The sentenced that appalled me the most "As with any diagnostic test, a positive result is more likely to be a false-positive if the test is performed on a person with a low likelihood of having the condition, such as testing for Lyme disease in Australia."
Yeah, the idiotic denial makes no sense. To assume that the CDC two tier testing process is useful anywhere else is also idiotic. That criteria was developed using New England based Borrelia Burgdorferi patients. It has never been tested or validated on patients with varying genetic strains or other species for that matter.
This testing is estimated to miss about half of actual Lyme patients in the US. I am sure it misses many more than that outside the US. It has been an unmitigated disaster for Lyme patients that this criteria has become a diagnostic absolute.
Have you seen Dr. Peter Mayne's paper from Dec. 2011? He printed specific IGeneX results from about 28-30 patients and very few were CDC positive. He did mention that he had two who were negative on the ELISA, but positive on the WB (which means they're still not CDC positive). I wasn't CDC positive either.
I did have IgM bands 18 and 31 which appear quite a few times in his sample. IGeneX says they see band 31 more often in patients with neuroborreliosis, which is all you have in Oz. Of course Band 31 is ignored in the CDC criteria, even though it is so Lyme specific, it was used in developing the (failed) Lyme vaccine.
My hope is that Australia sets up its own testing protocol, ignoring whatever the CDC uses. I hope and pray that whatever they choose errs on the side of the patient, instead of the cruel and dismissive approach used here in the US to dismiss a patient regardless of symptoms and history.
You say above: "IGeneX says they see band 31 more often in patients with neuroborreliosis, which is all you have in Oz."
Given the rates at which people and their pets travel these days (and perhaps even livestock -- horses at least?), and the utter lack of quarantine as used to happen in the olden days, I would be cautious about flat statements that "We don't have [X] here."
You know already that's the error that MDs make here in the US: "We don't have Lyme in [Texas]" -- just as in the early days of AIDS, the CDC was up in front of the TV cameras stating flatly that one could not get AIDS unless also gay or Haitian.
It doesn't take much for an infected person to travel from country A to country B, to then be bitten by a local insect (or have an infected tick burrowed into the lining of suitcase), which then hops out into a naive population and starts a medical wildfire. Ellis Island-style quarantine is a thing of the past, as are (for the most part) medical exams for those traveling into a country, legally or illegally. I've been to a bunch of countries off the beaten path, and the authorities didn't care a whit about what infections I might have, but did sometimes ask if I was bringing in certain food products, to avoid importing that sort of epidemic. Maybe they just don't quiz Westerners to avoid giving offense to tourists, but the ticks -- and the Lyme bacteria -- don't care how they exploit their bio-niche. A dog is as good as a cow is as good as a grandma from Chicago.
If the docs aren't looking for an ailment and don't believe it is present in their own locality, then ipso facto, the ailment does not exist there. Full stop. So there might be things in Australia that Australia just hasn't yet identified. And we know how aggressive Lyme is at spreading ....
I was just quoting Dr. Mayne, who has observed that he has not seen arthritis so far in Australian acquired Lyme. He has had patients with arthritis who got it overseas.
So, I should have included the words "so far" at the end of my statement. :)
Australia has very strict rules on animals coming in or out of the country, and being a big island, they can enforce it more easily than most others. Some activists and doctors believe that their versions of Lyme were brought in by migrating seabirds carrying infections (and infected ticks) from Europe and Asia.
They have identified three separate species so far: Borrelia Burgdorferi (with a European-like presentation), Borrelia Bavariensis, and Borellia Garinii. There may also be Borrelia Valaisiana. All variations have a a wide array of neurological symptoms and fewer musculoskeletal symptoms than North American patients. (I haven't had musculoskeletal symptoms.)
My docs in the hospital didn't believe I had Lyme because I tested negative, but also because my presentation just didn't seem like Lyme to them (all neuro & gut). But when I read Dr. Mayne's paper, he described my presentation very well. It was reassuring to me to learn that I am not a weird aberration...I am very consistent with Australian neuroborreliosis.
And the few doctors who are actually taking an interest in tick borne diseases there have already figured out that they have most of the coinfections the US has, including the more unusual ones like Mycoplasma and Morgellon's. Dr. Mayne reports that about half of his patients have one or more coinfections.
Amazing! I knew there were differences but hadn't focussed on HOW different they each are. I'm starting to feel like a walking cesspool .... ha.
... And no wonder the docs are confused. It's accepted that there are various (annual) strains of flu virus, but Lyme gets no credit for being just as wily and also more elusive. Think how much progress will be made when ILADS finally wins over IDSA -- it will be exciting times. Given how much progress has been made so fast (relatively speaking) in AIDS, for example, then with a similar level of focus and enthusiasm, Lyme won't stand a chance.
Back to you original question about how to get the Australian government to get up to speed on Lyme -- Peter Mayne's website (drmayne [dot] com) has a lot of links that you have doubtless already seen, and there may be some references there to people and organizations who are working the legislative side.
The US has the same problem it seems Australia does: the troglodyte IDSA is better connected in the political power structure here, at least for now. I don't know anything about how ILADS' approach to the political system is conducted. Perhaps it's intentionally kept quiet to avoid drawing attention from the IDSA/government types.
Interestingly, Mayne's website has a piece by a German Lyme association laying out their disagreements with the IDSA-type approach. Whether the German group has any legislative approaches that might be useful, I don't know.
I suspect that the UK National Health scheme is the heavy thumb on the scale when it comes to Lyme, and it is not like in the US where it's competing independent voluntary medical associations (IDSA vs ILADS) where the fight is in the open.
As the US moves toward Obamacare, however, I fully expect the IDSA to be first in line to ensure that its standards, however inadequate and wrong, will be the ones adopted by the government apparatchiks, in parallel to the way medicine is practiced in the UK. (We have distant family in the UK, and the resigned patience with which the Brits suffer while awaiting what often turns out to be inept medical care is appalling.)
Sorry not to be more help, but do check Mayne's site if you haven't already -- it may have some good leads for you to find the loyal opposition.
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