Famvir Status Report Week 21

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Apr 9, 2007.

  1. Slayadragon

    Slayadragon New Member

    Friday-Monday, April 6-9
    Famvir--Day 151-154

    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 37-50: 250 mg
    Day 51-57: 500 mg
    Day 58-63: 250 mg
    Day 64-65: 500 mg
    Day 66: 250 mg
    Day 67-87: 500 mg
    Day 88-98: 250 mg
    Day 99-130: 500 mg
    Day 131-32: 250 mg
    Day 133-137: No drug
    Day 138: 500 mg
    Day 139-142: 750 mg
    Day 143-154: 1000 mg

    Between the increased Famvir (for viruses) and cream of tartar (for yeast), I think I'm starting to wear myself out.

    It's pretty amazing that (even with the human growth hormone) I've been tolerating this much Famvir. I shouldn't push my luck.

    The cream of tartar seems to be really effective though. I think it's going to have a big effect on my long-term functioning, which is why I've been motivated to keep taking it. Easy does it, though.

    I've been getting a whole lot of sinus drainage, which is unusual for me. I think this must be my body's way of getting the yeast out.

    I also feel like my brain is.....well, irritated. I don't want to be around people or exposed to stimuli. What I'm thinking is that having dead yeast (which I've heard may make formadehyde?) right next to the brain is indeed irritating it.

    I also am feeling some pressure in my lungs, especially when I breathe deep. This has been a problem for me throughout my illness, at times more than others. (At one point someone asked me to list my least favorite activities, and I put "breathing" at the top of the list.)

    It's been a while since I've felt this congested, and I'm wondering if this could be due to yeast die-off too. I don't know if yeast can live in the lungs or other parts of the body.

    Another possibility is that this a sign of the chlamydia pneumoniae that I once tested positive for acting up. That probably makes more sense. Supposedly that bacteria causes lung as well as heart problems.

    That reminds me that I started taking some oregano oil recently. Oregano oil kills yeast, but I think it also may kill bacteria. If so, that probably would be a bad thing. Going full-force again viruses is hard enough, but adding killing of both yeast and bacteria would be way too much.

    Dr. Wong (the "cream of tartar" guy) says that yeast can live anywhere in the body, but I don't necessarily trust him. For one thing, he says that cream of tartar acts by making the body more alkaline....even though (as I found out elsewhere) cream of tartar is in itself acidic. How could that be?

    On the other hand, it is indeed the case that yeast does not live well in acidic environments (which is why boric acid suppositories kill yeast), but changing the Ph of the whole body seems weird. I'd like to know more about how this stuff works, but I've yet to come across much so far.

    Nonetheless, it's increasingly clear that cream of tartar does work. And it's also increasingly clear that my sinuses are clogged with yeast that needs to be disposed of. My hope is that if I can do just that, I will feel a lot better.

    However, handling yeast die-off is hard even under the best of circumstances. I had forgotten that. I've lowered the dose substantially, but think I am going to take a couple of days off and see if I can get some strength back, especially since there are a few things I have to do.

    I'm going to skip the oregano oil for a while too. I can come back to these things when I am more easily tolerating the increased Famvir.

    I've been using about 15 g of ribose a day, but can't tell whether it's doing anything. All those Krebs cycle supplements helped a lot when I started them, but apparently have been buried under the pest killers I've been using. I don't know is they're helping at all at this point, but I guess they're not hurting.

    [This Message was Edited on 04/09/2007]
  2. Slayadragon

    Slayadragon New Member

    So did you get the colonic? Did it help?

    How much progress do you think you've gotten from killing off yeast (beyond where you were with just the AV)? Or are you still not done enough to know?

    I hope you're doing well.

    Best, Lisa
  3. Slayadragon

    Slayadragon New Member

    There are some comments from last week's thread that I want to respond to, but I haven't had the energy.

    I will respond on this thread soon.

    Thanks much to everyone for reading!

    Best, Lisa
  4. Forebearance

    Forebearance Member

    Hang in there, Lisa!

    Love,
    Forebearance
  5. Slayadragon

    Slayadragon New Member

    Hi CherylSue,

    Every time I think about you, I cannot help but believe that you have a different virus that's causing you problems than the ones that plague me. It seems like something that doesn't cause a lot of problems when it's in "hiding," but that once in a while it goes active and then all hell breaks loose.

    So in essence I do agree with Dr. P (who I am going to see at my husband's appointment tomorrow, btw). I just don't think it's HHV6 that's the culprit, since otherwise I would be getting that pattern too. I would suppose that it could be HHV6a (apparently the more evil form of the virus) since I've not been measured for that, but I'm not so sure. Otherwise I'd think Kelly (empty2void) would be getting relapses too, which doesn't seem to be the case.

    Anyway, unlike many of us, it sounds like your problem is more like just that one virus. If so, maybe the TCM actually will be of substantial help to you. i think that TCM works better when there's one major issue to address.

    Dr. Guo said to me that things would take a long time because I have so many varied problems, which certainly is true. It will be very interesting to hear what he says to you and what herbs he gives you. i imagine that through the pulse etc. measurements he'll be able to get as good a reading on your underlying issues than most or all lab tests, and so perhaps you'll at least get a stronger sense of what's going on.

    I don't know if I'd discontinue the Nexavir just yet though. Maybe in combination with the herbs, it would be of substantial help (as opposed to only of some help as it's been so far). Are you supposed to pulse it though?

    I've been reading about your questions about the antibiotic and think it's possible that there could be something to that theory. It sounds like that one in particular gives the body a very sharp jolt, which could well throw everything off balance.

    Early in my own illness, I went to a D.O. who diagnosed some kind of bacteria and parasites. He prescribed Flagyl and cipro. I did take the cipro for a week or so (I don't know how much damage that caused), but went off the Flagyl after two days since it just felt wrong. And I don't think it was from parasite die-off, since later Dr. Guyer gave me a mild "antique" antibiotic (Yodoxin) that cleared it all up with no symptoms in no time flat. Antibiotics (especially the new heavy ones) really scare me.

    I found out the other day (through a survey from my state rep) that Illinois is considering passing a law requiring women to be vaccinated against HPV (which causes cervical cancer). I don't know if I like that either. Vaccines scare me too. I suppose that sounds weird considering that I'm doing this experimental AV stuff, but it's still true.

    Have you used the inulin or know anyone who has? I wonder what it does beyond the cream of tartar effect?

    I definitely started too high on that stuff. The thing is, I thought (correctly) that I had little yeast in my intestinal tract and thus thought it would be good to knock off the refractory vaginal infection that keeps stubbornly refusing to go away. I neglected to think about the fact that it had the potential of fixing the sinus yeast (which I had given up as a lost cause years ago). I will say that getting a huge effect on something does tell you that there's a big problem there though. I will go more slowly when I restart.

    Best, Lisa
  6. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    What do you mean why you say that your NKC activity is in normal range? The more I find out about this topic, the more I feel like the "normal" range for this is misleading. The range is (for the test I took) something like >19 or 20-100, but I keep thinking that unless viral load in the body is extremely low, NKC activity should be really high. (The soldiers only need to be working hard if there's an enemy attacking.) With the amount of viral activity that you're still measuring for (and that my interferon alpha shows), maybe our levels should be more like 150 rather than 20. Just a guess.....

    This could be why it seems like our (or at least my) T-cells seem normal too. Maybe with this many viruses, their activity should be very high too. I have to say I've never been able to hypothesize a link between why NKC in particular would be affected. Having the immune system as a whole be screwed up seems to make more sense.

    My experience with the predecessor of AHCC (MGN3) was that it gave me a constant mild feverish feeling and slight tiredness without any improvement in symptoms. Of course, I only took it for two months.....what a naif I was, to think that my viral problems could be cured that fast!!! (This was something like five years ago.) I put the AHCC on my list of possible adjunct therapies at a recent visit to my doctor, but he didn't recommend it. Still, especially since AHCC is supposedly stronger than MGN3, perhaps it would be worth giving another go. Maybe if I could get close to getting over the hump, a little push from it would be helpful.

    Now, the fact that you talked to your doctor about gancyclovir shows that you are _especially_ proactive. Desperation will do that, but only if you're a certain kind of person. Having been that sick must have been really scary.

    What do you think caused the shortness of breath? Was that a heart problem too? Did you ever feel anything weird with your lungs as well?

    I can't remember, have you tested positive for chlamydia pneumoniae? People seem to think that this is a heart destroyer, but the fact that my doctor says that viruses attack the heart plus the fact that you and Forebearance apparently have improved heart problems by killing viruses makes me think cp's not the only culprit.

    What has the non-denatured whey protein doing for you?

    Have you had DHEA and cortisol tested? Note that the DHEA range is extremely wide. When I got sick, my DHEA at the low end of "normal," but nonetheless supplemental DHEA was a godsend for me. I went from being at about 10% to maybe 40% within a couple of days. Not everyone is helped by this hormone (adrenal extracts can work too),, but when they are it can really be dramatic.

    I've not ever felt like I had problems with too much progesterone. I've been taking 200 mg (sometimes 300 mg) of Prometrium for more than a decade. My period has disappeared for very extended periods of time and then returned on a number of occasions since then, and so I've varied the number of days per month I take it accordingly. I don't know how I would have survived without it.

    (The Chinese doctor seems to be putting some energy into solving my "female problems," btw. This seems to me to be the least of my concerns, but maybe it's more of an underlying issue with regard to my feeling bad in general than I think.)

    Anyway, the book I like on hormones is called "Natural Hormone Balancing for Women" by Uzzi Reiss M.D. This is what he says about signs of too much progesterone:

    1. Mild reaction: drowsiness, slight dizziness, sense of physical instability
    2. Severe reaction: feeling of being drunk or spinning, heaviness of the extremities

    In addition, he says that women with systemic candida infections (!) can experience the following "paradoxical" reactions of excess:

    1. You feel antsy, anxious, can't sleep and retain water.
    2. You experience hot flashes or depression.
    3. Your appetite increases and you start gaining weight (only occasional)

    He says that if candida is resolved, these paradoxical reactions tend to go away.

    I'd highly recommend this book, by the way. It's much more comprehensive than others that I've read. It doesn't sound like hormones are your core problem per se, but getting the balance in the right shape might help you to feel a whole lot better while you work on other stuff. Hormones were one of the first things I worked on when I was sick, and the fact that my CFS has mostly been on the "mild" side throughout (maybe 60%) has been due largely to that.

    How have you been monitoring your Ph? Probably I need to do that. Also, since it's too acidic, have you been doing things to bring it to normal? What do you think of the couple of threads that Stormy started a while back (recently bumped to the top of the board)?

    Best, Lisa

  7. Slayadragon

    Slayadragon New Member

    Hi Forebearance,

    Now that's very peculiar that too much progesterone would make your periods come sooner. What I've read is that if your period comes early or if there's spotting, that's a clue that you could use more progesterone.

    Of course, you've experimented with hormones so much that I'm sure that's a sign for you. Another paradoxical reaction. We are an awfully weird bunch.

    Best, Lisa

  8. ask2266

    ask2266 Member

    I'm doing great on the Famvir front (Week 10 [14]), not as well on the yeast front.

    For almost 4 weeks, I've been taking digestive enzymes and 3 Three-lacs per day for the yeast. When I first started, I was having terrible bloating and gas. It was like WW III in my intestines. Now, the gassiness and stomach problems have mostly subsided. I still feel tired and yucky though--sporadically. Some days I'm o.k.; other days I'm really tired. The yeast die-off can be pretty rough.I'm also having my very cranky moments and depressed moments, not to mention those overstimulated moments. I'm also quite itchy all over and having big time nasal drip.

    I don't know if the colonic did anything to help or not. I was already feeling better in terms of my stomach problems, so I don't know if the colonic helped that continue to improve or it improved on its own. It's so hard to know which treatment is doing what.

    I had to go off of my heparin for a week to do the colonic, and when I went back on that, I definitely had some sort of die-off (probably viral).

    Anyway, I'm hoping to see some lasting improvement in the next 2 weeks in the yeast department. I remain optimistic, but we'll see....If I'm still struggling at Week 6 of yeast treatment, then I'm going to add the c.o.t.
  9. cherylsue

    cherylsue Member

    I posted a new thread on Dr. DeMeirLeir's CFS subsets and some new info from a conference. In subset profile 1 Nk cells can be a little low or normal. The symptoms resemble MS (remitting/relapsing??). HHV6 encephalitis appears in 20% of these people. Pesticides, heavy metals, etc. are also implicated.

    I definitely fall in this pattern. I'm just trying to get some more research from Dr. DeM's patients on how he treats them. I'm doing a combination of Cheney and DeMeirleir protocols. And a little bit of this and that.

    I'm improving slowly. Easter was a good day. Monday was a fatigue day. Today was in between, but I did walk 7 blocks today, and I felt okay afterwards. However, not good enough to go back to work yet.

    Lisa, do you think Dr. Guo can help me with sleep problems? High blood pressure? These are some of the things I'd like him to address.

    Like you, I'm a bit skeptical about this new cervical vaccine. I had a CFS relapse (within a relapse) from the flu vaccine. New ABX are scary, also. My body is very sensitive since I've had CFS.

    I believe inulin is a fructose, and I'm steering clear of it because DeMeirleir tests for FOS, or fructose sensitivity.

    I am amazed that the Cream of Tartar is really doing something for you all. I hope it does it job and clears the yeast for you.

    Sorry, I'm a bit tired tonight, so my responses are a bit brief. No more insights this evening.

    Hugs,
    CherylSue

  10. Slayadragon

    Slayadragon New Member

    Upon reflection of your comments, I guess the colonic must have worked so well for me because I was at the end of my die-off when I got it. Perhaps if I'd still been killing lots of yeast at the time, it wouldn't have worked nearly as well.

    The other thing that I didn't realize was that you're doing enzymes (which I think means Candidase or similar). Based on what I understand of Forebearance's experiences, I _think_ that means that you're directly killing yeast throughout your whole body, not just in your intestinal tract.

    I don't know how cream of tartar works (and have yet to get a good explanation), but it seems categorically different to me than the usual ways of killing yeast (such as probiotics or no sugar or nystatin or most herbs). None of that yeast-killing has ever my sinuses so directly or strongly, and so something different is going on here. The same thing seems to be true of the Candidase.

    I've been getting huge amounts of postnasal drip and other mucus as a result of the cream of tartar, and it is not fun at all. No wonder you're having such a hard time, if you're doing your gut yeast and sinus yeast (plus whatever else there might be hiding in various organs) at the same time.

    I have found decreasing sinus yeast (which I seem to be just doing now directly for the first time ever) to be far harder than decreasing intestinal yeast. With the intestines, I just felt kind of cloudy and crappy. The sinus yeast is really mentally irritating though. As far as I can tell, the cream of tartar and the enzymes seem to be about equivalent with regard to getting rid of it. It's a tough road.

    I'm pleased to have found a way to get rid of it though. I think it will make a big difference in terms of my health (and maybe especially with regard to my concentration) once I get it done.

    I've found saline nasal spray to be vaguely effective at clearing out the dead stuff, but it's still really hard. Especially with the increased Famvir kicking in, taking a break has been a good thing.

    As Forebearance has demonstrated, the good thing about enzymes is that they can be stopped and started at will. That seems to be the case with cream of tartar as well. My symptoms are pretty much dying off now that I've taken a break for a couple of days.

    Before you started on the enzymes, what were your biggest symptoms?

    It's interesting that you got such a big die-off when you restarted the heparin. That's an important sign that you're nowhere near ready to discontinue the antiviral, I think. The one mistake that I've seen a whole bunch of FFC patients make is to discontinue the AV's too early.....which is particularly bad since the viruses can be resistant once they return. Probably you already knew you weren't ready to discontinue or even start pulsing, but perhaps it's good to have supporting info to bring to the doctor.

    Still, I am sincerely and extremely sorry to have led you astray with the colonic.....

    Best, Lisa

    [This Message was Edited on 04/11/2007]
  11. Slayadragon

    Slayadragon New Member

    Tuesday, April 10
    Famvir--Day 155

    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 37-50: 250 mg
    Day 51-57: 500 mg
    Day 58-63: 250 mg
    Day 64-65: 500 mg
    Day 66: 250 mg
    Day 67-87: 500 mg
    Day 88-98: 250 mg
    Day 99-130: 500 mg
    Day 131-32: 250 mg
    Day 133-137: No drug
    Day 138: 500 mg
    Day 139-142: 750 mg
    Day 143-155: 1000 mg

    My system started to feel really worn out this morning. I woke up too early (agitated exhaustion), then spent six hours on an expedition to Chinatown (my husband got acupuncture and so I went with him). Too much for one day.

    I'm feeling vague feverish feelings, which is my usual sign of viral killing. It's been about two weeks since I raised the Famvir dosage, and so perhaps that's to be expected.

    Upon reflection, I decided to take a whole bunch of B complex before we left. (It's a modified B100 by Pure Encapsulations.) I usually take one capsule; today I took four. I think it helped a lot with the agitation (if not the exhaustion). People keep bringing up B12 for that, but I tend to think that maybe without the other B's there's a limit to what even the most friendly type of B12 can do.

    I think that putting aside the cream of tartar for a short while is a good thing. Killing sinus yeast is hard!!! Intestinal die-off just makes me feel cloudy and crappy, but the sinus die-off is mentally irritating. Vaguely poisonous, even.

    I don't know how cream of tartar works (and have yet to get a good explanation), but it seems categorically different to me than the usual ways of killing yeast (such as probiotics or no sugar or nystatin or most herbs). None of that yeast-killing has ever _touched_ my sinuses (except perhaps indirectly after a long period of time as a result of the reduction of gut yeast), and so something different is going on here. The same thing seems to be true of the Candidase, from what I hear.

    **

    Note to myself:

    Dr. Wong claims that cream of tartar makes the body more alkaline. However, it's my understanding that a lower Ph means more acidic. That's why this post on one of Dr. Wong's websites strikes me as relevant:

    "Dr. Wong,
    I'm taking the cream of tartar because of candida problem for 4 days already. I still have watery diarrhoea. How long does it take to stop? I found on the internet that cream of tartar is dengerous for the liver. Is that truth? the pH of my saliva went down from 6.75 to 6.5 Is that normal? Should I stick to the program regardless of my diarrhoea?
    Sincerely: Robert"

    Dr. Wong replies that this is normal and that the program should be followed for a month.

    (He also says that the amount of cream of tartar taken is no more than is in tartar sauce, even though standard tartar sauce contains no cream of tartar.)

    It is true that the yeast does not live well in acidic environments, which is why boric acid is helpful with vaginal yeast infections.

    I don't know how I feel about making the whole body more acidic though, even for a while. Maybe Candidase is something to consider instead....

    **

    I'm still very grateful to have found something to get rid of the sinus yeast, which is the one major "second-tier" problem that I've never been able to get under control. Hopefully I'll get a good bump up (perhaps especially in my concentration?) once I'm done.

    My lungs continue to feel congested and to hurt when I breathe in deep. Upon reflection, this feels an awfully lot like the time in college when I had regular pneumonia and had to be hospitalized (except not as bad).

    It also occurs to me that this feeling has been a recurrent symptom of my CFS, becoming bothersome pretty much only when I'm under major stress.

    I'm thus thinking that the probability of this being chlamydia pneumoniae is pretty high. I've been wondering what effect that bacteria (which came up once in a test) might be having on me, and this sounds really reasonable.

    If this lung thing were yeast, I don't think it would be as directly tied to stress (since none of my other yeast seems to vary according to that). The immune system as a whole takes a nosedive when the body is under stress, and I would think bacteria would be amongst those things that would flourish in response.

    The other effect that seems to be tied to stress (particularly overwork) is a feeling that I have sometimes gotten that "every cell of my body is dying." Somehow I'm under the impression that's typical of chlamydia pneumoniae too, although I could be wrong.

    In that case, perhaps the lung thing is acting up because a) my body has been under stress with simultaneously hitting the yeast and viruses and b) I ticked off the c. pneumoniae by tossing some oregano oil in the mix.

    Then again, I guess it could be a virus that the Famvir's killing off. This feels bacterial to me, but what do I know.

    Regardless, the emergence of the lung stuff suggests that it's time to ease up on the stress. Taking a breather from the cream of tartar seems the easiest way to do that.

    My game plan is becoming more complex.

    Eventually I should get to the point where the viral killing is not causing significant systems stress. I've been working at this for a long time, and so hopefully even with my high viral load it will happen soon.

    Then I want to hit the sinus yeast. I was hoping that could be done in a couple of weeks, although after hearing about someone who's been struggling with sinus yeast killing for a month, I'm not so sure. In any case, getting rid of this (as well as whatever other yeast is hiding in my body) seems really important

    Then perhaps, I will try a good dose of oregano oil for a while. My doctor has been enthusiastic about this for a while, which should have struck me as noteworthy since I've never heard him go out of his way to recommend any other herb. Now that I've read about how effective it is at killing c. pneumoniae (and presumably other bacteria and/or mycoplasma), I understand why he has found it interesting. (Henceforth I am going to visit him much more regularly. He could give me lots and lots more ideas, if I just were in his sight of vision for a little bit more time.)

    Then I think it will be time to do the methylation cycle block supplements again. It seems like that will be a long time from now, but I feel like maybe my progress is starting to snowball even though I don't yet feel well. (I'd rather my body be using the energy I have to get well than to make me feel well, so I'm trying not to let this bother me.)

    And besides, by then there will be a few data points with CFS patients who have used the methylation block supplements for more than a very short period of time. This might give me some information on how to use them more optimally and what to expect. God knows how discouraged I'd be if I were the first CFS patient ever to use antivirals, for instance....

    I don't know why, but the thought of the Valcyte is making me more nervous than it was before. Maybe it's just that the realization that Valcyte is not an automatic cure makes me think that perhaps my doctor's tried-and-true Famvir (used for long periods of time) would be a bit safer and equally likely to make me well. I imagine that I will end up using Valcyte, but maybe it will just be a little dollop. I kind of hope so.

    My husband continues to do well with the Chinese medicine for his liver problems. He said that the acupuncture made him feel different than he ever had before--like energy was moving around in his body healing him. He came home and slept like a log for several hours, and so that healing part might be true.

    He also saw an infomercial on how greens powder helps the liver, and so I gave him the jar that I had bought for myself but not yet felt ready to use. I then did my own infomercial for the non-denatured whey protein, drawing a picture of the liver with little garbage cans (toxins) in it and then adding little garbage men (glutathione) needed to take each one away. I seem to have been convincing since he is now taking the "white powder" as well as the "green powder" of his own volition.

    I am really glad he's improving so fast, although it's reiterating to me strongly the difficulty of dealing with my own disease. (Liver problems are not at all easy either, but it's a comparatively straightline path compared to CFS once you go outside of traditional Western medicine and put a lot of thought into it.) Not that he's especially well yet either. If we can both be in good shape by sometime this summer, I would be really pleased. It seems vaguely possible, which is at least a step in the right direction.

    [This Message was Edited on 04/11/2007]
  12. cherylsue

    cherylsue Member

    You are very attuned to your body, and it sounds like the c. pneumonia may be acting up for you. You are stirring the pot to say the least.

    Was it Dr. Guyer who suggested the oil of oregano? I have some that I take from time to time. It is excellent for stomach problems. It kills bacteria. It requires several doses a day, though. It is also supposed to help with yeast, so be careful if you use the Cream of Tartar. I wonder if Dr. Wong knows what he's talking about (tartar sauce?) However, he did get this protocol from another researcher, so it isn't his own. Maybe, he's just adding his thoughts.

    I'm having a malaise day. Maybe I overdid the walking yesterday, although it felt good doing it. I'm having a problem with postexertional malaise. Having some paresthesia and fatigue, too. Waking up to snow isn't what I wanted to see, either.

    Cheerio! (Not)
    CherylSue
  13. ask2266

    ask2266 Member

    Oh, I don't think that you mislead me re: the colonic. I definitely wanted to have one done regardless. I had heard that it was good for people who have been on large volumes of medication for long periods of time, and I definitely fit that bill.

    I quit my diflucan last week, because I felt like the 3-lac, digestive enzymes and probiotics were doing the trick and that the diflucan wasn't working against the yeast. Then, blamo!!-- I get thrush in my mouth and a yeast infection today. It SUCKS. The only people that are supposed to get thrush are people with AIDS. I'm really depressed, if you can't tell. I've been having really bad depression and mood swings.
  14. Slayadragon

    Slayadragon New Member

    That's really peculiar that you got such improvement with the Famvir but now are stuck in candida hell. Did you have candida before you started the AV?

    I got thrush once at the very beginning of my illness (about a week after being hit with the "killer flu"). I was pregnant at the time (miscarriage followed), and the ob/gyn chalked it up to weird things happening when pregnant. I'm not so sure.

    I will say that the cream of tartar was extremely potent for me. I don't know how it compares to the digestive enzymes in strength, since I've yet to explore those. Cream of tartar makes me slightly nervous in that it's (as far as I can find on the web) almost totally untested except on this board, and also since I don't understand its mechanism. I will go back to it myself if necessary though.

    My doctor likes oregano oil, huge amounts of probiotics (60 billion units per day) and Vitamin C (as much as possible) for yeast. That may be too wimpy for you though.

    I started a thread a while back called "Controlling Yeast." (This was in the days prior to the cream of tartar mania on this board.) Let me try to find it and bump it up for you.

    I feel really bad for you!

    Best, Lisa
  15. Slayadragon

    Slayadragon New Member

    Wednesday-Thursday, April 11-12
    Famvir--Day 156-57

    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 37-50: 250 mg
    Day 51-57: 500 mg
    Day 58-63: 250 mg
    Day 64-65: 500 mg
    Day 66: 250 mg
    Day 67-87: 500 mg
    Day 88-98: 250 mg
    Day 99-130: 500 mg
    Day 131-32: 250 mg
    Day 133-137: No drug
    Day 138: 500 mg
    Day 139-142: 750 mg
    Day 143-157: 1000 mg

    I'm hanging in there with the increased Famvir dose. I have been remaining active (going out for several hours a day) and getting by okay.

    At this point my symptoms are all brain related. It feels sort of like my brain is inflamed, which is ironic because in the past I used to object vehemently to that concept inherent in the original version of ME (e.g. encephalomyletis (sp?) ).

    At present it's my cognition that's not functioning well; the emotional part (except when I feel forced to think and feel frustrated) is okay. This is encouraging though. My cognition is the thing I most want to fix, and my doctor thinks that symptoms on the AV means that improvement will be noted in the future.

    Sleep is more or less okay, with 2 mg of Klonopin and melatonin (plus sometimes a Xanax if I wake up early or want a nap). A lot of Vitamin B seems to be helping too.

    The main thing that is holding me together is the HGH. It feels kind of like a bandage holding me together while things on the inside destruct. There's no way I'd be able to take anywhere near this much Famvir if I weren't using it.

    I increased the HGH dose to .1 mg (2/3 iu). The fact that I am tolerating it and remaining active is odd, since before the Famvir even the tiniest bit of the stuff (1/10 iu) knocked me into bed. Maybe that's a sign that I'm improving at some deep level. It would be nice to think so.

    I saw my regular internist (Morris Papernik) with my husband yesterday. He has an interest in CFS, and so we talked briefly about my ImmunoSciences test results and about antivirals.

    He said that in order for Famvir to work, I probably would need 4,000 mg per day and that most people couldn't tolerate that. I find that very bizarre. Even Dr. Teitelbaum only suggests 2,300 mg (and I thought that was extreme!). Then again, Dr. Papernik's only kept people on it for four months. I'm of the impression that most people need to stay on it for a lot longer than that.

    Dr. P does have hope for Valcyte but mentioned its toxicity. I came to the conclusion after the meeting that my current strategy (knocking off as many viruses with the Famvir as possible and then finishing them off with Valcyte) was a pretty good one.

    I'm starting to wonder if I wouldn't be better off just doing whatever Dr. Guyer suggests and not worrying about it. I am still using the same interaction paradigm that I did almost a decade ago, when he had just started his practice and he and I were approximately even in terms of our knowledge about how to treat this thing. But he's had a lot of experience and time to think since then. I could do a lot worse.

    I do think that the Traditional Chinese Medicine has been a good addition. I'm not sure how much support it's currently giving me beyond the HGH, but it certainly was significant when I first started it.

    Reflecting on the cream of tartar after a couple of days off it, I have to admit that it does a bang-up job of yeast killing. It still bothers me that I don't understand its mechanism though. And I wonder if, after using it for a while and then discontinuing, the yeast wouldn't come back. Candidase is quite expensive, but I think I will see if it works as well as the cream of tartar (especially on sinus yeast and vaginal yeast) once I get back to yeast killing. In any case, maybe it would be a good long-term treatment to help keep things under control.

    The cream of tartar (probably through sinus die-off) made my brain feel irritated. The Famvir is making it feel inflamed. That the two together would be a bad combination seems quite clear. Perhaps the sinus die-off would not be much of an issue on its own. I hope so, since I would like to get rid of the yeast in that particular site.

    [This Message was Edited on 04/12/2007]
  16. cherylsue

    cherylsue Member

    Your remark about your brain inflammation struck a chord. That's exactly what CFS feels like, especially in its acute stages. I mentioned on my info sheet to Dr. Guo that I may have an HHV6 infection with inflammation of the brain.

    Well, that got him going. He asked, "Who told you that?!" He shook his head as if to say no. Then he remarked that western medicine does not fix CFS. He didn't seem to think that the brain inflammation was real, I guess. He just said that I have an infection that I've never been able to overcome fully.

    I didn't quite understand that. I wonder how open minded he is. But I guess if he helps me, who cares?

    Personally, I think the viruses are having a party in my brain.

    Party girl CherylSue (NOT)

    P.S. Stormyskye is trying cream of tartar and molyb... and likes it for yeast. I think she is adding it to her protocol. Someone mentioned on another post that long term use may affect the liver. But all the anti yeast RX's do that anyway. It just seems like such a simple approach. Time will tell.

    Dncnfngrs has some sobering news that she just posted. Be sure to read it.

    [This Message was Edited on 04/13/2007]