Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Mar 15, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i tried valcyte for 6 months and it did not work. all i have is 1:320 IgG for HHV6.

    K. Loomis of the HHV6 foundation keeps telling me that i should have an endoscopy and check for enteroviral infection. she says many people are finding this.

    has anyone at all on this board had this test???

    thank you
  2. ladybugmandy

    ladybugmandy Member

    thanks a lot for your response and please do let me know your results!

    i see that you can order oxymatrine this the same thing that dr. chia is using?

    i heard demeirleir uses quercetin for enterovirus...

    may i ask if you also have EBV, HHV6, or CMV?

    thank you!
  3. aftermath

    aftermath New Member


    Keep your eyes on Cort Johnson's Phoenix-CFS site in coming weeks. He will be posting a recent interview with Dr. Chia shortly.

    Apparently Dr. Chia is talking with a number of pharmaceutical companies with regard to development of an anti-enteroviral. I have a feeling that if a correlation is shown this summer when Dr. Montoya publishes his study, we will see a snowball of interest for the drug companies, other researchers, etc.

    <blockquote>He's still looking for a pharm company to invest in an antiviral, so even if you do show up positive, it might still be awhile before you can do anything about it with lasting effects.</blockquote>

    This is what Dr. Levine told me as well. Apparently, Chia was also using IV immunoglobulins--very tough stuff.

    With regard to having the upper GI endoscopy, how hard is it to find a gastroenterologist who is willing to play along? Did you guys end up running into "why is your doctor ordering this testing for a psychological disease" type stuff?

    mj0ey, my HHV-6 titer (Quest) was the exact same as your (1:160). My illness was of instant onset in origin, with a brutal 3 month long upper respiratory infection, with a 6-week flu-like illness earlier that year (no psych issues, etc). I am curious as to what your game plan is. I tried 4 months of aggressive abx (high mycoplasma IgG) with no changes whatsoever.

    I am curious as to your game plan for treatment at this point.
    [This Message was Edited on 03/15/2008]
  4. ladybugmandy

    ladybugmandy Member

    to found out where to send the slides after your endoscopy, please email:

    i had GI issues too but i know i 1st had mono....:(

    this is getting so hard..


  5. ladybugmandy

    ladybugmandy Member

    hi ria!

    where did you get your HHV6 tests done? apparently, only Focus or Specialty are accurate.

    my HHV6 IgG was a little elevated and this by no means proves active may suggest it. elevated IgM would prove it but this doesn't usually appear after a long infection.

    if you do test positive for enterovirus, u can take a oxymatrine (buy this only from dr. chia's supplier due to possible contamination from other sources) or quercetin. there is no actual drug yet, just supplements.

    please keep in mind K. Loomis knows A LOT and has been so much help to me....i am very indebted to her. however, she is not a doctor and not always correct. she told me dr. lerner would never treat me with antivirals because my titres were too low but he is treating me with antivirals.

    good luck
    [This Message was Edited on 03/16/2008]
  6. ladybugmandy

    ladybugmandy Member

    hi ria. i re-start valcyte tomorrow (monday) at 1/2 the dose i was originally on (450 mg per day) due to some liver enzyme problem.

    may i ask what your RNase L was? mine is VERY VERY high.

    i didn't realize you had seen dr. cheney....thats pretty neat!

    i heard valcyte does not have any immunomodulatory properties...just antviral...but i dont know this for certain. someone said montoya told them that.

    i am at my wit's end with this disease. if only i had SOME clue..ANY clue..that i am on the right track...:(

    thanks hon and all the best
  7. acer2000

    acer2000 New Member

    I think Valcyte has a hefty list of side effects that include things like anxiety, insomnia, GI problems, confusion, etc... so its hard to tell whats a "dieoff" or whats just a side effect...

  8. ladybugmandy

    ladybugmandy Member

    my rnase l was 1885 before treatment and normal was <50.

    after 5 months of valcyte, it was still 1265.

    i think the only thing that can help me is ampligen but i cant get it.

    i am so so sick ...i honestly dont know how much longer i can hang on.

    i dont even feel like i am mind is gone.
  9. pluis

    pluis New Member

    Ladybugmandy==please hang in there. There will be a day (and I hope not that long anymore) when this will all be a lot better....

    I know a CFS patient who started Valcyte b/c he tested positive for dr. Chia's stomach virus. Therefore I am a little confused...

    To me:
    Valcyte is given to patients who have a viral onset, and elevated HHV6/EBV/CMV.
    When you are positive for the stomach virus (dr. Chia) you are not given Valcyte. Am I right?

    Thanks!! Brainfogged Mariska

  10. aftermath

    aftermath New Member


    Hang in there.

    As I've said from the very beginning, this year is the first time I've EVER been optimistic after 13 years of this.

    1) If Montoya's study shows a correlation when it is presented this summer, it has the potential to OPEN THE FLOODGATES with regard to new research, etc. The whole ID community will be throw on its ear.

    2) Even with the clowns running Hemispherx running things, there is a good chance that Ampligen will finally release in 2008.

    Hang in--things are finally starting to change for the better.
  11. ladybugmandy

    ladybugmandy Member

    thanks guys. i was in bad shape yesterday...

    pluis...that is correct. you would not be given valcyte if you had the enterovirus but maybe the person also had the other herpes viruses active?

    aftermath...i always forget that there are people who have had this almost as long as i have on this board lol..thank you for reminding me to have hope.

    even if ampligen is available in the states, it will be a long time before it trickles into canada...and even longer before the public insurance companies here will pay for it. i'm guessing like 10 years.

    i keep reading and reasding (exactly what dr. lerner told me NOT to do) and still don't understand whether my defective LMW RNase L means that i have a genetic defect that will always prevent me from recovering or not.

    my head is spinning....

    thank you everyone. every post helps.

    wishing you all the best
  12. aftermath

    aftermath New Member

    I'm bringing this thread back to top in the hope that someone can answer as to what hoops they had to jump through to get a gastroenterologist to do the endoscopy.

    Are they generally willing to do this?

    I know our diagnosis is considered sketchy by a lot of mainstream docs.
  13. waltz

    waltz New Member

    pluis, may i ask who is the doctor treating the cfs patient who tested positive for enterovirus with valcyte?
  14. aftermath

    aftermath New Member

    I don't believe that Valcyte is effective for enterovirus.

    That is why Dr. Chia is using oxymatrine and trying to get interest from a drug co.
  15. ladybugmandy

    ladybugmandy Member

    jam...thank you for the kind words:)

    symptoms of enteroviral infections are GI symptoms - mainly upper GI i think, such as nausea. i am not 100% sure about this though!

    dr. lerner has me on valcyte now but only at 450 mg a day due to some liver enzyme elevation.

    i did complete 6 months of valcyte before i saw dr. lerner, at 450 mg twice a day.

    i am now going to try to be patient, because i have run into a few people who say it took them years on antivirals to see improvement..and i have had CFS a long time.

  16. waltz

    waltz New Member

    Why is she recommending the enterovirus testing? What does it have to do with the HHV-6 foundation?
  17. ladybugmandy

    ladybugmandy Member

    hello. she is recommending enteroviral testing because of dr. chia's study showing enterovirus in 89% of CFS patients by tissue culture.

    i don't think it has anything to do with the hhv6 foundation. i think she is just trying to help...

  18. waltz

    waltz New Member

    Thanks for the info, ladybugmandy.

    Has anyone here tested for both? I'm curious how many people test positive for both the enterovirus by biopsy, and HHV-6, EBV, CMV, etc.
  19. ladybugmandy

    ladybugmandy Member

    hello. i think aftermath sees dr. levine and said she is waiting for results of some biopsy samples she sent away.

    levine usually answers her email. perhaps someone out there can email her?

  20. aftermath

    aftermath New Member

    Ms. Loomis is in touch with many of the top ME/CFS docs out there.

    Obviously, the docs are looking at the role of HHV-6 in causing ME/CFS. Still, HHV-6 is thought to work in tandem with other viruses (Dr. Montoya's hypothesis for ME/CFS involves interaction with EBV). Enterovirus may be another one of these.

    Ms. Loomis is often asked about people with lower HHV-6 titers. She is just trying to pass along her best info--that a lot of top docs are seeing enterovirus as well.

    The HHV-6 Foundation is a great outfit. We can only hope that they broaden their horizons, as they really have our best interests at heart.

    Yes, I am a patient of Dr. Levine (although I do not have her e-mail). When I first saw her in December, she mentioned that she had sent some samples to Chia's lab but that she had not gotten them back.

    I asked about this during subsequent visits and she somewhat steered me away from it. The last time I was there (a month or so ago), I asked again and she said that the best thing to do is for people to get their own GI doc to do the stuff. She again steered me away from it, as she was not a fan of the treatment (it was either IVIG or IV interferons--I forget which).

    The next time I go there, I am going to ask her to refer me to someone. I'd like her to "grease the wheels" with a GI doc so I don't have to deal with convincing someone that ME/CFS is real, etc. I'm sure that she must know someone at Sinai (where she sends people for the tilt test).

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