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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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To the Aussies

Discussion in 'General ME/CFS News' started by taniaaust1, Aug 13, 2010.

  1. Melodie

    Melodie Guest

    Yeh Alex doctors do have to be careful not to be fined. I read last year of one who treats ME etc being fined for excessive testing I think it was. Cant find it now.
  2. alex3619

    alex3619 Senior Member

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    Hi Melodie,

    Very cool. One advantage to living in Australia I guess, pity we may have to wait a good while for a test to be available.

    thanks,
    Alex

  3. taniaaust1

    taniaaust1 Senior Member

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    okay.. I have never run into that issue as my doctors REFUSE to give me any treatments for CFS/ME anyway as "they arent proven" (except one who didnt mind breeching the system). so what ive done, i do alone.. I went onto B12 injections without no doctor (in Aust. we dont need script for them and can get them from a chemist.. just act like you know what you are doing when you ask for them, they are kept behind the counter), i take xanax.. without no doctor (another person's meds). I do whatever i can to treat myself as i dont get help throu them. I cant get any anti-anxiety drugs, I cant get any sleep meds... i cant get anything from my doctors ..
  4. taniaaust1

    taniaaust1 Senior Member

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    Wow.. thanks.. i would of never thought of researching that number to find out exactly what it meant. This is very good news to have confirmed :)
  5. taniaaust1

    taniaaust1 Senior Member

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    Was this an australian case??

    If it was and we can find it again.. maybe we can add the info to the Aussie wiki page under a medical/doctors issue subtitle. Its good to understand how our whole medical system is working when it comes to us. I really had no idea about these things.
  6. alex3619

    alex3619 Senior Member

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    Hi

    What about children with CFS taken from their parents and institutionalized? We need to research that at some point, I know it happens in Australia.

    Bye
    Alex
  7. taniaaust1

    taniaaust1 Senior Member

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    Yes that has happened in Australia and there has been at least one highly publicized case over that. That needs to go onto the wiki too. (if anyone knows the links to an Aussie case.. please post it)
  8. taniaaust1

    taniaaust1 Senior Member

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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thats sad Tania that u cant find a helpful doctor, atleast one who can help treat your symptoms which is what most do. There are a few tests that can be done to help prove involvement of the immune system which a gp could order but they know little about. If your ever in brisbane and want contact with a doctor who can help let me know, he does have about a 2 month waiting period though. No miracles but will run all the tests for different infections and immune system stuff. But we all treat ourselves to a certain degree.

    cheers!!!
  10. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Alex, who was your doctor? Big woman. Can't remember her name... Mary something? Were you part of the Robbins study?
  11. taniaaust1

    taniaaust1 Senior Member

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    Its been very frustrating for me as im very aware of the tests of abnormalities which are in CFS/ME but have only once been able to get a doctor to run one of them (which did come out being abnormal, that one being a 24 hr cortisol urine test). The other heaps and heaps of tests.. have all been doctors saying i need tests to rule things out (or to do with things not to do with the CFS/ME), all tests which ive had done over and over before and i KNEW those ones dont show anything (well other then D deficiency) as i do have CFS/ME.

    I had things like mono, CMV, toxoplasmosis and a few other things i know i've had which show up on tests... but are told one cant tell reactivations from those tests.
    I havent managed to get anything like a NK function test... and thou a doctor in past diagnosed the POTS and ive clearly got that, my current doctor wont believe it as i havent had a tilt table test (which i cant have cause my doctors wont send me for CFS/ME tests).
    Thanks for that offer.. i will certainly keep it in mind. Im interested in who the doctor is?? can you say here or pm me?

    (the only tests i've had done for CFS/ME were during a CFS study.. and cause it was part of a study.. my doctors dont believe it when i tell them what the outcome of those tests were).
  12. alex3619

    alex3619 Senior Member

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    Hi RustyJ

    At the time my doctor was Dr Andriya Martinovic. Later my doctor was Dr. Deed, but I haven't seen him for the last two years due to worsening health - I really don't have a doctor a the moment. I was not part of the Robbins study. The last medical study I was part of was looking at cortisol binding globulin.

    Bye
    Alex

  13. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Alex, at one time I was seeing Dr Andriya Martinovic. Bit of a drive, so stopped. Long time ago. Seems more than one doctor has been struck off in Brisbane for trying to help CFS patients.
  14. alex3619

    alex3619 Senior Member

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    Hi RustyJ, I talked to Dr. Martinovic some months ago, although it might have been last year. He is still practicing, but had to sign an agreement that he cannot treat CFS, although I think once treatment is standardized that he will be back. Bye, Alex
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi Tania, one test i had that clearly showed my immune system had something going on was a lymphocyte sub set test which i think they use alot in aids patients, this test lead my dr to believe past viruses i had were reactivating like cmv and ebv although ebv seems to pop up sometime and others it doesnt, ebv a mistery for me . Nk test is through bond uni study, but of late i have found that most labs do a lymphocyte function test which i think includes nk cells, this test has to be booked in as the test has to be done within 24hrs of the blood being drawn.
    I just think its terrible how u cant find a doctor to help with prescriptions, i would be alot worse if this was the case, i need my sleep meds plus antivirals have helped alot too. Yes my dr is dr deed mentioned by others in brisbane who have seen him.

    cheers!!!
  16. susan

    susan Senior Member

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    I am in the Bond study and it is going for 2 yrs. It appears that for 2/3 of our blood test results we are like the majority of the population. However the last 3 tests all show the same low levels incl. Natural killer cells. I have just completed the 2nd round of tests and yesterday I was told they will be posted to me shortly. I joined the study hoping I would be given the option of having the XMRV test....dont know now whether that is happening. I know the Sonia Marshall who is in charge of the study is in touch with Nancy Klimas who was to visit this year about this time...dont know if it is happening. I am at the stage where even vitamins upset my liver, let alone trying to take a drug for the cure.......Homoepathy is my only way out now.
  17. Melodie

    Melodie Guest

    Just wondered about testing for NKC testing - the bond study measured the distribution of two phenotypes:"

    "Altered distribution of NK phenotypes
    The total number of NK phenotypes specifically CD56brightCD16- and
    CD56dimCD16+NK cells were determined by flow cytometry. CD56brightCD16- NK
    lymphocytes were significantly reduced
    (P<0.05) in CFS patients (4% 0.5) compared
    to controls (10% 2.1) (Figure 2). CD56dimCD16+ did not statistically differ between
    groups,
    as shown in Figure 2."

    When measuring nkc cytotoxicity I dont think they separated the phenotypes but explained how the reduced CD56brightCD16- could affect NK cytotoxicity.

    "Given the paucity in CD56brightCD16- NK cells among CFS patients in this study
    and their role in immunoregulation and activation, reduced CD56brightCD16- NK cell
    numbers may be important in the pathomechanism of CFS, a disorder shown to be
    characterised by decreases in NK cytotoxic activity. Although changes in NK cell
    makers have been previously reported, a mechanism underlying diminishing NK cell
    markers and phenotypes has not yet been established. This mechanism may also involve
    changes at the genomic level which results in deficient cytokine and chemokine receptor
    expression. For example, alterations in RNA expression levels for CD56brightCD16- NK
    receptors has been demonstrated in patients with Autism Spectrum Disorder where
    cytotoxic activity and NK cell numbers were also decreased when NK cells were stimulated by a pathogen [53]. Exposure to pathogens in the presence of differential
    expression of certain NK cytokine and chemokine receptor genes may trigger a decline
    in CD56brightCD16- NK cells and NK cytotoxicity in CFS."

    Dont know if our normal pathology labs test for the two phenotypes.

    There is a company that tests saliva - bioavailable hormones.

    http://www.nlabs.com.au/

    You buy the tubes and then post the saliva samples. I dont know how accurate it is given its in the post for a few days. I was told testosterone is less stable than the others. Does anyone know if this is worth the money if you cant get a gp to order the saliva tests. They didnt have thyroid hormones or aldosterone the last time i looked, has anyone heard of saliva tests for these?
  18. Melodie

    Melodie Guest

    Tania that doctor who was fined was an Australian doctor, he treated not just mecfs but other serious conditions. Am not sure he would want any publicity about it so I wouldnt put it up on the wiki. just mho.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    my nk test by bond showed poor nk cell function, natural killer bright cell was below range(4.32). In my previous lymphocyte subset tests (had several)done by my gp my total lymphocytes have always been elevated, my cd56 have always been in range, but cd3, cd4 and cd8 have been above range. I wonder if these other lymphocytes are elevated and taking up the slack for the poor natural killer cell function. These elevated lymphocyte numbers did come down with the antiviral famvir with improvement in symptoms and when i had my first test with bond i was feeling quite well for the last few months. When i had the second test i was back to ordinary which i think was because i changed antivirals to valtrex for economic reasons, so i will be interested to see if my nk bright cell has changed, since the test i have gone back to famvir , my original antiviral and am starting to feel better again.
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi melodie,
    do u know if theres a difference between the nk cell tests bond uni are doing and the lymphocyte function test that can be done at other labs by your doctors request eg http://www.sswahs.nsw.gov.au/sswps/
    this lab does lymphocyte function- nk cell function assay. Im booked in to do a similar test with QML labs in a couple of weeks.

    cheers!!!

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