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Elevated EBV, HHV 6 -- what does this mean?

Discussion in 'General ME/CFS Discussion' started by el_squared, Aug 30, 2015.

  1. el_squared

    el_squared

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    Hi guys, I was diagnosed with CFS at Stanford. I'm wondering if these elevated test results will be enough to get my on some antivirals? What do you think. The Stanford practitioner seemed to be mainly concerned with testing for IgG, not IgM.

    ebv ab vca, igg 370.0 0.0-17.9 U/mL
    c. pneumoniae igg serum 1:128 < 1:64
    m pneumoniae igg abs 212 0-99 U/mL
    HHV 6 igg antibodies 3.25 High
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Looks like you will need antibiotics as well. Dr lerner has found those with myco and cpn with high viral titres to ebv/cmv/hhv6 are poor responders to antivirals unless bacterial infections are also treated.
     
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  3. Eeyore

    Eeyore Senior Member

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    These results show that you have been exposed to the 4 pathogens listed, 2 viruses (EBV and HHV6) and 2 intracellular bacteria (m. pneumoniae and c. pneumoniae).

    You cannot get rid of the viruses - they are for life once acquired. They are also present in the vast majority of the population and most healthy people will test positive for both of these viruses.

    In theory you can get rid of the bacteria with antibiotic therapy, although I'm not sure if it would help. The elevated antibodies do not prove current infection since these can be cleared by the body on its own in some cases, but you may have active infection. This may or may not be clinically significant. Your results appear to marginally elevated - so while it's likely your immune system has seen them, you probably are not too far out of the band of normal in the healthy population, if you are out of it at all.

    It's possible that these are all incidental findings and have nothing to do with your ill health, and it's possible they are a result, rather than a cause, of your ill health.

    Studies have failed to show that there are increased antibody responses against EBV and HHV6 in ME patients. Dr. Montoya at Stanford has attempted treatment of ME patients with high HHV6 levels, although only in patients with very elevated titers, suggesting ongoing immune stimulation.

    The EBV theory of ME was started many years ago by a doctor at the CDC, and it has led patients and doctors down fruitless paths for many years. I've had ME since I was a teen and I still don't have EBV, which is rare - the vast majority of people my age have it. I have had HHV6 IgG measured, and it's generally been elevated to varying degrees, but it doesn't seem to vary with symptoms or to go down in times of remission. I did take antivirals once a long time ago and pushed it down, but it had no clinical effect and I felt the same. I'd urge you to be skeptical about the role of Herpes viruses (EBV and HHV6 are both in the Herpes virus family) in ME. Read some of what Dr. Byron Hyde wrote about them and their role in ME.

    It may be that they sometimes trigger ME in some patients, but that doesn't mean ME is a chronic infection with these viruses.
     
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  4. Eeyore

    Eeyore Senior Member

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    Oh I should add - if you had a recent infection, you might see an elevation of IgM rather than IgG. The latter is elevated in both chronic infection and post infection or post vaccination as the body retains immunity even after things are eliminated (but EBV and HHV6 are never eliminated).

    Also, EBV EA (Early Antigen) antibodies may suggest a regent infection.

    Another common herpes virus that you probably have (and I have) is called VZV, or varicella zoster virus. It is the cause of chicken pox and shingles, and once you get it you have it for life. It continually reactivates throughout life so immunity is retained and antibody titers remain elevated throughout life. My point is that almost everyone has it, and it's not really something to worry about.
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Just read dr lerners research, otherwise your just get alot of peoples different personal experiences and opinions.
     
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  6. Eeyore

    Eeyore Senior Member

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    Yes, there are several docs who still believe that herpes viruses are involved, but it's never really been shown conclusively, and it wouldn't explain me very well at all. Dr. Lerner's work is mostly about the role of herpes virus infection in the heart. He treats patients with antivirals and claims improvement. To his credit, Dr. Lerner is one of the few ME docs that actually does publish a lot of his work in peer reviewed journals. I do not think he's a quack. I'm not sure I agree with all his conclusions - but I think he's a truth seeker. He treats EBV with valtrex and HHV6 and CMV with valcyte (valcyte is a much more dangerous medication than valtrex - think long and hard before you try it and talk to your doctor at length about the risks). Personally I consider valcyte too dangerous, but that's for me. Only you and your doc can make that decision.

    Valtrex is likely safe in normal doses, although it's potentially more concerning in high doses. I think my bigger concern is that I do not believe efficacy has been shown. However, trying it may be reasonable if your doc believes it might help simply on the grounds that it's considered a safe drug. I suspect it won't help or hurt in most cases - but that's just my gut feeling on it. I'm not a doctor, and there are docs who would agree with me and those who would not.

    Just keep an open mind but also keep some healthy skepticism.
     
  7. halcyon

    halcyon Senior Member

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    I went to the Stanford clinic a few months back and it seems they might have done different tests on me than they did on you. They ordered several IgM and IgG tests as well as HHV6 PCR test for me. Did you see Amity Hall or someone else?

    I'm going to assume that you only listed the abnormal results, is that true? Was your EBV EA IgG/IgM negative?

    This appears to be an ELISA test rather than the IFA (reported as a titer i.e. 1:80) test that they gave me. Regardless, that result is normal. An ELISA test result > 5 is something to worry about according to the HHV6 Foundation.
     
  8. el_squared

    el_squared

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    I saw a nurse named Jane Norris. Getting the appropriate tests has been difficult, because I have an HMO that requires me to use Labcorp -- in other words, I couldn't go to the Stanford lab. As such, I had to get the list of wht Norris wanted, and get another doctor's office to figure out the codes for LabCorp. I'm not sure but I think this is most of what Norris asked for.
     
  9. el_squared

    el_squared

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  10. el_squared

    el_squared

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    I have responded to antibiotics over the years. Often it has seemed to be a sinus infection, but sometimes it isn't clear. Recently I was diagnosed with an infection of a bacterium called stenotrophomonas maltophilia. It responds to few antibiotics. I was responding when I took Levaquin but the physical side effects were bad so I stopped. Now I'm on Ceftin but I'm not sure it's working. This has been going on for nearly two months. I usually, finally, get better with antibiotics, but I know that I'm also harming myself by taking them. It's frustrating.
     
  11. el_squared

    el_squared

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  12. el_squared

    el_squared

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    I am interested in Lerner's focus on the heart. Has he published a book?
     
  13. halcyon

    halcyon Senior Member

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    OK, that explains it then. I saw Amity Hall and had the labs done at Stanford and they send off most of the tests to Focus Diagnostics. Did the nurse bring up any testing for enteroviruses?

    I don't believe he's published any books but here are some of his relevant research papers:

    A small, randomized, placebo-controlled trial of the use of antiviral therapy for patients with chronic fatigue syndrome.
    Lerner AM, Zervos M, Chang CH, Beqaj S, Goldstein J, O'Neill W, Dworkin H, Fitgerald T, Deeter RG.

    A six-month trial of valacyclovir in the Epstein-Barr virus subset of chronic fatigue syndrome: improvement in left ventricular function.
    Lerner AM1, Beqaj SH, Deeter RG, Dworkin HJ, Zervos M, Chang CH, Fitzgerald JT, Goldstein J, O'Neill W.

    Valacyclovir treatment in Epstein-Barr virus subset chronic fatigue syndrome: thirty-six months follow-up.
    Lerner AM1, Beqaj SH, Deeter RG, Fitzgerald JT.
     
  14. Eeyore

    Eeyore Senior Member

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    Well, long term abx may or may not be harmful - it's not a simple question. I would be somewhat concerned about long term fluoroquinolone use (this includes levaquin and cipro among others).

    Many on these boards seem to respond well to azithromycin or other macrolides, although I don't think it's related to its antibacterial properties. A recent article in Nature showed that zithro actually binds to and inhibits mTOR much like sirolimus (rapamycin), so it has immunosuppressive effects. Zithro is generally safer than other macrolide antibiotics but is not a completely safe med and there are (a few) reports of increased likelihood of TDP (a type of potentially lethal arrhythmia). I suspect that we do well on immunosuppression, which is perhaps why the rituximab trial seems to be showing efficacy.
     
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  15. Eeyore

    Eeyore Senior Member

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    @el_squared - I don't think he's published a book. He has published numerous journal articles though. You can find them on pubmed. He also used to have a website, but I haven't looked in years and am not sure if he still does.
     
  16. Ema

    Ema Senior Member

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    Yes he still does have a website and his major publications are listed there.

    http://www.treatmentcenterforcfs.com/cfs_publications/index.html
     
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  17. el_squared

    el_squared

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    No, please tell me anything you can think of that I should ask her.
     
  18. Ema

    Ema Senior Member

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    Did you have the full chronic EBV panel? You really need the Early Antigen IgG to determine if it is a chronic infection or a past infection.

    If you are going to try to treat HHV6, you will really need Valcyte and that is trickier to get than Valtrex because it requires regular labs to monitor liver function. Valtrex doesn't have much activity against HHV6 though.

    Artesunate is a possibility for herbal treatment of HHV6 that has shown good efficacy in vitro. You need a relatively high dose though of this med for it to be effective.

    Dr Myhill recommends the following dosage:
    I'm not sure how high the antibodies for CPn and MPn need to be before treatment is advised...supposedly there is a way to test by way of a reaction to NAC. I think there are some threads on this topic on the forum and also the CPn forum.

    I happen to think now that antibiotics and antivirals are working in many ways to reduce inflammation and as immunomodulatory agents rather than simply just killing off pathogens. Antibody tests can't differentiate very well between active infections and a hyperactive immune system. I think it's worth a try but keep in mind that it may be the immune system that is the problem, not a plethora of pathogens.
     
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  19. el_squared

    el_squared

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  20. el_squared

    el_squared

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    Yes, I know I have a messed up immune system. I was diagnosed with Celiac Disease 10 years ago. I have low white blood cells, all types. I seem to get these sinus infections and then I can't get rid of them.
     

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