Labcorp has published new testing protocols due to some new regulation by the FDC (who like to ruin all competent medical care). They state that will no longer run a stand-alone Western Blot test. They will only run a Western Blot if there is an equivocal or positive ELISA test performed first. At first look this is not that alarming, until you realize that the ELISA is a completely useless and inaccurate measure of whether or not someone had Lyme disease. ELISA misses Lyme Disease on average 50% of the time. I don't know about you, but to me that sounds like a useless test. I could just guess and would be accurate 50% of the time!
When requiring a highly inaccurate ELISA test and then required a "not quite as bad but still not accurate" Western Blot it's practically impossible to get a Lyme Diagnosis. 52% of Lyme Disease patients are negative on the ELISA test and positive on Western Blot. If it's required to have a positive on an ELISA before getting a Western Blot, these patients would be diagnosed incorrectly.
Canada actually has a health warning out about how the ELISA is known to be an inaccurate test and shouldn't be used for diagnosis.The general problem with both Lyme tests is that they are based on the patient’s antibody response to the New England strain of the causative bacteria, Borrelia burgdorferi. Unfortunately, according to recent research at Johns Hopkins, those tests can miss up to 60% of cases because they are not sensitive to other strains of Boreelia burgdorferi.
It doesn't take a genius to see this as problematic, so why are these tests still be used as diagnostic criteria? Probably because of pressure from the insurance companies. No positive on our awesomely inaccurate tests? Too bad, we won't pay for your treatment. A Lyme Disease diagnosis should be a clinical diagnosis by a competent doctor. I'm so mad about this I could scream.
This is truly scary. Insurance companies are so ridiculous!
ReplyDeleteEverytime one of my Neurologists leaves the practice and moves away I start all over with a new one. Just had another Lyme blood test along with a battery of others and of course it came back negative (I got Lyme in the late 1980's). The course of Doxycycline supposedly did it's job and back then (I was the first case my Rheumatologist had ever seen at that time) and there was no other treatment. I was told to just live with it. I'm still living with it..............not much real "living" going on in this body anymore but none-the-less I'm living with it to the best of my ability. I think I will refuse any more Lyme tests and stop wasting money. Much better to spend it on a vacation, new clothes, new hair-do or something to help me enjoy this imposed early retirement. Enjoy it now, it's later than you think!
ReplyDeleteIt's so ridiculous that people like you and me are told to just "live with it" and that there isn't a better option. It seems like there should be better treatment out there.
DeleteAre you FREAKING kidding me?! This is ridiculous. Like, BEYOND ridiculous. If it were cancer (a disease that people flock behind and put pressure on companies about), this would be absolutely unacceptable. So why is it okay for a disease that can cause lifelong misery, even death?! WHY IS THIS OKAY?!?!?!?! I am outraged. Seriously. If I had the energy to do something about it, why I'd… lol. And thus we find the crux of the dilemma-- those who are affected are too sick to do diddly about it, and those who aren't don't care. *sigh* Freakin' medical politics… it pisses me off.
ReplyDeleteI know! So often I wish people would care as much about Lyme disease as they do about cancer, but people don't care, until it happens to them or someone they care about. I have a hard time with all the constant cancer fundraisers, not that it's not a worthy cause, but why do we ignore so many other horrible illnesses?
DeleteThis is why most anyone who has Lyme (or has dealt with it) will tell you to go on your own to get tested independently. Yes, it costs more but in most areas insurance won't pay for the Western blot anyway. In my area I can't even get a doctor to test me for Lyme (despite living in the woods).
ReplyDeleteDoctors here won't test for Lyme either. I was lucky that someone recommended this doctor to me or I never would have been tested. I live in Houston, which has a huge amount of doctors and hospitals and there is only one doctor in the city who will even test for Lyme! It's mind boggling.
DeleteI guess I'm lucky my insurance has paid for the western blot in the past, but no more it looks like. Unfortunately, it you want insurance to pay for any treatment at all you have to have a positive test.
Uuggggggghhhhhh!
ReplyDelete