Famvir Status Report Week 2

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Slayadragon, Nov 19, 2006.

  1. Mikie

    Mikie Moderator

    Acyclovir is a very effective drug but has the side effects of making a person feel kind of sick while on it. I don't feel like eating; well, actually, I feel like it but thinking about eating makes me feel sick when I'm on it.

    I would say that, for me, the Acyclovir is as effective as the Famvir, but the Famvir has no apparent side effects. As long as I'm using my zapper and pulsing the TF's, I seldom have to resort to the AV, so it's no big deal.

    It is possible that GWI is a different illness than CFIDS. I really don't think the triggers are important in determining the illness but, of course, we do have to treat toxins and pathogens. I believe we are genetically predisposed to these illnesses. I believe research has turned up a few genetic mutations and it's possible that the number of genes affected determine how our illnesses manifest or the severity of our illnesses. I believe research will eventually come up with the answers.

    It is possible that exposure to certain toxins or infection with certain pathogens are the cause of the genetic mutations. This chicken-and-egg question will have to be answered before we truly understand what we are dealing with. Until then, everything we do is just symptom management. I continue to believe that we have to address the infections or we will continue to go downhill.

    Head injuries are causing researchers to look more deeply too. Many with head injuries do not completely recover and have associated complications down the road. I have suffered from several concussions, one of them serious. I can look way back into early childhood, though, and see things that, in retrospect, were definitely signs of things to come.

    HHV-6 usually cannot be controlled by AV's alone. The TF's are very good at driving the HHV-6 into latency. Yes, "The Virus Within" is a book." It was written some years go but you should be able to find it. I believe the Herpes Viruses are especially dangerous.

    Good luck to you.

    Love, Mikie
  2. Slayadragon

    Slayadragon New Member

    Wednesday, November 22
    Famvir--Day 16

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-16: 500 mg

    I spent the day resting. I am feeling fairly tired and slightly feverish (even though I don't have an actual fever). My appetite is lower than normal. I have been drinking a normal amount of water for me (about eight glasses), and it occurs to me that I should up my intake to wash out toxins.

    I took another two servings of ImmunoPro Rx in the hope that it would support my liver. It seems intuitively a good thing to do. I am continuing to take my other drugs and supplements, including 6,000 mg of vitamin C (EmergenC brand) that may also help in detoxification.

    I'm not very inclined to get into oral conversations or watch movies or listen to music (somehow the sound of voices really does bother me), but reading and writing have been fine. My mood is pretty good.

    I have noticed that the height of my herxing is about 5 hours after I take a dose of medicine. I am surprised that it sets in so fast. I have begun taking my second dose of the drug in the evening, so that I am asleep during the peak time.

    I have set aside this week (until Monday) to do nothing except rest and let my body kill viruses. It will be three weeks by then. Hopefully I will have started to see some progress by then.

    My doctor said that I should start with a month of Famvir and see what happens. I will call his office early next week with a report and see what he suggests I do next. (I believe that his assistant MD will be willing to facilitate this process, based on my conversation with him a couple of weeks ago.)
  3. Slayadragon

    Slayadragon New Member

    I believe that you said that you've been ill for two or three years? That does seem forever, of course. It sounds like you've done a good job at pursuing treatment in an efficient and effective manner though, even if it doesn't seem like you've gotten as far as you would like or that you "should have".

    Upon reflection, 'm wondering if the reason that you're herxing _so_ hard is because your body is suffering from other stresses. Right off the bat, I'm thinking about systemic candida and food allergies. Have you looked into these?

    Candida is mentioned constantly on this board (plus there's a whole other board on this site devoted to it). I've had plenty of experience with it, but even I overlook its importance sometime. Chances are, if you haven't addressed it specifically, it's a problem. It seems to me best to assume that it is, anyway.

    Food allergies seem to be talked about very little on this board, but I've found them to be _extremely_ important for me (and have read and heard that they're a big problem for CFS in general).

    They take some work to identify, which may be why they're overlooked. It took me a while to come up with mine (and I'm probably still missing a few).

    People also seem to have a bit of an obstinate resistance to altering their diets, even with regard to cutting out sugar. I can understand that.....especially when you don't have much energy, worrying about what to eat is frustrating. But it's worth it.

    I think that I may be missing some foods that I am allergic to, and am going to get retested. I should receive the test kit soon. If you want, I can give you the name of the company. You wouldn't need the FFC for this....your husband could just draw the blood and send it in.

    It's been my understanding and experience in the past that blood tests are not entirely accurate. (I used another doctor that first time.) My current doctor told me that he had found the blood test to be quite accurate....perhaps they have improved over the past 8 or so years. In any case, a blood test is a good starting point and will identify at least some of the problem foods (if there indeed are any).

    Withdrawing from allergic foods can be stressful for a short period of time. Apparently the body produces an opiate-like substance when confronted with allergic foods, giving them an "addictive" quality even though they later result in bad reactions. (I used to have a compulsion to eat huge quantities of popcorn, for instance; now even the smell makes me a little depressed and sick.) When the body stops releasing this substance (I guess it's at least similar to endorphins), withdrawal symptoms occur. They usually subside within a week or so, though.

    I definitely wouldn't advise fighting yeast and viruses at the same time. I took five weeks before starting the Famvir to clean out my own system of yeast. (It was in worse shape than I had thought....that stuff tends to sneak up on CFS patients.) Not having to contend with the yeast has given my body a lot more strength to deal with the viruses, I think.

    So if you do think you have yeast, I would be inclined to tackle either it and the viruses separately. I would tend to think that yeast is a better starting place.....the protocol is clearer and you're almost certain to be successful at it. It's not easy, but it shouldn't be nearly as bad as getting rid of viruses has been for you thus far.

    Food allergies would only take a short time to get past, if you did indeed have some. (That one just takes a lot of willpower, during the first week and then into the future.)

    Of course, you may have already done these things. I can't remember your whole bio (or may never have heard about all the things you've done.) And it's possible that they may not be problems for you (although if you have traditional CFS--and it sounds like you do--that's fairly unlikely).

    It seems at first glance like addressing other problems before using the AV would be a step backwards and slow you down, but I'm not so sure. With the way you're herxing, it could be a long time (or never) before you get to the needed level of the drug. If your body is in better shape to begin with, the herxing time could be a lot shorter and the pain a lot less unbearable.

    Plus, if you do have candida, you will need to get rid of it anyway eventually in order to feel good. There's really no getting around that one.

    I have some hope that if the antiviral(s) work, my food allergies will decrease. The doctor said that I also may be able to get good sleep without the Klonopin I currently take. (I don't need Klonopin to sleep, but I sleep much more deeply and awake much more refreshed if I use it.)

    It would be nice if those things happened. However, for the time being, not having the stress of the allergies plus getting good sleep seems essential for getting through this difficult phase with the AV.

    I am throwing an awfully lot of info at you today, aren't I? But then again, probably you shouldn't go back on Valtrex until you're feeling wholly better. Until you have the energy to digest all this information, you probably won't be physically ready to proceed anyway.

    I hope you get to that point soon.
    [This Message was Edited on 11/22/2006]
  4. Slayadragon

    Slayadragon New Member

    After reading your letter and bio, I started reflecting on the first time that I accepted deep down in my soul (as opposed to in my mind or even my emotions) the depth to which CFS has affected my life. I think I can name the very day.

    It actually was not until about a year ago. This was 10 years after I first got sick with that "flu that never went away" (which accompanied a pregnancy and then miscarriage in my third month).

    My psychopharmacologist had given me some Provigil tablets, and I decided to try one on a day when I was traveling.

    It was like a light bulb went on and I felt exactly as I had just before I got sick.

    Everything suddenly seemed _easy_. I had tons of motivation and enthusiasm for life, was totally unphased by a delay at the airport, got huge amounts of work done sitting on the floor waiting for the airplane to be ready to board, made lots of ambitious plans for the future in my head, engaged in an animated conversation with my husband when I finally got home, went to bed at a reasonable hour and slept like a baby.

    The next day I crashed and was in bed for three days, but that's not the point.

    The point is that on that day, I suddenly remembered what it was like to be _well_. Not just to be feel okay, not just to have enough energy to be able to do things on a particular day and have fun and/or be "successful" at them, not just to know that I had a lot of good things in my life and was grateful for that.

    What that day made me recall was what it was like to be _me_, before I was sick. It was nothing like being on speed or coffee or hydrocortison or in push mode or hypomania. It was purely and simply how I felt every single day (excepting the small percentage of the time when I had some sort of acute infection or was under some kind of unusual stress) for the first 31 years of my life.

    And then I realized that--yes, I really had lost something, and that telling myself that I hadn't didn't make that fact any less true.

    I still knew I hadn't lost _everything_, by any means.

    And I still knew that in at least some aspects, my illness had given me some things too. In forcing me to slow down, it caused me to think about things more deeply and to understand things and people more clearly. In forcing me to set limits, it caused me to reflect more deeply on what really mattered to me in life. There have been other good things that have come of it as well.

    But nonetheless, the extent of what I had lost---which basically was my whole definition of the self that I thought that I was before I became ill---became absolutely clear to me for the first time.

    (I guess taking 10 years to come to that realization makes me seem like a very slow learner. My husband had realized this years and years and years ago, I know. Well, wishful thinking and denial are powerful human traits, I guess.)

    That realization made me change a bit in my outlook.

    I have, I admit, spent a small amount of time since then mourning the life that I used to have. (Honestly not much time, though. I don't have a lot of patience for looking backwards.)

    But more than that, I've become more determined than ever to do everything I can to get back to being as close as possible to where I used to be. And considering that I think I've been more proactive all along about my health than the vast majority of people with CFS (or the vast majority of people with other diseases), that's saying a lot.

    Some would say that I am setting myself up for failure, but I don't think that's the case. I can do only what I can do, and if it doesn't work then so be it. But if I _don't_ do everything that I can do, then I will have failed myself.

    As for the Provigil....my psychopharmacologist, bless his heart, tried his very best for quite a while to make me better with it. However, taking it at any dose for more than a day or two made me into a walking zombie.....like a normal person would feel after not sleeping for three days straight and drinking a _whole_ lot of coffee. And I always, always crashed afterwards.

    Unfortunately, it's not the solution. It was a good tool of enlightenment, though.

    Anyway, going back and paying scrupulous attention to the things that I knew were important factors for me was something that I knew I could do. More saliently, early reports about the AVs and other drugs have given me hope that moving a lot closer to my goal is possible. And in doing additional investigation, it seems that there are other things that I can do (or soon will be able to do) as well.

    As I should have expected, the past year has been a more difficult one than the past few for me in terms of my health. What I've realized with this disease is that you've got to give to get, though.

    Maybe if I put everything I can into getting better over another year and don't make any real progress, I will put the idea of improving on the back burner for a while and turn my full attention to other things. Right now I feel that--especially with new alternatives available--I owe it to myself to try, though.

    So going back to your husband's comment.....do I feel like I'm disabled?

    Well, on the one hand, not exactly. There are still a significant number of meaningful things that I am able to do, including some of all of the activities (work, family, social, recreational) that I used to do.

    I actually I think (or maybe even am sure) that I accomplish more than many "healthy" people my age. And there are very few people in this world I would exchange places with, even to obtain their perfectly healthy bodies.

    But am I disabled in terms of what I _could_ be, if I could figure out how to more effectively treat or manage this disease? Of course.

    It's all in how one looks at things, I guess.

    As a side note, even if I do get wholly better, I imagine I'll have to go through this process once again when I get closer to death, unless I fall off a ladder or something. I'd like to make the most of my life in the meantime--as well as then--though.

    I don't know why I keep rambling on like this in these posts. I suppose that devoting a specified chunk of my life solely to "getting well" has made me reflect on these things more (not to mention giving me more time to write them).

    Of course, I could talk about them with my husband, except that he already knows them by now (he's quite perceptive and reflective) and would find the conversation to be unnecessary. I'd rather discuss more pleasant topics with him anyway And very few other people would understand......

    **

    As for more practical matters.

    I am glad to hear that it doesn't seem like you have yeast issues. That may indeed be due to pursuing a healthy diet before and after you got sick. Nonetheless, candida tends to insidiously creep up on people with this disease after a few years, and so you might want to be a bit proactive anyway. I never found probiotics to do anything for me before, but a few months ago I upped my dosage to 10 billion organisms per day (about 10 regular capsules). That has seemed to help a lot and isn't terribly expensive. I avoid sugar like the plague (although a couple of years ago I mistakenly got lax and ate an occasional dessert); it sounds like you're already doing something like that.

    I am going to call the lab at my doctor's office to send me the allergy kit on Monday and will ask the technician which company they're using these days.

    Latex allergies are bad . After years of giving myself various shots (B12 and a bunch of other things) where you have to push a needle through a rubber stopper, I have developed that deadly systemic (anaphylactic...sp?) kind. Those shots seem to be a new craze amongst CFS patients, and I hope they don't eventually go the way I have.

    I also developed a less serious but annoying allergy (I get a terrible rash on my chest) to cellulose. This was after about 8 years of supplements (many of which include that as a filler). I now have to be very careful about which ones I buy. Pure Encapsulations (which your husband could get at a good price on the Internet) is the one I use most.

    Have you had your adrenals tested? Thyroid problems requiring T3 often go along with adrenal problems, it seems. The very first thing that I found that made a really substantial difference for me was DHEA....my levels were extremely low. Four different MD's have actively worked with me on this, and a fifth (my CFS-interested local internist who mostly uses drugs) agreed it was a reasonable tool. I don't know if the FFC's address this or not.

    I wonder if, should the AV do its job, your immune system might be able to throw the bacterial infection on its own. In any case, I don't think that bacterial herxes ever are anything like viral or candida herxes. (BTW, if I took any antibiotic, I'd be inclined to be _really_ proactive--to the point of maybe taking herbs or even a short course of Nystatin--while on it. Candida causes way too many problems---sometimes including horrendous ones that can seem at first totally unrelated---to not be taken really seriously.)

    Regarding your muscle tone. Everything I have read on this topic (based on research or anecdotal reports) implies strongly that physical fitness has no correlation whatsoever with level of severity of CFS at onset, or with potential for or speed of recovery.

    Certain doctors did make this _assumption_ early on and--since they had no other suuggestions--simply told CFS sufferers exercise more. This apparently was based on the fact that exercise does indeed decrease fatigue and increase stamina....for most people. It just doesn't seem to do so for CFS patients. Even the Mayo Clinic, a early proponent of this approach and very slow group to recognize CFS as a real illness, seems to have reversed its stance on this.

    Of course, exercise as tolerated is helpful in terms of keeping muscles and the cardiovascular system in good enough shape that activities done on a "good day" aren't as exhausting. And exercise obviously has benefits for other health problems (which CFS sufferers can certainly have too). However, evidence that it will help people to get to higher levels of CFS-related health--or to make faster improvements toward that goal--is to my knowledge non-existent. Let me know if you find any, though.

    Out of curiosity, what "levels" are you at when you wax and when you wane?

    I admire you a lot for raising kids while you have this disease. (My husband and I decided that taking care of children, not to mention another pregnancy, would put way too much pressure on me. He was more sure than I was....again, i was still in deep-down denial mode.)

    It sounds like you are doing a fine job raising them. Obviously it's good that you have a nanny, though.

    The thing about having kids (or for that matter the sort of "real' job that both my husband and I have managed to slip away from having to do) is that you sort of have to keep it together for the vast majority of the time. It's a luxury to be able to withdraw from life for a while, in order to recover from stress (which I have a lot of on those occasions when I do work, for example) or to pursue better long-term health.

    I feel bad for those people who have to force themselves to go to work every day just to keep food on the table and an insurance card in their wallet.

    On the other hand.....raising children is innately rewarding and meaningful regardless of the stresses and limitations it entails. It certainly makes things harder, but I would guess that it is worth it.
  5. Slayadragon

    Slayadragon New Member

    Thursday, November 23
    Famvir--Day 17

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-17: 500 mg

    Again, I spent the day resting.

    I've felt about the same amount of fatigue as yesterday. Again, I've felt slightly feverish (even though I don't actually have a temperature). I have a slight headache. My appetite has been fairly light.

    Voices have not bothered me as much today as they have on many days while on this drug. I watched most of a movie (in English with the sound on) with no significant discomfort, for instance.

    I'm starting to become more confident that the herxing at this dose has started to diminish. I wonder if and when it will go away entirely.

    I feel sleepy at random times and have been taking naps. I have been sleeping less than my usual 9 hours at night, though. Probably I have been getting a total of about 8 hours of sleep per day.

    I tend to think that the sleepiness occurs several hours after I take the drug. I wonder if it would be better to take the whole dose (it's a low one in general) a few hours before bed, therefore.

    The daytime sleepiness doesn't really matter right now since I'm not doing anything but resting. It could make a difference later one when I have commitments during the day (if I continue to herx then), however.

    Perhaps tomorrow I will experiment doing that, but will decide on that later.
  6. Slayadragon

    Slayadragon New Member

    Friday, November 24
    Famvir--Day 18

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-18: 500 mg

    I decided to wait to take the entire 500 mg of Famvir unti the evening (about 9 p.m.). I will see what happens.

    Today was an almost exact repeat of yesterday.

    I did not have the feverish feeling or the daytime sleepiness. I tend to think that was just because I did not take the drug during the day rather than because the herxing is ending.

    I'm glad it's not getting worse again even though I'm remaining at 500 mg, though.[This Message was Edited on 11/24/2006]
  7. Forebearance

    Forebearance Member

    Hey,it sounds like things are going great for you! I'm so glad that the Herxing is diminishing.

    Love,
    Forebearance
  8. Slayadragon

    Slayadragon New Member

    Saturday, November 25
    Famvir--Day 19

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-19: 500 mg

    Today was a repeat of the past two days.

    I seem to have plateaued. I'm in low-energy mode (4-5 on that scale) and without motivation to do anything. (Having giving myself permission to do nothing but sit around and kill viruses is a great relief.)

    If I felt like this ordinarily (which I do on occasion), I would just assume that my body was run down and that I should rest unless there were things that I needed or really wanted to do.

    However, because I had that one really good day early in the week after not taking the drug for 36 hours and since then have been doing nothing but resting, I tend to think that I'm still herxing at a low level.

    Hopefully this means that eventually I will get to the point where I see a real improvement. I don't know at this point.

    When I woke up today, my throat felt scratchy and I had some congestion. I took some ProBoost. (I want to start taking ProBoost every day, but my new supply is not arriving until early this coming week.)

    My appetite is still fairly low, but I had a reasonable dinner. I did not feel feverish or have any other strange symptoms. My mood is reasonably good (except when I think about the potential of having to catch up in work/life without feeling better than I do now).

    My sleep has still been off the past couple of days, even though I have been takinng my whole dose (500 mg) in the evening. I have been sleeping 6-7 hours at night, then taking a nap during the day.

    Maybe my sleep cycle is messed up from my erratic sleep earlier in the week (when I was taking some of the drug during the day). I am going to try taking some melatonin tonight to see if I can get it back on track.

    It is good that I seem to be able to tolerate this drug (at least for the time being and at this dose) and am not herxing very badly. Hopefully it will end up helping me.
  9. Slayadragon

    Slayadragon New Member

    It sounds to me like you must be herxing from this leukostim stuff, doesn't it?

    Maybe this is good news. If Leukostim is also causing herxing, maybe you don't have to be as afraid of Valtrex by itself.

    This might be especially true since (at least for a while) you also were taking that fibrin thinner. Someone else said that could make AV herxes much stronger, didn't they?

    Personally, I would be a bit nervous about that fibrin stuff. I probably will pursue it eventually, but I will do so with at least as much caution--e.g. on its own, research first, careful monitoring throughout, starting at a low dose and working up, doing it at a time when I have time to rest---as I have the Valtrex.

    I don't know what form those mushrooms in the Leukostim are in. However, I myself herxed at a mild level for two whole months on that MGN-3 mushroom stuff that is supposed to increase NK cell activity. (I think I wrote about it on your Valtrex post a couple of days ago? Can't remember the new name of it, the brand name sold at the store on this site is ImmPower.)

    So mushrooms have the potential to be strong stuff. How expensive was the Leukostim? If it was pretty expensive, I would be more likely to expect a herx.

    OLE is olive leaf extract, I realized after a little bit of googling. I've not heard anyone having huge negative reactions to olive leaf, but I'm sure someone here has. Personally, I think it did nothing whatsoever for me (although maybe at some point in the future that might be different).

    What are the other ingredients?

    My tentative strategy is to wipe out as many viruses as possible with the AV and then try to build the immune system. Based on my own experience, until the pharmaceutical cos. come out with a really strong immune enhancer, the stuff out there is just strong enough to make a herx but too weak to make enough of a dent to make me feel better. The worst of both worlds.

    Maybe if the viruses were at a lower level, increasing immune function would help to keep them at that low level. It's a nice thought.

    There is some stuff that I need to do this coming week, and so (if I don't start feeling better by then) I am going to try briefly lowering or even stopping the Famvir. Maybe that won't be necessary, if the herx symptoms (if that's what they are) keep going down, though.

    Let me know what you find out and how you're doing.
  10. 2BHealthy2

    2BHealthy2 Member

    Hi. I'm new here and am wondering what herzing means?
    Thanks!