Experience with Valtrex?

Discussion in 'Fibromyalgia Main Forum' started by deliarose, Jan 31, 2007.

  1. deliarose

    deliarose New Member

    I'm considering adding Valtrex to my protocol. I've been on TFs and assorted supps and glutathione for 5 months.

    Made a lot of progress. I mentioned to my doc that I had responded well to Valtrex in the past when I tried it briefly. (6 weeks)

    Thing is, for some reason I am leery of messing with Rx drugs.

    I know one CFS researcher says that CFS patients have a hard time processing pharmaceuticals.. some genetic flaw...it puts strain on their livers (Rich Van Konyenburg).

    So I'm hesitant. Any thoughts? Advice? Experiences?

  2. lavender14

    lavender14 New Member

    what are you going to take valtrex for?

    My doc wants me to take it for EBV reactivation, and I took 1 pill and had a bad reaction. kinda like out of touch with reality, and my body.

    I too am leary about adding new rx drugs.

    I go to the CFS center where I live. The doc now wants me to take valtrex, for the EBV reactivation. I'm doing research like you to find out others experience.

    what progress have you made on TF?

    also, what is glutothiane? jennie
  3. deliarose

    deliarose New Member

    EBV. Igg titers of EBV are high.

    TF: jennie please check my other posts. The TF has helped tremendously.

    TFs train your body to kill the virus. Valtrex stops the virus replicating .. at least that's the theory.

    Glutathione: body's major detoxifier ..natural substance..people with CFS are supposed to be depleted of it...

    For more, just do a search under glutathione.

  4. Slayadragon

    Slayadragon New Member

    I've used ImmunePro Rx a whole lot and have found it to be useful for detoxification.

    I also used one bottle of liposomal (is that the right word?) glutathione and experienced no effect at all.

    Are these two products supposed to do different things? (Someone said at one point that denatured whey protein is supposed to be helpful for the liver, whereas liposomal glutahione is supposed to be better for the rest of the body.)

    I know you've gotten some detox reactions with the liposomal stuff, but do you feel like you've gotten improvements? Which symptoms have improved, if so?

    Best, Lisa
  5. deliarose

    deliarose New Member

    and the liposomal affect the liver primarily, ie put glutathione in the liver.

    (Sorry if I misled u before .. teh IV has a more widespread distribution apparently.)

    Like most things, I have changed my mind about the benefits of glutathione and then changed it back.

    I've had some adverse reactions to the glut, poss. because I've overdone it.. I'm not consistent.

    I dunno if it is a herx or whether my body is just not handling it well.

    Part of my dilemma is that Rich Van Konyenburg says that a lot of CFS folks have a methylation block and they can't use glut until they fix that.

    So I think I might work on that first.

    Not v. helpful, but that's where I'm at.
  6. Slayadragon

    Slayadragon New Member

    Does it matter what Valtrex or Famvir lowers?

    I do not have problems with cold sores or shingles.

    However, Famvir is getting rid of _some_ kind of virus(es) for me, or I wouldn't have this die-off reaction.

    I would guess that whatever it's getting rid of is one or more members of the herpes family (since it's a herpes drug). Many or most experts believe there are herpes viruses yet to be discovered.

    I'm happy to have any viruses in my body die off. Maybe it means I will feel better. If not, maybe it means that I will live longer (e.g. that they will be less likely to cause heart disease or cancer).

    Certainly, having any viruses in my body is a good thing.

    In my case, doing as much die-off now is designed to get my overall levels down, so that when I take Valcyte it has less to kill.

    If Valcyte has less to kill, it will be less likely to tax my system with die-off. In addition, perhaps I will be able to be on the drug for less time (which would be good since it's more toxic than Famvir).

    Just because a drug is approved to do certain things (in this case, kill herpes simplex and zoster) doesn't mean that it doesn't do others.

    In some cases, these "off-label" uses get official approval. Doctors can use approved drugs for whatever they feel is best, in the meantime.

    Best, Lisa

  7. Slayadragon

    Slayadragon New Member

    I guess what you do depends on your goals with regard to your CFS.

    Have you come to a conclusion with regard to what they are?

    It also depends on your analysis of the risk ratio.

    There are risks in any treatment that you might use to achieve improvement or recovery with regard to your CFS. This is especially true with regard to AV's, which are reasonably potent drugs and that haven't been tested on us.

    On the other hand, there are risks associated with having CFS, especially if you believe yours is the viral kind and that viruses do bad things to the body in the long-run.

    At one point I asked whether people value quality of life or quantity of life more. If I personally had to choose, it would be quality of life. You may feel differently.

    On the other hand, I personally think it's a false choice since having CFS is making me increasingly nervous. The answers that I got when I posted a question about whether people had ever had chest or heart pains increased my belief that CFS is dangerous substantially.

    As I think I once said, Valcyte indeed may reduce your fertility. But conceiving and carrying a child to birth (not to mention having the energy and financial resources to care for a child in the way that you would like) can be affected substantially by CFS too. Again, what you do is determined by your risk evaluation.

    Another question is whether you think that, if you wait, better CFS treatments will come along. In that case, it depends on how long you're willing to wait and whether you think that good treatments are in the pipeline.

    Until you think through all these questions and come up with definite answers with regard to where (for the moment) you stand, it seems to me hard to make any decisions with regard to what to do about CFS.

    None of the options that we have are guaranteed to come out well. If we make a choice, it may turn out to be wrong. But not making a choice is making a choice too.

    Of course, this problem is not limited to CFS. Or finances either. It applies to every single thing that we choose to do (or not to do) in our lives.

    The stakes may be higher in CFS, but that seems to me an even better reason to put serious thought into where we stand on all these various risks and potential rewards.

    I have my own views about what is right for me, and am not especially pleased when people (based on their own risk/benefit analyses) tell me what I should be doing.

    Similarly, I doubt in the end that you'll benefit from hearing what other people think you should be doing.

    Best, Lisa

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