Famvir Status Report Week Five

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Dec 12, 2006.

  1. Slayadragon

    Slayadragon New Member

    Tuesday, December 12
    Famvir--Day 36

    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 30-36: No drug

    This is almost the beginning of Week Six, but I didn't record most of the first week and so the posts are kind of off.

    Today was better, in part because I made an effort to eat throughout the day. I do much better that way. Food is such an annoyance to have to think about.

    In general I think I've about recovered from this first famvir go-round. I was sleeper than pre-famvir today---i ended up taking a nap for a couple of hours. Upon reflection, even though I was sleeping 12 hours a day when on the Famvir, I don't think any of it was _good_ sleep. It was just going into a dead zone while my body fought viruses, not giving it a chance to repair itself.

    I think tomorrow night I will start again at 250 mg. I did reasonably well on that for six days at the beginning of the experiment (just somewhat more fatigued than usual), and so hopefully if my body really is recovered from the overkill,, it will be able to handle it. My initial fear was that this would be too wimpy a dose to do anything (and that the bugs would replicate or infiltrate faster than they were being killed), but since my doctor said to try it for 2-3 weeks and then experiment with going up, he must think that it will give me some progress.

    If I can't stand the 250 mg, I will either cut the pills (that seems possible) or skip days. Hopefully that won't be necessary.

    Hopefully tomorrow will be a good day.

    In looking at my notes, I see that the doctor said the timetable should be that I should try to get rid of yeast and work on my adrenals before the Famvir, and in the meantime hopefully get rid of the vaginal yeast infection. Unfortunately, it took him five weeks to figure out how to get the suppositories for the infection custom-made by a compounding pharmacy. So now I'm doing both at once.

    The vaginal thing was supposed to take two weeks to heal (he said), but it's still hanging around. I think doing it at the same time as the Famvir slowed down the progress. I honestly think it's getting there, but it's been slow.

    I have always hated the concept of entropy, and so to have a body with that _theme_ is really ironic. I mean, we all get there sooner or later, but not this young and not quite in the same way. Perhaps this is supposed to be a way for me to become more resigned to the idea of entropy, but thus far I'm still pretty ticked off about it.

    Not that those people with CFS who seem to be resigned to the concept of entropy seem to be getting better either, though.....

    Give the day a 7. All things considered, that's pretty good, actually.
  2. Slayadragon

    Slayadragon New Member

    Responses from previous thread:


    My doctor actually said that I should try Famvir for a month and then see how it worked, then maybe switch to Valcyte.

    I think that what he really meant was that he wasn't sure about Valcyte since he had only been using it for about 4 months and had 18 patients on it, and wanted to get some more data before getting more people on it. He's had fairly good results with Famvir.

    it took me five weeks after our meeting to start the Famvir. It's been a month since then, but he wanted 500 mg and I've not even gotten close to that. So I know that I haven't given it a fair chance.

    Hopefully I can use 250 mg for the rest of December. My next appointment with him is on January 8, and so we can reevaluate then.

    I keep reading reports saying that people who really improve are often on av's for 6-12 months, and so i'm trying not to get big hopes up. I wish I could at least stay on the drug without burning out my adrenals, which is my goal for the next go-around.

    That's really great that the Proboost has helped you. I have been taking 1 packet a day since starting on the Famvir, and took several packets a week before that, but maybe I should consider upping the amount. Wish insurance would pay for the stuff though.

    I guess that having a more active old age would be good, but I'd rather have it be sooner than later.....

    It's kind of amazing to me that your relapses are _so_ dramatic. I relapse for days or a week, then come back. But the CDC even has noticed those two patterns, which is significant considering how basically blind they are. I wish I could understand the difference. I wish I could understand _anything_ about this disease. Or that I at least had some kind of theory. Cheney's doesn't seem quite right to me, although there probably is some truth in it.

    You do seem like you're improving. As long as you don't push yourself into a blowout or get careless, you will get back to where you were.

    I haven't been at a consistent 8 since I've been sick. Based on what's happened re my previous improvements, if I could get there, I think maybe I could stay there. It would be kind of a miracle if that were to happen.

    This is a chronic condition, for sure. My husband said it took him a couple of years to really figure out what the word "chronic" meant. I think for a long time we both had the belief that it would go away on its own, or that there would be some simple answer. As if.....


    Thanks for your support! I hope you're doing better by tonight too.
  3. cherylsue

    cherylsue Member

    I read so many conflicting reports on CFS - even from the expert doctors and researchers. I don't know whom to believe anymore or what to do for treatment.

    What I do know: infections make the situation worse. To avoid infections I take Olive Leaf, ProBoost, and Sambucol. Vaccinations cause relapses.

    Pacing seems to help. Talking a short walk outside in the fresh air helps. Pure Encapsulations St. Johns Wort helps. And Time helps for me.

    BTW, Dr. P prescribed .5mg Klonopin for me per my request for help with sleep. It did help last night, but I did wake up at 1:30am and stayed awake for an hour or so before I fell asleep. Today I am especially tired.

    I'm pretty upset that I am expected to return to work full time in January. I possibly could do part time, but I'm not up to full time. Not now, nor in a month's time. I was looking forward to return to work, but I can't do the full time thing yet.

    I'm thinking of going back on the Cumanda/Burbur protocol again. I just took a high dose of Bromelain.

    I just wish there were more diverse types of research. They seem to research the same things over again. You have to give the FFC's some credit because they are experimenting. I wish there were more statistics, and that they were held accountable. The marketing is great, but from this message board we get the full "mixed" picture.

    Lisa, with your research background, maybe you should get involved with following up on CFS research. Perhaps, compiling a list of protocols and their successes, if that were possible. I think a lot of politics are involved, and we may never get the real picture.

    Lisa, I'm glad you are at a level 7. That's terrific. I'd rate myself 4.5.

    Hang in there.

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

    Slayadragon New Member

    Wednesday, December 13
    Famvir--Day 37

    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 30-36: No drug
    Day 37: 250 mg

    I think my body has almost recovered from the first go-round of this drug, and I also have a slight feeling that maybe it did at least a little bit with regards to the viruses. There were times today that I felt somewhat clearer than usual.....I'm not how to explain it, just different. And then there was a lot of the day that I was just sleepy. My brain (I don't think I got enough good sleep) and adrenals are still recovering from the stress.

    This next time I'm going to be much more aware of those two parts of my body. Keeping them in shape is going to be really important if I'm going to do this over the long-term.

    The third component of the body that seems to be clear is the liver. My liver thus far has served me well, but I think the ImmunoPro Rx is a bit help. If I stay on this drug very long, perhaps I will seek out a Traditional Chinese Medicine doctor (a Chinese one with training in Taiwan or China) to help me with that. I don't what else TCM helps with (definitely not "lifting the qi" or whatever they try to do directly for CFS), but they're wizards with regards to the liver. Which is good, since Western medicine can do nothing for it, of course.

    I'm not sure about my kidneys. That's never been an issue for me either, but it could be. My grandmother had (in her 90s) kidney problems. I'm going to have to put more effort into this topic. Perhaps Jolie has thought about this topic....I recall she was talking about it when she was having so much difficulty with her first round of the drug.

    I honestly do feel like viruses are an extremely well-equipped and well-run army. (Definitely a different type of enemy than yeast.) Strategic planning seems absolutely crucial if one is going to win a battle against them. Fortunately, strategic planning is one of my strong suits, and so hopefully I will (with pharmaceutical and medical help) be able to outmaneuver them.

    I still wish I had more case histories to consider. It seems reasonable to believe that people who herx like me early on have lots of viruses, and that getting rid of the viruses should make a monumental difference in their health. I will ask my doctor this when I see him next.

    I'll give the day a 6/7 overall. It would have been an 8 if I hadn't been so sleepy during part of it.

    I'm trying 250 mg tonight and will see how it goes.
  5. Slayadragon

    Slayadragon New Member

    I sleep okay these days without Klonopin or Xanax, but I don't find the sleep to be as refreshing. It still takes me a long time to wake up in the morning with the Klonopin (just because I tend to have more energy at night.....reversed cortisol levels), but the sleep quality is better.

    Supposedly many CFS sufferers don't get enough Stage 4 sleep (which is the deep sleep during which your body repairs itself). The Klonopin appears to push the body into that deeper sleep.

    I believe that when I was on the Famvir, I didn't get nearly as much Stage 4 sleep (even with the Klonopin) as usual. Apparently my body was busy fighting viruses all night and thus didn't go into repair mode. Now that I've gone for a week without it and gotten a higher quality of sleep, I feel much more alive and centered during the times that I'm awake.

    Maybe a lower dose of the Famvir will keep that from being as much of a problem. Otherwise I may skip a couple of nights of the drug every week or two for a while, just to let my body try to catch up on sleep. If I don't go into Stage 4, my brain and adrenals (not to mention my kidneys or liver) won't get a chance to repair themselves, and I'm not going to have the stamina to last until the end. I will monitor closely.

    Fighting viruses with av's really is a strategic battle. Perhaps if I (with input from my doctor and the folks on this list and others) can figure out the best way to do it, it would be a good e-book. As if (even if I fully recovered all my energy) I would have time for that! Then again, if I had the energy that I did before I got sick, it would take about two days to crank it out. Not that I expect to be like that (about a 15 on that 10-point scale) again, but never mind.

    Anyway, CherylSue: what is your sleep usually like when you're not taking anything? What problems do you have? Maybe Klonopin isn't the right drug for you.

    Also, what are your other symptoms at this point? If you go through the Teitelbaum book (i suppose you have it?), which things have you tested and/or tried to address? Maybe you've missed chipping away at something that could make a big difference.

    I'm still not sure what the difference is between the "relapse" CFS (like yours) and the "steady state" CFS (like mine and Jolie's and Forebearance's). I think maybe there's a substantive difference though. The "steady state" CFS is starting to make some sort of sense to me, but the "relapse"....I don't know.

    I wonder why you would do well for substantial periods of time and then collapse _so_ deeply. Most diseases don't do this, do they? It reminds me more of manic depression (the non rapid cycling kind with long periods of highs and then long periods of lows) than anything else. In that sort of manic depression, the system seems to rev itself up for substantial periods of time, and then use up all its energy and totally collapse (except at a mental rather than a "physical" level....as if the brain isn't physical,, but never mind).

    But it's not like if you're manic-depressive, you can just say during the manic times, now, let's just rest and save up our energy.....because the body just keeps going like the Energizer bunny. And it sounds like that's what happens to you during the good periods too; that taking care of yourself and slowing down helps with the relapses, but doesn't totally eliminate them. Or I mean---based on what I've heard of "relapse" CFS in general, not just your (CherylSue's) case.

    Interesting that St. Johns Wort helps. That's good for the immune system as well as for SAD and irritability/depression too. Actually, I should write a post sometime about St. Johns Wort and the immune system sometime.....it's quite overlooked for that purpose.

    It seems to me that your immune system must be running on hyperdrive all the time and thus eliminating everything that comes along. But it doesn't have any excess capacity, which means that when it gets pushed too far (with an infection or vaccination), it just collapses. Like a muscle that's been worked too hard.

    So if that's the case.....what "relapse" CFS has is an immune system that is sub-par and working super hard to compensate. The "good" periods basically would be viewed as illusory, only going to last for the short term. And if you average out your low periods (which seem quite low) with your high periods (which are pretty much normal), you end up somewhere around a 5/6/7, depending on how much attention you're paying to your health. Which is about what I am.

    Hmmm. It's like my taking Provigil for one day and feeling absolutely normal, and then crashing big-time. I don't like those crashes. Not that you get to choose to be a "steady state" person (or that I get to choose to be a "relapse" person), of course.

    Well, the real key to manic-depression is not trying to lift up the lows, but to damp down the highs. I would think that for you, it would be easy to think that you're "supposed" to be and 8/9/10, and that this dip is an anomaly. As I'm well aware, it's very easy to forget that you're sick when you're feeling well. But taking care of yourself all the time (not just when you're feeling bad) as if you're really a "sick person" may be key.

    I keep going back to my big five (which I really think have to apply to all CFS patients): yeast, food allergies, hormones, sleep, and viruses/bacteria. (Well, and then there are things like digestion and coenzymes--CoQ 10 and NADH. I don't know why the latter aren't being produced. And, for some people, reduced toxicity.....although this seems to be a bigger problem with fibro than CFS. Not that I've done a study or anything.) I've really not heard of anything outside these areas that is helpful. (Obviously nutrition is always a good thing, but saying that's the answer seems to me like saying that it's the answer for AIDS....which CFS does seem an awfully lot like to me.)

    If you don't chip at _all_ of these, all the time, things are never going to get better permanently. They may seem better (just as an unmedicated manic-depressive feels perfectly fine part of the time), but it's always going to come back and bite you on the butt.

    For example, I went for six years eating no sugar and with no yeast problems, and so I thought it was safe to eat an occasional dessert. And then 9 months or whatever later, I ended up with a gut full of yeast, a vaginal infection that's now going on six months, and throwing up every 10 minutes because the yeast had grown into my inner ear.

    None of us can let down our guard, even for a minute, no matter how well we feel. It's a real pain to have to do this, and it certainly would be better if someone could fix the immune system itself. But for the time being, it doesn't seem we have any choice to to be super careful _all_ the time. It seems to me that gains are either (in 'steady state') fragile or (in 'relapse') illusory, and so taking them for granted is never ever ever appropriate.

    Just rambling. More as a reinforcement talk to myself than an explanation of your condition.

    If you think about CFS this way, though, the idea of treating a "relapse" sufferer with a big dose of AV's upon the moment of relapse is absolutely wrong, though. That's the time when the system is most vulnerable (because all the other energy is being diverted from adrenals, etc., toward the immune system), and thus a huge dose of the AV's is going to be unproductive (or extremely counterproductive). Rather, you would want a lower dose of AV's all the time, to keep your immune system from being in hyperdrive all the time when you felt "well," if you were going to use them. Your immune system thus wouldn't have to work as hard during the good times, and wouldn't be as vulnerable to a collapse.

    That's a sort of novel approach for disease, though. To treat the patient _exactly_ the same regardless of how well they feel, and no matter how well they seem to be doing even if the drug is taken away. (Which is not to say that you would take av's all the time....just that you would take them in the same way that a 'steady state' CFS sufferer would, pulsing them or rotating them or whatever.) Again, though, that's what you do in manic-depression. And this seems really analagous to me, now that I think about it.

    I need to look into the Cumanda/Burbur thing. If I can stay at a reasonable level of functioning on my 2-3 weeks at 250 mg of Famvir (per doctor's instructions), I should have time to do that.

    I honestly believe that the av's are going to be the key for a huge leap in CfS progress. (Although whether av's available now are going to be the right ones---and whether our systems may need further reinforcements to tolerate them---I don't know.) If the drug companies can be persuaded of this fact (through small-scale studies), assumedly they will put the money into testing the drugs already available for this purpose and start R&D for others.

    There would be an _enormous_ incentive for them to do this, of course. There are so many CFS patients that if they could figure this out, they could make oodles of money even if they charged a fraction of the $1500+ per month that the drugs cost us now. And I think they would charge less, which would put the treatments within reach of a lot more sufferers. (I think for the av's to work it would have to be in conjunction with other treatments---especially yeast---but that's okay. It would be good to have drug companies who wanted to sell av's informing doctors about CFS & yeast.)

    So I think that what I'm doing now---which is being a guinea pig for the AV's---is exactly the right thing to be doing, in order to help CFS in general. If they work, even partially, it would be a breakthrough. All of medicine is run by the drug companies, and so if drug companies start believing in CFS and trying to treat it, everyone else will follow suit. And then the disease as a whole will get more attention, and the adjunctive treatments will get more attention too.

    Upon reflection, I think that at least one drug will get approval for CFS treatment within five years. And then the floodgates will open. In 10 or 20 years, this is going to be at least as treatable as AIDS, maybe more so. I don't want to wait that long, though.

    Sorry for rambling on. I really would like to solve this puzzle, especially since not very many other people are doing it. But it doesn't have to be done tonight, I don't think. :)
  6. Forebearance

    Forebearance Member

    Hey, CherylSue,

    I wanted to note a couple of things. I've had two flu shots, after I had had CFS for 10 or 12 years and wasn't AS sick as at first, and they actually helped me. They felt like they helped my immune system get back into shape.

    There's newsletter called Phoenix Rising that is written by a guy with CFS who does a good job of compiling all different kinds of research. I don't know how he does it, but he was a scientist before getting sick.

    Hey, Lisa,

    Best wishes for your second round of Famvir! I am glad you are so aware of the effects it has on your adrenals and brain and sleep quality.

  7. cherylsue

    cherylsue Member

    Lisa: I printed this thread, reread it carefully, and highlighted the pertinent info. I think you hit the nail on the head! Thank you so much for putting into words what I suspected. It gives me hope that maybe I may have some control over this disease by altering my behavior. I certainly get panicky when I think it has complete control over me.

    I hope you are feeling a 7 or better. You certainly derserve a break from all this herxing.

    Forebearance: Thanks for the Phoenix site. I've looked on that site before, but hadn't known he was a scientist. I hope you are feeling better,too.

    I've been really sleepy these last two days. I've had a stressful week - both good and bad, and I think I overdid. I'm starting to feel "burny" skin again. That tells me something is cooking.

    Hugs to all.


    [This Message was Edited on 12/14/2006]
  8. Slayadragon

    Slayadragon New Member

    "Burny" skin? What do you mean by that? I've not heard of that symptom before.

    I sort of got on a roll last night, didn't I? Maybe having disposed of a few of those viruses has woken up my brain a bit.

    I don't have a high level of confidence that the theory is actually correct. (We'd want to get some level of comparison between how stressed your immune system was when you're "well" vs. how stressed a normal person's immune system was. I'm not sure what the right measurement would be for that.....my expertise on the intricacies of the immune system is still way lower than it should be.)

    But at least it's _a_ theory, which is more than I've seen from anybody else.

    Maybe in another 10 years, we'll get some idea if there's any validity in it from other people's research. But I would imagine you'd prefer not to wait that long.


    If you'd be interested in describing your exact sleep problems, maybe that would allow us to discuss better a theory of how to fix it. Klonopin may very well just not be the right thing to address your particular problem.

    How did you sleep last night (if you tried it again)?


    Also, this is the description of elderberry capsules from the Pure Encapsulations web site. Since this does not have sugar or artificial sweetener (both of which I avoid like the plague), I'd be far more inclined to try this than the Sambucol kind if you think it would work the same.

    Does the Sambucol have anything in it but elderberry? Do you think this would work?


    From Pure Encapsulations:

    "This elderberry extract is a uniquely concentrated, 100% pure extract providing enhanced levels of anthocyanins, the specialized group of flavonoids responsible for elderberry's immune system support. One of the most prized elderberry flavonoids is the compound quercetin. Studies have shown that the antioxidant properties of anthocyanins found in elderberry extract maintain healthy immune function and promote the strength and integrity of the vascular walls."

    Each vegetable capsule contains:
    elderberry extract 700 mg.
    (standardized to contain 28% anthocyanins)

    4–6 capsules per day, in divided doses, between meals.

    ***[This Message was Edited on 12/14/2006]
  9. Slayadragon

    Slayadragon New Member

    Thursday, December 14
    Famvir--Day 38

    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 30-36: No drug
    Day 37-38: 250 mg

    The 250 mg of Famvir last night knocked me on my tush again. I slept for about 12 hours total, including a long nap all afternoon.

    I felt pretty good during the time that I was awake though.....a little sleepy, but nothing major. Certainly not stressed. My husband and I went out to dinner, and that was perfectly fine.

    if i continue to go at this pace and support my adrenals, they should be okay, I think.

    I'm going to have to keep monitoring my sleep to make sure it's as deep as it should be....I can't tell yet. If I start not to feel refreshed after sleeping, perhaps I will take an occasional couple days off and see if I can make up for it by getting some good Stage 4 sleep.

    I'm going to continue to take the ImmunoPro Rx for my liver. I think that my liver held out okay during the die-off phase, but as I raise the dose of the drug itself (e.g. taking 500 mg or more all the time), this is something to be careful about. (This is especially true since I'm taking one other "real" prescription drug, Lamictal, for my mood swings.) Better safe than sorry with the liver, I think.

    I don't know about my kidneys. I still need to figure out how to support them more, apart from drinking enough water. Someone suggested dandelion root. I've never thought about my kidneys and thus not used cranberry juice (since I avoid sugar like the plague especially after this last yeast invasion), but I guess I could get it in supplement form. Other suggestions?

    I'm trying to think of other ways to make this virus-killing enterprise smoother. Obviously keeping yeast down so that the immune system doesn't have to deal with that too (although my major goal in general is to keep yeast down). Avoiding food allergens especially strenuously so that my immune system's not wasting its energy on mis-identified problems. Supplemental stomach acid and digestive enzymes (so that I can eat less food and get more nutrients from them.....digesting food takes _lots_ of energy). A little routine detox. Keeping psychological stress down!!!

    Other thoughts to build up my infrastructure so that I will have a better chance of winning this war?

    Anyway, so far, so good. This is about how I was my first five days on the Famvir (before i increased from 250 mg to 500 mg), and so perhaps it's within my tolerance range for the time being and I won't slide downhill as time goes on (as I did on the 500 mg last time). I hope so.
  10. connieaag

    connieaag New Member

    Glad to heard things are going a bit better ... hopefully you'll be tackling Michigan Ave. soon ... LOL

    Kathryn started the TF 650 Monday night. She did fine, but felt like she had the flu yesterday and slept most of the day except for the tutor coming and then going in for an adjustment and Graston with her chiro since her upper back to the right of her sine has really been bothering her. Not sure what that is about. Herx or just a flare.

    That area is a bit swollen as are her knees and ankles. The knees and ankles were swollen before TF, but I'm not sure it that is causing more inflamation, or the weathe changes AGAIN.

    She is still on the Minocin, but off of AV and Bactrim. So far no sinus issues. Still taking the respaire and Nasal steroid srpay, so maybe that will help.

    I was wondering how one knows if they are having a Herx or just another Flare. Or if there is any difference?

    Take care -- I still read your posts, just trying to focus now on TF.

  11. Slayadragon

    Slayadragon New Member

    I don't really get flares. I just get push-crash reactions.

    During my first go-round with the Famvir, I first started it at the same time that I went on a trip to NYC. I chalked up the fatigue to travel stress, even though that level of travel is usually okay. (I do crash when I get home from such things, but if I let that stop me, I'd never do anything and life would be pretty pointless.)

    I was dead tired at some moments in NY. No wonder. Not sure how I survived.

    The kind of annoying thing about the Famvir is that it's throwing my sleep off. No matter what time(s) I take it, I seem not to be able to get deep sleep or to sleep eight hours (or more) straight. i'm up at strange times and asleep at strange times.

    I also don't seem to be able to type as well. i thought for a while that the shift key on my computer was starting to break, but it's that my fingers don't move as smoothly as usual. I've *never* had that happen before. It's started up again.

    Anyway, so Kat finished this round of the AV. How long has it been since she stopped it? The white spots have gone away and not come back? Does she feel better in general?

    I'm amazed that she can go through the AV without a problem but is (it seems) herxing from the TF. The one time I took TF, it seemed like it did *nothing* (like so many of the other things I'd tried). It will be interesting to see if it ever has an effect on me.

    is there a particular virus that you're trying to target with the TF?

    What did the doctor think about the Klonopin idea?

    Glad to hear that things are moving along for you. Keep us informed, please!
  12. cherylsue

    cherylsue Member

    I'm glad you are sticking with the regimen. Your body is certainly reacting to whatever you are doing. I'm praying that you reach the next level of health. We're all watching your progress. If there's hope for you, there's hope for us.

    I have reread your post several times, and it has given me pause for thought. You raised a lot of good points. I liked your analogies, as well.

    I started this CFS bout with "sunburn" burning feelings on my arms, torso, that eventurally crept to my neck and face. (virus attacking nervs) You feel feverish and warm, but you don't have a fever. This feeling had subsided over the past couple months. I had a tumultous week, both good and bad, and had pushed myself considerably even to the point of driving 15 miles in one stretch. I was doing something every day. The last straw came when I heard that I was needed full time in January, not part time at work, To use up nervous energy I walked 7 blocks. Can we say "postexertional malaise?" I may be headed for a relapse within a relapse. I always seem to have a couple of them during bouts.

    I knew I was headed for trouble, so I called Dr. P for klonopin .5mg and he gave it to me. I've takin it twice so far, every other day. It knocks me out along with the anxiety. I only wake up once during the night for a bathroom break, but I think I'm getting better sleep. The only thing - it leaves me groggier during the day.

    I suspected I was having some type of seizure, because as I awaken from a deep sleep I go though a few seconds of feeling malaise and awful fatigue. It soon subsides. I was also getting frazzled sleep. I read that Dr. David Bell says the frazzled sleep does well with klonopin. However, if I were sleeping a lot with a drugged like feeling, Klonopin would not be recommended.

    I fixed the depression with St. Johns Wort. I am still having problems with anxiety and disordered sleep. Klonopin seems to help that, but not with the fatigue.

    I'd go for the Pure Encapsulations elderberry. Take one a day as a preventative measure. I know you have big time yeast problems. )I think I may have some yeast, too, although not in a big way. I've given up sweets, eat plain yogurt, and purchased some antiyeast supplements which I haven't tried yet.) Anyway, elderberry does help with warding off colds and viruses. I take it also when I'm herxing. It helps.

    Getting back to yeast, Dr. William Wong (website) recommends a protocol of Cream of tartar in water for yeast. He thinks Nystatin and Difulcan are too hard on the liver and don't fix the problem. I downloaded the protocol to give to my husband. He has IBS.

    You know, sometimes there are quick fixes with natural products. Not often, but sometimes. I used to get UTI's all the time , especially from fooling around with my husband. Clear Tract Powder (D-Mannse), a suggestion I picked up from Dr. Teitelbaum's book got me off of ABX and worked beautifully. Also, your suggestion of the Pure Encapsulations brand St. Johns Wort worked in just a few days for me, too. Dr. P.'s suggestion of taking iron for a low ferritin level may help, too. It's just a way of trying to chip away at our systems' defects.

    I can't tell you how frustrated I am by not being able to go back to work and do what I love. I feel locked in this prison of an uncertain future. I want my life back. There's so many controversial protocols, conflicting statistics, lack of new research, etc. They've been bandying the same ideas of CFS for decades.

    Sorry for my ranting. I just want to get well, and I'm not sure how to get there. I'm doing everything I know how, but it's not moving fast. Patience. Patience.

    Thank you all for your input.

    Forebearance and Jolie: How are doing these days? Making any progress?

  13. Slayadragon

    Slayadragon New Member

    I'm wondering about what you're calling "seizures" and thought I'd see if you can give me more clarification.

    This thought strikes me in particular because my husband has suffered from what he calls "anxiety attacks" all his life. He finds himself extremely anxious, all of a sudden, for no reason. Often that happens just after he's woken up. When this happens, he's absolutely unable to control himself and feels that he has to "do something."

    Last year when we were on vacation (and he had nothing whatsoever to be anxious about), I noted that this happened. We had just done a thorough health history with Dr. P for him,, and my husband mentioned that he was dropped on the head as a child and that he has had these "attacks" as long as he could remember. (His brain also works in other unusual ways.....Dr. P was absolutely fascinated by this.)

    Anyway, after observing my husband with his anxiety attacks after this conversation, I concluded that maybe what he really had was a mild form of epilepsy that was close to the rapid-cycling manic-depression that I seems to have. (Mania is similar to hyped-up anxiety, and depression is similar to collapsing back into bed after the anxiety attack is over.)

    So Dr. P was willing to do a trial of Lamictal, which is an anti-convulsant drug often used for manic-depression. (I've used it for eight years.)

    Since then, the problem has been almost completely solved. I'm amazed.

    In addition, a couple of years ago when I brought up the fact that i was taking Lamictal for my own manic-depression (stemming from my head injury), Dr. P said that it was being used with some success for CFS as well.

    From what you're telling me, the "sleeping pill" effect of the Klonopin seems to have made you more rather than less tired. I don't know that Stage 4 sleep is your problem (as it seems to be for Jolie and me) therefore. Otherwise you should arise more refreshed.

    What I'm wondering is if just the anticonvulsant part of the drug is what's helping you. If so, then maybe just a small dose of a plain anticonvulsant (one that wouldn't make you tired) would be appropriate. The fact that Lamictal raises the mood a touch would be a plus, since depression seems to be an issue for you.

    So a couple of questions:

    * Do you go through periods of sudden agitation or anxiety (followed by exhaustion) very often during the day?

    * Is this characteristic of what your sleep is like?

    * Have you ever had any kind of head injury? (If so, was it close in time to when you got CFS?)

    Upon reflection, the feeling that I had before going on Lamictal was very akin to agitated exhaustion (although i did have some up-and-down mood swings too). The Lamictal seems to have fixed those, leaving only the need for Stage 4 sleep (which I get with the Klonopin) remaining.

    Like most meds, Lamictal has a lower success rate (due to side effects) amongst people on this list than for most people. This is too bad, because most people who don't have CFS and take the drug don't have side effects and really like it. (It's one of the few psychiatric drugs that I haven't had any problems with.)

    I can't tell enough about what life for you if this is right. But if feelings (depression, anxiety, irritability, agitation, hyperness) seem to kind of hit you out of the blue for no discernible reason, the seizure component could be an issue.

    it's something to think about, perhaps. If you conclude you wanted a trial, it sounds like Dr. P probably would give it to you, since he's the one who brought up the idea that Lamictal had success in CFS.

    (BTW, fibro patients frequently take one of the other anticonvulsants---gaba pentin (Neurontin). That one tends to cause many people a lot of sleepiness, though. I think it helps them for pain. I gave up on that one very fast when I tried it. Based on my own experience I wouldn't start with that one, but between that and the anti-convulsant talk about the Klonopin, it seems like considering anticonvulsants is becoming relatively "standard thinking" in the tiny field of CFS treatment.)

    Does this sound like it's on the right track, or totally off? I can't tell based on the info I have.


    I had a lot of feverish feelings when on higher levels of Famvir. Basically like hot flashes, even though I was replacing my estrogen patches faithfully. That doesn't sound like what you had though. The sunburn symptom is an interesting one.

    UTI's are one symptom group I haven't had, and I'm trying not to think about the possibility. It's good to hear about your success though.

    I wouldn't crash at all if I walked seven blocks (well, I mean, I wouldn't if I weren't on the Famvir), but I still don't think I could work full-time. It depends on what kind of job it was, of course.

    Rant all you like. I do plenty of it myself here.

    I've gotten more patient over time, but I'd like to really make _progress_. Having my body fall apart and then having to regroup (as happened to me with the yeast recently) is very frustrating to me. It must be especially so for you during these "relapses."
  14. Slayadragon

    Slayadragon New Member

    Friday, December 15
    Famvir--Day 39

    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 30-36: No drug
    Day 37-39: 250 mg

    I did okay today. Went out for about four hours today---had lunch, did some shopping. A little tired, but nothing major.

    The only negative effect that I'm getting from this go-round is that my sleep cycle is disturbed. I find it hard to go to sleep when I want, and then am sleepy at random times during the day. Usually I sleep fine.

    Perhaps as the herxing subsides (or if the herxing subsides) that will become less of a problem, though.

    So far, so good anyway. :)
  15. Forebearance

    Forebearance Member

    Wow, thanks, CherylSue, for the explanation of burny skin. I haven't had that particular experience.

    I did have some nerve pain, though, which went away after I starting taking Candidase, so I'm guessing it was yeast-related. My nerve pain felt like it was near the skin, but it wasn't exactly like sunburn. But maybe it was a similar thing.

    I'm really sorry to hear about your sleep troubles. It sounds really frustrating. And of course, I can understand your grief and frustration about being sick. I'm probably still grieving and it's been nearly 17 years now.

    I like the sound of the Pure Encapsulations elderberry, Lisa. I tried the Sambucol and didn't like the taste. It didn't appear to do anything for me, but I only took one dose. And it's kind of hard to tell, with all my experimenting going on. As we know, different things work for different people.

    I'm glad that things are progressing in a predictable way for you, Lisa.

    I'm glad to hear a report about your daughter, Connie. She really goes through a lot of treatments!

    Love, Forebearance
  16. Prunella

    Prunella New Member

    Hi Lisa,

    I haven't read everything here, but I noticed you are dealing with a vaginal yeast infection (if I read that right). When I was getting them I finally found a product called Yeast Guard (I think that is what it was called) at Wagreens of all places. It is a homeopathic product and worked beautifully!!!! I also inserted acidophilus vaginally. I used to be able to find it in pill form, otherwise I would take a few capsules apart and make a paste with cool water. A little trickier to do, but it works!

    I never tried boric acid suppositories, if that is what you are talking about. I did a little research back then and decided they were a little to toxic for me.
  17. Slayadragon

    Slayadragon New Member

    Saturday, December 16
    Famvir--Day 40

    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 30-36: No drug
    Day 37-40: 250 mg

    Sort of a strange day. I woke up feeling as usual, after a while started feeling a bit foggy headed. Decided to take a bit of Ambrotose, which has arabinogalactan as the main ingredient, to see if I could get that feeling to decrease. (See my post called "Arabinogalactan," currently near the top of the board.)

    For about 4-5 hours I felt better, then started feeling a lot worse. Tired, headache, a little woozy. I'm a little better after a long nap, although now I'm feeling a scratchiness in the back of my throad.

    So I'm not sure what to think. Did I start feeling bad because the Famvir is kicking in? Or because of the Ambrotose? Or because I'm fighting off a "cold" (or for whatever reason Forebearance keeps getting congestion)? Or for some other reason? Not sure.

    Strange feeling early today that viruses in my brain were being killed off. I don't know how I would know that though. My intuition about my body is often good, but I don't know how I would know that.

    The Ambrotose in theory sounds interesting. Supposedly it increases NK cell activity, immune system functioning in general, and reduces herxing. Upon reflection, I'm not sure how it can do all these things though.....increasing NK cell activity should _give_ me a herx, I would think. I will try it again, after observing what my body does over the next day or two.

    Give the day a 5 overall.

  18. cherylsue

    cherylsue Member

    Klonopin works for getting me to sleep quickly. It calms my "brain chatter" and puts me into a deep sleep. I awaken just once now for the bathroom break, but return to sleep in a few minutes.

    Okay, part of my anxiety is having a daughter who is a late night person who comes in all hours of the night/morning. I worry about her being out late at night and I don't relax and fall asleep until she's home. We've had several discussions on this. She has recently graduated from a top notch university, has taken a part time job while she's looking for the job of her dreams. She's in "transition" and is still in the college party mode. My husband is laissez-faire about all of this.

    In addition, I always have disordered sleep with CFS. I wake up every 1 1/2 hours alert and panicky. I think it has something to do with my sleep cycle and brainwave activity. I've had two extensive sleep studies done, and nothing shows up. Being premenopausal doesn't help either with all the goofy hormonal fluctuations. I am also salt sensitive with higher blood pressure measurements that I'm trying to work out with reducing salt. Almost impossible to do Everything has salt. So I drink a lot of low salt V8 juice and eat bananas.

    Klonopin was the last card I wanted to play. I like the sleep quality and the reduction of anxiety. My mother/grandmother are/were very anxious and neurotic people. Whenever I became anxious I'd work, read, clean, walk, and try to keep busy. Having CFS keeps me from being too active.

    As I mentioned before St. John's Wort helped me with the depression and crying jags. Klonopin helps with the anxiety and sleep. ProBoost and elderberry ward off infections. Now, I'm dealing with fatigue and malaise, my two biggest problems. It's like peeling the layers of an onion.

    Lisa, it sounds like your husband is doing well on the medication for seizures. Hurray! You've been helped by it, too.

    I had a concussion during a skiing accident in college and another concussion in 1992 during an auto accident. I also had Epstein Barr mono when I was 5 years old with an enlarged spleen. I've never been athletic, although I enjoyed biking, swimming, etc. I was mostly into reading/studies as a child.

    Lisa, at some point will you have your NK, RNaseL, etc. levels checked again to see if the famvir is working for you? Ambotrose glyconutrients from Mannatech is controversial. Some swear by it, some say it is a moneymaker. What did Dr. Guyer say about the Amrotrose?

    Forebearance: Are you making any progress? What kind of doctor do you see? Do you do all natural products?

    Health and happiness to you all in the coming year.

  19. Forebearance

    Forebearance Member

    Hmm, that does sound like a strange day, Lisa. I have no idea what product could be causing your symptoms. It gets so complicated.

    I hope you feel better on Sunday.

    I agree that the theory behind glyconutrients like Ambrotose sounds very convincing. I just wish they actually did something good for me in practice! But I'm really glad for the people who do find them helpful. It seems like when they help someone, they really help a lot.

    To answer your questions, CherylSue, I'm not sure at the moment if I'm making progress, but I think generally I might be making a little progress these days. I just see a regular GP who doesn't know anything about CFS but makes sure nothing else is going wrong with me. Yeah, I do all natural products. Most prescription drugs feel like poisons to me. (I think that's just me, regardless of the CFS.)

    I use phytoestrogen and natural progesterone to get deep sleep.

    I'm sorry to hear about the anxiety your daughter is causing you, CherylSue.

    Love, Forebearance
  20. Slayadragon

    Slayadragon New Member


    Dr. Melfi on "The Sopranos" recently said that 26 is the new 21....meaning that it's hard for kids to get established. That's worrisome, especially when (so many people who do have a _little_ money are spending it like mad). Mr brother is about 24 and was just diagnosed with extremely high blood pressure---something like 220/100. He's working but doesn't have health insurance. i imagine he'll figure out a solution, though. Probably your daughter will too.

    Lamictal (the anti-seizure) medicine has been a lifesaver for me. Literally, maybe. It has helped my husband too. if it weren't for it, I wouldn't have nearly as much belief that AV's might be helpful also.

    So did you get your first concussion before or after you got sick? Or if after, did it contribute to a relapse?

    I bought some elderberry, which I will try.

    The fact that Pure Encapsulations sells the Ambrotrose (well, their own version) makes me think there may be something to it. Haven't talked to Guyer about that one. i will try it again, after a while. I know it's sold in a dubious manner and has a lot of dubious claims associated with it, but that doesn't mean it doesn't do _something_.

    Fatigue and malaise are the core problems for me too. I think it's hard to get to them until the immune system sheds it burden though. Those are the things I used to feel when I had the flu, and I'm sure that my immune system strain is far greater now than it was during those periods.

    Forebearance (etc.);

    i've been extremely sleepy all day and mildly headache-y. Some sinus congestion too. I'm now convinced this is the Famvir kicking back in. it is very potent stuff for me. I'm going to try to continue it until I see my doctor three weeks from now, though. i might skip some days or (after consultation with a pharmacist) try cutting the pills in half for some days, though. We'll see how it goes.

    Tomorrow maybe I will try a little bit of the Ambrotose again and see if it makes things better or worse. Have you tried glyconutrients yourself?

    I think my adrenals are holding up okay, anyway. The strangest thing is how my sleep patterns are messed up, with it hard to sleep at night and then super-sleepy during the day. There are worse things though.

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