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Valcyte or not....my question

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by soxfan, Jun 16, 2011.

  1. soxfan

    soxfan Senior Member

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    My doctor will test for anything I ask...according to my EBV test it was elevated but not like the HHV6. I was told the EBV is somewhat active? My level was 640 but it didn't give the referance range.

    Where would he have the blood sent to for the PCR DNA? If I can provide him with information he would be happy to do it for me. I see him next Tuesday so hopefully I can have this done. How about the HHV6 testing? Should I also have that done over too? Thanks undcvr!
     
  2. xrunner

    xrunner Senior Member

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    I would suggest you read what you can find from the latest (past couple of years) Lyme-related conferences. In particular excerpts from presentations given by Dr Richard Orowitz and Dr Burrascano who have treated thousands of patients over the years.
    The view that is emerging is that chronic Lyme is a multi-coinfection syndrome involving different microorganisms and states of toxicity.Another important issue is that of biofilm which makes antibiotics useless.

    My personal view is that CFS itself is a multi-coinfections syndrome and not a single bug disease process. There may be a particular bug at some point that tilts the balance of power in the immune system but it's the collective and integrated power of various micro-organisms that keep our bodies ill. That's my personal opinion borne out of my healing experience.

    Antibiotics, antivirals or other anti-microbials, naturals or not, by themselves are unlikely to work. The problem you're dealing with is complex and taking one medication here or a couple of supplements there just won't work. Well, it hasn't worked for me. And it doesn't seem to work for many others either, according to those doctors.

    All the best
     
  3. soxfan

    soxfan Senior Member

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    I was actually treated for Lyme by Dr. Horowitz in NY. I was with them for over 2 years and they gave me abx, herbals, supplements etc.. but I still didn't get well. They also tested me for everything you can imagine..took 14 tubes of blood at my first appt.
    I finally stopped going there because they would have just continued on with the abx and since it was not helping my major symptoms I quit. I will never know if I had Lyme or not. My test was totally negative but because I live in NH I believe they assumed it was Lyme. I believe all along it was CFS.

    I can't say I know everything about Lyme, coinfections and other bugs but I spent over 2 years reading everything and anything because I too thought that is what I had until I wasn't getting better....

    The problem is the doctor I am seeing in Boston (Dr. K) doesn't seem to do much in way of treatments so I am not sure really where to go from here. I have never been on any anti-virals which is why I thought it could be a possibility for me.
    At the moment I am taking LDN (trying to work my way up) and some NT factors. I really don't know what else to do at this point. Thanks for your thoughts!
     
  4. Timaca

    Timaca Senior Member

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    Soxfan~ For EBV, consider the tests listed here: http://chronicfatigue.stanford.edu/infections/herpes-tests.html and perhaps include this test as well since it seems to look specifically for chronic infestions: http://www.focusdx.com/focus/1-refe...&S2=1&test=&sp=40480&Keyword=EBV IgA#an_40480
    Focus also seems to have several PCR tests for EBV if you are interested.

    Since your HHV-6 IgG is high you could also consider retesting that at Focus Lab, as described on the Stanford website.

    Best, Timaca
     
  5. soxfan

    soxfan Senior Member

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    Thanks Timaca...this has been very helpful to me. I will take this information to my doctor's appt. next week.
     
  6. Timaca

    Timaca Senior Member

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    Soxfan~ You might be interested to check out the "Instructions and Order Forms for Laboratory Tests" here: http://chronicfatigue.stanford.edu/resources/ (scroll down until you find it). It may help you to print out the "CFS requisition form for Focus Testing" and then read the "Instructions for Patients being tested away from Stanford".

    Best, Timaca
     
  7. aquariusgirl

    aquariusgirl Senior Member

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    Yes, but Timaca, aren't you stuck taking antivirals and equilibrant because when you try and come off them, yr titers bounce right back up?

    I appreciate you have made a great deal of progress on them...but how do you come off them if you still have the underlying immune deficiency?
     
  8. Timaca

    Timaca Senior Member

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    Hi aquariusgirl~ I know several people who have either improved greatly or gotten totally well taking antivirals. One person is still on acyclovir (or valtrex--not sure which one) because he lives such a full and busy life he doesn't want any chance of relapsing (8 months of valcyte cured him). I think he was off all antivirals for awhile, but his life got so busy with the start of his new business that he didn't want to chance a relapse. I'm not sure if the others are on antivirals still or not. I think one is taking various immune support and no antivirals.

    I guess the better question to ask is do you want improvement in the quality of your life? I sure needed it for I wasn't sure I wanted to go on living back in 2004 when I was so sick. Am I glad to have taken antivirals and antibiotics? Yes, for they have improved my quality of life. Am I well yet? No. Someday I hope to get well and get off all the meds. Before I got sick I took only a multivitamin. That was it. It would be great to get back to that day again.

    Best, Timaca
     
  9. CBS

    CBS Senior Member

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    Hi AquariusGirl,

    I appreciate that your question was posed to Timica but I'm in a similar position. I don't know of any cures for ME/CFS (patients taking Ampligen have also largely reported relapsing after stopping treatment) but for me, the question is one of quality of life. I guess I view ME/CFS as being similar to HIV in that there is immune dysfunction and lots of opportunistic infections and related inflammation (all of which return when HIV patients go off ARVs).

    It hasn't been perfect but for me the relief profound and it is well worth the chance that I either might have to go back on antivirals or even that they might cause permanent damage. I think it's a call we all need to make for ourselves while being as well informed as possible.

    Best of luck!
     
  10. soxfan

    soxfan Senior Member

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    If I and my doctor decide to go the anti viral route then I would do it in a second if it would help my quality of life. I don't really care how long I would have to be on them if I found them to be helpful. I haven't been sick with CFS as long as many people here and I feel I am able to do more but my quality of life continues to decline and I want to end that before there is no coming back...
    Even if I have some reduction in the fatigue so that I don't feel so horribly bad from the moment I get up would be a dream come true. So if I have to stay on them for a long time while the researchers are looking for other ways then I won't hesitate for a second. Even if there could be permanent damage if I could have a decent quality of life for a time then for me it is worth the risk.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Well antivirals have kept me going, not a cure but it helps. I wish i could have started them alot earlier, maybe could have been over it if treated very early. Viral onset from herpes infections ie cmv/ebv/chickenpox helped me distinguish what was going on early, just took along time to find a doctor that could help. 6 years after onset before i used av's. I often wonder what would have been if i got av's within the first year or first few months. Viruses have probably well and truly embedded in my poor little brain now. I suppose thats what happens when theres not accurate test for cfs.

    I say go for the antivirals, especially if u have some evidence of herpes infections.

    cheers!!!
     
  12. Timaca

    Timaca Senior Member

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    heapsreal~ The man I know who is essentially well now was very sick for 18 years (bed bound at times) before he took valcyte. So, take heart, you may not have started too late. I'm inclined to think the problem is identifying which pathogen(s) is the problem, and treating those pathogens correctly.

    soxfan~ A few years ago, when I woke up each morning, the first thought that crossed my mind was "I feel so sick." I no longer feel that way. And while I don't wake up feeling totally healthy, at least I don't feel so very sick. It's nice. I hope you get there too.

    Best,Timaca
     
  13. undcvr

    undcvr Senior Member

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    640 is high for EBV, it would definitely suggest an active infection. Most of the time 160 or 320 already does. If your EBV is 640 I would hate to guess what your HHV6. Those are really high titer levels.

    It is hard to find any lab that tests for HHV6 with real time PCR DNA but for my EBV I had it done at Bioreference labs and it takes most insurances. Your doc has to write EBV ' PCR DNA test' on it otherwise they will just give you the cheaper titer one.
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    thanks for that Timaca, gives me some encouragement to get onto valcyte, but need to save some first, but see how the extra famvir dosage go's for now.
     
  15. soxfan

    soxfan Senior Member

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    undcvr- I had the Elisa done for HHV6 through Arup lab and it was 21.44 normal being 1.1 and I also had it done through focus and it came back 1:160. I know there isn't anyway to compare the two. I do have a form through focus which has the HHV6 PCR listed but it also says blood or serum. I don't know which would be best to have but it doesn't say DNA.
    The EBV test I am not sure where it was done but it was just a number 640 no titer number. I also had an EA EBV done and that was 40 but that also had no reference number.
    I don't think I am going to wait around for the Stanford study to come out. I really don't want to just do nothing and just keep feeling worse. I want to be sure I am treating both EBV and HHV6 if I do take an antiviral. Thanks!
     
  16. Daffodil

    Daffodil Senior Member

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    which stanford study are you guys talking about? the old montoya valcyte study from years ago that never came out?
     
  17. soxfan

    soxfan Senior Member

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    Yes...my doctor won't treat with valcyte until that study comes out!
     
  18. Timaca

    Timaca Senior Member

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    Perhaps your doctor could watch the presentation given by Dr. Montoya at the bottom of his website: http://chronicfatigue.stanford.edu/ It talks about valcyte if my memory serves me correctly....

    Best, Timaca
     
  19. soxfan

    soxfan Senior Member

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    I see Dr. K in Boston and I have already sort of questioned him about taking Valcyte. He said he won't prescribe until that study is published. I will have my other doctor check it out though! Thanks Timaca...
     
  20. atoska

    atoska

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    hi tamica!
    im so happy to hear that people you know are doing good with antivirals! I read it some times in peoples blogs, but Im always very happy to read it again :)
    Im aslo on antivirals. Im taking acyclovir. Im seeing Dr Montoya and have been taking 800gr of acyclovir for 3 months now.
    So far I havent noticed any improvements, im feeling worse than before i started the treatment.
    How are you feeling? how long have you been taking antivirals? what antivirals are you taking? how long had you been ill before you started antivirals?
    im so impatient to see a little improvement to know that im on the right track... so far im scared that the av are not helping me but maybe making me feel worse..
    I would like your opinion about this! :)
    i hope you keep improving for ever! :)
    best, andrea
     

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