Need your input on my daughter again...might be long sorry!

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ashleyf3
Regular Member


Date Joined Sep 2006
Total Posts : 364
   Posted 8/27/2009 1:52 PM (GMT -6)   
So, we had her tested through Igenex again (also did back in 2007) in May 2009 as she was not feeling well so before I started dragging her around to doctor after doctor (since four out of five us have Lyme in this house and she is the only one that doesn't) I had her tested again. Here are her results:
PCR all negative
IGM: 41: IND
IGG: 31: IND
41: ++

Her main symptoms that have continued to progressively get worse are:
vertigo type dizziness (use to be every now and then is now almost all the time)
nausea usually from the dizziness
headaches everyday
very weak (sometimes will have to lay down and feels like she can't even climb the stairs b/c legs are like "jello" she says)
exercise intolerance
heat intolerance (she get really dizzy and sick and weak when she is in the heat outside - not so much in shower)
circulation problems - her feet turn purple when she crosses her legs or has anything heavy resting on them
vision problems - will get tunnel vision, floaters, a blurred spot in one eye
fatigue - is always complaining she's tired
sometimes ringing in ears with the tunnel vision and dizziness
shortness of breath sometimes

So, took her to her cardiologist (she has MVP already) - he ran some test and diagnosed her with neurocardiogenic syncope (just without the fainting). Tried her on a couple of meds that didn't help. Primary has tried her on some salt tabs that are not helping. Primary just referred her to a pediatric neuro. Went there he said the general exam was okay but he thinks we should explore the Lyme disease more with four people in the house having it just seems odd that she doesn't. So, he wants us to see a Pediatric ID at Emory (one of the best hospitals in Georgia). I am nervous. You know how some of these docs are when it comes to Lyme.

He is also sending her for a balance/ear type test to evaluate all that kind of stuff and tons of blood work.

I just would like to hear your opinions I know that even Igenex doesn't catch all the cases of Lyme disease with their test, but my current ID doc said "with those results she doesn't have Lyme" and I am afraid this new doc we are going to will say the same thing. Praying for a miracle. Just want to know what's wrong with my baby girl! My son has also been suffering lately, so if praying we can find an amazing doc so I can change him over too - it would be an answered prayer!!!

Thanks everyone for your help - this is the first place I go when I need questions answered b/c you guys are better than any book or website. Can I just you guys with me to the appointment :-)

Blessings,
Leah

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 8/27/2009 2:01 PM (GMT -6)   
A lot of those symptoms sound like Lyme, but they could also be bart, etc. The shortness of breath along with some of the other symptoms suggests babesia. Has she been tested for that?

ashleyf3
Regular Member


Date Joined Sep 2006
Total Posts : 364
   Posted 8/27/2009 2:25 PM (GMT -6)   
I haven't had her tested for any co-infections as the doc that drew the labs for me to send off to Igenex (my ID doc) wasn't really willing to pursue the Lyme route with her after her test results came back. I am curious how "lyme literate" this next doctor will be. My own is not very, but I go to him b/c he was on my insurance, was able to get me my PICC line when I really needed it and is close. Desperate times call for desperate measures.
Thank you for your response.
Blessings to you and yours,
Leah

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 8/27/2009 3:14 PM (GMT -6)   
Most of my doctors weren't Lyme literate. None of them tested me for co-infections. I've been diagnosed with Lyme, babs, and bart by an LLMD, but I've only tested positive for babs.
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