Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jun 22, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i emailed k. loomis re: montoya's results. this is what she said:

    Positive cognitive improvement and improvement on some subscales for fatigue, but not the overall MFI-20.

    (MFI-20 = multidimensional fatigue inventory)

    [This Message was Edited on 06/22/2008]
  2. ladybugmandy

    ladybugmandy Member

    5 drug companies and 5 diagnostic companies in attendance at the conference.

    k. loomis believes better determination of the subsets of CFS is needed for better results.

    she asked me not to quote her, but they are "cautiously optimistic".

    she eluded to a difference between an "active" infection (which valcyte would target) and a "smouldering or simmering" infection. i asked her to clarify the difference and am awaiting a response.

  3. ladybugmandy

    ladybugmandy Member

    "smouldering infection" = abortive infection. It throws of cytokines but does not actually replicate.
    This is what Kondo says is happening. We will issue press releases tomorrow! - k. loomis

    (i think dr. kondo is a japanese researcher)
  4. ladybugmandy

    ladybugmandy Member

    yes...montoya has tabulated and reported his results at the HHV6 conference.

    i am not sure how to interpret what k. loomis said about overall fatigue.

    there should be a press release tomorrow.

  5. ladybugmandy

    ladybugmandy Member

    please see consuegra's post for detailed results!!!!!!

  6. Lichu3

    Lichu3 New Member

    I don't expect anything super-spectacular since this is such a small study but baby steps, everyone! Some proof of improvement due to antivirals at least may get the ball rolling on more biologically-based research.
  7. acer2000

    acer2000 New Member

    Well heres hoping they do a multi center trial and that they follow the patients for at least as long as it took for the patients not in the trial to get "better". Sounds encouraging, for those who fit that profile...
  8. chrissy12

    chrissy12 New Member

    Appreciate you finding the answers we have all been waiting for these last few months. Do you know if k.loomis spoke of what the subsets may be where there is improvement in the fatigue? Maybe, it will come out in the press release. Thanks for all you help. Cindy
  9. sascha

    sascha Member

    for more inf. on the conference.

    I saw Dr. Montoya on June 6th, and asked about conference coming up when he would submit his findings- he said the research study was "successful."

    i thought about this- it seems that must mean the viral titer counts went down after course of valcyte treatment. i don't see how fatigue would be lessened so soon after conclusion of the trial. i would think that could take quite a long time.

    i just finished valcyte two weeks ago. i feel positively euphoric being out from under the toxicity of the valcyte. i do feel signs aside from that of being better. i think. but i am so rickety and weak and wasted i won't be able to know for some time.

    and the mental clarity aspect- i had forgotten that- i did experience improvement on that front while going through the valcyte. that is another marker he includes as evidence of success for the valcyte trials.

    the exhaustion phase is much more problematic i should think, and takes much longer to resolve.

    really interested in the "active" infection vs. the "smoldering/simmering" infection. would like to understand that better.

    thank you!! Sascha
  10. ladybugmandy

    ladybugmandy Member

    well..from what i understand, a smoldering infection is one where the germ is still pumping out proteins and affecting the immune system but not replicating completely.

    i think this is what lerner has been saying all along! that's why he tests for antibodies to the early gene products of the viruses.

    now, apparently, kondo is saying this as well....?

    i just don't understand why lerner isn't being credited for the entire concept. he told me he has been saying this stuff for 20 years and no one would listen.

  11. gettingwell

    gettingwell New Member

    Does Lerner seem to think that Valcyte is not effective for a simmering infection and only effective for an active infection?

  12. ladybugmandy

    ladybugmandy Member

    this i do not know...i have been trying to find anything on the net about smoldering infections in general but wasn't able to find much.

    since lerner believes the viruses are not necessarily replicating entirely and he still uses valtrex, i assume he must think the valtrex helps smoldering infections...

    i have no idea about the valcyte....

    this will require a trip to the science and medicine library, where i haven't gone in years since i began getting sicker!

  13. Lichu3

    Lichu3 New Member

    the HHV-6press release posted here by a member. (See other post with "Kondo.")

    Something that might be of interest: researchers studying EBV-associated cancers note that the virus is also in a latent (non-replicating) stage. There is promising work looking at stimulating these EBV-infected cells (using things like sodium butyrate) into a lytic replicating state. Once the cells are replicating, they can then be killed off using antivirals.
  14. ladybugmandy

    ladybugmandy Member


    i often wonder about our cancer risks. i have heard that chronic epstein barr often results in lymphoma but dr. lerner said its really not something that happens often unless one is immunocompromised.

    are you sure the virus is latent in these cancers? most of the articles seem to be over my head.

  15. Rafiki

    Rafiki New Member

  16. Slayadragon

    Slayadragon New Member

    Aren't all of us immunocompromised?

    NKC's are part of the immune system....
  17. Slayadragon

    Slayadragon New Member

    Has Montoya or Lerner made comments regarding the likelihood that the viral load will start to creep back up by the time the patients recover from the stress of the Valcyte experience using that heavy-duty protocol?

    Will Montoya be following his study participants into the future to see?