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Test results and antivirals success, what are high titers, what tests?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Ocean, Sep 21, 2012.

  1. Ocean

    Ocean Senior Member

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    I read that in Monotoya's study "The total number of patients treated today is 30, 26 had 'elevated titers' and 4 had 'low titers.' Of the 26 patients with 'elevated titers,' 25 have had a dramatic recovery. Of the 4 patients with 'low titers,' none have responded."

    What is considered high and low for HHV6 and EBV? And also what specific test is being referred to: IGG, IGM, etc?

    Thank you!
  2. Scavo86

    Scavo86 Senior Member

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    If I remember correctly the IgG for HHV6 had to be over around about 1:620 for inclusion in the study, someone will no doubt fine tune me on that but it was certainly in that ballpark. They were going up to over 1:1100 though.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Of interest to the aussies out there, you will have a hard time getting viral titres measured, all you will get is pos or neg to igm or igg. igm is a new infection and igg is an old infection but the best way we have to tell if these old ebv or cmv infections are reactivating is to get a lymphocyte sub set test and if cd8 t cells are high then that can indicate that those viruses are still causing trouble. ANy GP should be able to order a lymphocyte sub set test, but probably wont know what he is looking at??

    cheers!!!
    Hanna and vli like this.
  4. vli

    vli

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    Yeah that's what Dr E told me.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If one is sure they have cfs/me and one of the big potential biomarkers for cfs is poor nk function, then there is a good possibility that those diagnosed with cfs have crap nk function. Now if one just tests positive to past infections IGG antibodies to any of the herpes viruses no matter if titres are high or not, i think that there is a very good chance these viruses are causing problems as nk cells in healthy people are what helps keep these viruses latent. I just dont think viral testing is anywhere near accurate to say if they are active or not. I think the only way to tell if its an issue is to do a therapuetic trial of antivirals, probably famvir as its very safe and has a wide range of activity. I think one should give it 6 months to notice if its helping and probably then will need to be on them for a few years. Also i dont think its a cure but definately one can improve if these are an issue.

    Those that can get all the testing done, viral titres, nk function and lymphocyte sub set testing, then go for it. But if one cant but has a viral onset and can get a script for antivirals or another way of getting treatment, then i reckon rolling the dice at trialling famvir has a good chance of helping one improve. Off the top of my head i reckon $600 for a 6 month trial of famvir, if it doesnt work at all then it cost u $600 to find out, but it has more of a chance of helping then many things we have all tried from the health food shops and im sure we have all spent more then $600 on things that havent helped.

    Knowing what i know now and if i was living in the UK where testing/treatment is non existent, i would be finding away to get on some famvir. Its not a cure but if it can improve someone 2-3 points out of 10 then i think its worth it.
    Really all many of us have for treatment is trial and error. Thats what options the medical systems have left many of us.

    cheers!!!
    vli, SOC and Hanna like this.
  6. Ocean

    Ocean Senior Member

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    Are they always listed in that format "number: number"? I don't think my results were like that, I'll have to dig out the results and see. I think mine was just one number only.
  7. Ocean

    Ocean Senior Member

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    I'll ask my doctor about this. Thanks for bring it up.
  8. Ocean

    Ocean Senior Member

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    Is NK function easy to get tested or one of the special tests done only at a few places? Thank you.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    NK function is quite hard to get. In australia it would only been done in research studies which is how i got it done. As for America i would say the cfs gurus like Klimas, Peterson etc would have access to that type of testing.

    cheers!!!
  10. RUkiddingME

    RUkiddingME Senior Member

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    Hi Scavo; been curious about how things are going with Dr. Kogelnik. I would be interested to know if you will be going on Famvir as I am on a high dose right now and we could compare stories thanks! :)
  11. Scavo86

    Scavo86 Senior Member

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    RUkiddingME I am on hiatus with Dr K as it stands, the New Year is going to bring some news from him I believe and so I am going to see how things pan out with an announcement imminent. Failing that, I will not be on Famvir, not because I don't want to give it a shot but because I have HHV6, EBV and CMV all knocking around in my body and so Dr K thinks I should be kicking off with Valcyte. How is Famvir working for you though?
  12. atoska

    atoska

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    I have been seeing Dr Montoya for two years and for him high titers are:
    EBV EA (early antigen) 160 or higher - He also measures EBV EBNA and EBV EA
    HHV6 640 or higher - he also measures HHV6 (PCR)
    But he also says that titers vary a lot form lab to lab. So he doesn't let me get tested in any other lab but his.
    My EBV titers were 160 and he is treating me with acyclovir. My HHV6 titers vary from 160 to 320, but haven't gotten high enough for treatment.
    Ocean what Montoya study are you referring to?
    Last time I was there they took a lot of blood from me to be in his study. I thought his study was lipkin's study... but the only thing that i've heard about lipkin's study is that noXMRV was found. But I know that in Dr Monotya's study they also looked for immune disfunction's and other pathogens..
    Hope someone is getting closer to the answer!!:)
  13. madietodd

    madietodd Senior Member

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    From Klimas' lab:

    My EBV IgG just came out positive at 31.68 (positive if >20). IgM is negative.
    HHV6 is positive at 1.76 (positive if >1).

    These scales are obviously different from yours. How do I translate?
  14. Ocean

    Ocean Senior Member

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    Thanks for all the info on this thread everybody. I haven't had a chance to look closely yet but I definitely will especially after I dig up my lab results. Thank you, appreciate it!
  15. atoska

    atoska

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    Hi Madietodd.. I wish I could tell you how to translate from your scales to mine...
    But I have no idea :(
    They seem so different. Are you seeing Dr Klimas? What does she say?
  16. madietodd

    madietodd Senior Member

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    I see her partner, Dr. Rey. I tested positive for Lyme, which has to be treated first, so we haven't thoroughly discussed my titers. I'm busy educating myself so I'll have excellent questions when I see her again, in March. Like - how high are these numbers?
  17. atoska

    atoska

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    haha.. yeah... excellent questions ;)
    Every time I go to the doctor's I have a two page list of questions to ask! The bad part is that some doctor's know less than we do about our illnesses...
    I know that IgM is suppose to mean that you have an active infection at the moment. IgG antibodies high just mean that you have passed the infection.
    But some doctor's think that if the number of antibodies IgG are high enough, that could also mean that the virus has reactivated.
    I don't think that your titers are very high.. and that is a good thing, the less things we have going on wrong, the easier it is to get better ;)
  18. August59

    August59 Daughters High School Graduation

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    Dr. Montoyas latest study is a multipathogen study and I believe he just raised the number to be tested from 450 to 600. I heard they were taking about 8 - 10 vials of blood. Some of the original study participants were a little upset because they thought the study was almost done because they gave blood a year ago, but in fact he has started the testing yet.

    Originally his study was not suppose to have anything to do with Lipkens - CFI study, but I personally don't see why it shouldn't because they are looking for almost the same thing. The one big difference is that Montoya is strictly serology and Lipkin - CFI is going to use at least some "Spinal Fluid" samples.

    That's the last that I understood, but it could have changed by now!
  19. anniekim

    anniekim Senior Member

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    Hi Madietodd, do you mind me asking what test was used for your lyme test? Many thanks. Will treatment be antibiotics? Many thanks
  20. madietodd

    madietodd Senior Member

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    I'm in the US, but maybe you can figure out what's comparable. Dr. Rey ordered this test: http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=6646&labCode=AMD. She called in 6 months of doxycycline for me, but I saw a local lyme doctor and he had me on it for a month.

    I feel enormously better from taking the antibiotic, now that I'm off it. I'm off the couch and cooking again, and I'm going out easily for groceries and such.

    My symptoms exactly mimicked a gradual CFS slide......it was just luck that I thought of asking for the Lyme test. I never saw a tick on me, never had a rash, haven't gotten a "flu" in over a year.
    anniekim and heapsreal like this.

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