SOOO SORRY. You did not need this—nor did the kids.
Good advice posted already. Your instincts trump anything these doctors can recall from their medical textbooks. Keep urging and sharing information about
lyme—they are clueless. It's OK to help them out. IF they do not budge—it's time for a new doc. You would fire a contractor who didn't know what he was doing and you would fire someone cutting your hear if she screwed up the color… doctors work for US, remember...
I hope that LabCorp is just drawing the labs and that they are being sent to Palo Alto in CA or to the NY lab. LabCorp doesn't do proper testing…
IF the results are negative, your doc is going to remain obstinate—but even if they turn up positive, the pediatrician is still not going to know how to treat her, so you can bide some time with the short duration of abx he MIGHT prescribe—but the key is to get to an LLMD—who will treat based on a clinical diagnosis and doesn't need a bunch of expensive tests (although insurance might in order to provide coverage). But seems like you already know that.
IF the results are negative, please consider retesting—but first try provoking a better and more accurate immune response by giving the kids olive leaf extract for 4 wks or so. My negative ELISA went to a positive WB after I provoked. Please share with the doc the reason these tests are falsely negative MOST of the time—plenty of info in the "New to Lyme?" thread—or you can just ask and one of us can provide a summary or point to websites that the doc can reference. IT's OK for him not to know everything about
lyme—but it is NOT OK for him to remain ignorant if you are sharing info.
Agree w/ T and rowing mom—about
the encephalitis and that this IS an emergency. Most LLMDs have a waiting list because people cancel all the time—try to get put at the front of it. Once I moved up 4 months by literally calling every day… Cry EMERGENCY, offer to bring both kids in for the same appt, keep calling… AND—one day when I could not get the LLMD's or nurse's attention through email or phone messages, I literally showed up at her office and waited until the nurse could talk to me for a few minutes. That's all it took—got my urgent question answered and didn't bother them anymore. This is a little different than trying to get your kids seen but they will likely respond to a desperate MOM. I've read some good, heart-warming series about
there heroism of parents. IMO, I think kids should always get priority with patient scheduling...
One thought about
the EM rash and the Bart lesions…
From what I've read—an EM rash can be atypical—meaning it doesn't ALWAYS have to look like the bull's-eye (I never had a lyme rash).
But, since taking a bunch of abx throughout 2013 (before I knew I had lyme), which stirred up the infections, I've had strange-looking lesions pop up all over. They show up on my shin, my ankle, lower back, chest and groin. They fade in and then slowly fade out after a few months. They don't itch and are not sore—the skin is raised and leathery and weird. LLMD feels they are likely Bartonella lesions—atypical of the "stretch-mark" type but due to Bart, nonetheless—she said Bart creates all sorts of weird skin things. I have noticed that they fade a lot quicker and don't appear as much when I'm on the Byron White A-Bart herbs.
Here are a few photos—these are in the faded stage—I've had these for over 4 months but they are on their way out:
photo 1 is about
1.5 inches across and is on my lower back—ignore the bluish bruise underneath it:s12.postimg.org/5dcirpy8d/IMG_1358.jpg
photo 2 —the two lesions are each about
the size of a dime and located just under my bra line—ignore the pinkish area at the top right corner—that's where my bra is rubbing the skin. s11.postimg.org/p2h5y0tb7/IMG_1355.jpg
Hope this helps—
Chronic late-stage lyme—likely infected in 2000; Clinically dx 3/2014 w/ Babesia, tested positive for Bartonella, CDC-positive for Borellia. Multiple viruses and GI/immune treated first; started AL-Complex in May; started A-Bart and A-Bab in July; have IV port installed and started on Rosephin.
Detox: Pinella, Burbur, Parsley, Milk thistle seed, Burdock root tinctures; japanese knotwee