Daughter looks like Lyme but NOT

[therealbill]

Not sure what my daughter has. Sorry I picked the wrong topic.

Tested for Lyme, fit the bill X 2 and Western blot negative. Tested for LUPUS but negative. Diagnosed with Fribro initially but I didn't buyit.  She diagnoses like Fribro but she is short of breath and has chest pain. She is a 15 year old basketball player and very active. On the High School varsity team. All the sudden she complained about pain in the joints, rash on the arm and then pain moved to all joints, swollen ankles after playing, runs out of breath in a few minutes, dizzy and has been rushed to the ER. She has an enormous problem trying to sleep and has night sweats off and on. We have seen her Neurologist, her PED and keep testing and moving along. Lastest is CARDIO who found her heart initially to be good but ordered STRESS TESTING and scan especially concerned about lose of breath. Waiting to get tests done. She also has sever pain in the left chest ribs, under the ribs, and terrible pain in the lower back that literally puts her on the floor to try to relieve the pain.  I have a counsin with LUPUS and her brothers daughter has LUPUS (not active yet, but present).  She reads Lyme, Lupus and Fibro but I could swear its LYME. This all came on quickly, not a slow process. I even have a picture of the rash that moved up her arm. She lives in Maryland and thus, they have a high LYME rate. Her face also goes numb at times and worse, she has stabbing in her upper legs (thigh) sometimes.  Its a terrible mess trying to track down what is wrong. Any ideas ?  tests, anything to consider most welcome.

[babsesl]

Dizziness, poor sleep, night sweats, pain in ribs (that was one of the worst!), pain in the back, etc., I had them all and many more (probably 30 -40 symptoms).  It was lyme.  And I went through the same thing that your daughter is going through.  So did my daughter, husband and my dog.  Lyme tests are not all that accurate; a lot of false negatives.  And Igenex is also the lab that confirmed my (and my family's lyme).  But, we had to see a lot of doctors before finding the right one who basically knew what was wrong with us even before the labs came back.  I hope your daughter gets the help she needs.

[patsy10]

Again, ditto what jaksmom03 said.

[jaksmom03]

Most LLMDS do not except insurance!!! alot of money out of pocket so before going to one go to igenex dot com and call them and ask them to send you a lyme panel kit and a co infections kit and have your normal doc write the order to draw blood for these which is never a problem. spend your money here first with these tests. the tests like Eliza are worthless!!!! ask anyone this is the place to start! and if they come back positive then go to a LLMD so when you walk in there she can start treatment. Fibro is a cop out for I dont know whats wrong! Also ask for a tilt table test ASAP for heart rate and blood pressure, go to target and get a polar heart monitor put it on here and have her sit for 5 min and then stand up but dont walk just sit to stand position and watch what her heart rate does if it goes up over example 77 to 120+ this is called IST innapropriate sinus tachycardia and can be helped with a beta blocker and is from the lyme it come on 21 days from being bit and this is the case for me... but by changing my diet to organic I am now off my beta blocker and do not get out of breath anylonger but this is very important to address!

[patsy10]

Ditto what Nyxie said!

[patsy10]

Ditto what Nyxie said!

[Nyxie63]

Even those with an active lyme infection often test seronegative for lyme disease.  No test for lyme is accurate.

Best bet is to get her to a good LLMD (lyme literate medical doctor) for a clinical diagnosis.

You can go to "seeking a dr" on http://flash.lymenet.org/ubb/ultimatebb.php

Tell them the same story you posted here.  Folks there can recommend drs in your area.

Good luck to you and your daughter!