Hi all, I’m still taking a break from Facebook, but am just popping on quickly to give my take on the segment ‘Sunday Night’ just screened about Lyme. 1) The show failed to mention a serious conflict of interest – Dr Graves is the “spokesperson for Lyme Disease for the Royal College of Pathologists Australasia”, according to the RCPA’s own website. The RCPA have motivation to try and discredit claims of Australian Lyme patients – as they are not conducting world class pathology testing themselves, many patients who test negative here in Australia, test positive in superior labs such as Igenex in America and Infectolab in Germany. It’s a reasonable assumption therefore, that Dr Graves’ scepticism (and inability to offer an alternative explanation for patients’ experiences) could simply be a butt covering exercise. 2) Dr Graves suggested that patients were receiving positive results to blood tested by overseas labs, as the labs are businesses that will give whatever results you want as you are paying for them. Not only is this such a childishly simplistic explanation that it’s insulting, it is incorrect. The main overseas lab used by Aussie patients, Igenex, makes it very clear that Lyme should be diagnosed clinically (that is, by a doctor, based on symptoms), and that pathology is simply to assist in the diagnostic process where there is doubt - for example, if the trademark ‘bullseye’ rash is not present, as is the case in 31 out of 101 Aussie patients as recorded in the Lyme Disease Association of Australia’s 2012 patient survey. If you Google “Igenex Lyme is a clinical diagnosis”, you’ll get numerous results confirming this stance. 3) Rani said something along the lines of that the government’s Clinical Advisory Committee on Lyme Disease didn’t find Borrelia in a single tick. Ummm…the committee didn’t conduct any tests/research, so of course they didn’t find it! That wasn’t their task. The purpose of the committee was to look into the issue of Lyme disease in Australia, for the Federal Chief Medical Officer. A media statement from the Department of Health on the topic is available online (health.gov.au/lyme-disease), which includes these quotes: “The conclusive finding of the bacterial species that could cause a Lyme Disease-like syndrome in Australia has yet to be made. Such a finding would put beyond doubt the existence of Lyme Disease, or a Lyme disease-like syndrome in Australia. In the meantime, laboratory tests are used to see if patients are showing an immune response to the bacteria that could cause this infection. There are different approaches used by different laboratories in this process which leads to different diagnoses for the same patients. We are working to see if these approaches can be harmonised.” “Certainly there are quite a number of people in Australia who have been diagnosed with the disease by their treating doctors. Some of these patients have been ill for a long period of time and their therapy is complex and demanding. It is important for these people in particular that we find out as much about the disease as we can.” The first quote is significant as it shows the government is still open minded about the possibility of Lyme being locally acquired – and discrepancies in pathology testing. See why Dr Graves might be a bit defensive?! The second quote is significant as it puts into question the “all in their heads” theory. 4) Speaking of the Clinical Advisory Committee on Lyme Disease, whilst serving in his capacity as an “expert”, Dr Graves allowed a very poorly referenced RCPA ‘Position Statement’ on Lyme Disease (rcpa.edu.au/Library/College-Policies/Position-Statements/Diagnostic-Laboratory-testing-for-Borreliosis-Lyme) to be released, including the quote “Australian ticks are not thought to carry the Borrelia spp. that can cause Lyme Disease.” This was released BEFORE the committee had reached it’s conclusion, and without explanation as to why ANYTHING needed to be released at all. Why on earth would he do that? Surely the professional thing to do would be to say to anyone who happened to enquire, that a committee was underway, and would release a statement on it’s conclusion? Are you getting an idea of the character of this ‘man’ yet? And the lack of respect that Lyme patients are facing, in that he wasn’t asked to retract the statement or withdraw from the committee despite a clear bias? Oh, and it’s worth noting that the Lyme Disease Association of Australia released a far more detailed, referenced (and therefore, credible) response, which can be found here: lymedisease.org.au/wp-content/uploads/2014/06/Newsflash-Lyme-light-Newsletter09042014.pdf 5) A GP reported at the Karl McManus Foundation Tick Borne Diseases conference this year that a patient of his who had never left the country had a Borrelia PCR sequencing (basically DNA) result of 94% certainty from the Australian Genome Research Facility. This is significant as the AGRF has National Association of Testing Authorities accreditation…and those accreditation requirements are set by the RCPA. It’s not 100% certainty, sure, but it’s surely of some significance? OK, that’s the end of my thoughts on the subject. As I mentioned, I’m just logging on to post this – I haven’t looked at any of the notifications or PMs anyone has sent me, I’m sorry, I’m simply not up to it at present. Since my last post (during a bout of sensory overload), I’ve had a series of hopes dashed, which is very unfortunate given I’ve also recently entered by third year of unemployment, my income protection insurance payout has run out, the heat is fecking with my health (Aussie weather = mild hyperthermia?!) and I still have no sustained improvements. I’m now suffering from depression and need some time away from everything, including this God forsaken situation in which seriously ill patients are constantly called to defend themselves and their illness, when really the government should be defending it’s lack of action to us, given that Borrelia was first detected in Aussie mammals in the 1950s, and there’s been plenty of other significant research since, which can be found here: lymedisease.org.au/evidence-of-Borrelia-in-Australia/ Not a good environment for healing, I’m sure you’ll agree. Anyway, I’m planning to be offline for the rest of the year, and will be back onboard early in 2015. Merry Christmas and Happy New Year to all. PS For the record, yes, I have been aware of the German treatment for over a year, and I know people who have been. For a number of reasons, I don’t think at this stage it’s right for me, and nor do my doctors. For a start, I have a strong gut reaction against it, no matter how I try to ignore it. I think this is because although I’ve ceased to have Herxheimer (bacterial die off) reactions, my symptoms remain, which may indicate another illness is also involved, and preventing lasting improvement. Amongst other things, I have an MRI scan booked on Wed to see if the doctors can identify whether the damage caused to my brain (already identified in a SPECT scan 2 yrs ago) is caused by Lyme, mould issues or both. Wish me luck. PPS I’ve been told before that my posts are sometimes depressing – whilst I hope I haven’t depressed you, I make no apologies for sharing what I do. Facebook is about sharing details of your life, and sometimes life has shitty parts. This is one of them.
Posted on: Sun, 23 Nov 2014 09:41:57 +0000
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