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Famvir hhv6

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

  1. SOC

    SOC Moderator and Senior Member

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    Sadly, two months on Valcyte appears to be no where near enough for PWCs. I'm thinking a year is pretty optimistic. From what I'm hearing, 18mo+ seems to be the effective time period.

    I have a couple of (uneducated) ideas for why that would be. First, most of us probably have neurological infections (hence the neurological symptoms) and getting medication past the brain-blood barrier isn't easy. Maybe it takes that long to get enough medication into the brain to deal effectively with the infection. Second, Valcyte stops replication of the virus, but does not directly kill it. You still have to wait for the infected cells to die a natural death. While you're waiting for that, you have to keep the infected cells from replicating. Maybe some of the infected cells are fairly long-lived, so it takes a long time to ensure you've knocked the infection down enough for our messed up immune systems to keep the virus latent.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    someone mentioned how a few doctors are finding low dose valcyte alot more successful without the side effects compared to the original montoya study, and probably easier to do long term. Can someone shed some light on this, anyone being treated like this with any sort of success.

    cheers!!!
  3. slayadragon

    slayadragon Senior Member

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    My doctor who prescribed the drugs for me is Dale Guyer of Indianapolis. He uses both Famvir and Valcyte compounded down into small amounts, in some cases as little as 50 mg. He insists that people should take only the amount that they can without getting more than a tiny bit of die-off symptoms, because any more than this means (he says) that the immune system is not keeping up with the drug and thus that the whole treatment is counterproductive.

    I was doing this weird mold avoidance thing while I was first on the drugs, and that kept my inflammation way way down. If I'd not been doing that, I'd only have been able to tolerate small amounts.

    He says he's had success in starting people at those levels and then slowly moving up. But sometimes they're on them for years, I think.

    From what I hear, he's one of the few doctors who's still using them. It will be interesting to see if he tries the antiretrovirals as well. He'd be much more likely than most doctors, I think.

    Best, Lisa
  4. aquariusgirl

    aquariusgirl Senior Member

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    I heard one of Lerner's patients was on antiviral(s) for 8 years.

    I am wondering if it would be helpful to go on Heparin before drugs to break down the fibrinogen that shields them?
  5. m1she11e

    m1she11e Senior Member

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    My doctor is doing the low dosing on the Valcyte as well. He starts most out at a half a pill a week! This is only after he almost gave up on Valcyte after all of the horrible "die off" symptoms people experienced with the original Montoya dosing. Compounding would probably be the best way to go like Slaya mentioned but that has to be expensive. (???) I have also tried the Lauricidin and I could take it at full dosage and never felt a thing. I know many do feel a die off with only a few pellets. Go figure, no wonder we have such a hard time piecing this whole thing together... It seems we all react so different.

    Now the draino I do VERY well with... (loved that Roger!)
  6. SOC

    SOC Moderator and Senior Member

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    That is my uncle. :Retro smile: He's completely recovered, at least in terms of being 100% functional (or maybe 110%, the way he's going, lol). I doubt he's had an XMRV test or any immune function tests, but he is extremely active, and feels great. He's the one who pushed me to see Dr Lerner.

    My daughter and I are taking 1350mg daily. We started lower and worked up. My daughter has had no side effects. I had a rough patch for 8-12 weeks starting about the 4th month. I was more fatigued, more severely swollen lymph nodes, rashes, HSV titre increased -- all stuff that was uncomfortable and annoying, but for an "experienced" PWC, nothing approaching intolerable. Since that cleared (about 3 months ago) I've been getting better rapidly -- on an ME/CFS scale.

    I suspect that the rough period many of us experience with Valcyte is not really a die-off (like a Herxheimer rxn) because antivirals don't kill off the virus, they just keep it from replicating. I'm thinking (with no medical education) that it's more like the IRIS rxn HIV patients get when they start HAART. As I understand it, the rxn is caused by the immune system starting to function again after having been exhausted by fighting the infection. Or something like that. :D

    I take 1 targetted transfer factor pill (Transfer Factor 200, ProHealth) daily, also. I'd also done at least a year on Dr Pall's protocol, which I think helped me a lot with inflammation, so Lisa's idea of reducing inflammation may be an important factor for making the Valcyte treatment easier, too.
  7. slayadragon

    slayadragon Senior Member

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    How sick was your uncle before he started Valcyte? Do you think he might be willing to talk to me about his experiences?

    I'm looking for people with moderate or severe ME/CFS (Canadian Criteria) who have recovered to mostly or total full wellness. The case studies I've gathered so far are making a really interesting compilation, with some differences and some similarities. The goal is for the doctor I'm working with (Keith Berndtson of Park Ridge) and I to make some observations about what we can learn about the disease, and about treating it, in order to help people to understand those things better.

    This is what happens with herpes family antivirals (Valcyte, Valtrex, Famvir, Acyclovir). In order for viruses to replicate, they need to go into living cells and hook onto them. They take energy from the cell and use that to reproduce. With most viruses, B cells or T cells can find them because the cell produces a protein when attacked called MHC, which serves as a signal to "Come and help out." Herpes viruses keep the cells from creating MHC. Fortunately for most people, NKC's can find cells under attack even when they're not producing MHC. Unfortunately for us, our NKC's are broken. Thus, herpes viruses multiply out of control.

    Antivirals prevent the viruses from hooking onto the cells. However, this means that they're more likely to be "swimming" around outside the cells, continually looking for a place to land. What's supposed to happen then is that other immune cells find and kill them. Unfortunately, other parts of our immune system are broken too, so this is rough going. (With all these things broken, you wonder how we can stay alive.)

    The inflammatory flare, I think, is due to the fact that these viruses are more damaging when they're outside the cells than when they're hiding inside them. Why it is that the lack of mold exposures made so much of a difference for me in this, I'm not sure. It could just be additive, but it feels more multiplicative.

    Did Dr. Pall's protocol give you any noticeable results before you started the drug? What specifically are you on?

    Dr. Guyer's theory is that people should address whatever pathogens they can and whatever toxins they can, without worrying too much about which ones they are. This will relieve the overall system burden and allow it to do a better job taking care of whatever's left on its own. This is inconsistent with the recent trend to use antiretrovirals specifically, but so far the latter doesn't seem like a magic bullet. Based on my own experiences, Dr. Guyer is right in this.

    Despite the fact that he admits that he's never seen a patient go from being as sick as I was ("The sickest of the sick") to being as well as I am, he still is not focusing on the mold. This makes me annoyed. Maybe he needs more written explanations and more case studies. He doesn't have to send people into the wilderness, but at least he should be suggesting that living in moldy houses is not a good idea. I mean, that's hardly a controversial idea that people should do that, though pulling it off can be a challenge.

    So the fact that the Lauridicin gives me such a strong die-off suggests to me that maybe it will be a good thing for me to try. Ditto a product called Rizols Gamma, which is supposed to address Lyme and co-infection parasites, and that gave me a big reaction (it felt like it was killing something horrible in my jaw) when I took it for a while. My goal at present is to do some more detox (it feels like I'm getting fairly close to stabilizing on that, though I may never get to the "end") and then try those things. That will keep me busy for quite a while, I think!

    Best, Lisa
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i hope your feeling better sickof cfs, its never plain sailing with cfs, its a bumpy up and down road, hopefully u get over it and on track again. Keep us updated on how u go.

    cheers!!!!
  9. nventor

    nventor

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    This really stinks, so many people have the same symptoms, right? common complaints with the up again and down again cadence of the illness. How can it be so many things and have so many varied opinions? There has to be one common denominator causing such similar symptoms.

    I plan to continue Valcyte as suggested by sickofcfs for as long as it takes, but my instincts and experience ( that is in taking it) tell me its toxic.

    Just desperation I suppose to get well again, I still like my idea of developing a crack habit and going out happy, just kidding.

    roger
  10. SOC

    SOC Moderator and Senior Member

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    Loving Valcyte

    Actually, I'm feeling great! :D I haven't been able to say that in years. Once I got through the bad patch -- and it wasn't that bad -- I've been improving dramatically. I was mostly bedbound last fall and a large part of last winter. I started Valcyte in Feb. This fall I'm working more than half time. It's half volunteer work and very flexible, so I don't have to work if I don't feel well. Everyone I'm working for (and with) is very sensitive to my health, so I can't claim this is anything like working half time at the checkout at Walmart, but it's such a huge improvement from last fall that I'm still kinda stunned.

    When I was sicker, I said I'd be happy if I got enough better to have some kind of life, even if it wasn't the full life I wanted. Well here I am, and I am extremely happy -- and it looks like it's going to continue. :victory:

    My daughter has some serious stress in the last month (on top of ME/CFS and engineering school) and has not relapsed or flared at all. That's really big. She's about 6.5 on Dr Lerner's scale now.

    Not so sickofcfs
  11. SOC

    SOC Moderator and Senior Member

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    I would say he had mild ME/CFS. When he started treatment he was working full time, but he couldn't do much else. I think all he did was antivirals, first Valtrex and then Valcyte when it became available. I don't think he'd be up for talking about it. He's really put it behind him.

    Dr. Pall's protocol pretty much cleared up my sensitivities which had gotten to the point where I couldn't go out of the house without reacting to something. It also helped a a lot with the brain fog, didn't eliminate it, but made a noticeable improvement. Did nothing for fatigue as far as I could tell.

    We still take the multvitamin/minerals/antioxidant (MVM-A) and the NAC complex from his protocol. We started having trouble with even lower than our usual low blood pressure, so we quit the Super EPA and the CoQ Gamma E, which seem to have a BP-lowering effect (for us, anyway). I think the MVM-A is a good multivitamin for PWCs, so we'll probably keep taking it forever.

    When my daughter could stay in remission most of the time, Dr Pall's full protocol would pull her out of a flare much more quickly than than she could manage without it. Neither of us could get that kind of effect once we were never in remission.

    Same here. Surely it can only help to have less of a burden on our immune systems.

    I can't speak to that. I do have mold allergies and have been taking OTC allergy meds twice a day for years (on doctor's orders). I also have HEPA and electrostatic filters on my home air handling unit. So I'm all for avoiding mold, but I don't really know how it effects ME/CFS.

    What is it with the jaw? I always get a swollen jaw and jaw pain when I'm having a flare -- not really swollen lymph nodes under the jaw, more in and above the jaw in front of the ears. I thought it was just me. I also had chipmunk cheeks (like mumps) several times last year. No one could explain it. Or seemed to care, for that matter.
  12. SOC

    SOC Moderator and Senior Member

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    Yikes! Our Valcyte came with all kinds of major warnings not to even touch broken pills because of some kind of toxicity. Sometimes those warnings can be really scarey. I'd be terrified to take half a pill, lol.
  13. m1she11e

    m1she11e Senior Member

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    Yes, I asked him about the broken pill warning thing. I think it had to do with younger girls and it being toxic. I guess they want you to put that pill right in YOUR mouth and not take a chance of some of the powder intoxicating healthy family members :-0 ??? I will have to ask him again but he has a whole lot of people doing it that way now. I dont think you could ever take Valcyte if you read all of the warnings.

    BTW- Sooo happy for you and your daughter sickofcfs!!! (or not so sick anymore...)
  14. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Hi Sickofcfs,
    So sorry if you have answered this before, but what dose are you (and your daughter) taking of valcyte?


    P.S. Has anyone else had Muscle Pain as a side effect of Famvir? I tried it briefly but it made my muscles hurt all over, really badly. It was listed as a side effect.
  15. SOC

    SOC Moderator and Senior Member

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    We are taking 1350mg daily, 2 pills in the morning, 1 in the evening. We worked up to that over a fairly short period (1 week?).

    My daughter had significant improvement within the first 6 weeks, but her improvement slowed a lot after that. I suspect in part because, as a college student, she's not getting as much rest as she should (even though she tries) and probably lives close to her body's physical limit for walking and standing.

    I had a small improvement at first, then very small to no improvement for a couple of months, then a bad-patch where I was back to pre-Valcyte level for 2-3 months. Since then it's been a rapid (by ME/CFS standards) improvment.

    Throughout Valcyte treatment (well, until the past couple of weeks), I've was in extreme rest mode. I stayed well below the level of what I could do without flaring. I wasn't taking any chances of a flare...and I rationalized that if I DID have a serious cardiac and neurological infection, my body needed all it's energy to fight it. Thank goodness for a husband willing to nag me into rest and do everything around the house!

    So even within our household, rxns and responses to Valcyte have been different. My guess, though, based on our family's experience, is that it helps to deal with as many other issues as possible -- sleep, inflammation, over-exertion -- to get the best results and least side-effects with Valcyte. Just a guess, though....

    BTW, we also take Transfer Factor 200 (ProHealth). I don't know if it's helping, but I think it probably is.

    If anyone wants the whole list of what we take, whether or not we think it's related to Valcyte treatment, let me know. It's a pretty long list. *sigh*
  16. SOC

    SOC Moderator and Senior Member

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    Yeah, scarey, aren't they? I'm coping with it, though, because most (all?) of the nasty side-effects are completely reversible if you catch them early and Dr Lerner watches very carefully.

    We're happy and excited, too! Especially for my recent improvement because we didn't expect this for me. It was more of a "We'll see if we can get you noticeable improvement over the course of several years" situation for me. My daughter is expected to be nearly normal after 12-18mo on Valcyte and she's on the path for that, I think.
  17. nventor

    nventor

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    Hi everybody,
    I spoke with my PCP this evening and he agreed that 18 months on Valcyte was reasonable, YUUUUUUUUKKKKKk, but it if helps, I'll do it. Also, he started weekly shots in me butt cheek of B-12, the other one gets Rocephin weekly, ooooooooouch. I don't know what else I can do. I take so many meds and supplements its almost embarrassing, but desperate times calls for desperate measures I suppose.

    I wonder if I should up the Famvir to 1000mg. daily? I have two more weeks on 1800mg. Valcyte before going to 900mg. daily, maybe if I were going to try increasing the Famvir, I should wait till I cut back the Valcyte. I'm also still taking 6 tabs daily, Mon.-Fri. of Immunivor. Any thoughts?
    Best,
    Roger
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I would just stick with what your doing for awhile, changes seem to take months usually. I know what u mean about take pills, i rattle when i walk, lol. I would give 3 months before making a judgement on valcyte, then adjust things from there. If u have been on immunovir for awhile, it might be time for a break of a couple of weeks as continual use reduces its effectiveness, maybe look into cycloferon as it works on the immune system in a similar way to immunovir but will allow u to take a break from it while continuing to stimulate your immune system. Everything your doing looks good though. Do u get any titre levels done on viruses so u can tell if treatment is lowering them??

    cheers!!!
  19. nventor

    nventor

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    Sticking with it Heaps is a good idea until the next silver bullet comes along, then I'll probably jump on that train. The shot of B 12 yesterday seems to have helped, which is a small positive, but how many months can you continue to take all this medication? But still, you feel like at least there is hope in being aggressive.

    I know I've been on antibiotics for 20 of the last 24 months, I begin to wonder what part the meds are playing at least some of the time when I'am feeling poorly. A lot of docs out there would say I was crazy for taking so many for so long, better crazy than dead I suppose.

    Best, roger
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    if its xmrv or we just have a dysfunctional immune system, we are just prone to chronic infections, which infections is an individual case, taking av's abx help keep viral and bacterial load down so we feel better then without, i think these things we are going to have to do forever. I have days where im just sick of taking meds, the last 2 days i have been feeling quite ordinary and think why bother taking them, but i have stopped the famvir before and within a week the symptoms come roaring back, then i know these expensive pills are helping. I think we all may need to stop treatments once in awhile to see if they really are helping, we tend to feel crappy all the time but its the level of crap we feel, without the pills rattling in us we are even more crappy. crappy by the way is a medical term for feel sick, lol. the F word is used when u are worse then crappy, lol

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