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A review of EVB and CFS by Dr. A Martin Lerner

Discussion in 'Latest ME/CFS Research' started by anncavan, Sep 24, 2010.

  1. anncavan

    anncavan

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    Causal Relationship Identified Between Epstein Barr Virus and Chronic Fatigue Syndrome

    BEVERLY HILLS, MI September 23, 2010

    News Facts
    Epstein Barr virus(EBV) causally involved in 81% of 106 consecutive Chronic Fatigue Syndrome(CFS) cases
    Diagnostic serologic panel available for physicians treating CFS patients; diffuse and restricted component of EBV Early Antigen indicate abortive non-permissive incomplete virus replication
    CFS is the result of a non-permissive herpesvirus infection; one or more of EBV, HCMV and/or HHV6
    Use of long term antiviral treatments improve Energy Index Point Score, key measurement tool for EBV CFS diagnosis and recovery, with sustained significant improvements to quality of life for patients

    Background
    A review titled An update on the management of glandular fever (infectious mononucleosis) and its sequelae caused by Epstein-Barr virus (HHV-4): new and emerging treatment strategies by Dr. A. Martin Lerner was published today by the journal Virus Adaptation and Treatment. Following the successful May release of Dr. Lerners Subset-directed Antiviral Treatment of 142 Herpesvirus Patients with Chronic Fatigue Syndrome inVirus Adaptation and Treatment, the journal now publishes a deeper look at the common thread virus causing CFSEBV.

    His review is a culmination of over 20 years of EBV research. Dr. Lerner looked broadly at the virus make-up, and then narrowed to EBV patient demographics, EBV diagnostics, and EBV therapeutics and their efficacy.

    Starting in 1987, 98 consecutive CFS patients were documented. 87% were women, with the mean age of 42.3 years. They were all previously well, healthy, nonsmokers. They were not obese, hyperlipidemic, hypertensive, alcoholic or psychiatric patients. These demographics are consistent in the CFS community at large.

    Over the past 30+ years, diagnostics for CFS have evolved. Dr. Lerner identifies the most important as serum testing, 24-hour Holter Monitor(HM) testing, and clinical diagnostic assessment. It is universally accepted that the presence of serum IgM antibody to EBV viral capsid antigen indicates active EBV infection. It appears approximately 1 month after primary infection, and disappears within 6 months to a year. However, a more recent finding is that diffuse component of EBV early antigen indicate abortive nonpermissive incomplete virus replication. A defining characteristic of CFS patients is their inability to prevent nonpermissive EBV replication that leads to dysregulation of cellular metabolism.

    Dr. Safedin (Sajo) Beqaj, Director of the Treatment Center for CFS laboratory and scientific advisor to Lerners Foundation explains, We have developed a diagnostic profile for CFS that contains several disease specific assays including EBV, CVM and HHV6. These assays are based on viral gene product expression that determines the stages of the viral infection in patients with CFS. He goes on to explain that staging the viral infection in CFS patients is essential for the treatment of this disorder. So much so, that in recent studies using this diagnostic panel they were able to categorize subset classification patients with EBV, HCMV and HHV6 herpes virus infection(s). Throughout each subset, patients sustained significant long-term benefit with directed, individualized pharmacokinetic administrations.

    CFS patients universally suffer from palpitations, low blood pressure, high heart rates. However standard ECGs and stress tests were systematically coming back normal. The 24-hour HM was instituted, and heart related complications became evident. HM results ranged from abnormal oscillating T-wave flattening, abnormal oscillated t-wave inversions and tachycardia at rest. These abnormal HMs resulted in EBV CFS becoming recognized as a biomarker of CFS cardiac disease.

    The clinical diagnosis is the final, and arguably most important, piece in the CFS diagnostic puzzle. The peer reviewed and substantiated Energy Index Point Score (EIPS) is a universal CFS gauge that assists physicians, and patients alike, in the diagnosis and monitoring of CFS over time. The EIPS is used internationally and translated into numerous languages.

    The hypothesis of Dr. Lerners own research, as well as many of his peers, has always been that CFS is the result of an abortive, non-permissive herpesvirus (EBV, HCMV and/or HHV6) infection. CFS patients continue EBV, HCMV, and/or HHV6 herpesvirus abortive multiplication, but fail to achieve viral latency which is necessary for recovery. This hypothesis has now been tested through numerous cohorts, administering valacyclovir for suspected EBV CFS subset and valganciclovir for suspected HCMV or HHV6 CFS subsets. Through a pharmacologic, pharmacokinetic, metabolic, distribution and excretion review of antivirals, as well as published cohorts, this EBV review again substantiates their success. The use of long term antiviral treatments provides drastic improvements to quality of life for CFS patients.

    This review was performed by request of the journal, Virus Adaptation and Treatment. They identified the need to review the old and new definitive relation of EBV and IM to EBV persistent infection, and to relate the remarkable safe efficacy of valacyclovir (Valtrex) when given so that the blood levels exceed that necessary to inhibit EBV multiplication through the entire day, says Dr. A. Martin Lerner. The results are remarkable and return EBV CFS patients to normal lives. The therapeutic place of similar Valtrex treatment in IM and IM complications is emphasized repeatedly through my research.

    About Dr. A. Martin Lerner
    Dr. A. Martin Lerner founded the Treatment Center for Chronic Fatigue Syndrome (CFS) in Beverly Hills , Michigan. An Infectious Diseases specialist who was at one time plagued by CFS, he has committed the past 25 years to the diagnosis and treatment of CFS for patients around the world. In the past 50 years Dr. Lerner has written over 200 original articles spanning many areas of infectious diseases and virology.

    About Dr. A. Martin Lerner CFS Foundation
    The mission of this foundation is to advance research, treatment and dissemination of information leading to a better understanding of Chronic Fatigue Syndrome.

    About Chronic Fatigue Syndrome (CFS)
    Chronic Fatigue Syndrome, also called Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephalomyelitis (ME), affects as many as 4 million people in the US alone, by CDC estimates, with a quarter disabled. It affects more Americans than AIDS, lung cancer and breast cancer combined. Research by the National Chronic Fatigue foundation found CFS sufferers average age of death to be as much as 20 years premature to the average American. It is a multi-symptom disease, affecting the cardiovascular, immune and central nervous system. The most publicized symptom of the disease is the crippling fatigue, with most patients bed-ridden for all but a few short minutes or hours per day. To the naked eye these patients may look healthy, due to the invisible nature of the symptoms, many times causing confusion regarding its legitimacy.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    it interesting how he recommends valcyte for hhv6 and cmv. I have cmv and i have heard of others with hhv6 improve with famvir. I had no luck with valtrex, so sort of proves it doesnt help cmv. Famvir i think is worth a try for cmv and hhv6 as others have experienced improvement(blood tests also) with it and its not as toxic as valcyte or as expensive. I hope dr lerner keeps going with his cfs studies and treatments, i think he has found a sub set of cfs patients that may have a cause of their fatigue diagnosed and possibly not xmrv positive. Im sort of hoping im in that group as i think it will be easier to treat.

    cheers!!!!
  3. julius

    julius Watchoo lookin' at?

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    If this is right it is earthshattering news. Or am I reading it wrong?

    The link to the review doesn't work.


    ETA: What is the best way to get tested for these? I am Canadian and I don't know if we have the correct tests available up here. Would I have to have it done by VIP or something?
  4. dannybex

    dannybex Senior Member

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    Check out Julia Rachel's blog

    Hi Julius,

    Julia Rachel has posted a lot about her and her son's treatment on her blog. I believe she lists the tests there as well. Her son was in such bad shape a year or so back he was ready for hospice care...then they got into one of the Valcyte trials...and her son is doing a lot better, at least to the point of attending college part time.

    You can find her posts here on the forum, but here's the link to her blog as well:

    http://vlgonvalcyte.wordpress.com/



    She also stressed to me that vitamin/mineral/protein deficiencies must be addressed as well. They used Spectracell for that. Her son at one point had lost over 50lbs, but has regained 25.
    warriorseekspeace likes this.
  5. julius

    julius Watchoo lookin' at?

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    Wow, from ready for hospice attending college. That's something.
  6. LaurieM

    LaurieM

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    The correct link to the review is:

    http://bit.ly/9jWFS6
  7. glenp

    glenp "and this too shall pass"

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    Any others here?

    Have any others had experience with Valtrex - valacyclovir?

    glen
  8. SDP

    SDP

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    Very interesting post.

    As an aside, I am surprised that Mr L excludes those who have a point score above 5 from his diagnosis of CFS. Anyone who fits the CFS diagnostic criteria and can muster no more than "Daily naps in bed, a 40 hour sedentary work week (maybe) plus light, limited housekeeping and/or social activities" is clearly ill - albeit more mildly than those who are <5
  9. George

    George waitin' fer rabbits

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    So is this backed by Pharma? Are the pharma companies going to educate doctors about this and provide information for the lab tests and drugs? Cause if I took this into my doctor he'd just laugh in my face.

    Thank you for posting this Ann. I know the recent web thingy by Dr. Kormoff he said he's convinced that it's HHV-6 but he doesn't seem to be using antivirals to treat patients.

    And the abstract from Barcalona on EBV and XMRV seems to indicate that EBV may be a good culture for XMRV kinda like LnCAP cells.

    I'm soooo confused.
  10. InvertedTree

    InvertedTree Senior Member

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    I'm having a positive experience with Valtrex so far. I've been on it 2 weeks with no side effects and about 20% improvement (knock on wood).

    Thanks for posting this Ann. I've been waiting to read about Dr. Lerner's research regarding EBV.
  11. xrayspex

    xrayspex Senior Member

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    Hi, thx interesting
    Say George why do you think your doc would laugh in your face?

    and why would being xmrv+ not be a good idea to try valcyte etc? could val at least treat coinfection?

    I was experimenting with valtrex this summer wiht some improvement of OI but increased pain (herx?)
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    im wondering if xmrv is just like hiv in that its not the retro virus as such that gets u, its the retrovirus knocking out your immune system that then lets all the bugs in like ebv, cmv, mycoplasma etc they carey on the damage after the immune system is shot. I think treating the co-infection helps free up the immune system to help supress the retrovirus. I would be interested to know if any of dr lerners patients he has treated and improved were xmrv positive as well. mmm, food for thought.

    cheers!!!
  13. bakercape

    bakercape Senior Member

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    Thinking the same thoughts

    I'm thinking the same things. My CFS started with an EBV infection/Mono.

    I've allways wondered if treating for EBV would help me even if it is not the underlying cause of my illness.

    And I still wonder if the EBV is the underlying cause sometimes.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    bakercape, theres one way to find out, but can i suggest you try famvir has it has a broader range of effect like against cmv and hhv6 in some people.

    cheers!!!
  15. anncavan

    anncavan

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    I'm a patient of Dr. Lerner's... so I'm only speaking on what I understand based on our discussions. He thinks anyone above a 5 (when you push him he really means starting at 6 or above) is in the recovery period of CFS. So for example he himself suffered from CFS, and is only now a 7. He's able to work and care for patients, however is not able to handle any form of cardio(increase his heart rate). As so many with CFS, it causes heart irregularities and post exertional malaise.
    warriorseekspeace likes this.
  16. anncavan

    anncavan

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    Hi George. Dr. Lerner's work is NOT backed by pharma. He stays away from that, in an effort for pure research... not nudged in specific directions based on company objectives. Pharma companies can NOT education doctors unfortunately on these drugs (Valtrex for EBV, Valcyte for HHV6/HCMV) as these drugs are FDA approved for other uses. To get FDA approval for any use is an extremely lengthy and costly process. Once they have it, they don't try to get it again. Therefore these drugs are used in our instance "off label." It's completely legal, but drug companies can't promote it. This is why Dr. Lerner publishes articles and research reviews, so other doctors can see how they can be used successfully. Also, they're very helpful as support when trying to get insurance companies to cover them.

    For those interested in Dr. Lerner's work, he will be the final speaker on "Science Day" at the CFSAC meeting in DC on October 12th. There will be live web coverage. Make sure to watch!

    @LaurieM - thanks for fixing my link!!!
  17. SOC

    SOC Moderator and Senior Member

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    I was just reading at the hhv-6 foundation website that famvir is only weakly effective for HHV-6. Do you have better info about famvir and HHV-6? My daughter and I are doing very well on Valcyte, but it's always nice to know if there's a backup in case we start to have trouble with Valcyte. :Retro smile:
  18. mikipe2

    mikipe2

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    Thanks so much for that inside info anncavan!
    I'd heard before that Dr Lerner used to be sick with CFS, but after years of Valtrex, is now not considered sick, but it's interesting to hear that his definition of sick includes 7 on his scale.
  19. lcollins64

    lcollins64

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    Well I know that my Epstein Barr virus is always positive, everytime I get it checked. Also the CMV and the HSV I&II, My problem is when I try any of these drugs; from Zovirax, Famvir, etc. I become so very ill that I just cannot take it. Are we supposed to take a smaller dose or what? 21+ years into this hell and I'm still learning.
  20. lucy

    lucy Senior Member

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    I too think that EBV reactivation is a result, not a cause. In my country where I come from there does not exist such thing like mononucleosis in adults. As most children go to kindergardens, they get the EBV there, having little symptoms. So I am sure my EBV is reactivated both regarding my cultural background and my blood tests. Reactivation should be the result of a knocked-out immune system, including also that e.g. people do not get cold for years after getting CFS that was discussed recently in another thread. But if CFS is a feedback-loop illness, it is logical to work on at least one of the multiple conditions to try to break free from the loop.

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