociety.org/uploadedfiles/idsa/guidelines-patient_care/pdf_library/lyme%20disease.pdf
“Antibiotics recommended for children
are amoxicillin (50 mg/kg per day in 3 divided doses [maximum
of 500 mg per dose]), cefuroxime axetil (30 mg/kg per day in
2 divided doses [maximum of 500 mg per dose]), or, if the patient is 8 years of age, doxycycline (4 mg/kg per day in 2
divided doses [maximum of 100 mg per dose]) (A-II).

(and the 2010 review of these 2010 guidelines)

And for a great piece of investigative journalism on the topic as you wait and hope and pray that your Lyme situation resolves completely with antibiotics (and rest, exercise, and nutrition), this is it:

Cure Unknown (Revised Edition): Inside the Lyme Epidemic, by Pamela Weintraub

and online:

THE LYME WARS
The Lyme-disease infection rate is growing. So is the battle over how to treat it.
BY MICHAEL SPECTER
JULY 1, 2013, The New Yorker

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