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viral titres and antivirals

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by heapsreal, Sep 15, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi all,

    Those who have been on antivirals and had there viral titres return back to normal with treatment, did u feel better straight away or was there a lag before feeling better? I cant get viral titres done in australia so use lymphocyte sub set test and they have gone back to normal for first time in 4 years since i have tested them. Plan is to stay on famvir for another 6 months and then reasses and maybe come off, or have other just stayed on a lower maintenance dose. Im feeling ok but not great if u know what i mean, still have PEM if i over do it etc and a few other niggly symptoms.

    WOuld appreciate hearing from others who have encountered this.

    cheers!!!
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    bumping this up, have to be others with this experience they can share.

    cheers!!!
     
  3. ukxmrv

    ukxmrv Senior Member

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    I can't afford to have my viral levels very often checked so sadly cannot help here. When I started Valtrex my viral symptoms improved within the first month. Same with Imunovir. With Valtrex the first thing I noticed was that the horrible burning sensation in my body at night (and mainly the bottom half) was much better within a week.


    Congratulations on the change in your own Lympocyte test BTW!
     
  4. Timaca

    Timaca Senior Member

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    Heapsreal~ That is awesome that your lymphocyte subset panel is now normal!! May I ask what was abnormal before?

    It takes about 6 months for my antibodies to drop while on meds....and it takes me about 4-5 months to feel better on a med.....so about the same amount of time...but antibodies drop more slowly than how I feel, but they do drop.

    How long have you been on Famvir? That is awesome that you are seeing improvements!!

    Best, Timaca
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    my total lymph was high and main cd lymphocytes were cd3, cd4, cd8, these were the ones that remained high until my last test. The thing that helped me was famvir at 250mg twice a day which is a small doses compared to what dr lerner uses etc. I did 12 months then stopped for about 6 months or more where they all returned to high levels again and this time another 12 months at the same dosage and they have returned to normal, 3 months prior they were still slightly elevated. Also after the first 12 months when i stopped the first time i still had slightly high cd3 and cd8 numbers, i shouldnt have stopped till they were all within normal range. So i would say it took 2x12month periods of famvir to lower these. I am feeling slightly better each day, i just hope it continues.

    cheers!!!
     
  6. DANEL

    DANEL

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    i was wondering if you were still on the russian injections, i have to look up name and website, i would like to try.

    first you were on valcyte right and fam was better and then the shots made even a bigger improvement.

    could you explain?

    did you chose the particular meds based on the viral blood work, like some meds are better for certain virses, or just you experimented with all of them

    thanks do much
    d

    w
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Daniel'

    I never tried valcyte, i had ebv and cmv and it was a trial and error where i tried valtrex and famvir. I got nothing out of valtrex but famvir did help. Since using famvir there has been a few other people who have had their viral titres for hhv6 and cmv come down, so i think famvir has a broader range of action then most people realise.
    Cycloferon i first tried when i was off famvir and feeling crappy and noticed a clearing of brain fog straight away, when i restarted famvir with cycloferon i noticed a double whammy. Some tests i had on natural killer function showed cyclo improved parts of my nk function. i used cyclo off and on every few months. not sure on how much it improved my total viral load but i did feel better using it. Info on cyclo says its used for cmv infections and opportunistic infections in HIV. It is a slow improvement overall and dont feel 100% yet but since my normalizing of lymphocytes i am feeling better most days and also responding better to adrenal fatigue treatments, which i think initially didnt work for me has my viral load was still elevated when i was trying these things. Im using small doses of pregnenolone and looking into progesterone in small doses as i have read it can help sleep. So thats where im at. Im working fulltime and managing this ok, still need alot of rest on days off but slowly needing less, fingers crossed.

    cheers!!!
     
  8. mellster

    mellster Marco

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    I really would love to know what desirable viral titers are, either in the dilution nomenclature or totals (per dl). I had asked this on another forum about Dr. Lerner but got no answer so far. I understand that every doc must have their own philosophy on this and may keep it private to their patients (and that a few don't reliably produce ABs), but there must be some guidelines. For example, HHV IGG < 1:10 means likely never infected, so what is an acceptable value for a past infection that is kept in check, maybe 1:20 or 1:40 but not more? If we had some guidelines on this for the common viruses involved we could track our progress somehow :) cheers
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    cd8 lymphocytes was the main lymphocyte i was keeping an eye on as it is commonly elevated in herpes infections like ebv and cmv. cd8 ranges are .2-1, my last test was .87, the highest was 1.59, cd3 was also high and seemed to correspond with cd8 lymphocytes.

    cheers!!!
     
  10. mellster

    mellster Marco

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    Thanks, SOC - that's what I thought but I hope the top docs will come out with some rough guidelines on this, doesn't have to be fully accurate :) So far I only came across one statement that Montoya apparently recommends AV therapy at EBV IGG levels (VCA I think) 3 x normal and above.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Do we still think this chronic herpes infections is a sub group of cfs/me, some seem to respond really well and other dont. I dont think its to far to say they area infection of cfs on their own, maybe others have xmrv etc
     
  12. mellster

    mellster Marco

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    Well, there is the theory out there that XMRV enables the chronic herpes infections - if that's the case there is no real subset, only people who do better than others, but that's as likely as just having chronic herpes infections which would make this a true subset - guess time and research will tell.
     
  13. HTree

    HTree

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    Hi Mellster, All:
    Was just re-reading the "old " 2008 book from Dr. Dantini ("the New fibromyalgia remedy: stop your pain now with an antiviral drug regimen")... And he suggests/reads IgG antibodies that are 4x higher than reference range, as indicative of probable reactivation/active infection.
    This whole idea of very high IgG indicative of present, not past infection, is very new...so doctors who've successfully treated (the handful) with Avs I think each have somewhat different guidelines. But I think Dr. Montoya said 3 to 4x or greater above ref. ranges, and Dantini says 4x or greater...So these two at least agree somewhat. (although I think they look at each virus differently...).

    I have EBV IgG 3.5 up to 5X greater than reference range, and currently trying to decide Which antiviral to try first.... And which/if I should try an immune-modulator before or during or after...
    Any suggestions on the later I'd appreciate for my anecdotal data gathering!

    (Actually, there must be a Poll somewhere? Asking If antivirals helped; and if so, which one, etc? IS there such a poll yet? -Would be useful I think to capture all these threads!)

    Cheers,
    Htree
     
  14. xrunner

    xrunner Senior Member

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    Heapsreal,
    First time I tested I had CMV IgG titres over 50x the normal range, second time they were about 20x higher. I also had higher titres for EBV nuclear antibodies (600 something). I also had high titres to bacterial infections Toxoplasma, Borrelia, Bartonella. I also had very low NK cell activity and low lymphocytes.
    Viral and bacterial titres all came down with treatment, NK cells and lymphocytes also normalised. Yes in my experience, you should feel something shifting whilst you're on treatment straightaway. The treatment when it worked, it made me feel worse but I could feel inside that was kind of a good thing, as opposed to some nasty side effects of the medications.
    Then after you finish a treatment that works, you should feel better straight away, starting from a few days to a couple of weeks later. You don't need tests to tell you that, you just know it.
    However, note that in my case I never took any antivirals. With hindsight, I believe that in my case the treatment hit the key pathogen(s) that opened the gates of the immune system and allowed the subsequent party to which viruses were also invited. Once those were dealt with, I presume my immune system was able to rein in the viruses as it should under normal circumstances.
    All the best
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thanks xrunner, i am feeling better but just have some residuel fatigue which could be from bad sleep or adrenal hormones which have tested low or combo of both, so im working on that. But i was thinking that maybe once viral load is back to normal that there maybe be a lag similar to post viral fatigue like when a normal person gets mono and feel unwell for a few months even after the virus has cleared. Its a bumpy road but i feel im getting there.

    cheers!!!
     
  16. m1she11e

    m1she11e Senior Member

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    xrunner- Did you treat Mycoplasma infections with abx? I have heard of people who never treat the virus but when they bring down cpn and that family of infections, their immune system often times recovers and deals with the virus. I was wondering if this happened in your case?
     
  17. xrunner

    xrunner Senior Member

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    Hi M1she11e,
    My tests for Mycoplasma were negative, but I had elevated Cpn titres. My treatment has been based on antibiotics and antibiofilm agents. I'm sure my illness was caused by microbes but I do not know exactly which. The antibiotics I took would, in any case, have hit Cpn, Borrelia and Mycoplasma.
    My personal view is that it takes more than one microbe to get a person into a CFS situation. A virus may trigger it but that might just be last straw, as we tend to build up a load of microbes inside our bodies just by aging, mostly without realising it.
    I know that Borrelia/Lyme is severely immunosuppressive, as it infects B Lymphocytes. I know that many people infected with Borrelia also have Micoplasma issues and problems with herpes viruses. I know that Borrelia and EBV communicate and exchange genetic information. recently I have been reading about Simon Yu's protocol which targets parasites and seems to help resolve other infections as well, including viruses. I found that very interesting.
    My latest thinking is that we're dealing with a complex network of different microbes working together to overcome immune defenses and, in my mind, the key question is to identify and hit the ring leaders.
    I am becoming more and more convinced that one should hit microbes in the order of their complexity hence starting with protozoa/parasites/mold, then bacteria and viruses last. By the time you get to bacteria, these and the viruses may have already been dealt with by our immune system. This is broadly reflective of my own personal experience, except that I didn't specifically treat protozoa but some of the abx I took were also anti-parasitical.
     
  18. m1she11e

    m1she11e Senior Member

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    Thanks xrunner!

    Those insidious little creatures!! It is like science fiction!

    Im going to look at this Simon Yu. I kinds got off the researching too much because it was driving me crazy!! I havent had luck with the stonger anti virals and on Famvir, my viral titers did come down but I never felt any better even 6 months later. (Hey, that addresses this thread Heaps so this isnt a TOTAL hijack!! :-(

    I believe mold and fungus is a big one! I am not sure how to deal with mold living in FL and having limited resources but I KNOW it is the difference between me being upright or horizontal for the better part of the day. I also am trying to figure out how to deal with detoxing mold from the body. I know fungus plays a roll in there as well. Parasites I have addressed with natural herbs a long time ago. My client way back in the early days of CFS wrote "Guess who came to dinner." (Parasite book with an appropriate title) Have you looked into Vermox? Once I recover from my latest crash I intend on giving a round of that a go. (Not as a stand alone treatment of course)

    Lyme confuses and frustrates me because of the lousy testing we have. I did the IGENEX test and although it was negative, I have 3 Lyme specific bands. Lyme doc did put me on oral abx for awhile but I never saw a change. I cannot afford the ol IV pic line!!

    Anyway, I really like the idea of treating in the order you mentioned. I feel like the anti virals are just an ongoing thing. The titers just seem to go up and down and I feel no different when they are up or down. It seems that I would have to be on anti virals forever, This leads me to believe that the real menace has not been dealt with.

    Last questions (I hope...) Were all of the abx you took oral? Did you go through a horrible herx? Its kind of hard to plan the herx that never ends with some of these protocols. I think I did read your post about hitting a plateau and then adding the anti biofilm agents.

    I was doing pretty decent and I tried LDN recently at a very low dose. After about a week or so I hit rock bottom. Im worse than I have been in a long time. I did read that at first it wreaks havoc on the immune system before it reconstitutes it. For some, specially those with Lyme, this gives the little buggers a chance to go crazy. Lyme isnt the only reason a person might get sicker on LDN. It has gotten me thinking about a new approach though.

    Thanks so much for your help!!
     
  19. xrunner

    xrunner Senior Member

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    You're welcome. I had never heard of Vermox but I'll look into it. I'm not sure mold is an issue for me, though by chance I just discovered that the underfloor of where I live is extensively covered in mold which I could not see nor smell, nor had any reason to doubt that would be even possible. Creepy stuff. I believe Dr Shoemaker has a specific protocol for detoxing mold biotoxins and so does Klinghardt.
    Right now I'm looking at and both Yu and Klinghardt's anti-protozoa protocols and also the FL1953 of Dr Fry caught my attention. To answer your question, I only took combos of oral abx (I don't believe IV to be better than the most effective oral ones) and had only a few days of really bad herx, when I had to stop as I felt like was going to have a heart attack. Although I generally feel quite fatigued when on abx, my experience has been that herxes tend to start at around day 4 in a course of abx, peak around days 7 to 10 and then decline quite rapidly in intensity.
    All the best.
     

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