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Why is Australia so behind the rest of the world in tests and immune modulators??

Discussion in 'General Treatment' started by Tulip, Jun 26, 2011.

  1. Tulip

    Tulip Guest

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    Bit of a vent!!

    Why is it that here in oz we are stuck in the dark ages with testing and meds??, you can't get mitochondrial testing done here, the mycoplasma tests are crap, nk cell can only be done in one or two places in the entire country, the same with hhv6, if at all (which my doctor has never heard of) and the list goes on.

    The immune modulator naltrexone has amazing reviews for all serious diseases yet here in oz it's only given to heroin addicts and "others" at the doctors discretion, but most doctors refuse to prescribe it. I have found one but he is 3 hrs away from me and is too hard to get to!. I can't afford the other immune modulators avail from overseas, so what is one to do?.

    Arrgghhh
  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi Tulip, I just recently got a script for LDN in Australia - low dose, not sustained release. I am outside of Brisbane, but have to order the LDN from Adelaide. I hope to do that this week. I am now three hours from my ME/CFS doc, and can only go back to him because Heapsreal gives me a lift - we have the same doctor. This is because I am almost housebound and I need three buses to get to my doc.

    The problem with Aussie docs is they appear to be even more isolated from research than most. The second problem is that the HIC jumps all over doctors who think outside the box - the emphasis in Aus is on standardized medicine - do something nonstandard, claim on medicare, and its insurance fraud. You then get prosecuted. This happened to a CFS doctor of mine, despite a 60% treatment success rate.

    Bye,
    Alex
  3. Enid

    Enid Senior Member

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    Tulip and Alex - exactly the same here too sadly. We are so closely related I guess we've exported the old institutional think of establishment controls. Many cousins in Oz more than capable of thinking for themselves so hope your gov and medical establishment will see sense soon and certainly not follow the ME/CFS model here.
  4. Tulip

    Tulip Guest

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    Hi Alex,

    Congrats on the script! :victory: You can get it from a place in Newcastle NSW as well if you are interested their details are: Visionary Health Compounding Chemist, 136 Beaumont Sreet, Hamilton NSW 2303. Phone 02 49695081.

    That's kind of what I meant we are behind on so much, my gp and all the specialists I have seen are not told a thing about M.E. and it's so frustrating. I am going to ask my gp about naltrexone tomorrow but I know she will say no due to the fear of getting into trouble. And I understand about the bus thing, that's why this specialist is out of the question for me.
  5. Tulip

    Tulip Guest

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    Lets hope things change for both countries.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i buy my antivirals overseas as they arent covered by the PBS, so if u buy them from aus they cost a fortune. HHV6 testing u should be able to get done at any major hospital while getting your blood taken at any pathology place as they should send it on, the problem arise with viral testing is that they dont give titre levels so hard to tell if viruses are reactivating, most docs will just say its an old infection but really they cant tell if its an old infection or it has reactivated. lymphocyte sub set test can be a guide to these viruses possibly reactivating, but as Alex has said docs arent switched on to these things and also are discouraged from alot of this sort of testing, maybe because it will show some type of infection/immune related stuff going on and they wont cover this treatment and go's against their psychological causes of cfs, proof that their wrong about cfs being psychological.

    cheers!!!
  7. WillowJ

    WillowJ Senior Member

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    It's not just Australia. I had to fly halfway across the country to get any decent testing, then when he said "Lyme" (as well as ME/CFS, which predated the Lyme) I was able to find a Lyme doc close to home, who could also do testing, but he doesn't take any insurance, and some of the testing he orders is only done at the naturopathic college (an hour away by car) which also doesn't take insurance. My parents are generously paying right now, but due to some complications not of their making, that situation probably won't last very long.

    The few doctors in my area who "believe in" "CFS" either think it's a variety of FM which causes more tiredness (and, if you're lucky, more exercise intolerance) than FM but have no idea how debilitating ME/CFS is or that there are immune problems, etc., or they think it's some real and debilitating disease or other which isn't being researched (for some inexplicable reason) and therefore has no tests and no treatments. Or that CDC is working on it and will let them know whenever there are better tests and better treatments. (!)

    Otherwise, they think it's a form of hypochondriosis or a functional disorder and these, if they are specialists, will literally fire you from being their patient.

    My sympathetic GP's have expressed interest in doing testing, but no matter how much info I give them, they've never ordered any tests or anything. Maybe the new one is still waiting for my previous records, tho.
  8. taniaaust1

    taniaaust1 Senior Member

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    I'll join you in that gripe. It bugs me watching the ones in America get the tests we cant get in Australia.. we'd have to fly to America to get them.... why they dont do the same tests here?. Some Aussies have flown overseas to get them. We are backwards in that area, thou we are good here at what our researchers tend to research CFS wise. (Its like a Aussie ME/CFS researcher recently said.. the doctors here are out of touch with what the researchers are finding)

    My CFS specialist was telling me the other day about his lack of insurance hence he isnt meant to prescribe drugs. If I understood him correctly, insurance is a lot more for someone who is practicing preventative medicine then regular med. (im not 100% sure I understood his words correctly but that is how I took what he was saying about the insurance he refuses to take out due to it and the fact he's semi retired).

    The psych. view I havent found playing a big role here (as it does it places like England) but more so the fact that our doctors want proven evidence and want things to be peer accepted before they prescribe anything. They dont like doing anything outside the box (thou in the other fields of medicine here they commonly do go outside the box, so it does seen to be a bias towards ME).

    My specialist was telling me the other week that things arent accepted here until they've done Australian studies on them.. and approved them from Aust. studies.
    (So things which are easy to get in America or england and researched there.. often cant be gotten here)
    ......

    Alex.. funny that you said you are having to get your LDN interstate from Adelaide as Im in Sth Australia (live only 40mins from Adelaide) and havent come across anyone in Sth Australia prescribing it for us.
  9. TinyT

    TinyT Senior Member

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    I think you've all summed it up well but I AGREE!!!!!!!

    I do think its disappointing that we have some great research that is being done & has been done, and yet its not used in clinical practice- e.g. testing etc.

    I found it annoying the more I find out about tests/treatments etc and then see 'oh yeah, not available in Australia'.

    Tania- I think its stupid that they wont accept studies until they've done their own here? We dont have the research budgets & resources that the US does (although they dont use hardly any for ME/CFS) so we cant expect to replicate every study!

    I also see the same doc as heapsreal & alex : )

    I have also used that compounding chemist in Newcastle and they are really good with posting stuff interstate (since I'm now in Nth Qld but was in Newcastle).

    I'm also really interested in giving LDN a go eventually.......

    Good luck with getting a script Tulip, the first time my ME/CFS doc tried to order a hhv6 test the lab did a HIV test instead!!!!
  10. Tulip

    Tulip Guest

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    Willow I know other countries aren't perfect either.

    The insurance thing for doctors probably explains why 99% of the ones that do think out of the box charge an arm and a couple of legs to see them.

    LOL at the HIV test TinyT, it shows how rare the test is!. I don't have a major hospital near me, so not sure if i'm going to bother pursuing it.

    You all see Dr Deed is that right?, I got his details a while ago and have been meaning to contact him to see if he can do a phone app. I am assuming he is a GP?. Does anyone know if he has an email address?. I have not found any ME specialists in NSW that are actually clued into what it really is. The specialist that prescribes low dose naltrexone in newcastle is an immunologist and not an ME specialist and from what I have read he is an arrogant pig.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Tulip,

    I believe dr deed does do phone consults and have heard that some people go and see him in person for their initial consult. If u can tolerate one busy day, flights to bris are quite cheap and worth it for your initial visit. Its probably good to keep another gp on side for normal scripts like sleeping meds etc and see dr d for treatments outside the box like LDN and antivirals etc, plus he will/can order all the infectious and immune tests needed. He is classes as a GP with special interest in cfs, autism, diabetes and natural medicines as well and probably a few more things. He's just an allround nice guy, not arrogant like alot of other docs and is keeping an eye on the latest cfs stuff like xmrv, if u mentioned xmrv to a normal GP they would probably think you were refering to a model of a car, lol. Mediwell medical centre where he works ph number is 07 34217488, they should be able to direct you from there on what steps to take.

    cheers!!!
  12. Tulip

    Tulip Guest

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    Thanks Heapsreal,

    He sounds really good, it would be fantastic to talk to a doctor that actually knows something about this illness and to get treatment of some kind!. I have given up on my gp for anything ME/CFS related as of yesterday, she is convinced she can "cure" it with graded exercise and diet :rolleyes:
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi tulip,

    I dont know if u will get a cure but u will get a doc who believes u and can diagnose u with cfs and validate the way u feel. He can help with treating symptoms and help improve your level of function and suffering and of cause try a few things outside the box.

    good luck,
    cheers!!!
  14. TinyT

    TinyT Senior Member

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    Australia
    I think I've actually seen that immunologist you are talking about Tulip. He is more a clinical allergist not an immunologist per se. I only saw him twice when I lived there for 6 months, he was a bit weird, made me feel slightly uncomfortable.

    I did see Dr Deed in person originally (as I'm not in Brisbane) and now have phone appt/checkups. He can post out any scripts or blood test forms too.
  15. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    My psych practically shoved an LDN script down my throat. He has been very good to me - never once doubted that it was't biological. He got me to do an intelligence test right at the beginning which convinced him something was seriously wrong.

    I am not convinced about LDN. So I am sitting on the script - also cost is an issue. But would love to hear how it goes for you Alex. Could you also let me know how much it is going to cost you?

    Also may have to get onto Deed. My psych will retire soon and I don't want to be left up the creek without a paddle. I live in Brisbane, Hawthorne.

    I am coping on just sleeping meds and a few vitamins. Would love to ease OI symptoms.
  16. taniaaust1

    taniaaust1 Senior Member

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    Same here.. my current CFS specialist isnt even aware of ME having OI issues.
    Im really thou going to be stuffed once he fully retires (he's in his 70s so Im concerned he may not be around much longer).
  17. Francelle

    Francelle Senior Member

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    Perhaps I read this wrong but it gave me a chuckle Rusty!
  18. alex3619

    alex3619 Senior Member

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    Hi Justy, I have yet to order the prescription. My best guess is it will take me a month or two to see any effects, if not several. However, later in the year you might like to pm me - by that time I should have a sense of benefit or failure. Bye, Alex
  19. Tulip

    Tulip Guest

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    I don't expect a cure but "real" treatment would be great. And thanks :Retro smile:
  20. Tulip

    Tulip Guest

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    Hi last name begins with C and my gut instinct is he would be a waste of time to see.

    That's good Dr Deed can and will post out scripts etc.

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