Famvir Status Report Week Four

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Dec 4, 2006.

  1. Slayadragon

    Slayadragon New Member

    Monday, December 4
    Famvir--Day 28

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28: 250 mg

    This actually is the beginning of Week Five, but my postings got messed up and it feels too late to go back to fix them.

    I've felt weirdly fragile all day today. Physically, mentally, emotionally. My mind is shot in a way that I never felt before trying this drug. I spent a while crying pretty much out of the blue.....mostly about having lost a decade of my life to this illness, which certainly is a reason to cry, but hardly an _acute_ reason. I slept for a good bit of the day--maybe 12 hours total.

    I spent the waking portion of my day trying to work up the motivation to make a phone call (that was the _only_ task I assigned myself for the day). In the end decided it could wait until tomorrow.

    Just after taking a long nap, I was able to write a couple of long and rather eloquent e-mails, and so wasn't completely dead today. Just mostly.

    I'll rate the day as a 3 overall.

    As stated in a previous post, I woke up after about six hours' sleep this morning with scratchy throat, congestion, some diarrhea. This has happened several times before. I may be fighting off my husband's stomach flu.....maybe a low level of these germs are just enjoying living in my body indefinitely (since presumably he Famvir doesn't kill them and the rest of my immune system is busy disposing of dead bodies) and they occasionally multiply almost out of control for a while until they're partially cut back?

    Forebearance thinks that congestion is a good sign, based on her experience with Virustop. I don't know what to think.

    The fact that no one yet has posted a clear answer to the simple question of _why_ I have low natural killer cell activation (never even mind the Rnase problem) bothers me a lot. Not that anybody knows how most diseases work, of course. Still, doing experiments without having a good working theory in place to back them up is against my academic training and thus feels very uncomfortable to me.

    I'm still not interested in food, but I did eat some of the sukiyaki and rice that my husband brought home from a decent Japanese restaurant.

    The strength of my reaction to this drug is astounding to me. How anyone who was anything like me could tolerate a dose of 2,250 mg daily for three months (Dr. Teitelbaum's recommendation) is totally incomprehensible to me.

    It seems that after I take 500 mg for five days or so, I start to really go downhill. I feel like I'm at that place right now. I'm going to skip taking the drug tonight and maybe give my immune system a chance to get caught up on waste removal.

    Probably when I stop being able to do things like multiply 750 x 3 in my head, it means it's time for a rest. Some kind of objective measure like that that i coud use every day, so that I would know when it seemed like I was going too far. Otherwise I keep pushing it until I collapse, which may not be the greatest strategy.

    I keep reminding myself that killing pathogens takes a long time. i took almost five weeks before I started the Famvir to do an internal candida cleanout, and there was herxing for much of that time. (And that was hardly the first time I'd done a candida fight.)

    Similarly, I've had a totally resistant vaginal yeast infection since early summer that finally is responding to boric acid suppositories. It's working (I've got to get my doc's daughter a birthday present to thank him for that one), but it's been three weeks and that's still herxing too.

    So the idea that the viruses are holding strong after four weeks isn't that surprising, I guess. Maybe this indeed is "Waiting for Godot" and nothing will ever happen. but just because things have gone on this long doesn't mean they're _not_ going to happen.

    I still think this route has a good chance of making me significantly better for the long term. And since I'm far more tired of being sick than I am tired of waiting to see if this drug is going to work, it's not that hard to keep giving it a chance.

    I think that we all should admire one another's (and our own) fortitutde with regard to coping with this disease and trying to get better in whatever ways seem to us to be best. CFS (at least at the beginning of this millennium) is not an easy disease at all to have.

    No Famvir tonight. Just the other stuff I take nightly, then back to bed.

    *

    I woke up and decided to take 250 mg of Famvir after all. I'm either really really determined or totally nuts, apparently.
    [This Message was Edited on 12/05/2006]
  2. Slayadragon

    Slayadragon New Member

    I had no idea that your pain was such that you can't cross your fingers. i'm so sorry!

    Thank you for your prayers. I will remember you as well.
  3. taysmom

    taysmom New Member

    Hang in there. Your a tough cookie. This DD is such a fight and we are the only soldier in the war. I've been keeping up with your post's and you need to hang in there in the hopes that you will feel better in the end. Don't overdue it and titer the Famvir.
    I'm going to be starting Famvir soon (after the holiday's), so I've been reading to see how you've been doing.
    I hope that you can beat those beasts and get your sanity back. Don't let the turkey's get you down!!!!
    Thinking about you and wishing you well days ahead.
  4. Mikie

    Mikie Moderator

    There were a clear path we could point to and say, "This is how you will feel on the drug and when you will Herx, etc." Unfortunately, we all react so differently to these meds that it is impossible to know how each person will feel and for how long.

    I am lucky in that everything I have tried has elicited a strong immune response, followed by a Herx. I know my own body and how it responds well enough now to know what to expect. I think that is key to understanding what is happening. Unfortunately, it takes time to see patterns. Until then, it's groping in the dark.

    My thoughts and prayers are with you and everyone else who is navigating uncharted waters. I've been through all this and feel it has really been well worth it all. I have said repeatedly that I do not believe we can heal unless we address the chronic infections.

    Love, Mikie
  5. deliarose

    deliarose New Member

    about Lerner and Montoya's patients, they're on antivirals for a year or more.. so I think it's a long haul.

    I assume the herx gets better as the viral load goes down.. It would be good to chat to one of those folks tho!

    delia
  6. Slayadragon

    Slayadragon New Member

    Tuesday, December 5
    Famvir--Day 29

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28-29: 250 mg

    The problem with CFS is, it's very hard to get any help from people even when they have valuable information about it.

    It's hard to give it too.

    I am very discouraged.

    [This Message was Edited on 12/06/2006]
  7. Forebearance

    Forebearance Member

    I do admire your fortitude, Lisa.

    It's so excruciatingly boring to feel lousy and to not be able to do anything much. And to be uncertain, as Mikie said.

    I do think you're following a reasonable course of action. As far as I can tell.

    When my friends and family express distress that I have to go through long term lousy feeling treatments, I tell them "Viruses suck!" And it's the truth.

    Love,
    Forebearance
  8. Slayadragon

    Slayadragon New Member

    I just got word that the brother of one of my very best friends just died of heart attack. He was 52.

    This makes me much more determined to do whatever I can to try to get better---even if it's extremely hard in the short-run and even if the first things that I do fail and even (yes) if there are some reasonably low risks involved.

    I've wasted more than a decade of my life on this disease already, and in exactly another decade I will be 52 myself.

    i have a lot more things that I want to do before i die, and I'm tired of having this disease stop me from doing them.

    I feel really bad for my friend.


    [This Message was Edited on 12/05/2006]
  9. cherylsue

    cherylsue Member

    Sorry to hear you are going through a rough time both physically and emotionally. This, too, shall pass. You know that when you stop the Famvir, you will return to your 6/7.

    I reacted to Famvir as well. However, you have to try because some people do have improvement on it.

    I just read Rich Carson's story in the ProHealth catalog. His 17 year old battle with CFS ended when he found he had mercury toxification. He improved greatly after treating it. Have you been tested for mercury?

    My heart aches for you. I know what you are going through. I had a tough time this October when my college roommate passed away from breast cancer. I felt like I was dying, too.

    Sometimes we don't have all the answers. You have to leave yourself in the good hands of an experienced CFS doc.

    God speed you recovery.

    CherylSue

    P.S. I just received some burbur ("In many cases a significant healing crisis
    (Herxheimer’s reaction) can be dramatically reduced or eliminated with the frequent use of
    Burbur, approximately every 10 minutes.")
    from Neutramedix. It came in just a few days, and is supposed to help with herxing. I'm taking their Cumanda product which causes a mild herx, and it is suggested to follow that up with the burbur. This is the last supplement experiment I am trying. The only reason I am trying this is that studies have been done at the Univ. of Guayaquil in Ecuador.


    [This Message was Edited on 12/06/2006]
    [This Message was Edited on 12/06/2006]
  10. Forebearance

    Forebearance Member

    I'm sorry to hear about your best freind's brother, Lisa.

    Love,
    Forebearance
  11. Slayadragon

    Slayadragon New Member

    Donnaell, Cheryl Sue, Forebearance---thanks for your support!

    Cheryl Sue:

    Mercury was actually the _very_ first thing I tried, a few months after I got sick. (I can't believe how many things I've tried and how much time I've spent on this, upon reflection.)

    I went to an osteopath, who did do me a favor of testing my DHEA levels and putting me on a supplement. That was tremendously helpful at the time. Apparently at the beginning of my illness, my adrenals were totally gone. They seem to have gotten a bit better since then, with effort.

    He did a test that showed slightly elevated mercury levels. All my amalgam fillings were ready to come out anyway (after 25-30 years), so I had them all very carefully removed (using the super safe procedure with the dental dam, the oxygen over my nose, etc.)

    Then I had some kind of challenge test where I took some kind of substance that removes mercury from the tissues. I collected my urine for a whole day and then brought it in for analysis. It turned out to be within range, and so I did not pursue this any more. If it had showed high levels, I would have continued to have more treatments where I would have taken that same stuff to dislodge the mercury from my system.

    I'm trying to remember the name of that stuff. dmso? this was 11 years ago and my brain is still gone.

    A number of years later, I had a hair test from my current doctor for heavy metal toxicity. everything was within range, and so he didn't have me pursue that route.

    I am pretty sure I recall Rich's having been exposed to some kind of mercury spill earlier in his life, and so it would make sense that mercury was an issue for him. i agree that amalgam fillings are bad, but I sort of doubt they'd be enough to contribute heavily to the sort of symptoms I have. I've not heard of mercury being a big deal for people who just had normal exposure (e.g. through dental fillings or fish), have you? Which doesn't mean that it's not a minor stress on our bodies that we should avoid when possible.

    I can't recall what the cumanda is supposed to do....is it for viruses. i know you said this before, but there have been a lot of new supplements brought up recently.

    Let me know what happens with it and the burbur, please.

    I sort of don't believe you when you say this is the last supplement you're trying. The last for a while, maybe. No?

    Feel better, all.
  12. Slayadragon

    Slayadragon New Member

    Wednesday, December 6
    Famvir--Day 30

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28-29: 250 mg
    Day 30: No drug

    I finally have relented and decided to stay at 250 mg until the herxing at that level subsides (or unless I get really motivated and change my mind).

    The thing that tipped me over the edge was reading about how a fibro sufferer did not experience relief until 10 weeks into an antibiotic.

    I'm not opposed to going slower. I just don't want to go so slow that nothing ever happens.

    But since every time I got to 500 mg for more than a few days I start to dive bomb, it seems like it's too much for me. We'll see how much of a herx I get at just 250 mg for a while. It would be nice to be able to do something on occasion anyway.

    BTW, Jolie, I think this would be about equivalent to 500 mg of Valtrex, if that. I will be very impressed if you can continue your plan of increasing every five days or so.

    It seems that Mikie (who says this is like stirring up an anthill) and my husband (who says that viruses will not go quietly) may be right. Maybe this isn't just herxing, maybe it's an active fight. I'll be damned if I'm going to give up before a bunch of viruses, therefore.

    One thing that I've noticed is that my daily rhythms have changed. It used to be that I would sleep 9 hours or so, wake up, spend a couple of hours feeling really sluggish, and then start to get some energy.

    Now I sleep for maybe 7 hours at night, wake up and feel pretty good. This last for a while---well, maybe 15 minutes at 500 mg and maybe a couple of hours at 250 mg. Then I have to take a nap. When I wake up, I feel better again.

    Apparently sleep is crucial in handling the herxing and/or the rebelling viruses. I'm trying to get as much as possible.

    I've been using boric acid/probiotic suppositories (concocted by my doctor through a compounding pharmacy) to kill a resistant vaginal infection for the past three weeks. It's definitely working, but I'm not there yet.

    The doctor said it should be about cured in two weeks, but I tend to think that maybe since my immune system has been preoccupied with the viruses, it's been going slower than expected. (I less imagine that the vaginal infection is slowing down the progress with viruses, but I guess you never know.)

    Anyway, I only have a month's worth of the suppositories, and so I'm going to have to call the doctor's office if I need more. If so, I will ask whether this Famvir reaction is at all normal and if he has any other ideas about what to do.

    it's possible he has an anti-herxing potion, although if so I wish he would have offered it to me when I mentioned I was having problems a week or so ago.

    Otherwise, I think his plan is Valcyte, which seems to me stronger. Valcyte may be the best drug in the long run, but since famvir is definitely chipping away at _some_ of my viruses, there seems no need to switch to something that might give me an even bigger herx now.

    Unless, of course, he thinks that as the viruses that Famvir kills are knocked off, the ones that it doesn't kill (such as hhv6) are multiplying and taking their place. That's possible. So I will definitely ask within the next week or so.

    Now that I have decided to stay with the 250 mg of famvir (which I think my body can handle), I have started eyeing the Virustop bottle on my kitchen counter and wondering what would happen if I tried a capsule. I'm going to have to hide the bottle so that I don't give into temptation.

    I need a nap now, I think.

    Thanks to everyone.....


    [This Message was Edited on 12/07/2006]
  13. Slayadragon

    Slayadragon New Member

    Last night, I started thinking that the Famvir is putting tremendous stress on my body, and that if I'm starting to get to the point where I am feeling sort of flipped out emotionally, it means I must be really really stressed. Usually that doesn't happen to me.

    i don't think that level of stress is good for my immune system, so I thought I'd try taking a break. I skipped taking the medicine last night (I didn't feel like doing it anyway) and decided to call the doctor today. I need to get a refill on the suppositories for my vaginal infection anyway.

    Jolie said she was thinking maybe pulsing would be the right thing for her---like a week on alternating with a week off.

    i was thinking that maybe a week off right now would be a good thing, just to sort of get my strength back so that I could go in for a few more rounds. (The fact that the viruses would be getting _their_ strength back at the same time was daunting though. They really do not want to leave, I don't think. Insofar as viruses have "emotions," not being dead would be the one they'd have, I guess.)

    I actually was feeling fairly good last night and thought maybe I'd gotten rid of all the herx symptoms after two days at a half dose.

    i woke up today after 6 hours of sleep and feel like I'm drugged. Lots of strange dreams. My head hurts. It's like I've been through a war. I can barely open my eyes.

    i don't know what this means. This is a very strange drug. This is totally different than what I've felt over the past month since I started the drug. I can't remember feeling quite like this in the past either.

    I don't feel stressed, just dead. So tired and groggy.

    I'm pretty thirsty, but that's not unusual for mornings, especially when the heat is on.

    Maybe my body has been pushing itself with regard to the viral processing over the past month and then collapsed now that it's been given a break.

    Connie, I can't recall how you felt just after you stopped the drug, before you started feeling really good for that week? Were your symptoms different than when you were on it?

    i'd like to get more sleep. Maybe I'll feel better when I wake up.
  14. Forebearance

    Forebearance Member

    Hey, Lisa,

    I'm glad you're thinking about what would be best for you. I hope that you will feel better and recover your strength now.

    Personally, I am so sick of blowing my nose that I have to take a break from the Virastop for a while. But I'm not quitting it, by any means.

    You made me laugh with your Virastop temptation! I know, the temptation to experiment is strong. I think all of us with CFS have to be careful not to let our desire to get better cloud our good judgment.

    I hope you have a productive chat with your doctor.

    Love, Forebearance
  15. Slayadragon

    Slayadragon New Member

    So this congestion is just since you started the Virustop, right? And you're only taking one capsule a week?

    Also, are you still taking Candidase? How much do you take of that? Have the herx symptoms gone away? Do you feel like your candida problem is under control?

    Thanks for your encouragement!
  16. taysmom

    taysmom New Member

    The FFC told me that Burbur Leaf Extract is supposed to help stop the herxing.........I haven't tried it, so I can't tell you if it work's or not, but that's what they suggest.
  17. Slayadragon

    Slayadragon New Member

    Thursday, December 7
    Famvir--Day 31

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28-29: 250 mg
    Day 30-31: No drug


    I realized what I'm doing today: crashing.

    Accumulated stress invariably gets to my adrenals to an increasing extent, so that unless I rest and take other measures to recover, I finally just collapse. And if the stress continues past the point of where I should collapse and I keep pushing, then I flip out emotionally and stop being able to think clearly.

    I almost never let myself get to this point in terms of life stress (either emotional or physical). For whatever reason (the fact that my brain was gone plus the fact that I've never had this sort of reaction to a drug before), I didn't connect the dots that I should be using the same strategy with regard to virus-killing stress.

    However, this month of virus killing has been a lot harder on my body than my two-week trip to Japan (which everyone keeps telling me that most people with CFS wouldn't be able to do). And so no wonder I'm feeling worse than I did when I came home from that trip. The stress was less on the trip, and I paid much closer attention to what was happening to my body so that I could make adjustments as needed.

    My doctor actually said to me beforehand, try to get your adrenals are in good shape. I didn't zero in on this because adrenal health is a big thing for me and I _always_ am doing the things to support them that he and I have discussed over time (e.g. adrenal extracts, hormones, herbs, vitamins, getting good sleep).

    Now i realize what he meant though. Virus killing is so incredibly stressful on my body that I will crash totally if your adrenals can't keep up.

    So my new strategy is to let my body recover (as I do after I've stressed it through work or travel or emotional upset) with lots of sleep. i'm extremely sleepy anyway, and i am going to make sure that I take Klonopin or Xanax whenever I take a nap so that it's deep sleep. And I will give my adrenals some extra support.

    Then after I restart the Famvir, I'm going to take Cortef with it. My doctor wants me to take this all the time anyway since my cortisol levels tend to be a little below normal, but I'm always hesitant because it supposedly decreases the immune system. However, I've realized that this battle is really not going to be about what my immune system can do to help---it's going to be about what my adrenals can stand. Especially since with the small amount of cortisol I take, I'm well within the normal range.

    When I am under significant stress (travel, presentations, etc.), I take 10-20 mg of Cortef (hydrocortisol). If I take it before I do those things, I do not crash nearly as much the next day. If I don't take it, it does not help after the fact. Apparently my own adrenals work as hard as they can to squeeze out as much cortisol as possible when I'm stressed, and then after i get past that point they can do _nothing_.

    So I have to hit the stress before it happens. Undoubtedly the same principle applies to virus killing as anything else.

    I'm going to go back up on my DHEA also. I had been tapering down a little recently because I didn't feel like I needed it as much (my adrenals really _were_ getting in better shape) and was planning to get a test the next time I went to the doctor's office. If my adrenals are stressed now though, they definitely need some extra help on this account.

    I do feel short of DHEA, now that I think about it. When the Famvir was still in my body to a significant extent, it was hard to tell _what_ I was happening to it. It's much clearer to me now---I recognize these symptoms.

    I'm wondering if part of my loss of cognitive function was due to lack of pregnenelone. Pregnenelone has never been a big problem for me (even though it is made in the adrenal glands), but if severely stressed maybe that could start to suffer too.

    All the sleep I was getting was obviously a good thing for the adrenals. I just have to make sure it's sound sleep, and that I don't just let myself drift off into a little nap without reinforcing it with Klonopin or Xanax.

    I talked to the doctor today, and he said I should stay at 250 mg for two or three more weeks and then see what going up to 500 mg does. This seems sensible, obviously. (My only concern was that at too low a dose the viruses killed would be easily replaced by ones that are coming back in, but hopefully I'm making at least a little headway at 250 mg.)

    I'm going to take the next 5-7 days off to let my body (specifically my adrenals) regroup. When it feels like I'm recouperated, I will start again.

    I've realized that getting rid of viruses is a battle......far more so than getting rid of yeast. (Yeast just whine and complain a lot. Viruses fight back.) And if your adrenals give out, you're going to lose the battle every time.

    I'm definitely going to schedule an hour of appointment time with my doctor in early January. I keep realizing he already knows these things.....I just need to give him enough time to share the information with me.

    At least I feel like I have a basic understanding now of what's happened to me over the month now. That's reassuring in itself.

    Hopefully the next round will be easier. That is one advantage that humans have over viruses--we can learn from our mistakes.

    I'm going to start a post on adrenal support, in order to see if anyone on the board knows of measures that I've missed.

    Thanks to everyone for their support!

  18. Slayadragon

    Slayadragon New Member

    thanks for the suggestion about the burbur leaf. I will investigate it during my hiatus from the Famvir and see what I can find out.
  19. Forebearance

    Forebearance Member

    Hi, Lisa,

    Right, this congestion I've had is just since I started taking Virastop. So basically since Nov. 1 I've had a runny/stuffy nose. With two bigger "cold" like immune responses since Nov. 1.

    I should buy stock in a tissue company.

    I took my last Virastop capsule on Thanksgiving day, so around two weeks ago. I'm going to wait a while before taking the next one. Taking them is like giving myself a cold! My immune system reacts to Virastop like a bull reacts to a waving red flag.

    When I take it next, I'll probably try 1/2 a capsule, once a week.

    Yes, I'm still taking a Candidase capsule every other day. Yes, the Herx symptoms from that are long gone. This is a maintenance dose that I can easily tolerate. Yes, I do feel like my Candida is under control, as far as I can tell. I really like that product.

    I'm so glad for you about your further insights into what's going on with your body! I think self-awareness saves us.

    I want to share two things Dr. Cheney said in his 9/06 lecture that struck me. He said that he stopped hunting viruses because he found that when he healed the mitochondria problem (the energy problem that makes the heart pump less blood), the body went after the viruses itself. I'm still pondering that one.

    The other thing he said was that d-ribose helps the endocrine system to make steroid hormones. I was amazed to hear that.

    But you know, I've been taking d-ribose since April, and this past summer I stopped taking Cortef because I didn't seem to need it any more. And now it's feeling like I may not need my phytoestrogens any more.

    I think maybe my adrenals were on the mend, too. But since I've been taking Virastop, I have been taking more DHEA than usual. I seem to need it. I haven't tried taking Cortef. I'm hesitant to get back on it, because it's a big adjustment any time I start or stop it.

    I wish you a good rest. I am at a similar place right now. Resting from A/V treatment.

    Love, Forebearance

    P.S. Hey, Jolie, are you getting enough magnesium?
  20. Slayadragon

    Slayadragon New Member

    On occasion, I have had tender points, although not very painful ones. (Certainly nothing like the ones I've read about here and other places!!!)

    If I press very hard where they are, I can feel little lumps. They tend to be up and down the meridian in the front of my body (from below my belly button to my sternum), just in front of my armpits, behind/near my earlobes, and at the bottom of my sinuses on my face. Sometimes there a few on either side of the meridian on my torso. Very, very rarely I have felt some on my upper arms or thighs.

    This is something that I had a bit more of earlier on in my illness. I was sure at the time that when I started taking Co Q10 (only about 60 mg at the time) it diminished quite a lot.

    I also get just plain very stiff muscles on occasion. My hamstrings are particularly susceptible.

    The stiff muscles I address with yoga.

    The tender points also come and go. The thing I've found most useful for them is something called neural therapy, where my doctor shoots bits of procaine right into the spots. I have mini-convulsions when he does this and can feel the "energy" (or whatever) in my body moving around. After he shoots a good number of them, even those that he doesn't shoot tend to go away (meaning they're not painful and the lumps shrink considerably or disappear).

    I personally think that both the muscle stiffness and the tender points come when I have been exposed to toxins. Usually this is from drugs. I try very hard to avoid envvironmental toxins.

    I did notice more of the stiffness and trigger point pain a year ago after I helped clean out my grandmother's house. There was a lot of old dust there, some of it holding manufacturing chemicals from plants that used to be in the area.

    I've not discussed connections between FM and toxins my doctor, but he does tell me that after neural therapy treatment I should take hot baths with a lot of epsom salts and baking soda to try to pull out the toxins that have been loosened. (I always follow with a cool shower.)

    I would describe what he's doing as being like a combination of super-duper-acupuncture and extremely heavy massage. Obviously that kind of thing releases built-up toxins. Massage therapists almost always bring that up as a reason why I should drink lots of water afterwards, for example.

    I had a steam room/shower put into my house about a year ago and use it at least 2-3 times a week. Upon reflection, I have noticed increasingly less tender points and stiffness since that time. Maybe it is helping with that, which part of my hope when I had it installed.

    Obviously not everyone believes that FM is caused by toxins, but I would lean toward that being at least a possible theory. I saw a study a while back that said that FM is especially common amongst Hispanics and blacks, for instance. At first that made me puzzled since I would have thought that reporting of "mystery" problems would be higher for people in higher socioeconomic groups, but then it occurred to me that many Hispanics and blacks either work in agriculture with chemicals or live in polluted cities.

    I once put a totally non-scientific survey question on the board (asked only of severe FM sufferers) about toxic exposure. I was _amazed_ at the amount of exposure detailed in the responses I got back. (Even if you assume that only people with the most exposure responded, their stories were very scary.) And of course, Rich Carson (is that the name of the guy who is the founder of this organization?) once was exposed to a large mercury spill and had a lot of FM (which seems to have mostly dissipated after doing a lot of detox).

    Anyway, for the moment, I'm doing okay with regard to both trigger points and (despite the fact that I haven't been doing much stretching) stiff mucles. I feel like there's a little bit of "congestion" in the area around my belly button, but not much.

    I've been taking gobs of ImmunoPro Rx to support my liver....maybe that's helped with this as well as with the herxing? Since starting the Famvir I've been finding myself craving the stuff, which usually is not the case.

    So comments:

    1) I was under the impression that Famvir is less toxic than Valtrex. (That may be why my doctor uses it more than Valtrex. Eventually I will get around to asking.) I still want to carefully read that Brewer journal article that I posted, which gives a lot more detail about the differences between the AV's (in terms of potential efficacy on CFS). It thus may be that the Valtrex is affecting you more than Famvir is me. This especially could be since you had so much of it that first week. Just because you're not herxing doesn't mean your body has disposed of the drug remnants.

    2) I don't know if you've been supporting your liver (which is what the ImmunoPro Rx seems to do for me), but conceivably that could make a difference. i've been taking 300 mg of CoQ10 recently and am going to try 500 mg for a while; I also have my steam shower; the Epsom salt/baking soda bath might do the same thing in lieu of one. (Follow with a cool rinse.)

    3) I think having a few tender points on occasion is normal for CFS sufferers. I've not heard of people with established CFS graduating into _severe_ FM, though. (We had a discussion about this on the board once, and so I looked up some info then....back when my mind was working.) So I wouldn't flip out about that if I were you. The likelihood that you're going to end up on a scooter seems pretty low.

    But if what you're experiencing _is_ toxic buildup, it would be good to try to release it in some way. Fighting viruses is hard enough as it is without additional stress factors in your body.

    This is an awfully lot of conjecture on my part. Not that I've heard any good answers from anybody else. My doctor may have an idea (since he has lots of FM patients and does lots of labs and detox therapy), but other than asking him I'm not sure how I would go about trying to find out. I honestly think that people just don't know, and aren't bothering to even ask the question.