valcyte in australia

Discussion in 'Fibromyalgia Main Forum' started by heapsreal, Jan 11, 2008.

  1. heapsreal

    heapsreal New Member

    Anyone from aus used valcyte for cfs, I have a good doc who specialises/interest in it. Currently has me on famvir for 1 week to see how i go. Onset of my illness was chicken pox the few months later glandular fever, I have high igG igA levels and chronic mild neutropenia for quite some time.Suppose im after personal stories from australia or even one about valtrex or any antiviral treatment they had for cfs. anti virals are expensive !!!!
  2. meganp

    meganp New Member


    My name is Megan from Melbourne Australia. Myself and another friend here are seriously investigating the use of Valcyte and have found a doctor here willing to prescribe it for us. Because this is such a serious and expensive exercise (I calculate 6 months of Valcyte at $15,000 AUS) we have spent many months attempting to get the right tests done. Have managed to get the HHV6 and the EBV early antigen tests done using the right tests (we think they are the same test kits used at Focus) but have been unable to locate a lab here that does the EBV VCA antigen test using the IFA methodology - do you know anywhere in Australia that this can be done?

    All I can say is the testing process has been very stressful for us. The attitute of the laboratory staff is very negative and we wouldn't have got so far if it weren't for the efforts of our heroic doctor (and the medicare safety net covering his costs).

    My illness started wil EBV. Interestingly, my EBV early antigen titers are low but my HHV6 titers are high and have had some 'equivocal' results on the HHV6 IgM.

    What is your story and where in Australia are you? - do you know your titer values?

    Melbourne Australia
  3. heapsreal

    heapsreal New Member

    Im from brisbane, I see Dr Deed who has an interest in cfs. He also treats cfs with the marshall protocol which is antibiotic based(havent tried it yet), he is open minded about treatment which is good. From what my doc has told me, PCR testing is what they use for mycoplasma and hhv6 and is expensive. I dont have the extra cash for these but my doc is willing to try antivitals and see if i get a response. He speculates my cfs is viral based from my serum immunoglobulin levels which can be done at normal labs in australia. These arent specific to certain conditions like ebv but a general picture of your immune response. I have been on famvir for 1 week and feel better for it, its expensive antiviral $140 for a week. But my understanding is you can take lower doses which they call suppression therapy for longer periods. Valtrex is an antiviral which some people have had success with, which is somewhat cheaper. Also might look into take famvir 1 week out of every 4 weeks just to suppress the virus(and less expense). Have also read where people have taken valtrex or famvir for a while before taking valcyte and didnt get as bad a herx reaction as others who went straight on valcyte. Have also just started lyrica also pricey and this also has been good, reduced muscle aches and brain fog and improved my quality of sleep, still take occassional sleep meds with it.

    What dose were you looking at taking valcyte, could you take lower doses? Was it priced from an australian pharmacy. Famvir is an expensive antiviral and 6 months at high dose would be $3500 for 6 months.

    Any way keep in touch, fill me in on any other treatments you have found effective.

  4. meganp

    meganp New Member

    Hi again,

    Thanks for your response. It sounds like we are trying to do the same thing. It sounds to me though that you need to try and get your viral titers measured or you are just stabbing in the dark. As far as I can tell Famvir is effective only against HSV1 and HSV2 and herpes zozster, if your problem is HHV6 and or EBV then this may not help (although it sounds safer). Perhaps you can talk to your doctor about this. My understanding is that Valtrex is effective against EBV but not HHV6. I was hoping to use Valtrex but my tests results show I am more likely to have a HHV6 problem.

    The irony or your situation is that Panbio are a Brisbane based company who sell their HHV6 tests to the US but you can't get the test in Brisbane! I just spoke to the Panbio representative in Brisbane and he said the only two places in Australia that do HHV6 testing are the Victorian Infectious Diseases Reference Laboratory (VIDRL) in Melbourne or the Westmead Hospital in Sydney. They are both using exactly the same test kit that is being used by Focus diagnostics who are doing the testing for the Stanford trials so the results should be comparable. Your doctor might be able to get your sample sent to one of these labs via another lab in Brisbane if he requests this.

    The EBV early antigen test is only done at the moment at VIDRL. They are using the Focus Diagnostics test which is distributed by Panbio in Australia so again it is the right one. Likewise your doctor might be able to get a sample sent from a Brisbane lab.

    If you try and do this you should get your doctor to write on the form which lab he wants it sent to and also explicitly say that he wants titer values reported or they might not do it. If they don't he can ring the lab and get them anyway.

    I hope this is helpful,


  5. heapsreal

    heapsreal New Member

    Yes Im stabbing. If anything is harder then writing a script doctors arent too interested. Havent been diagnosed shingles from my chicken pox illness and dont have the typical rash on one side of the body, i have a rash all over my back that flares up and down depending on fatigue levels etc. Famvir did help this, also just hoping it brings my viral load down to where my body can control it.I also believe some people with hhv6 infection have a rash that flares etc. Wouldnt it be easy to have the test for hhv6 then pick up valcte and battle on for 6 months then back to normal. I will definately look into those tests, appreciate the info.

    ps. those valcyte prices from overseas pharmacies or australia, Ta Dan
  6. jillynz

    jillynz New Member

    I am just organising blood to be sent from here to get ricketssial testing in Oz, then was going to head to the states for viral testing. So its the lab in Melbourne that can do them all - is that correct? do you have to see an infectious disease dr there to write the lab form. if so who do you see? It would be worth my while coming to get the tests done there if at all possible. Thanks for all your hard work on this! Its all so crazy eh - the fact that the test is made in Australia and you have to kinda beg for the info. Like you I just go straightto the source - either drug companies or labs. My CFS dr here is good , but doesn't investigate this kind of thing.
  7. heapsreal

    heapsreal New Member

    My wife works for QML laboratory, she's a vampire lol.
    Found out that they do PCR testing for hhv6 and ebv, they send samples over to Royal Brisbane Hospital for testing and these tests are free under medicare, i suppose if you live outside qld you may have to pay some type of fee. QML also do the hhv6 ebv IgG antibody tests, once again they out source testing, although i did hear Royal Bris were having problems with this so send these to Sydney. PCR testing for mycoplasma isnt done in Australia as far as I know.

    Saw my doctor today and was happy to order these tests, also put me in a cfs study where they are analysing lymphocyte types and structures, also immune chemicals called cytokines, My doctor, Dr Deed and Dr Harry Smith, Dr Whiting are involved in this study. I will ask him more questions about this on my next visit in 5 weeks.

    Valcyte he said at this stage is very hard to get, only authorized for aids etc I think, so he cant prescribe it, yet he said so he is willing when availability occurrs. In the mean time he has given me a script for valtrex with repeats which he said can help supress these viruses and give some relief, $140 for 30x500mg. I did get some effect from famvir but valtrex more cost effective.

    So if anyone lives in Brisbane Dr Deed is the Guru at the moment on these things and is a really nice guy too. 3 month waiting list though.
  8. meganp

    meganp New Member

    The information on the Stanford trial and how to go about testing is on the Stanford website below (first one listed). This is what me and my doctor have been using as a guide to testing. Of note this guide points out that all the people who were successful on the Stanford trial were negative for PCR testing and (I think?) IgM testing - the usually accepted tests for active viral infection. This is why they are using the IgG tests as a guide. Although it is still worth getting the PCR and IgM tests done as you never know it might still show up. In my case I have had two 'equivocal' results on the HHV6 IgM test which was not expected.

    This site is useful also.

    We have been corresponding with the HHV6 foundation and they have advised that the EBV EBNA test is no longer considered by Stanford as an important indicator so you don't need to worry about this test. Note that on the clinical trials site (second one above) they are no longer using this one.

    Of the three remaining required blood tests being used by Stanford, two can be done in Melbourne at VIDRL. The HHV6 one also at Westmead Hospital in Sydney. These are:
    HHV6 IgG and IgM (using IFA methodology)
    EBV early antigen (using IFA methodology)
    To get a sample sent to VIDRL you need to get it done via another laboratory (even in Melbourne). The problem we have been having is that the intermediate lab doesn't know what the EBV early antigen one is (they confuse it withe the EBV VCA antigen - see next para) and can fail to send it on - your doctor's instructions need to be clear that both tests need to be sent to VIDRL.

    The third test Stanford are using is the EBV viral capsid antigen (EBV VCA). There are two methodologies for doing this test the IFA method and the ELISA method. The one being used at Stanford is the IFA methodology and I don't think that this can be done anywhere in Australia because all the labs are using the ELISA technique because it is cheaper. The ELISA test for EBV VCA is a common test done by most of the labs and must also be available in NZ. The HHV6 foundation has advised that the ELISA test can be used as a very rough indicator with results above 4 or 5 perhaps indicating high titers, although they generally consider this test to be much less quantitative and more inconsistent that the IFA method. They are also using different test kits which affects the result. I had two tests done on blood drawn at the same time and sent to different labs with this test and the results were completely different so I am not really confident with this one - but then again my EBV titers have gnerally been lower.

    Also VIDRL are very skeptical of this treatment and hate talking to patients on the phone. I recommend for your own sanity that if you need to speak to them that you get your doctor to do this on your behalf.

    With regards to the cost of Valcyte, I was quoted this cost by my doctor (he thought it would put me off). Also if you google Valcyte and PBS you can find the cost of the drug there. My understanding is that the PBS doesn't cover it but that the doctor should still be able to prescribe if for you if you are willing to pay.

  9. heapsreal

    heapsreal New Member

    Thanks for all the info. I understand the hhv6 pcr testing isnt 100% but like u said something might come up. The hvv6 IgG seems like the important one but having problems with this one, Will ask doc about VIDRL for that one and the EBV viral capsid antigen. EBV early antigen IFA method is being done.

    Valcyte, WOW! googled the pbs sight, think thats out of my price range. Im thinking of asking the doc about weekly or twice weekly IV ganciclovir, which seems more readily available in Australia. See if he is willing and price is right and if it would be effective, maybe also continue valtrex tablets daily at same time.

    Also asked him about ampligen and he said they used it several years ago, people got better then regressed, also allergic reactions were common.

    Thanks again for all the research you did in the testing, glad im looking into it now, was mainly looking at treatments etc, stabbing in the dark, now want to see what Im stabbing lol.
  10. jillynz

    jillynz New Member

    Once again, thank you Megan for this information. I can imagine the problems in speaking with lab people. I had to laugh when you said your dr thought the price would put you off. My dr did the same thing. What they seem to forget is the income, let alone life, lost - as a result of this illness. This is the first kinda real 'science' that fits the illness as far as I can see. i undrstand drs talking us out of alt therapies (I spent alot of time doing this with patients myself - then gave up), butthis isn't like that. I think my dr just doesn't want to get 'involved' as the results aren't in and the drug needs monitoring which she hasn't got the resources - she is only a GP. If this drug was approved for this illness, I guess specialists will have to take over- and they will have a lot of learning to do. This is part of the reason I was just going to go to the states and get the info from the horses mouth. Cost high - but it seems to be the only sure way to find out.

    thanks again. I might start the same investigations here.

    best Jill
  11. meganp

    meganp New Member

    Hi again,

    Just another note to let you both know that although VIDRL were good for the HHV6 and EBV early antigen tests, we had problems getting the results of the EBV VCA ELISA test from VIDRL. They were extremely difficult about providing the information on the reading, and not clear about what they were providing one they did.

    Most importantly, I am not 100% sure of this, but my understanding is that for ELISA tests the results quoted should be something called the optical density ratio, or 'OD ratio'. This is the reading of your test divided by the 'cut off' score for the batch of tests that they run (the 'cut off' score is different for each batch). When we dealt with VIDRL they were providing the OD reading and not the ratio and were not clear about which one they were providing which was really confusing. You need to be really clear about this to interpret your result, so get your doctor to check. I think you are probably better going to a different lab than VIDRL, one that quotes the OD ratio to start with (and get your doctor to request this on the form) - I had one test done at Gribbles in Melbourne and they were much better about this.

    Heapsreal, if I recall correctly you said your wife worked in a lab - maybe she can confirm the above interpretation?


  12. heapsreal

    heapsreal New Member

    Hi Megan,
    My wife is the one that takes the blood but i will get her to talk to one of the scientist, but like you have experience some of them dont have a good grasp of it. Havent had my test reults back yet but have started on valtrex, its been almost a week, i hope its not placebo but I am feeling alot better. If i dont have to pay for valcyte and can fix this problem with valtrex, my bank account will be happy. One of the american experts(not Montoya)uses valtrex if ebv is reactivating and if hhv6 and ebv he will use both. I just hope my tests come back negative to hhv6 and positive to ebv, its cheaper and easier to treat.
  13. meganp

    meganp New Member


    I think you are right about why they don't want to prescribe it yet. I guess it's fair enough when the placebo controlled trial is in. I approached an infectious diseases doctor at the Alfred hospital in Melbourne about it. I think he was interested but said they could not do anything until a placebo controlled trial is in. I think also think properly speaking it should be people like him who deal with it if this research turns out to be true. At least I got him to read the research so far (a small win). He had at least heard of it which I took as a good sign (I wasn't expecting much).

    Of interest, if you have read the original Stanford study, it cites another paper which has reviewed the effectivness of placebo controlled trials on CFS - this is a very good read. Its called 'The Placebo Response in the Treatment of Chronic Fatigue Syndrome: A Systematic Review and Meta-Analysis'. In short they find, against their expectations, that placebo is less effective for CFS patients than for other similar conditions (they review 29 other studies).

    Anyway, you said you were going to the States to hear from the horses mouth. I was wondering which horse you were going to see? ie Dr. Lerner or the Stanford mob? I hope you keep us posted if you find out anything useful.

    I hope both you and heapsreal keep posting. It's good to hear what's happening in this corner of the world.

    All the best,
  14. jillynz

    jillynz New Member

    Hi Megan,

    I was going to punt and go for lerner. basically because he's been in the game longer (also he is old and i wouldn't want him to die!) and i suspect my prob harks back to EBV and he seems to look at all sorts aswel - although I think Montoya is looking at other infectious now too. You are right about CFS'ers not being placebo responders - Nancy klimas made this point in a lecture I saw of hers. Well done seeing an ID dr. i'm beginning to wonder whether to approach one here. Roche themselves here knew of the montoya study.

    would you or anyone else you know be keen on coming to the US with me? I'm perfectly capable, been b4 for other reasons whilst sick, just wondered in that it could help save costs and we could help each other.
    best Jill
  15. meganp

    meganp New Member

    Hi Jill,

    It sounds wise to me to see Lerner because he is so experienced with this. I'd like to go but I'm not sure that I can justify the cost at this point. It sounds like you have to stay there some time while he does a whole bunch of tests etc, then maybe while on the drug? Do you know how long you have to stay there or what the testing costs would be? I once emailed him office to see if he would do telephone consultations and they said no, but maybe it would be different if you have seen him initially. Also my Dad is quite sick with cancer at this point so it is a difficult time for me to leave the country for any length of time.

    It is interesting to hear that Dr. Montoya is now placing people on Valtrex after Valcyte. This sounds like the combination approach Lerner has been using.

    Also are you a doctor? I noticed you said you were talking to patients in one of your posts.

  16. jillynz

    jillynz New Member


    No i'm not a doctor - but feel i may as well be! I've had this dd long enough and worked for our ME Soc as the editor of Meeting Place for about 5 yrs. Came over to Chris Hunters conferences etc - so I've been in the "game" along time.

    My husband, who married me sick, (been with him 15yrs) left me 13mths ago, and so it is with settlement $$ that I think its either go and try to sort this out, or sit about and get know where as in previous 15 yrs! I just kinda 'feel' progress is slowly being made by these drs.

    I started with EBV, but have some other quirky things that should mean something to someone. I recovered completely after having a burst appendix (nearly died as stupid dr.. long story) BUT , for 3 month I was great. I respond to Mino and flagl (tried for the sake of it). So I have many sign/pointers - but my dr, who tries her hardest has no back up and is worried to randomly prescribe things for too long. I have always felt, that I'm classic EBV, plus something else. I think Lerner is my man.

    Sorry to her about your Dad. My folks are also getting older and this is also another reason to go sooner , rather than later. Mum has bad knee and will prob need surgery, also has had cancer. With my level of health I'm no use to anyone, and frankly get so sick of it all and depressed, that I think a trip is well worthwhile.

    BTW. Iv'e been told about a girl in Oz who has been to see Cheney - she was on OzME - you don't happen to have her story do you.

    I'm jill at ihug dot co dot nz. I hope we are able to leave email addies like this for each other??
  17. meganp

    meganp New Member

    Hi to anyone reading this thread,

    I just have a correction to something I posted in one of my earlier posts. I had previously said 'the HHV6 test is also at Westmead Hospital in Sydney'. I have spoken to the Westmead lab this week and discovered that although they are running the same Panbio tests being used at Stanford that they are doing this in a different way, which makes the test useless for our purposes. They are only identifying titers to the level they need to to identify the sample as positive and not progressing the testing process any further to find the maximum concentration of titers. They said they will simply report >40 for any positive result. This is no good for anyone looking to test for CFS purposes.

    Also Westmead are running an IFA test for the EBV early andtigen and the EBV VCA antigens. On the face of it, this sounds good, but it isn't for us because they are not using the Focus Diagnostics/Panbio test kits (they have their own 'in house' tests) and they are also practicing the same methodology as above so that the maximum titer concentrations are not being identified.

    I have, however, heard that there might be some special testing coming up at Westmead in relation to HHV6. Not sure if this is in relation to CFS - will post again when find this out.

    At this point it looks like VIDRL in Melbourne are the only lab in Australia able to to the HHV6 and EBV EA tests.

  18. heapsreal

    heapsreal New Member

    Hi megan, my recent test for hhv6 came back negative, didnt give any levels etc. This was from royal brisbane hospital. What my doc found interesting was that i was negative to ebv in 2007 but when he got some of my old results from another doc i was positive to ebv in 2002. Also found i had cmv in 1998 and told me i was gluten intolerant from another test result in 1998 which my previous doc said was negative. Starting to think most docs cant read test results. So I am now persuing gut problems relating to gluten intolerence etc and currently being treated with anitfungals for yeast infection(looking into candida). Had no luck with valtrex for 3 months, nothing positive or negative. Are you following any treatment at moment or still waiting to get a proper test those viral infections. I think australia is a bit behind in thinking outside the box when it comes to cfs. good luck
  19. meganp

    meganp New Member


    If I were you I would check what the HHV6 test was that you had done at the Brisbane hospital. I might be wrong but my understanding was that the Panbio HHV6 IgG is only available at VIDRL in Melbourne (they should have sent it there). If they gave you a PCR test then this means nothing if it is negative - all the people that benefited from the Stanford trial were negative for this test. If you had a positive IgG test for EBV earlier then I thought it should still be positive. Again check that it was an IgG test and not a PCR test.

  20. tennisnut

    tennisnut New Member

    Interesting to read all this. Some months ago I made a feeble attempt to speak to a doctor about Valcyte. He looked it up in his little book, looked at me and said "I'm not going to prescribe you that". Offered me doxycycline or some other inadquate antibiotic. End of visit. End of my attempts.