I appreciate all these responses. They make total sense. I do not want to insist that I have something that I don't-- and WHO WANTS lyme anyway?? We just WANT a diagnosis, right??
THANK YOU SOJOURNER!
That's almost all I needed to hear! We are gettin sum edumacation here, aRn't we??
From everything I've looked at, a reactive band 39 does have meaning, maybe not to Quest. It means I have antibodies SPECIFIC TO Bb. Please correct me if I'm wrong.
I'm not bashing my new PCP just yet. (will call him PCP) We just didn't part very clearly. He had given me the name of a LLMD, Dr. D, who he knows personally, but who does not take insurance. Anyway BEFORE I picked up lab results, the Dr's Asst
told me, 'your Lyme was negative, diagnosis is hypothyroidism' (which I already knew). You will have to see Dr. D about
your Lyme.' She went on to say, 'So do you want to see Dr PCP about
your thyroid, or do you want to make an appt w/ Dr D?'
I called the PCP Nurse
this morning w/ my questions: 'Why is PCP referring me to Dr D if my Lyme results are negative? Is PCP going to call me in a script
for thyroid (fatigue is almost unbearable)? What do these other ABNORMAL test results mean?'
flipped. Assistant was NOT SUPPOSED to give me copies of my labs. She was to get me to come in and talk to PCP about
the results and thryoid med. In regards to Lyme question and Dr D, PCP wanted to go over that with me personally.
Because of what the Asst had said to me about
Lyme, I believe that PCP knows I need other/more tests. But he realizes that insurance may not cover them. That is my belief and hope.
So, I'm gonna keep researching this crappy little band 39. And I plan to get PCP to help me out. When I called my insurance Co. they said they would cover any lab work ordered by my Dr. I will find out from him if this is true. If he or Dr D can help me out w/ the Igenex, then I'll get that ordered. I have not seen a regular Dr in about
8 years. So this is progress and so far I like PCP, realizing that he may not be able to diagnose/treat Lyme if it presents. He is
open. He was
open the minute I mentioned Lyme. So that is positive.
Maybe he knows stuff about
my other tests that might lead to Lyme, or, as he said, maybe I have some other illness that needs diagnosing.
Although I am not half as sick as most of you, I hope that eventually my experiences will contribute something to some collective knowledge? Maybe this can help somebody?
As for all tests being unreliable, I agree to an extent, but common sense has to enter into it. I do not claim to have medical or clinical or lab knowledge of these bands, antibodies, etc. But Dr. Burr states that a reaction on band 39 is specific to the Bb. Altho that may not mean Lyme disease as you/we all know it, it MUST mean something. Maybe just exposure? I don't know of any reason why my 39, which is a 'major protein of Bb flagellin; specific for Bb', and as Dr. Burr. says is 'species specific' would not mean something about
Lyme and antibodies in me, specific to Lyme. Who knows, maybe I feel like sh-t because my body is fighting??
And if I ever learn that I do, in fact, have Lyme, and that good ole Quest only bothered looking at bands recommended in 1994, giving me a false negative, then someone besides ME is gonna have to pay!!
Post Edited (LymeUnknown) : 5/6/2009 6:09:25 PM (GMT-6)