Tuesday, March 8, 2011

"What's The Good Test," part 1

Symptom Checklist:   http://www.lymedisease.org/resources/pdf/Symptomchecklist%20burrascano.pdf   

yeah, it's all sounding familiar, right?

Well, there's a huge controversy around Lyme disease... like celiac, it can be over diagnosed, but, like celiac, it can be woefully underdiagnosed, you know? I know you know all about the GF stuff, the controversy, people saying "well, you're probably not _really_ having this issue, etc, when the GOOD test shows you are, not just the "stop eating it and see if it gets better" bit.

Ah, already, you are having the "loooovely" "good doctor/bad doctor" bit. I LOVE the ones who pat you on the head and tell you to just go take a nap, or lose weight, or whatever. So encouraging.

I know, the questions are huge after reading some of the stuff. I hope I can help answer them, lol. Most of the info I love is from Dr Burascano's position paper. If you google that and read it, you will have jsut about everything I know, lol. And, it's a great paper, so there's that. However, If you've having memory problems, then you might want to hand it over to your sweetie and let him read it, too, and discuss it.

The good test for Lyme is Not the standardized western blot, which is what most docs think it is. The ELISA, which is the first test the usually run, is vastly inaccurate after about six months of illness... I'm figuring you've gotten to that point, as desperation somewhat has set in, (not that you've lost hope, you've just been facing this long enough to feel the ARGH!). Meanwhile, the standard western blot, ie the CDC positive they want you to have, becomes elusive at about six months as well. If not impossible to begin with. The breakdown is this: about 25 years ago, there was a possibility of a vaccine against Lyme disease, and everybody got very excited. At that point, Lyme wasn't as badly widespread as it is now, and they thought it was isolated to the NE sector of the US... which it wasn't (dang ticks and deer they feed off of. They just don't pay attention to those big red boundary lines on maps. So stupid, won't stay put in Connecticut...I got infected in upstate SC, at girl's camp, about 22 years ago. so yeah.) In order to do the CDC trials for the vaccine, they needed clear-cut standards for testing. Lyme does not like clear-cut standards, and is not conducive to little happy boxes to tape it in. However, they didn't know that so much then (they being modern medicine, I guess, which is only just catching on to this problem Now....) and decided that since lots of people with Lyme tested positive with five bands infected on the DNA western blot test, they would make it, for the sake of testing a recommendation that that be a way to diagnose Lyme, so that a)people would know if the vaccine was working int he trials, and b)doctors would have it easier. However, they warned in the recommendations (notice- NOT diagnosis guidelines. ONLY recommendations.) that this Not be used to exclude diagnosis for persons who have symptoms, as Lyme is nebulous, etc. They warned to diagnose symptomatically.

The vaccine was a bust, but the recommendations were still on the books. in fact, the vaccine was shown to make it easier to get Lyme, possibly even creating the disease in the test subjects. But it was too late for the medical community... the chance of an easy diagnosis and clear standards were too pleasing.

Unfortunately, as soon as they stuck recommendations down that to have Lyme disease you needed to have a bulls eye rash (now found, less that 50% of patients have, or found, or saw the bulls eye rash), and you have the clear onset of symptoms (nope, not really, and some get them gradually, or get only some symptoms, or just weird ones. Which is why the commercials that say "depression hurts, "peeve me... I worry about all those people who think oh, I'm depressed and hurting, so I take a depression medicine that will make it better,' and then never find the reason behind the hurt...) AND most crucially, who have FIVE bands on the Western Blot, and if they have those five bands are CDC positive, and then can get treatment. Anyone else, no treatment ("you don't have this, no CDC positive.")

In the past 25 years, however, hat has been figured out thus far, boiled down, is this: you don't have to have five bands. It matters WHICH bands are positive. Most tests only show "positive" or "negative," but don't show the doctors which bands. Many labs never run more than a few Western Blots a year, and they can be harder to read, as well. Not only that, but some studies show that while many MEN who have Lyme disease, or those tested in the first six months to a year, have the necessary five bands, most women and children have only four bands positive, or even three, and therefore, after that six month window of illness (and, if it comes on gradually, that's hard to fit into) the western blot, CDC style, gets really inaccurate... about sixty percent accurate according to some studies done by Lyme disease organizations. Worse, in the past three years a little study came out form the IDSA which said "there's no such thing as chronic Lyme disease, nobody needs to be treated for long periods, three weeks to six weeks of antibiotics, amoxicillin, should do the trick." OH, my goodness... this was a MASSIVE scandal... all the people who suffer from chronic Lyme disease found themselves cut off from treatment, many doctors who treat Lyme exclusively, whether charlatans or not (and there are jokers, but a lot of good immunologists, too) were cut off from treating patients or lost ability to bill insurance, and hilarity ensued. This part happened about four years ago (about a year into my treatment, of course) and since then, the IDSA panel who made this "further recommendation" was shown to have massive problems- ten of the twelve researchers were actively researching FOR insurance companies, had taken bribes, etc. It was bad. But the problem stands, because as long as insurance doesn't want to pay for extended treatment, it doesn't have to... sort of. There are some ways around it, but it's expensive and really annoying.

To be cont...: 

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