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Famvir hhv6

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by m1she11e, Aug 3, 2010.

  1. m1she11e

    m1she11e Senior Member

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    I am rarely on here so it will be hard for me to respond to this thread as soon as I should. With that said, I think it is important that I post my experience...

    My HHV6 has been at 65 times greater than a positive for many years. Ive been sick for around 28 years. I dont have the lab values in front of me but that is how my doctor explains the 65 number. He said that is one of the highest levels he has seen. We tried to start me on Valcyte about two years ago but I would get deathly sick every time I took just one pill. He thought it was a good sign and that it was die off. After about 15 pills and backing off and trying again, I gave up. I then got very sick after a move and was non functional for about a year.

    Recently I moved again and within weeks began feeling better. I talked my doctor into lettiing me try Famvir although he really wanted me on Valcyte. After 3 months on Famvir, my HHV6 dropped from 65X greater than positive to 3X greater. We were both shocked. He is keeping me on a lower does of Famvir now while we go after Cpn with antibiotics. I cant say that the drop in viral load has helped me to feel better. It does make me happy though that the load is down and the HHV6 is not wreaking so much havoc on my body.

    I had no die off with Famvir. My viral load just dropped. This makes me doubt that Valcytes horrible side efects are die off. If it was die off, I should have felt the same on Famvir.

    I hope this helps some one trying to figure out how to deal with HHV6.

    Good health!
    Michelle
  2. floydguy

    floydguy Senior Member

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    Thanks Michelle.

    Do you think that your new place had any impact on your feeling better?
  3. m1she11e

    m1she11e Senior Member

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    Yes, without a doubt the move impacted my health. It did not affect my viral load though.
  4. markmc20001

    markmc20001 Guest

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    great news! My doctor beleaves that treating viruses and bacterial infections can help restore ones health. I would say that is very encouraging!

    Slayagragon believes that getting away from mold and biotoxins can make one feel better.
  5. nventor

    nventor

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    Hi m1shelle,
    I have been taking Imunovir for about ten days and have begun 250mg 2X daily of Famvir for HHV 6 and EBV. How much Famvir are you taking if you don't
    mind me asking? Also, did you tolerate it well? I too did very poorly on Valcyte, I made it about as long as you and had to stop. I'm surprised by your significant
    drop in your HHV-6 load and yet you're not feeling better, sometimes it just seems to baffle. I suppose most would say there is something else going on,
    but these illnesses just seem to be all over the place.

    Good luck and continue to feel better
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    interesting michelle, i improved alot on famvir and then went backwards when i changed to valtrex(because it was cheaper). I recently got another lot of test done on ebv and cmv and the ebv test said i havent had a past infection from ebv(negative IgG, IgM) although positive to ebv 2002???? did have igG to cmv. In australia cant get titre values to tests so my doc uses lymphocyte subsets and these went down when first on famvir with improvement in symptoms and when on valtrex and feeling crappy these lymphocyte tests were all elevated again. Now its been about 4 weeks on famvir again and i am feeling better. Famvir is not suppose to have any effect on cmv or hhv6 but i think we're proof it does have an effect. I take 250mg twice a day and i also never had any die off effect, interesting!
  7. SOC

    SOC Back to work (easy, part-time work)

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    I don't think there's any reason to think we've found all the herpesviruses, yet. Maybe you've got an infection with an unidentified herpesvirus that is being partially detected by your ebv or hhv6 tests giving weird numbers. Maybe Famvir happens to be particularly effective for this unidentified virus.

    Sheer speculation, I admit, but not outside the realm of possibility. :Retro smile:
  8. m1she11e

    m1she11e Senior Member

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    Ive been having trouble logging on so Im sorry I never followed up...

    nventor- You asked me the dose of Famvir I was on. I was taking 500mg, 3X a day. I had no "die off" and no problems tolerating it. Seems strange that even one pill of Valcyte would knock me out and it was chalked up to die off. Yet, my HHV6 levels dropped dramatically on Famvir and never felt worse(or like I was dying) before better.

    I do want to mention that I ran out of Famvir a little over a month ago and am appealing my insurance currently. I didnt think the Famvir, and decrease in HHV6 titres had any influence on how I actually felt. I had moved at the time and started feeling better weeks after the move. It was also about a month on Famvir at that time. My improvements were big but I still felt awful. Sometimes when you go from bed/couch bound most of the time to up and around but still exhausted, you forget the level of improvement that has really been made.

    At about one month off of Famvir my HELL symptoms came crashing down on me. They started with severe vertigo. (HATE that!!) My eye muscles got weak and everything in my world was in that blurry fog that is different from needing glasses. I had gained a needed 10 pounds and was working out some, but off the Famvir my constant nausea came back and I started losing the weight. My muscles were so weak I couldnt think of working out, it was difficult to go down the stairs again. That is when I realized that it had to have been the Famvir that had been helping me and not the move so much.

    I got 21 (500mg) pills ASAP. My insurance will not give me more than 21 in a month at this point. I took the 500mg, 3x a day for the first 2 days and am rationing the last of the Famvir at 1 (500mg) pill a day until I hope to win my appeal. It took about a week but the Vertigo has lifted, I can work out a little, the fog has lifted and the nausea is gone again. I am still very sick. I do know now though that Famvir does keep me from being unable to function to being able to function but poorly.

    My doc is a huge fan of Valcyte but has agreed (if the insurance agrees) to give me 3 more months of Famvir and test my level of HHV6 again. He did say that even on Valcyte that the numbers can jump all over the place. If we keep seeing the levels go down we will keep me on Famvir. My only other choice is Valcyte and I just dont want to do it.

    One more piece of this broken puzzle I guess...
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi michelle, look into and ask your doc about adding a drug called probenecid, it is a med used for gout but also used to increase the half life and increase blood levels of drugs like antibiotics and antivirals. So using probenecid u could theoretically decrease your dosage of famvir and still get good effect, 500mg twice a day would then last u the whole month. I have been on famvir 250mg twice a day but the last few weeks have dropped to 250mg once a day with probenecid and have added an immune stimulant called cycloferon and have been improving on this. My reason fro lower my famvir dosage and adding probenecid is for economical reasons.

    cheers!!!
  10. m1she11e

    m1she11e Senior Member

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    Hi Heaps,

    Thank you for the suggestion. Can you tell me the dose of the probenecid? I have also been keeping an eye on your cycloferon thread. I would love to add that to my protocol but I have alot of numbness although I have no lesions to indicate MS and test negative for other auto immune diseases. Although my white cell count is low, I worry about raising interferon and having more numbness since I dont know the cause. I would like to find a way to modulate the immune system without over stimulating something. All this bug hunting is some what helpful but I believe if we dont fix the immune system we arent ever really getting at the core of the problem. I think you are on the right track for sure!
  11. nventor

    nventor

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    Hi M1shelle,

    I have been taking Famvir (250Mg twice daily) with Immunivor for three months and have had a dramatic improvement of all symptoms. I was very well when a couple of weeks ago I asked my PCP to check for CMV. The fact that I have seen so many doctors and at least four ID's and complained about eye problems you would have thought that someone would have checked for CMV, especially considering that I have active HHV-6, EBV (now dormant) and Lyme. Turns out of course I had high antibodies for CMV and Igm, positive and active.

    Here's the bummer, I get along with Valcyte about like you seem to, so my doc started me on 450Mg daily for a week, 900 the next week and now, 1800Mg. daily Ouch!!! I hate it, I'm sick as a rodent, but I'm only going to do this regiment for three weeks and maybe go to a maintenance dose?

    Oh, and I'm also getting ready to have trouble with the insurance company, as I have had trouble with
    them in the past. What an outrage, it's bad enough to be sick without having to exert energy battling them when there is zero energy to spare.

    Good luck getting your meds and feeling better,

    Regards,
    Roger
  12. m1she11e

    m1she11e Senior Member

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    Hi Roger,

    I was thinking about adding the Immunovir if I could afford it at some point. As far as CMV, I do have that as well. I was hoping the Famvir would address that too. I just really dont want to do Valcyte. I did want to tell you that my doctor has been working with Valcyte for quite awhile and has changed his protocol. He is in contact with Montoya and he said he has changed his as well. They are are not hitting you with those high doses. My doctor starts at a half a pill once a week, then half a pill twice a week and slowly works up. He sais he doesnt have the bad "die off" effects like before and that people do better in the long run. He also sais that many times he never has to work up to the 1800Mg dose like he was prescribing before.
    If I ever do go the Valcyte route again that is the slow protocol I will work with. I have spent the last 2 years trying to get back to where I was before I tried only about 15 pills total of Valcyte.
    It knocked me out and even though I am doing better now, I am FAR from working full time like I could 2 years ago. All I did was work and collapse back then but I could never work now.

    Anyway, maybe the high dose Valcyte is too much for some of us?

    Good luck and feel better!!
    Michelle
  13. nventor

    nventor

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    Hi M1shelle,

    I just got back in and wanted to respond to a couple of your thoughts. My doctor is prescribing based pretty much on info. that I bring in, we talk about it, in the case of the Valcyte, the dosage of 1800 Mg. for 21 days was per dosing instructions from Roche. CBC's every Friday.

    The lead up dosage was my idea because of the terrible time I had when I tried Valcyte a while back. Just reading the awful time you had scares the Hell out of me, but it scares me even more to be chronically ill with all this and when the quality of life feels like it went off a cliff, gotta do something.

    But, the most important thing I wanted to say was that the Immunivor (which I think has helped more than anything else) is kinda inexpensive, I believe doing 6 a day with weekends off, its maybe under $70.00 per month, which when compared to other meds it seems like a bargain. I purchase it from Goldpharma http://goldpharma.com/login/ and so far I have found them to be top notch.
    I would also add that I have read very little down side as to harmful side effects and have had none myself, of course everyone is different but it may well be an alternative to Valcyte. Also, I don't even know how legal it is to import, but I honestly do not care, it dosen't seem like there are a lot of choices.

    Regards,
    Roger
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi michelle, cycloferon in its info says , Cycloferon exhibits high efficacy in curing rheumatic and systemic connective tissue diseases
    by suppressing autoimmune processes and exerting anti-inflammatory action. But probably need to dig further into it, someone on prohealth board with auto-immune problems is trying as well. Immunovir also raises interferon so may need to watch for that also, but heres another link to another source of cheap immunovir as well, http://www.natcol.co.uk/product-details/Imunovir_tablets_100_pack/. Probenecide i use at 500mg a dose with famvir but larger and more frequent doses can be used but also depends on other meds used. Good luck with everything and i will stay tuned to your thread with interest.

    cheers!!!
  15. m1she11e

    m1she11e Senior Member

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    Hi again Roger,

    Thanks for the information! I was wondering if the Immunovir from Gold Pharma was legit. Im glad the hear it is "top notch." I for sure want to do something to modulate my immune system while killing these nasty virus' off.

    Good luck with the Valcyte. I agree that when the quality of life has fallen too much you have to make a move. My only concern with any of this is getting even sicker. I dont care if a med will kill me :-/ , I just dont want to get even sicker and lose ALL quality of life. There are no easy decisions with this crazy illness.

    Michelle
  16. nventor

    nventor

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    Hi Michelle,

    I think your right to stay away from Valcyte, I was out of options. The funny thing about this illness is that there are soooooo many conflicting opinions, I'm speaking strickly within the medical community. I have been told by several university ID's there is no such thing as a viral "die off". Yet, when I
    started Valcyte both my eyes turned crimson red for a week, then cleared. I increased dosage, turned red again, not as much so, but still noticibly red. I dunno, wish someone would figure it all out.

    Get well soon and let me know how you do if you start Immunivor,

    Regards,
    Roger
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hi roger,
    have u been diagnosed with cmv eye infection? I have chronic sore red inflammed eyes which have been helped somewhat with antibiotic doxycyline but not sure if improvement is from its anti-inflammatory affect. Will have to ask my quack about that one too.

    cheers!!!
  18. m1she11e

    m1she11e Senior Member

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    Thanks heaps! I couldnt find much info on line regarding the Cycloferon.

    Cheers to you!
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  20. nventor

    nventor

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    Hey Heaps,

    I went to the Wilmer eye clinic at Hopkins on Wed. and I did not have CMV retinitis. I have endured years of eye inflamation but according to the Opthamologist is was not retinitis nor were they prone to elaborate other than to use a lubricant, absolutly could not care less about CMV.

    It seems no matter how you pursue all the dynamics of what ever the Hell we got, a question leads to more questions, and very little interest on most quacks part. They either don't know, don't care or don't believe. I have had serious eye problems in the past five years, mostly redness, this has been treated with steroid drops, Pred Forte, bad stuff. Keep me posted.

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