australian valcyte study??

Discussion in 'Fibromyalgia Main Forum' started by heapsreal, Aug 17, 2008.

  1. heapsreal

    heapsreal New Member

    Just got back from my GP, he mentioned that in Sydney or Melbourne(Im in Brisbane)they are starting a study similar to Dr Montoya's, using antivirals for cfs. If anyone on the board is involved I would be interested to know more.
  2. ladybugmandy

    ladybugmandy Member

    i wish other countries would get on the ball already. this is ridiculous. i have to pay thousands to go to the states for treatment!(i am in canada)

  3. heapsreal

    heapsreal New Member

  4. JaneInMelbourne

    JaneInMelbourne New Member

    Heapsreal, I'm amazed to hear of the proposed study in Sydney or Melbourne similar to Montoya's. I'm in Melbourne and meet Montoya's criteria for his study and would be very keen to participate in the trial. Could you let me know who your GP is or find out from him who is running this trial, so I could contact them. Thanks so much.
  5. heapsreal

    heapsreal New Member

    My DR in Brisbane is Dr Deed, he has an interest in cfs patients and also uses the marshall protocol for some of his patients, so he has a good insite into cfs. My last visit to him he said they were doing similar studies to montoya but im sure he said that the patients were paying for all expenses. About $15000 for 6 months of valcyte, out of my league, unless i was 100% sure it was going to cure me.

    Im interested in what testing you have had done to fit montoyas protocol, I have been unable to get tests to measure viral titre levels, i started off with ebv and chickenpox, the testing i have had just say that i have been exposed to ebv, also seen an immunologist who said they dont test viral titre level also. I do have elevated lymphocytes that my DR says i have an ongoing infection that we dont know what it is.

    Its frustrating how advanced most australia medical research is but so poor for cfs.

    Good luck
  6. JaneInMelbourne

    JaneInMelbourne New Member

    They're making patients pay - I can't afford it either.
    To get tested, send your blood to VIDRL in Melbourne - get any lab to take your blood, but make sure they send it to VIDRL and not do the tests themselves (this happened to me the first time and I had to have blood collected a second time - the nurse phoned their headquarters and was told to write the instructions again in big letters with a red marker pen).

    Get your doctor to write this letter to VIDRL to accompany the blood sample.

    Please report titres for both IgG and IgM for the following:
    EBV serology VCA
    EBV serology EA (Early Antigen)
    HHV-6 serology

    My doctor had to phone VIDRL once they received the blood to make sure that they actually reported the titres, rather than their usual positive/negative. He had to explain to them why he needed this and tell them about the Stanford research to persuade them to report the numbers.

    I don't understand why it's so difficult for them to report the numbers. They have them, they just don't report them.

    If your HHV-6 IgG is 640 or above, it's active.
    If your EBV EA is 160 or above, it's active.

    Hope this helps and good luck.


  7. JaneInMelbourne

    JaneInMelbourne New Member

    Is this your doctor?

    Deed Gary Dr
    Carina Central Medical Clinic
    830 Old Cleveland Road CARINA
    Telephone 3395 2455

    I'd like to ring him to find out who is doing the study. Thanks.
  8. heapsreal

    heapsreal New Member

    Thats correct, Dr Garry Deed. I probably wont see him again till october but will print out what you said about the testing to show him.One other thing is if you are positive to ebv then you could try valtrex which might be a bit cheaper, not sure as doses are quite high. I did try 500mg of valtrex a day for 6-8 weeks but didnt have much success, but these doses and treatment length are quite short compared to what Montoya uses. I think they use 3000mg a day, this becomes quite expensive too. It was costing me $140 for 2 weeks on 500mg a day on valtrex. im currently using inosine which is suppose to be similar to the immune modulator immunovir. My lymphocytes have increased which is what is suppose to happen. Have been feeling up and down since but improvement in aches and pains as well as sleep have improved. This is done under my own steam not under my Dr but will tell him about it when i see him. Inosine is a cheap supplement where immunovir is an expensive drug but from what i have reseached the 2 arent that different.
  9. heapsreal

    heapsreal New Member

    When you ring the dr's surgery, if you cant talk directly to him, ask for his email address and email him, he is very receptive doctor. I only have his old email address, sorry i cant help you there,

    good luck
  10. heapsreal

    heapsreal New Member

    They moved about 6 months ago, new phone number (07)34217488
  11. ladybugmandy

    ladybugmandy Member

    just wanted to let you guys know that generic valtrex will be available after june of 2009, when the company loses its patent. it will be MUCH cheaper.

    valtrex is better for EBV than valcyte.

    valcyte is required if you have CMV and/or HHV6.

    please call roche to see if they will help australian patients pay for valcyte for CFS. they do in the US.

    best of luck
  12. Turnert

    Turnert New Member

    He is overseas back later this week at least he was last week. My Daughter is going to him as well though as she was tested for HHV6 exposure and found negative so no further testing was done. I thought Dr D tested for HHV6 at least I saw a post here that said he was giving anti virals to a poster here.

    Maybe he is testing them on his patients. As my daughter was negative for the exposure he followed another line of testing for bacteria namely Chlamydia Pneumoniae and mycroplasym the latter test showing non negative non positive which he put down as she has some chronic infection active. He is trying Ibilex and it is working really well. See my post re it.

    CFS can be caused by many undiagonosed conditions we have to search for them. A firm calle dBiologics Australia is running a research study into the above two bacterias I think he mentioned.

    Good luck with your searching if spending 15K on antivirals fixed my daughter it would be worth it.

    PS it is hard to get to see the Doctor usually an 8 week wait.

    [This Message was Edited on 09/07/2008]
  13. heapsreal

    heapsreal New Member

    Thanks for the info.
    Dont quote me on this but, the montoya study i think uses a different testing procedure to what is normally used in australia, also in my case i was positive to ebv/glandular fever but no titre values are measured, so as someone has said there is a lab in melbourne who actually measure titre values. Above a certain amount gives us an indication of an active ebv infection, which apparently some docs in the usa have found respond to antivirals.

    Also think that testing for mycoplasma is done differently too in the states. Most of the problems with info out there is its from usa using diferent testing procedures to us, but there are some labs who will test what exactly what your doc requests, its just a matter of finding these labs. also not too many docs in australia that give a rats about cfs.
    good luck for u and your daughter