half 'cured' VALCYTE CFS/EBV/HHV6

Discussion in 'Fibromyalgia Main Forum' started by juls6, Feb 7, 2008.

  1. juls6

    juls6 New Member

    Just wanted to report back some results from todays visit.

    after 2 months on Famvir and now 3 months on Valcyte (1 mo @ 900 and 2 mo @ 450) my titers have returned to 'normal' and i am no longer experiencing those (CFS)symptoms.

    in august
    EBV was 2705 (positive >120)
    HHV6 was 1:320 (positive >1:160)

    as of Jan 21 (after 1 week off Valcyte - you have to wait for it and the die off to leave your system, so i suspect they are lower now)
    EBV is 266 (barely 2x normal - positive >120)
    HHV6 NORMAL 1:20!!! (positive >1:160)

    Now we are treating the Mycoplasm Pnuemonia; which if you haven't read much about, exibits symptoms alot like fibro.
    I am on the AB's now. and will probably have to return to work. the STD company cut me off, and I don't have any 'objective' evidence now.

    oh well - there is a light at the end of the tunnel and i wanted to share the (good) news.

    by the way, i really didn't notice so much until i came off the valcyte - the valcyte itself seems to add much fatigue an continued die off. it really killed my liver so those symptoms were aweful.

    [This Message was Edited on 02/08/2008]
  2. bigmama2

    bigmama2 New Member

    im so happpy for your improvement!

  3. pawprints

    pawprints New Member

    By the way, who are you doctors in Florida?

    Congrats on the improvement.
  4. grace54

    grace54 New Member

    I hope you continue to heal:)
  5. sascha

    sascha Member

    a clear-cut case. so interesting your titers went down and you are feeling free of cfids symptoms. so good to hear about this.

    my first HHV6 test was over 10,000. i've been experiencing tremendous herxing on the valcyte (i'm in week 6), and had big initial reactions to the valcyte itself.

    yesterday i had a clear day of "normal" functioning. it was just amazing after a period of weeks of 24/7 symptoms and being unable to do almost anything. amd before the valcyte of course i had 8+ years of the cfids that pretty much took over my life.

    what an intense journey we are on. i can't wait to see how i'll feel today! so far i seem pretty ok (6 am).

    good to hear how much you notice the valcyte affects your energy level. i'll keep that in mind.

    may you continue improving! thanks, sascha
  6. mulder2000

    mulder2000 New Member

    Just curious what dose of Famvir you are on? There is a lot of discussion of Valcyte dosing, but not much on Famvir (which I started <1 month ago at 500mg x2). I have similar test results to yours. thanks.
  7. juls6

    juls6 New Member

    it is really nice to see a light at the end of the tunnel.

    the mycoplasm still isn't any fun, but at least funtioning is a little easier out of bed.

    I first went to Dr Dantini in Ormond who put me on the Famvir 500mg 3x day - no big herx or anything w that.

    then when my primary up and quit on me, i went to Dr Hudson in Winter Park (off the good doc list).
    he started Valcyte 450mg x2. which later became just 450mg, cuz my liver couldn't handle the die off. (He really thought i would be on it for a VERY LONG time.)

    I am SO glad I went to him - it is so worth the drive across town! he was the first doc to tell me about protocols instead of me telling him "can we try..?" LOL

    Its really hard to say how long I've been sice since its been a whole host of things discovered.
    I was in a car accident in late 98 and my life has not been the same since. I came across CFS researching my symptoms then, but I was still very active and functioning as opposed to late. I will say that the dibilatation came post our triple huricanes in 2004. In early 2005 i sought out a new physician and stopped taking "you're normal" and "you're too young for that" as an answer.
    very quickly i got my overactive bladder Dx, Hormone imbalance, and Hypothyroid.

    I tell the doc at every visit - its like peeling back the layers of an onion. one piece at a time, i get my life back.

    One of the BIG things i noticed and mentioned to a friend of mine who also noticed - little bits of my 'old self' my personality started coming back.

    oh and i forgot to mention - I went back on a low carb diet 2 months ago - sugar/flour are the devil - LOL. I did it more for the weight loss, but noticed a change with that even before coming off the Valcyte.
    [This Message was Edited on 02/08/2008]
  8. kyra07

    kyra07 New Member

    Congrats!!!!! This is so amazing and such wonderful news! I hope you keep improving and thanks for sharing! :)
  9. sascha

    sascha Member

    i started on FAIR program (Food Addicts in Recovery) October 17th. i did it for health and weight reasons. just made sense to get food deal under control. i didn't need to lose a huge amount of weight, but i have dropped 30 pounds which puts me down into reasonable weight range, and i feel so good about that.

    i also am wondering if this squeaky clean eating program is helping through the valcyte herxing with all its symptoms. i am hoping eating so well and healthily will result in eventual recovery of well-being and energy- after 8+ years of the cifds, and now my six weeks of symptoms on the valcyte.

    so- no sugar, refined flours, high-glycemic foods. i am having non-fat yogurt, weighed and measured quantities of meats, vegs, fruits, salads. my cholesterol went down 22 points! that, to me, is a very encouraging sign.

    i hope and intend to stay on the FA program all the way through valcyte, and actually beyond, since i get along with the plan well and love its potential for improved health.

    good luck to you with your continued progress! Sascha
  10. greeneyeslk

    greeneyeslk New Member

  11. aftermath

    aftermath New Member


    This is excellent news.

    Two quick questions about mycoplasma...

    1) How were you tested? PCR or antibodies? If the later, which ones and how high were they?

    2) What are you treating the mycoplasma with?

    Also, how did you develop the illness? Was it sudden?
  12. juls6

    juls6 New Member

    my labs were done via my insurance so only Labcorp was allowed. the first doc tested ALL titers IGG, IGM and early antigen. i bellieve the levels i listed were the early antigen.

    as i mentioned, i can not know for sure when and how was onset. deterioration slowly followed a minor car accident involing my C and L spine. It seemed to really 'flare' up after an extended period of stress in 04. I have a lab that shows all of my adrenals at a very high level from that time. I think what ever it was got into my system then, when the body couldn't really fight it off.

    hard to say - but i'm sure at some in the future they will figure it out.
  13. Lichu3

    Lichu3 New Member

    Thanks for the report. I'm glad you're feeling better.

    I think it is unlikely that the results are early antigen for HHV-6. As far as I know, this test is not available currently.

    However, if you do check your results and it is early antigen for HHV-6, that would really be news for me.
  14. Catseye

    Catseye Member

    Excellent news, glad to hear it!

    What about taking liver cleanse pills to help with the assault on your liver? I have to take them with any meds or I feel awful. They make a huge difference.

    [This Message was Edited on 02/09/2008]
  15. aftermath

    aftermath New Member

    <blockquote>then when my primary up and quit on me, i went to Dr Hudson in Winter Park (off the good doc list).
    he started Valcyte 450mg x2. which later became just 450mg, cuz my liver couldn't handle the die off. (He really thought i would be on it for a VERY LONG time.)</blockquote>

    This is why anyone with ME/CFS needs to get personal copies of any labs that are done.

    I always request copies when any labs are done and not once has an MD as much as looked at me funny. You paid for them and you have the right to the information.

    Moreover, as Lichu said, there is no early antigen test for HHV-6 current available in the clinical setting (this is something that the HHV-6 foundation is working on. I am curious as to what type of tests yours were.
  16. PVLady

    PVLady New Member

    My last EBV was 8,000! and the norm on the test page was below 90. Can you please tell me how you tolerated these medications? Did you have a bad reaction..

  17. ladybugmandy

    ladybugmandy Member

    hello! thank you for the good news.

    i was wondering how long ago you developed CFS?

    thank you!
  18. kyra07

    kyra07 New Member

    So glad you have seen improvement. You have made me reconsidering the V treatment option. I have the same titers you used to. Just had my myco treated, which I assume is now in remission.

    How long have you had CFS? What made you want to try valcyte? Have you tried other treatments as well? I'm trying to get all my issues under control and see how "healthy" I can be first. Are you on disability or have you been working? If latter, did you work through treatment? If former are you on LTD or did you go on STD for treatment?

    CONGRATS!!!!!!!!! This is very exciting news! You give hope to many of us!!!
  19. juls6

    juls6 New Member

    It's really hard to read my first labs - even my new doc had a hard time. there are so many listed he couldn't tell which one was the right one - LOL. you are probably right about the HHV6 test - i'll look it over again to be sure.

    aftermath - yes i have been keeping copies of my labs/MRI's/CTs/etc for the last 3 years when things have been really debilitating for me. I wish i had done that in the begining - the old dr's office (never saw the doc only the PA) i probably would have caught alot of things sooner, like the thyroid. its sad you have to 'become a doc' to read these tests, know which ones to ask for and then the correct treatment - LOL

    barrow - yes after my first time of the liver enzymes going up i ALWAYS took milk thistle when i took the valcyte. obviously it didn't help as they went up again. I also dropped ALL of the supplements i was taking. the GSE was wasted against the valcyte anyway; and i was surprised i didn't need them afterall. I have started the GSE again post valcyte as it does work against my sinus issues.

    PVLady - as i've mentioned, there was alot of die off - mostly in the beginning, and the liver issues were actually the worst for me (nausea, etc). I also noticed that my body needed more sleep on the valcyte - i'm back to only needing the 8 hrs vs the 10+.

    ladybug/kyra - hard to say if it indeed started after the accident in late 97 or in 04 when it got to the point i couldn't manage it and the Dx came?

    I was on the famvir first, which i think is actually key in fighting this.(famvir or valtrex followed by valcyte) I tried all the stuff we talk about here, supplements, B vit, Rx adhd meds, phentermine, provigil. nothing worked, some stuff helped me to function to go to work everyday. but it got to the point where i just couldn't think. I'm an engineer, so thinking is kinda important. I applied for STD an have been out since mid oct. I knew the valcyte was gonna knock me down first, so i really didn't wanna try to keep working through it - I felt the stress at work was setting me back as i did make progress on the famvir. The STD cut me off in Jan, so i have to appeal; but i'll probably go back soon.

    My doc put me on these protocols - although they are all listed here. It was the best thing i ever did, just picking a doc on the good doc list; so i could go back to being the patient!

    hope i didn't miss anyone's questions?
  20. porchswinger

    porchswinger New Member


    Sorry to hear they cut you off STD. Even though you are feeling better now, you should fight to keep your disability insurance. What happens if you go off disability, go back to work and then get sick again? Can you go back on disability?

    I know from my experience with CFS for 21 years, that I have my good times and my bad times. When I'm having my good times, I'm not 100% but I can function. Then I crash and I am sick for months. When I went to SS disability hearing, the judge found that I couldn't reliably hold down a job.

    Given the up and down nature of CFS, make sure you are really really well and not just merely well for a time before going back to work.

    Prepare to fight for your disability by reporting all your symptoms to your doctors and make sure they write them down in your medical records. You also need a doctor who will go to bat for you.