Valcyte/antivirals: have Cheney/other top docs expressed thoughts on this??

Discussion in 'Fibromyalgia Main Forum' started by rochar12, Nov 16, 2008.

  1. rochar12

    rochar12 New Member

    i mean other than Montoya and Lerner, what is the consensus among other top researchers?

    I used to follow all the research very closely, and see what all the top doctors were writing about it, but ive lost track of the narrative

    The Montoya/Lerner/Valcyte/Viral thing seems to have picked up a lot, and Im very interested in it, however, I am curious about how some of the doctors Ive been following for a long time think about this issue

    anyone know if Cheney, Susan Levine, Lapp, Enlander, others [brain fog not letting me remember other names right now], have any of these people weighed on with their thoughts? do they agree with the theory? are they using it?

    im especially interested in Cheney, because he has a theory about the heart that might be similar to Lerner [who uses antivirals]
    [This Message was Edited on 11/17/2008]
    [This Message was Edited on 11/17/2008]
  2. ladybugmandy

    ladybugmandy Member

    hello. i know dr. levine and enlander are using antivirals. i think levine favors lower doses than dr. lerner, though.

    i have no idea what cheney is doing!

  3. rochar12

    rochar12 New Member

    interesting; do they think there is a cure with this approach?
  4. ladybugmandy

    ladybugmandy Member

    some have been cured, some have had "significant improvement", and i imagine some haven'r been helped.

    perhaps there is some permanent damage from years of this illness.

    they have already determined that after mono, for example, there is permanent "scarring" of the immune system, with the IL-15 not working any longer.

    there are various tests you can do to determine if (or at least suggest that) antivirals are likely to help you.


  5. mindblower

    mindblower New Member

    I very much disagree with Sue's comments here and to my knowledge most ME/CFS docs don't use antivirals for treatment, don't plan to and in some cases, like Dr Cheney, gave up on them long ago given so much failure. Also, Dr Lerner's clinical practice of using things like valcyte in ME/CFS as a hoped cure or for providing "significant improvement"(untrustworthy and often misleading words in clinical practices) remains in great question.

    His claimed results have never been duplicated and Dr Montoya's most recent attempt at this seems to be a bust according to a long known ME/CFS specialist, Dr David Bell, who makes this comment on that study:

    "a disappointing result overall..."

    More full commentary from him and other ME/CFS researchers who've followed that study and other questions regarding presumed issues in this condition can be read at this site:


    [This Message was Edited on 11/18/2008]
  6. ladybugmandy

    ladybugmandy Member

    well...i am not that pessimistic about antivirals. i still think chronic infection is to blame for a large percentage of CFS cases and perhaps better and less toxic antivirals will be the answer for many.

  7. mindblower

    mindblower New Member

    I'm not really being pessimistic about causal infections and antivirals, Sue, just noticing the evidence heavily weighted against them existing and truly working in ME/CFS.

    It's been a road of failure for antimicrobials in this condition overall, including antibiotics if you haven't noticed.

    And holding out hope against the observable realities, both the failure to define any active causal infection in us still and the results of antimicrobial treatment studies to date, except Lerner's lone and now very questionable ten year old study, doesn't help.

    The data very much points towards you being wrong about this and it's not personal nor about being negative to say so.


  8. winsomme

    winsomme New Member


    i agree with you. there is simply too many cases of recovery at this point to really know what place these kinds of treatments have in treating CFS.

    researchers need to figure out why the people who do respond to these treatments do respond, and figure out how to better target the patients that will respond. and the only way to do that is more research.

    has anybody even tried to recreate Dr Lerner's study using the same treatment and diagnostic criteria?
  9. waltz

    waltz New Member

    It was made very clear that Dr. Montoya's presentation at the conference was very preliminary. A lot of the test results and data hadn't even been analysed yet. So unfortunately, I'd take any doctor's comments and analysis of Montoya's study with a huge grain of salt when the study hasn't even been finished and published yet! That would really make me question Dr. Bell's understanding of research and the scientific process if he published a negative analysis before the study was even published.

    Some posters on the board are in direct contact with Montoya and HHV Foundation and perhaps know a little more than is public knowledge at this time.
    [This Message was Edited on 11/19/2008]
  10. ladybugmandy

    ladybugmandy Member

    maybe you're right. i am not feeling good at all lately. maybe this antiviral thing was a big failure. after 1 1/2 year on powerful antivirals you would think something more would have changed.

    most of the time i am about 20% better than i was before i started but i also have taken sick leave and am resting a lot - perhaps that is the reason.

    the only real evidence i have right now that the antivirals may have done something good is the dramatic drop in RNase L activity.... but no one is even sure what that means yet.
  11. mindblower

    mindblower New Member

    "Some posters on the board are in direct contact with Montoya and HHV Foundation and perhaps know a little more than is public knowledge at this time..."

    Nope, there are no interesting hidden secrets going on with this one. I kept track of many "claimed" early great successes on valcyte, have directly contacted the HHV-6 Foundation, and have had plenty of communications regarding patients taking this antiviral to realize
    Dr Bell's comments are on point and not premature.

    It's not unoften realities are practically discernible before any final and official stamp of conclusion has been made. We're fortunate to have a scientific study get done regarding any proposed ME/CFS treatment, don't get me wrong as this is the best reality test.

    But reading the writing on the wall is an important efficiency skill that too often is underutilized in this community and it is applicable here.

  12. mindblower

    mindblower New Member

    "the only real evidence i have right now that the antivirals may have done something good is the dramatic drop in RNase L activity.... but no one is even sure what that means yet."

    I appreciate your being given pause by this. I too have had positive test results, including abnormal high RNase L activity, that have changed with time or after some treatment while these dramatics on paper don't match up where it counts, in how one feels and in a way that sticks.

    It could be the modest benefits some notice with cognition or energy improvement, etc have more to do with reducing secondary infection activations or this combined with better stress avoidance tactics, resting more etc, as you allude. I suggest this is a common thread or story we've seen in many proposed ME/CFS treatments over the years, but not something representing getting at the roots of this condition and the improvement we really need to be able to live.

    I think this pattern has understandably caused a lot of arguments and distraction within this community, including respectable researchers. But I also think were coming to a point where we can all begin to see this ME/CFS headfake, IMO, and use this insight for better judgement in moving forward more swiftly and effectively.

    The excess calcium influx-glutamate excitotoxicity issue is an interesting juggernaut in ME/CFS brains to look at and try to untangle or treat effectively. Doing this could play huge dividends for us, but it definitely could use more eyes and attention from us and scientific research to be able to extract what this is all about.

    [This Message was Edited on 11/19/2008]
  13. ladybugmandy

    ladybugmandy Member

    in my case, after mono, i began having severe neck cramping and cognitive problems. also, my lymph nodes ached and i was very tired.

    there was no period of remission after the mono.

    if the simplest explanation is usually correct, i have to assume that somehow, the epstein barr virus infiltrated my brain and central nervous system and remains active.

    i just cannot stop believing that valtrex or some other antiviral is my best hope.

    of course, i am guessing, but what else can i do?
  14. winsomme

    winsomme New Member

    even Dr Bell's theory on mitochondrial dysfunction and resultant hypoxia (a very interesting theory at that) is not a new theory as it relates to CFS and treatments have been tried to address this problem...

    but any lack of "home run" like response to a treatment to address mitochondrial dysfunction doesn't mean that theory is incorrect or even the treatment unusable.

    it just means that we need more trials and more research and more sharing of info within the medical community on these topics to get to the bottom of it....which thankfully seems to be happening at a higher and higher rate now that CFS is getting more and more recognition as a legit condition.

    i just read in another thread from a poster that sees Dr Montoya that something like 70% had improvement on the Valcyte.
  15. waltz

    waltz New Member

    I don't mean it is a secret but that it is not generally public knowledge nor posted on any Web site. I don't know if you corresponded with them earlier or later than I did. But there is a reason why the video of Dr. Montoya's conference presentation was taken down from the site after it was up briefly. I was told it was outdated and they had much stronger data since then.

    I think people started out with expectations a bit high because they gave the preliminary study so much publicity. Realistically we shouldn't be expecting 90% of patients to improve 90% within one year.
  16. mindblower

    mindblower New Member

    "i just cannot stop believing that valtrex or some other antiviral is my best hope.

    of course, i am guessing, but what else can i do?"

    I get you about this. My ME/CFS symptom onset started with mono just like you and so many. It was a long and difficult process to finally realize what seemed an obvious cause was not a cause, but an opportunistic infection that subsided that was made possible by more upstream, prediposing processes.

    Consider our initial mono infections in ME/CFS as a diversion in a crime caper. It's dramatic and grabs our attention as it has, while the more serious crime being committed, "the real issues in this condition", attempt to go on undetected.

    Anyway, what you could do next is not necessarily decide that I'm right or wrong nor that anyone else is either of these also, but simply observe where well developed facts take you. Notice facts vs interpretations(beliefs), actual data vs the stories told about such data.

    It's a good place to start at any rate when feeling stuck.

    [This Message was Edited on 11/20/2008]
  17. ladybugmandy

    ladybugmandy Member

    waltz...may i ask who told you that the montoya team had stronger data now???? i am very interested, as i have not been in touch with k. loomis or dr. ablashi in quite some time.

    thank you!
  18. winsomme

    winsomme New Member

    again, people have improved and in some cases recovered using these treatments....

    so, based on that fact alone, i can totally understand patients wanting to try these treatments. not saying they should, but i understand the desire....and it is not totally unfounded.

    until we know why the people who responded to the treatments did respond, IMO it would be premature to conclude that they are across the board ineffective at helping PWCs.

    IMO there simply are not enough "facts" out there to conclude that a chronic infection is not at least in part at the root of CFS. and there are very smart researchers and clinicians who still feel this way as well.
  19. ladybugmandy

    ladybugmandy Member

    what if we are not able to induce latency to EBV due to genetic defect, as lerner thinks?

    what if the EBV has reproduced to the extent that extremely longer periods of antivirals are needed?

    it has been established that herpes virus infection does suppress the immune system and can cause the cascade of symptoms seen in CFS.

    so, yes...the genetic defect would be the actually cause of the disease but perhaps it can be managed with antivirals?

    i really cannot ascertain how many were helped with antivirals and how many weren't. i have heard many stories from both camps. are right. i suppose there isnt much evidence to recommend this treatment over any other yet.

    just going by a gut feeling...
  20. winsomme

    winsomme New Member

    i always get back to that outbreak of CFS in Incline Village....i have a hard time reconciling that with predisposing factors really being the root causes of CFS.

    also, haven't they done twin studies in CFS...i can't remember what the results exactly were...but i don't think they were overwhelming...
    [This Message was Edited on 11/20/2008]