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xrmv testing- australia

Discussion in 'XMRV Testing, Treatment and Transmission' started by dana, Jun 27, 2010.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Melodie, i think testing nk cells during a flare would probably only affect its numbers not neccessarily its ability to function, if that makes sense, but dont quote me. I have written on here before about lymphocyte subset testing, i have found they seem to follow my symptoms, especially my cd8 lymphocytes. These slowly came down while i was on antivirals as well as symptom improvement, but of late, the last few months have been feeling quite buggered, a recent lymph test showed they are all elevated again. All i can put this down to maybe is changing from famvir to valtrex at the beginning of the year.

    Elevated lymphocytes can indicate an infection, i also recently read where if nk cell function is poor, other parts of the immune system try to take the slack eg increase in t-cells(lymphocytes), which i think is whats happening with me. I do have a few things up my sleeve Im looking into to strengthen nk cells but this is also dependent on if i can do some of these things while in this cfs study as it could upset there results.
     
  2. Melodie

    Melodie Guest

    Thanks for all that Heapsreal, I look forward to hearing about when you can try those things up your sleeve! (And hope that they give you some improvement.)
     
  3. Megan

    Megan Senior Member

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    Melodie, I am interested in what NK function test your doctor oordered. I have asked one of my doctors here to investigate if there is anywhere in Australia that does a NK function test. He rang around and said there wasn't one available here. It would be good for all of us if we had somewhere in Australia that could do this!

    There is a test called 'lymphocyte surface markers' that can be done via Gribbles Pathology in Melbourne which I have done a few times. It gives a NK cell count (but not function) and also gives the CD4/CD8 T cell ratio. I my case my t cell ratio is persistently high due to low CD8 Tcells and my NK cell count is very low normal.

    I have had a NK function test done by getting my blood sent to Belgium via Kenny DeMeirlier (low function). But this is an expensive process and as far as I know you have to see Dr. Demeirlier to do it, so it would be good if we could have an alternative elewhere in Australia.
     
  4. Melodie

    Melodie Guest

    Megan, I just fished out the request and she has just written "Nat Killer cell" so it seems you are right. When I asked her to do NK function she didn't say it was just the count she just wrote "Nat Killer Cell" on the request. My apologies to you and Heapsreal. And thankyou for pointing that out.:ashamed: I won't be pushing myself into a crash any time soon to have the test done as I was half considering doing. A pity it's not available in Australia.
     
  5. Megan

    Megan Senior Member

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    On the subject of XMRV testing in Australia:

    * If you are a patient of Don Lewis then you may be able to ask to see Dr Kenny DeMeirlier when he comes out here. He has been out a few times to see patients. I heard he goes to WA too. I saw him recently and ordered an XMRV test through him, so the blood gets sent to Redlabs in Belgium and gets tested there (cost I think was abt 130 euros). The problem with this is he said he won't release the test results until the test has been validated, so I don't know how long the results will take (it is a cultured PCR test not an antibody test). Also if you want to see him it will probably cost you a lot of money first up (approx $2000) to do all his tests, which I expect would now include XMRV as standard.

    Edit - I made a mistake about the cost of the above test. I have since found out the culture test costs around 300 euros, so I have cancelled mine and am waiting for the antibody test.

    * I think it's great that people are emailing VIDRL as they are probably the most advanced lab here that should be on to of this (they are in Melbourne). But I have to say I had some dealings with them when the Stanford research into Valcyte was going on and there seems to be someone there who is very cynical about CFS, which might be a bit of a barrier (I remember one my doctors having a very testy phone call with someone there). We went to the trouble of writing letters to them to try and expand HHV6 and EBV testing and they really weren't interested in any of it. I don't know their attitude to XMRV. It seems to me that XMRV is in a different ball park to the valcyte research so they should have more interest, but I'm not holding my breath.
     
  6. Megan

    Megan Senior Member

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    Thanks Melodie,

    It will be interesting to see what test results you get.

    With regards to many of the things that people have brought up on this thread, I have been feeling many of the same frustrations. I am wondering if this is something we should be lobbying CFS/ME Australia about. I would have thought that they should be advocating some of this stuff on our behalf.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    In australia nk cell function test is only done in research studies, lymphocyte subsets will give you nk cell numbers, which is cd56 lymphocyte, my results of these have always been normal. My latest test shows total lymph elevated as well as cd20 total b cells, cd3 t cells, cd4 t cells, cd8 t cells, comments at the end of my reports always say lymphocytosis.

    I think when it comes to cfs there is know regular set abnormality other then immune tests are abnormal in some way, be it high or low, basically dysfunctional. Although the nk cell function seems to be the closest thing they have found.
     
  8. Megan

    Megan Senior Member

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    Dana,

    I enquired last year with Dr Lloyd's group if they could test others outside their group and they said no they just wanted to stick to their original cohorts. I wouldn't be putting too much faith in getting tested with them anyway unles you knew that they were using the testing methodology known to find it.

    He is cynical about XMRV/CFS and my guess is he will have done his part in hosing down the whole thing here within the medical/research world. Perhaps his attitude will change with news of the other positive studies. I think much of the medical profession here defer to him on CFS so I expect that would have slowed momentum here. But then we have had the blood ban here which shows someone is thinking about it.

    I have heard that Lloyd is not proceeding with his study in any case, though I wonder if news of other positive studies will change his mind. As far as I'm concerned I'm happy for him to stay out of it until there is an agreed validated test and they know more about this virus. Otherwise I would expect that we would just see another negative study that suffers from the same issues that have occurred in the European studies and we would be worse off.
     
  9. Melodie

    Melodie Guest

    Megan said: I have had a NK function test done by getting my blood sent to Belgium via Kenny DeMeirlier (low function). But this is an expensive process and as far as I know you have to see Dr. Demeirlier to do it, so it would be good if we could have an alternative elewhere in Australia.

    I am sorry to continue off topic, but when I rang the pathology lab to confirm I was getting NK count done and they said you can get NK cell function assay done by arrangement between your doctor and Royal Prince Alfred (Sydney). I called RPA and they confirmed it. The assay costs $177.55 and if a medicare voucher is sent with the pathology request form you get $150.95 back from medicare, so she said (the person at RPA). I don't know if there are extra charges from the initial pathology lab (collection) and transport.
     
  10. Megan

    Megan Senior Member

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    Brilliant Melodie! Certainly not off topic.

    thanks,

    Megan.
     
  11. Francelle

    Francelle Senior Member

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    'but when I rang the pathology lab to confirm I was getting NK count done and they said you can get NK cell function assay done by arrangement between your doctor and Royal Prince Alfred (Sydney). I called RPA and they confirmed it. The assay costs $177.55 and if a medicare voucher is sent with the pathology request form you get $150.95 back from medicare, so she said (the person at RPA). I don't know if there are extra charges from the initial pathology lab (collection) and transport'.[/QUOTE]

    Thanks for that info Melodie. Do I dare ask my GP for another 'weird and wonderful' test? I think I am saving up my next request for XMRV when it is available here!

    Isn't it just so grrrr when people like Dr Lloyd seem to have such a negative stance to this condition? What makes them take such an interest in something like M.E. to start with?

    Also in relation to the comment regarding off-label prescriptions of meds like Lyrica - I have been intending to lobby the TGA regarding this but have had a lot happening this year. For the 300mg (56) capsules I pay $150 at Chemist Warehouse. At the moment I am in QLD and need to fill the script in the next few days so don't know what it will cost me here in Hervey Bay at a regular pharmacy. I have had a lot of success with Lyrica in that it has stabilised my sleep patterns and reduced my neuropathic pain at night, with the result that I have so much more get-up-and-go. Since starting Lyrica I now sleep thro' the night without three or four 'pitstops'! It has taken several months but I feel 'relatively' awesome in comparison to before.
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi francelle, i was on lyrica for quite awhile then it stopped working, i have since changed to its older brother neurontin, it is abit cheaper and i have found it works just as well for pain(restless leg syndrome/leg pain) but probably not as good for sleep as lyrica. 600mg x100 tablets of neurontin is just over $100, i would say 600mg of neurontin would be equivilant to 300mg of lyrica. Hope this is of some help to you.
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Heres a link to Sydney south west area health service pathology, nk cell function assay, wow there are some places out here that do some testing we want, http://www.sswahs.nsw.gov.au/sswps/
    Just found serology and antigen testing, this might be what Im looking for, actual titre values of ebv and cmv, http://www.sswahs.nsw.gov.au/sswps/ , i think u can get blood taken at any lab and then sent to whatever pathology lab requested by your doc.
     
  14. Francelle

    Francelle Senior Member

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    Thanks Heapsreal. I'll keep that in mind if my Lyrica ever stops working. I wonder why that happens though and why would Neurontin work instead? Perhaps with a bit of luck you could yoyo back and forth between the two - lol!
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi francelle, yeah, i plan to go back on lyrica after a good break as its better for sleep. Also, try asking your doc for a few samples of lyrica, they always have heaps from the drug reps, my doc initially gave me about 2months supply for free, it all helps financially.

    cheers!!!!!
     
  16. mgb

    mgb

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    Thanks for that info Melodie. Do I dare ask my GP for another 'weird and wonderful' test? I think I am saving up my next request for XMRV when it is available here!

    Isn't it just so grrrr when people like Dr Lloyd seem to have such a negative stance to this condition? What makes them take such an interest in something like M.E. to start with?

    Also in relation to the comment regarding off-label prescriptions of meds like Lyrica - I have been intending to lobby the TGA regarding this but have had a lot happening this year. For the 300mg (56) capsules I pay $150 at Chemist Warehouse. At the moment I am in QLD and need to fill the script in the next few days so don't know what it will cost me here in Hervey Bay at a regular pharmacy. I have had a lot of success with Lyrica in that it has stabilised my sleep patterns and reduced my neuropathic pain at night, with the result that I have so much more get-up-and-go. Since starting Lyrica I now sleep thro' the night without three or four 'pitstops'! It has taken several months but I feel 'relatively' awesome in comparison to before.[/QUOTE]

    Hi Francelle

    Don't know if this is too late, but I am from Hervey Bay and there is a Chemist Warehouse here.
     
  17. ukxmrv

    ukxmrv Senior Member

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    In the book Osler's Web, there was an interesting story about Dr Lloyd. Think it is the same one but have not double checked.

    He was used as an expert witness by a company defending a CFS needlestick legal case. A nurse got CFS after accidentally pricking herself with a needle in a CFS clinic.

    Dr Lloyd was used as a medical witness to say that CFS was not infectious. I wonder how many times he has done that and acted againts patients interests.

    Dr Lloyd has a lot invested in CFS not being a retrovirus or any persistant or chronic infection.
     
  18. taniaaust1

    taniaaust1 Senior Member

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    ohhhhh No.. everyone stay away from him ( Andrew Lloyd ).. BEWARE He's one of Wessleys cohorts. http://www.ncbi.nlm.nih.gov/pubmed/20466905 See link.. him and wessley work together.. He's against finding the XMRV and will use the wrong methods!! Note also P.White.. he's another buddy of Wessleys
    ..........

    I recently (this week) asked my CFS specialist Dr John Graham about XMRV testing and he said he will get me tested as soon as it's available in Australia. (He didnt mention Lloyd doing the testing as i guess he knew he is in with Wessley). If it was being probably done in Australia.. im sure my specialist would of known.

    BEWARE of anything with the term "Fatigue clinic"
     
  19. Snow Leopard

    Snow Leopard Senior Member

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    I doubt we will be seeing a test here in the near future. If Dr DeMeirlier comes back again, then it might be possible to have blood tested at Redlabs Belgium (not sure if it is available there yet though). Dr Don Lewis (http://www.cfsdiscovery.com.au/) in Melbourne and Healthquest (Clinic@HealthQuest.com.au) in Perth.

    Or you could travel to the USA. :p

    I personally would still wait until the new test is proven to have higher sensitivity.

    As for Dr G, he is a good doctor, a bit out of the way though.

    Oh and don't make the mistake of mentioning that you are interested in biology or he'll lecture for hours and you'll end up like this: :confused:
     
  20. Melodie

    Melodie Guest

    Just in case anyone's interested in the article printed in the Quarterly journal of me/cfs Australia (Victoria) "Emerge" Winter 2010:

    From Professor Andrew Lloyd, Centre of Infection and Inflammation Research, University of New South Wales

    "I would strongly advise against making arrangements for blood samples to be tested for XMRV by the newly formed commercial company associated with the Whittmore Peterson Institute in the USA. I suggest this not because I have doubts about the good intentions of the scientists at the Institute or the Viral Immune Pathways Diagnostic Laboratories (VIP Dx). Rather, this recommendation comes from the rapidly growing body of evidence against the findings in the original report in Science which raises serious questions about the both reliability and the significance of the original findings. In particular, there are now two published studies from the UK which have failed to detect the genetic material (i.e. DNA) of XMRV or antibodies against the virus in patients with CFS [1,2], and two others with similar findings are in press (one from Europe and one from the USA). Together these findings suggest three possible explanations: i) that the scientists from the Institute have unique expertise that no other well-credentialled laboratories across the globe can reproduce - this is implausible; ii) that XMRV is found in some patients with CFS and a smaller proportion of healthy individuals in the USA, but has little or no relevance to the illness (as patients from elsewhere across the world have CFS but don't have XMRV detected, and healthy people can carry the virus without illness) - this is possible; iii) the original findings are attributable to a systematic error such as cross-contamination of samples with a source of XMRV in the Institute laboratory. Only time will tell which of these three possibilities is accurate. In the interim, the reliability of the test being offered by Viral Immune Pathways Diagnostic Laboratories (VIP Dx) must be regarded with caution. If further data indicates that the XMRV association with CFS has credibility, then arrangements will be made to implement the test in Australia. More importantly, it would be highly inappropriate to consider anti-retroviral medication to "treat" XMRV detected by the VIP Dx assay - firstly as the test may or may not be accurate; and secondly as there is a real potential for serious harm arising from the use of antiretroviral medication (as is well recognised in the treatment of patients with HIV infection).

    1. Erlwein O, et al. Failure to detect the novel retrovirus XMRV in chronic fatigue sydnrome. PLoS One 2010;5:e8519
    2. Groom H, et al. Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome. Retrovirology 2010;7:10"
     

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