Beth Daley wrote the linked article on Lyme tests, reporting this breaking news:
Wait for iiiiiiiiit!
Not all Lyme disease tests are accurate!
Anyway, she mentioned the CDC’s statement a few months ago that said to not trust anyone’s Lyme tests but FDA tests. This could be a problem, however. Why? Because when you use this “loophole” for not being FDA passed (CLIA) sometimes the FDA was the one to determine you did not need such clearance or approval and the CLIA (Clinical Laboratory Improvement Amendments) was good enough.
The problem with Lyme tests isn’t any sort of sneaky, underhanded getting around being FDA approved. The problem with Lyme tests is the fact that the bugger that causes Lyme is sneaky and underhanded. It hides from tests. There are other species the current (even FDA) tests do not match and will not give a positive result no matter what.
I edited this because I wanted to condense it and note I am not yet doing the critique. They did a good one over at ILADS’ website (one of the blogs), and I was focusing on too many things over here to give it the time I wanted to.
One has to wonder why certain doctor folk would want to go an’ hide the truth from people. Many think it’s just money, and I agree that’s probably a large part of it. However, at this point there ain’t much actually hurtin their profits; come hell or high water, there’ll always be those who accept that Allen Steere or Gary Wormser is an expert on Lyme disease.
But the sheer ferocity that some of these “doctors” spew their feihua makes you wonder if that’s their end-all reward for the madness that this disease has become.
This quote by Barthold from Pamela Weintraub’s book “Cure Unknown” will persuade the biggest non-believer I reckon. While talkin about Lyme bacteria being able to persist despite treatment he states:
“But I do believe there are patients who are not completely cured of infection because it goes along with the biology of the spirochete and the biology of what antibiotics do. We have known this right from the beginning through our study of the mouse and other animals models of Lyme.”
If they’ve known a lot they aint been saying about this disease, what else ain’t they told us?
Sometimes I think they’re trying to distract us with all the game-playing.
So. I don’t think we’ll get very far unless we change the entire gorram name. Since there’s such a huge gripe between what is Lyme and what ain’t, why don’t we go with what the IDSA guidelines say: If you have a positive ELISA and then a positive western blot with all the “right” bands, then you have Lyme proper, i.e., Borrelia burgdorferi.
If not, then you have something else.
This somethin else we can call whatever the hell we want (since the IDSA guideline authors set a precedent for makin up rules as you go). Heck, we could name it Jayne Disease if we wanna.
You diagnose Jayne Disease the same way Burrascano explains you would diagnose chronic Lyme or Horowitz diagnoses … multithingy-bob.
Jayne Disease (JD) is even easier to remember since them medical words can be kinda tricky.
So if someone has clinically diagnosed Borrelia burgdorferi AND a co-infection: Jayne Disease!
If someone has all the signs of “Lyme” but only has Bb specific bands (heh) on their western blot, they have, you guessed it! Jayne Disease!
Heck, the research is already there. We just have to stop callin these other things Lyme because they ain’t Lyme. Right IDSA guideline authors?
They’d have no one left to argue with. They can just take their balls and go home while we get back to doin what we do best: Followin the science and makin patients better.
So how does THAT sit? Pretty cunning, don’t ya think?
This is a paper by Steere stating how Lyme is overdiagnosed.
We are about a year out of the CDC coming up with new estimates of 300,000 cases per year in the US of Lyme disease. Previously, they had stated about 30,000.
So I’m thinking maybe
1. They shouldn’t have put Steere in charge of anything regarding Lyme except maybe the rheumatologic signs.
2. They shouldn’t have accepted the guidelines the IDSA wrote (and were supposed to rewrite but didn’t yet).
Also, shouldn’t the CDC put out (about a year ago) a statement with that gross underestimation telling doctors to stop using tests as screening tools that they treat as 100% accurate?
Shouldn’t any doctor/provider who saw this news be smart enough to deduce that maybe tests are not quite so accurate?
Or is the next CDC shoe (or is that a flip-flop) that will drop be a picture of doctors overdiagnosing Lyme and that is why there is a 300,000 versus 30,000 leap.
Since they didn’t remove the tests or give any other advice with their statement about the 300,000, I’m guessing we better be ready for that.