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How long?

Discussion in 'XMRV Testing, Treatment and Transmission' started by leaves, Jun 20, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    My guess from the US is that if XMRV is confirmed and found to be a major cause and drugs are found that get rid of XMRV and then improve CFS patients health then the UK will be forced to provide treatment for CFS patients. One reason CBT et all have been allowed to take root in the UK is that there really haven't been many good solid treatment trials that provided substantial benefits to CFS patients. We're lucky with XM RV and that the world is interested in this and pharmaceutical companies are interested and they would be very willing to do rigorous treatment trials using their drugs. So we could get just what we haven't gotten this- a slew of really strong, expensive treatments trials that are basically bulletproof. Even the UK medical system cannot withstand that kind of evidence - not if they don't want to be perceived by the rest of the world as looney.

    There are studies and then there are studies. There are alot of studies with holes in them that the powers that be will ignore. (I'm beginning to think that that may apply to the Lerner study unfortunately.) But really good strong studies they can't ignore and these companies have the money and expertise to create these kinds of studies - they do it all the time. If XMRV is there and they can treat it and that works I don't think there's any stopping it.
  2. Cort

    Cort Phoenix Rising Founder

    Glaxo Smith Kline is definitely very interested. My understanding is that they were ready to start treatment trials very quickly but once the negative studies came out they decided that they needed to pull back and figure out what's going on - so they started their own study with the CAA. Any drug company with a potential drug on its shelf - and apparently there are shelves and shelves of antiretroviral compounds that didn't make it to market - should be interested. They have two big potential markets thus far; prostate cancer and chronic fatigue syndrome. it's
  3. Cort

    Cort Phoenix Rising Founder

    That's what I've heard too. I think drug companies are very interested in this bug and when we do get positive studies they'll move very quickly. From what I've heard they were already moving very quickly. I think Dr. Mikovits talked about drug trials in six months or so- that indicated a lot of interest. We just need to get those positive studies and I think it'll move more quickly than we think.

    It seems to me that the first drug to market for a disease he always does the best. Imagine being the first drug to market for a disease that affects so many people. Everybody would be all over it- that would be a heady first year for that drug company. I read they were astonished at how much money Lyrica brought in for FM - just astonished - no one had tested the fibromyalgia market before, and when they did it was a huge moneymaker. Even though there are fewer CFS patients I'm sure they have FM in mind.
  4. Cort

    Cort Phoenix Rising Founder

    How are you doing now on antivirals Jackie? How much progress have you had?
  5. jackie

    jackie Senior Member

    Cort...I really didnt experience any improvement for the first 1.5 years (during this time period I started at 800mg. and did a gradual titration up to my current 3200mg. per day).

    I never stoppped and started or lowered my dosage (no drug "vacations"). Never added in any other "treatment".

    Although Dr. Chia gently pestered me to add first oxymatrine and then, as it was developed , "equilibrant"...I resisted for a variety of reasons. Not the least was my aversion to feeling worse again (as I knew might be likely for a time...even sporadically). So, I kept chickening out!

    Interesting...I had my most recent tcell counts and they are now on the high end of normal! (1480 cd4 and 580 cd8) and yet, I also have increased shingles. Including an unusual rash on my back, (that I feared was vascular), but that chia has seen in several other cases, dx'd as shingles deep in the tissue, and also shingles along several nerve pathways/lymph nodes. These, in addition to the "normal" shingles across the back of my neck! yikes!

    None of this can be easily explained...but he says they are happening to many of his patients.

    AND (this is also a new developement)...hsv-1. So, im a bit of a mess physically (but I can deal with this), as the shingles are crossing to both sides of my body at the same time! and they NEVER go away.

    My PEM is MUCH better (shorter duration, much quicker recovery exacerbation that previously lasted weeks-months is now a matter of a few days), and I credit acyclovir with this.

    Fatigue is also fact, I spend less time in bed (although I still often FEEL better when reclining which is most likely due to OI)

    I've always had cardiac chia has warned me to be careful not to overdo (as this "stirs" up the enteroviruses), and I also take atenolol to keep my heart rate steady (I have tachycardia)

    I've posted this several times..but its worth repeating, I think. My memory and cognitive problems (which 2 years ago were so pronounced that my long-time neurologist dx'd MCI - with aricept/namenda as my treatment...which i declined!) have improved dramatically.

    I can now read, write, much so, that my neuro reversed his dx of mci (how often does a neuro reverse ANY decision!?)

    Last week Chia decided that it really is time (cant talk my way out of it this point!) to attempt to begin titrating down with acyclovir (as such a high dosage can bring problems of its own and 4 years is a long time at that dosage)...but not until I ADD an immune modulator (equilibrant) at the tiniest dosage (he says 1/2...I say 1/4 tab per day to start!).

    He is giving me 3 months to experiment (increasing until I reach 1 daily tab), and if I do ok, we will begin to reduce acyclovir. Our hope is to reduce this to a "maintenance" dosage of 800mg. (No more procrastinating...I begin this soon.)

    Another interesting item. I became somewhat obsessed (upon learning that my cd4 count had "spiked" from the usual relative low seen in me/cfs patients)...and felt hopeful that IRIS might be taking place....since I had reactivation of several of the the herpes viruses! Similar to what often happens in the first year of haart/hiv...and even a cancer (ex: myeloma) patient during immune supression from chemo.

    But no, he didnt feel that had happened to me (I was quite disappointed, IRIS can be a good sign post to have, during any treatment protocol!)

    Especially if you have a significant viral reactivation (vzv, cmv, etc) that may MIMIC a downward turn in your condition.

    Although he has seen IRIS occur in a few people using immune modulators...and also said it might be possible once I start them! (he also said that if he tested my dna he was sure he'd find VZV! pretty wild)

    So, gradually seeing a staedy and consistant improvement in certain areas...enough (and especially BECAUSE of the AREA...brain) that I would not even consider stopping.

    I feel sure that I would regress if I did that (and there is a real possibility that I will have a fight on my hands re: vzv increase, when I reduce...heres hoping that equilibrant can give my immune system a boost, to counter this!)

    Thanks for asking! jackie (sorry for the long post...but I tend to rattle on, as you know, now that I can!)
  6. BEG

    BEG Senior Member

    Southeast US
    F.Y.I. I just called Dr. John Chia's office. He is located in Torrance, CA. He is booked through December, and I was told that appointments go fast. He DOES take Medicare for those of you who rely totally on this insurance. So . . . if you don't live near CA, but you are able physically and financially to travel, I do believe, after what I've read here and on another thread, it just might be worth a visit.

  7. jackie

    jackie Senior Member

    well said...sickofcfs! (also, you reminded me of the fact that in the early days of aids....acyclovir was widely used - and its still being used to suppress cmv, vzv for example, as well as other viral reactivations in hiv...and i dont know why it isnt being used more often as an alternative to valtrex if that isnt affordable or covered by ones insurance. though it is a longterm proposition, as you pointed out)

    id gladly try valcyte if i could....but it wasnt offered to me, though i tested pos for hhv-6)

    (i asked my doc (last winter) what id do if testing positive for xmrv...he said i'd ADD arv's to the av's)

  8. Adam


    Sheffield UK
    Excellent analysis of where we are now and where we are going with this illness. Many thanks for thinking it through and putting down the detail. Some other useful contributions. Usual negative ones, too, but there you go, you can't please everyone. Why anyone would hope that XMRV is not the cause of CFS/ME baffles me?

    Five years was also my rough guess for us here in UK dependant on NHS for treatment.

    Lol @ Cort - yep, the NHS would be loony not to take note of US trials/research, then again, we tend to do things our own way.
  9. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    WPI findings confirmed by NIH and FDA?


    I wanted to make sure everybody heard this.

    This is not official confirmation yet, that awaits publication from what I gather from this article.

    I will try to start a new thread as well. This information comes from the XMRV action group on facebook. It is still not known what "confirmation" actually means.

  10. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Depends on what you mean by treatment. I think there is already combination of AIDS treatments which they have found will probably "treat" for this virus. But does treatment mean cured from it? nope.. is AIDS (one of the only other two retroviruses in humans) cured? It's been over 10 years now and they still cant cure HIV/AIDS even with all the funding which has gone into that.

    We may have a virus which can be treated but not cured. Just think about what this implies esp if it can be transmitted sexually (eg to men giving them instead prostate cancer).
  11. Rrrr

    Rrrr Senior Member

    i think it is a great question, leaves. and i will say that judy m has repeated said they will start treatment trials as soon as the WPI doors actually open (to the physical building), which is due to happen this fall, in sept, i think.

  12. Rrrr

    Rrrr Senior Member

    GlaxoSmithKline, the major HIV med manufacturer. they are already doing xmrv studies now. remember when dr lapp announced this?
  13. *GG*

    *GG* senior member

    Concord, NH
    From a Co-cure email:

    Not only does XMRV not like to swim, apparently it's a homophobic little bugger as well!


    Absence of xenotropic murine leukemia virus-related virus in bloodcells of men at risk for and infected with HIV
    Kunstman, Kevin J; Bhattacharya, Tanmoy; Flaherty, John; Phair, JohnP; Wolinsky, Steven M
    AIDS: Official Journal of the International AIDS SocietyPOST AUTHOR CORRECTIONS, 20 May 2010
    doi: 10.1097/QAD.0b013e32833b76fb

    Xenotropic murine leukemia virus-related virus has been detected in blood cells of patients with chronic fatigue syndrome and in 3.7% of healthy controls from the same geographic region. We evaluated 996 men who were participants in the Multicenter AIDS Cohort Study for xenotropic murine leukemia virus-related virus sequences in blood cells by means of a real-time quantitative PCR assay. Xenotropic murine leukemia virus-related virus was detected in none of the men on the basis of the absence of xenotropic murine leukemia virus-related virus DNA, suggesting that infection may be population-specific.

    (C) 2010 Lippincott Williams & Wilkins, Inc.

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