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Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 24, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Cort

    Cort Phoenix Rising Founder

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  3. Sasha

    Sasha Fine, thank you

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    Amazing results he's been getting with his patients! Thanks for writing this, Cort.

    I struggled to follow this a bit (no brains today) but is the upshot that there's no way of getting a test for any of the viruses in these peculiar manifestations ("permissive", "gene fragments" etc.) to demonstrate that you need treatment for them?

    Is he somehow managing to detect these infections anyway to know which drug to use for which virus? Or are anti-virals general in their nature?

    Sorry to ask such basic questions, they are no reflection on your powers of explanation! I just have no medical background and easily lose the plot on this stuff.

    I'd love to be able to go to my NHS doctor in the UK, show him some data that indicate I need a test, get referred to a virologist, get the right drug... can't do it without some hard published data &/or a clinical summary from Dr Lerner written for doctors, I think. I wish I knew how to get Dr Lerner's treatment outside of his clinic! :cool:
  4. gracenote

    gracenote All shall be well . . .

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    This is fascinating. Thank you so much, Cort.

    I'm curious if there is any correlation between the heart issues Dr. Lerner finds and what Dr. Cheney talks about.
  5. Cort

    Cort Phoenix Rising Founder

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    There are antibody tests for these early gene products - I don't know how hard they are to find but they're definitely available. You might want to contact his foudation for more information.
  6. Cort

    Cort Phoenix Rising Founder

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    You certainly gave it your best shot. About 25% of Dr. Lerner's patients were non-responders altho the data suggested that some of them simply need to be on the drugs more. You cant say that about you. (You didn't have an extra infection did you?)

    I think Dr. Lerner's approach will have differing effects on different people; what I was impressed by was the number of people who nearly fully recovered (@30%) and the number of people who very significantly recovered. I've never seen numbers that high before; this treatment regime, while long and expensive, really does appear to work very well for a good chunk of CFS patients.

    Along iwth them will be people who responded but in a milder way and those who didn't respond at all. I hope more of Dr. Lerner's patients will comment on how they're doing or did.
  7. Sasha

    Sasha Fine, thank you

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    Thanks, Cort - I'll do that. :Retro smile:
  8. Sasha

    Sasha Fine, thank you

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    I doubt that many people who did great on Dr Lerner's protocol follow this forum - they will be recovered and getting on with their new lives! We are probably a self-selected bunch on Phoenix Rising (i.e. the quite severely ill).

    I just wanted to flag up that if we hear from folk who didn't do well on it (and Ladybugmandy clearly gave it a good go) we shouldn't take that as representative of the effectiveness of Dr Lerner's treatment and feel discouraged.
  9. alex3619

    alex3619 Senior Member

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    Fantastic Lerner Paper

    Hi Cort, I was just reading this article and thought I would post something here, only to find you had aready posted it - excellent!

    Here is some stuff I selected from the paper as very interesting, but the full paper is very much worth reading and discussing:

    Subset-directed antiviral treatment of 142
    herpesvirus patients with chronic fatigue
    syndrome
    A Martin Lerner1
    Safedin Beqaj2
    James T Fitzgerald3
    Ken Gill4
    Carol Gill4
    James Edington4
    1Department of Medicine, William
    Beaumont Hospital, Royal Oak;
    2Wayne State University School of
    Medicine, Detroit; 3Department
    of Medical Education, University
    of Michigan Medical School, Ann
    Arbor, Michigan; 4The Dr A Martin
    Lerner Chronic Fatigue Syndrome
    Foundation, Beverly Hills, Michigan,
    USA

    Virus Adaptation and Treatment 2010:2 4757
    http://www.dovepress.com/getfile.php?fileID=6394

    Group A CFS responders and nonresponders were similar
    for sex, age, BMI, and distributions of single and multiple
    herpesvirus subsets (Table 4). However, these patients did
    differ in average duration of CFS illness prior to initiation
    of antiviral treatment (7.3 years for nonresponders versus
    3.9 years for responders, P = 0.005). Duration of antiviral
    therapy for responders averaged 2.70 years,

    It is unclear whether XMRV gamma retrovirus infection
    initiates the immunosuppression which may be responsible
    for CFS. Nevertheless, specific herpesvirus antiviral
    treatment reversed CFS illness in 79 of 106 Group A CFS
    patients. Earlier studies suggesting a herpesvirus CFS causation
    had not used either the diagnostic criteria or long-term
    herpesvirus therapy, nor had previous herpesvirus CFS
    research separated groups A and B CFS which is critical to
    these results.4,5

    Cardiac muscle disease, syncope, chest pain, positive tilt
    table tests, tachycardias at rest, decreased left ventricular
    ejection fraction, and left ventricular dilatation improved and/
    or disappeared with antiviral treatment. The abnormal HM
    is a reliable biomarker of CFS cardiac disease. The EIPS is
    integral to follow severity and reversal of CFS illness.

    Questions about the pathogenesis of CFS remain. There is
    a preponderance of tick-borne B. burgdorferi, and Anaplasma
    and Babesia coinfections in Group B CFS patients. Studies of
    possible antibiotics in patients with suspected chronic Lyme
    disease need to consider the possibility of an unrecognized
    presence of Group B herpesvirus CFS.

    We continue valacyclovir/valganciclovir until the EIPS
    is 7. If no further antiviral therapy is necessary, the CFS
    patient now independently maintains herpesvirus latency.
    The biologic parameters to be followed in this ongoing
    process are critical in our diagnostic panel and are described
    fully under Methods. These are EBV VCA, IgM (returns to
    negative), EBV, EA-D (decreases and returns to negative),
    HCMV IgM p52 and IgM CM2 (return to normal), and
    HM abnormalities (eg, T-waves normalize and tachycardias
    disappear). This thesis predicts that mRNA to intermediateearly
    herpesvirus genes is circulating in mononuclear cells
    in the blood of CFS patients, but this mRNA is not present
    in healthy subjects.
  10. Kati

    Kati Patient in training

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    I wonder what's his take on XMRV?
  11. Cort

    Cort Phoenix Rising Founder

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    Good point Sasha. Dr. Lerner's study should speak for itself. He really had very little to do with the study itself - he saw his patients and inputted his data and then this group of volunteers put the data into the computer and analyzed it. They looked at 10 years of data - which to me means its very solid. I'm sure the research community will want a placebo-controlled, double blinded treatment trial but if I understood it correctly, all of his patients are in there - it really seems like a solid piece of work.
  12. anncavan

    anncavan

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  13. Sasha

    Sasha Fine, thank you

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    Thanks, anncavan - that's a great site generally and includes a summary for patients as well as doctors. Brilliant!:D
  14. KC22

    KC22 Senior Member

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    I am happy to see the research paper. Dr. Lerner has dedicated his life to the research of this disease!!!
  15. hvs

    hvs Senior Member

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  16. gracenote

    gracenote All shall be well . . .

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  17. hvs

    hvs Senior Member

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    Great to have this paper. Patients can take it to their GPs or maybe an ID doc and at least have a fighting chance of having them consider it.
  18. jimbob

    jimbob ME/CFS84-XMRV+

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    very, very interesting Cort, thanks for the info. I think were closing in on this whole puzzle!
  19. kurt

    kurt Senior Member

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    Congratulations to Dr Lerner, how amazing that this has been so low profile in the CFS world all these years.

    And this is personal, I had an EKG that showed abnormal T-wave, but that was a few years before I had the 'killer flu' that led to disabling CFS. Maybe there is some heart precondition that makes someone vulnerable to the herpes flare-up?

    I hope all of the CFS advocacy groups, CAA, WPI, IACFS/ME, etc. are paying close attention to this report.
  20. flybro

    flybro Senior Member

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    pluto
    Sasha

    if you have any luck with NHS GP/Consultants can you let us know about it, and what papers helped you with them.

    I am living in hope that the NHS will provide XMRV tests, and more accurate virus profiles for the common CFS viruses, I am pretty sure I haven't been tested for them.

    have you had any luck with any NHS testing.

    I have had urine in my blood for years, the local practice with out informing me assumed it was something todo with my menstrual cycle, and that would have been fine had I not had a hysterectomy 14/15 years earlier. When they realised, I was sent to the nephrology clinic and told i have nephritis ( which is leaky kidneys from what I can gather)

    This is really odd, since I started taking clarythromycin my urine seems to be free of blood. That makes no sense to me at all.

    I cant see hw the two would be linked.


    sorry for the ramble, I started free wheeling.

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