Famvir Status Report Week 23

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Apr 21, 2007.

  1. Slayadragon

    Slayadragon New Member

    Saturday, April 21
    Famvir--Day 167

    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 143-167: 1000 mg

    My treatment with Famvir is detailed in my biography (the bottom 1/3 or so). It is up-to-date and gives a summary of what I am doing. (Just click on my name to the right of this post to access it.)

    I have continued to take 1/4 capsule of Candidase per day, along with about 1/32 pill (ground into powder) of the folate supplement FolaPro most days. Forebearance has had good success with small amounts of these substances, and so I am following her lead.

    Candidase is supposed to kill yeast. I had a raging sinus infection and a lot of diarrhea when i took a full capsule last week, and so I am going easy on it now. Yeast is my foresworn enemy, but I don't want to put too much stress on my body.

    The folate supplement is one of the components of the methylation cycle block protocol being discussed on the board by Rich van Koynenberg. Taking a larger amount prompted more of a detox response than I want at this time. My hope is that a very small amount will calm down my brain for the time being. Eventually (after i get through most of my antiviral usage), I may use more in an attempt to get better and stay well.

    On the Krebs cycle front, I have started taking 500 mg of acetyl-l-carnitine and 3 mg of ribose. (I think that larger amounts of ribose contributed to my yeast problem.) I also am taking 50 mg NADH (sublingual), 300 mg of CoQ10, and generous doses of magnesium. In addition, I ordered some Coenzyme A, which when taken in large enough doses is supposed to help. I have had good results from some of these substances on their own, and the combination is supposed to work even better to increase energy. We shall see.

    I have felt extremely sleepy during the past couple of days, and actually have been sleeping quite a lot. I am taking this as a sign that my body is resting and hopefully killing lots of viruses, and so am not making any efforts to "overrule" it.

    I am not certain what is causing the sleepiness. It could be the FolaPro. I also have been drinking some reishi tea given to me by my Traditional Chinese Medicine doctor, and it is possible that the immune strengthening effects of this are contributing. Perhaps I eventually will figure it out.

    My lower back has been hurting a bit. Usually I have no back pain whatsoever. It has been noted by others in the past that this may be associated with the use of Candidase. I have yet to settle on an explanation of why this might be, but will continue to monitor into the future.

    My muscles have been more stiff than they have been in recent months. I'm not sure what to make of that either.

    I'm not experiencing any other symptoms except for occasional feverish feelings (which I am attributing to viral killing) and ongoing fatigue. In other words....compared to part of the time I've been on Famvir, I'm doing reasonably well!
  2. munch1958

    munch1958 Member

    Hi Lisa! I've been following your antiviral and detox progress. Looks like it's working for you. After I finish my Lyme protocol I will be starting some sort of AV for EBV. Then I'll be going over your notes in more detail.

    Glad you are able to tolerate ribose. I could not since I am allergic or intolerant to corn. I flushed what was left of my container down the toilet. It made me hypoglycemic and giddy then shaky and crabby. The extra energy didn't seem worth the extra depression.

    I had no idea what was in it and should have read up on it before getting it from FFC. Ribose is made from fermented corn syrup. The manufacturers of Corvalen-M state that there is no corn left in the product. The label does NOT say corn free.

    I've been trying to control yeast since 1981. Have you ever tried undecylenic acid (Thorne Research Formula SF722) or Capryl (caprylic acid)? I read about this yeast killing protocol in Stephen Harrod Buhner's Healing Lyme book. Two weeks ago I added saccharomyces boulardii and PB8 as he recommends in the book. I hope to get some die-off.

    I've been buying Renew Life Probiotics since they are free of common allergens. One capsule contains 50 billion units. One bottle is about $25. I'm very happy with this brand but it must be kept in the fridge.

    Bifidobacterium Bifidum 25
    Lactobacillus Acidophilus 10
    Lactobacillus Rhamnosus 4.5
    Bifidobacterium Longum 2.5
    Lactobacillus Plantarum 1.5
    Lactobacillus Bulgaricus 250 Mill
    Lactobacillus Salivarius 250 Mill

  3. Slayadragon

    Slayadragon New Member

    Hi Munch,

    I looked over your bio and noted that you have an awfully lot of things going on. I would think it would be hard to know where to start and hope that you're making progress.

    Did you have typical lyme symptoms before you started treating? Have you made any progress, do you think?

    That sounds like a really terrific probiotic. I've been getting mine from my doctor's office, but am going to keep a record of this one in case I need it.

    I'm allergic to corn too, although it's possible that since I've been working on my gut my allergies are getting better. (Or maybe the antiviral is even helping.) I got a blood test for food allergies a couple of months ago, and all that came up was mild allergies to dairy, eggs and a couple of other things. I still am avoiding the other things that have bothered me, one of which is corn (major depressions!).

    I've been using the Pure Encapsulations ribose. It doesn't say what it's made out of, which is weird. I think it's been feeding yeast though, and so I'm staying at a low dose. I'm not sure how much extra energy it's giving me.

    I rotated caprylic acid for the yeast a long time ago and found it mildly effective. I've not heard of undecylenic acid before. I've always wondered about the saccharomyces boulardii--that's supposed to be friendly yeast, but I wonder if I'd be allergic to it. My yeast problems are magnified a lot by the fact that I'm allergic to yeast.

    I am pretty sure I read a while back that you've used nebulized glutathione before. Do you still find it helpful? What does it do for you? I've used my nebulizer just a couple of times so far and am trying to decide what I think about it.

    I'm glad you decided to write.

    Best, Lisa
  4. Slayadragon

    Slayadragon New Member

    Hi Cheryl Sue and Forebearance,

    This is continued from another thread....it may have been Forebearance's. I can never find anything I've previously read on the board these days.

    This disease has sort of done a number on my weight. I think my most comfortable/natural size is around an 8-10. When I got sick, I was more like a 12 as a result of having been absorbed in my Ph.D. program (this is not uncommon).

    During the first couple of years I was sick, I gained a bit more weight, up to about size 14.

    Then, after regaining some health, I went back to work full-time. I stopped being able to eat _anything_. I wasn't hungry, and when i had food in front of me, I couldn't eat it. I think that I was weakening my system so much that it didn't have extra energy to digest food.

    Within less than a year, I went from a size 14 to a size 4. This was not healthy at all, but I got huge numbers of compliments. Our society is really warped in its weight standards.

    After I stopped working, I started being able to eat again. I gradually increased to a size 10.

    Since being on the Famvir, I increased to a size 12. This seems solely to due lack of exercise.

    (The most annoying thing about these weight changes is that few things in my closet ever fit. I bought a couple of pairs of khakis to get me through this time period.)

    Anyway, the TCM herbs really have helped with weight control though. My appetite never has been stable, from day-to-day. I either don't want to eat at all, or I'm ravenously hungry. The TCM seems to have evened it out, and also to make me want to eat healthier foods. (It's done the same thing for my husband, but the change has been much more dramatic since he started from a worse place.)

    I've lost a few pounds in the past couple of months since I started the TCM, and suspect that I won't have much problem getting back to a size 8 or so once I'm able to start moving about even as much as I did before I started the Famvir. I might get there with just the revised eating habits (and I'm not trying at _all_ to diet) eventually, even.

    I don't know why the TCM is able to regulate appetite (up or down) to normal, but it seems to have been quite effective for Paul and me. It will be interesting to see if it helps Cheryl Sue. (I'm certain it's not a result of speed or the like....even if I didn't trust Dr. Guo and his literature, I'd be able to feel it if that were the case.)

    Why people with CFS tend to gain weight, I don't know. I don't think it's just the lack of exercise. Dr. Guyer said he thought it could be an obesity virus (and that people often lose weight easily after their immune systems go back to normal). Rich van K's theory could have merit too.

    I'm splitting the Famvir up, 500 mg in the morning and 500 mg at night. The human growth hormone has been amazing in allowing me to tolerate it. I wonder if it would work for other people.

    Best, Lisa

    [This Message was Edited on 04/22/2007]
  5. Slayadragon

    Slayadragon New Member

    Hi Ashley,

    Taking four weeks to work up to 2,000 mg of Famvir does not sound like very long at all to me. There's no way I could have moved up that fast, and I don't think I was just being a wimp. I was lying in bed all day feeling like I was going to die at just 500 mg for quite a while. It's amazing how well you're doing now though!

    After having tried the Candidase, I am realizing why you are having such a big yeast die-off. You're going really fast with that too. Do you think you're getting any positive benefits yet? Have you been able to decrease the Diflucan?

    How is your liver doing?

    Your personality sounds pretty hard-driving in general, and (unlike me) you haven't been sick long enough to have been forced to slow down. Will your job require you to be that way once you go back to it?

    Despite the fact that I've done very little for a dozen years, I have to admit that at my core I'm as hard-driving as ever. Hopefully I will be able to keep it in check if/when I get well again. I am convinced that my CFS is genetic and that there always will be the possibility for me to slide down the rabbit hole again if I'm not careful, but that doesn't mean that I won't get sucked back up into the thick of things again after the memory becomes more distant. Maybe those of us who do get well (including "relapse patients" who are in remission) should consider forming a support group for this....

    Best, Lisa

  6. Slayadragon

    Slayadragon New Member

    Hi John,

    I do like Dr. Guyer. He's especially impressive in terms of the wide variety of approaches/treatments he uses and his ability to use them appropriately for different patients. That takes a lot of intelligence of a sort that's different than that of most MD's (or, certainly, most people).

    I do very poorly with needles. My veins are hard to stick, and often even if they are punctured correctly i faint even when i get a small amount of blood drawn.

    Anyway, the one time I had an iV at Dr. Guyer's office, the vein got clogged up almost immediately. (This could have been a fibrin problem as well as a vein one.) I was feeling sick already, but someone insisted on trying another vein. Then I passed out. After I came to, I was so ill that I had to lie on one of their recliners for three hours to recover. (I would have stayed longer, but they were going home and it seemed safe for me to drive the short distance to the hotel.)

    Anyway, nobody talked to me about IV therapy after that. I think it's just as well. Those AV's are expensive, and I'm not convinced they are the right sort of treatment for me anyway. If I had toxin issues, it might have been a different story.

    What was in the antiviral AV's? $1000 is an awfully lot of money.

    Dr. Guyer is expensive, but from what I've heard the FFC's tend to be much much more so and not (for many people) terribly helpful. I'm really glad I found him so early in my illness. The way the office is run is problematic, but of all possible issues that's the least on my list of priorities in choosing a doctor.

    You are the first person on the board that I think I've ever seen benefit from an amphetamine. I used to get this recommendation (by doctors) when I first got sick, but never gave it a try.

    How long have you been taking the Adderall?

    At one point I was taking antidepressants, and they did give me more energy. However (as I mentioned in another post above), during that time I think my health in general decreased.

    I also took Provigil once, and felt exactly like i did before I got sick. I had totally forgotten what it was like. I felt really good, got lots of stuff done, was really motivated, slept like a log. Then I crashed and couldn't get out of bed for three days. (It was a "feeling bad" crash too.) Still, I'm glad I had the experience, since it reminded me of what it was like to be well and persuaded me to try to make an effort to get there. Hopefully it will work.

    Anyway, I'm glad that you are doing well on the Adderall. It is something that I might consider for moments that I need energy, but hopefully I will get well enough after I'm done wiith all this that I won't need it.

    My health bio is pretty complete, by the way. Just click on my name, to the left of this post. Dr. Guyer is managing all these things at present, and I think I've tried most of the other things in his bag of tricks except for ones having to do with IV's and antibiotics. Feel free to ask questions if you like. I also posted an interview with him on the board a couple of weeks ago.....if you can't find it, let me know and I will do a search.

    My body seems overjoyed with every single bioidentical hormone I've given it. (Some of them---especially the adrenal ones---I don't need any more though. Apparently I've gotten better on some fronts anyway.) This disease would be really frustrating to treat because everyone is so different. Dr. Guyer is really unusual in being able to do it.

    Thanks much for sharing your experiences.

    Best, lisa

    [This Message was Edited on 04/22/2007]
  7. cherylsue

    cherylsue Member

    That's actually a good idea, Lisa. That is one of my biggest fears that when I do get better, I'll slide back again. I forget about CFS each remission, and had a tendency to overdo. There were warning signs along the way, though.

    Yes, I'm beginning to think TCM may be the way for me to go. Do you know how mentally difficult it was to give up my vitamins per Dr. Guo? But then I think, I was taking vitamins when I came down with my relapses. Maybe, eating a healthy diet is better.

    I have the opposite effect than most with weight loss and CFS. I creep up to size 14 when "well", and then get sick. I lose weight and go down to size 10 during the throes of CFS. Presently, I am being very careful to avoid sugar whenever I can. I lost my craving for it. If I do try it, I have to spit it out. It is just too sweet. However, I like fruit, and I get my sugar high from that.

    Yes, I'm having good feelings about traditional Chinese medicine. It took me awhile to absorb it, but I'm more confident about it. We'll see how far it takes me. Most of my symptoms are just sleepiness from the TCM pills. I take the Reishi tea and that seems to pull me out of it. I've been napping outside on my lounge chair. This feels so good.

    [This Message was Edited on 04/22/2007]
  8. KingNeptune11

    KingNeptune11 New Member

    Thanks for sharing Lisa, I learn more on this board than I do from any of my doctors.....LOL

    I agree with you on Dr Guyer, he is very educated and open minded when it comes to treatment.......I like that, so many doctors are "dogmatic" and try to treat all of us the same and you just cant do that.......We all respond differently to different therapies........Of all the 20 or so doctors I have seen, I think Dr. Guyer is by far the best.......He is just willing to try so many different things and he is such a good person, which comes across when you deal with him.......

    I was seeing him in 2002-2003, when I was at my worst, so I dont think I was "healthy" enough to deal with all the treatments, if that makes sense........I decided to overhaul my diet in 2005 and lost about 115lbs, doing the "raw diet" and juicing.......no exercise........I am not able to do much exercise, even now, except 15 minute walks and very mild yoga, in 20 minute intervals.......And I also meditate.......which really helps........

    As I stated before, I began using Adderall in the summer of 2006 and it has really helped me.......I take between 10-20mg per day, depending on how I feel and what I need to get done that day.......Stimulants like amphetamines and Provigil are very effective if you are healthy enough to take them and you still need to stay within certain limits, or you will crash......as you know.......Adderall and Dexedrine are Provigil times 5, in my opinion......but everyone responds differently to these drugs......

    There is alot of research on amphetamines and their use on brain damage, head injuries, ADD and other such "wiring" problems in the brain.......I honestly feel so much cognitive improvement on Adderall, sometimes I feel like my old self......for short periods of time......I can think much more clearly and can accomplish my everyday tasks......Even though they have given amphetamines a "black box warning", they are still some of the safest and most studied drugs in our health care system.......been around since the 1930's........I dont like the number of kids they are putting on these drugs, but I think most drugs are over-prescribed anyway, in my opinion.......I dont tolerate anti-depressants very well, so I only take small amounts if I am going through a relapse.......

    You may want to try some mild doses of amphetamines for energy and cognitive improvements, just try to stay within certain limits on your energy expenditure.......Its so easy to ride the "amphetamine high" and over-do it.....:) Personally, I believe most of us (CFS and FM) have damage to our brain stems, due to "biological warfare"......but I dont want to get into that unless you want to hear more, it upsets too many people on the board.......from my experience......My theory is that the amphetamines "upregulate" our CNS and allows better cognitive skills and overall energy.......but you have to operate within boundaries........Just like anything else, moderation is the key.......Patients who are real sick will probably not tolerate these drugs very well.......

    I have a good friend who does really well on Adderall for his post-concussion syndrome from the first Gulf War and they are now treating athletes with these too......It seems to help athletes who suffered many concussions from football.......Definitely interesting stuff.......

    As I said before, I am interested in going back to Dr Guyer, I want to try small doses of hGH and have him evaluate my thyroid and adrenals again, to see what my levels are now.....I have wanted to also supplement my diet with TCM and have been researching that too.....I will touch base with you on that also.......I am interested in the TCM doctor you are seeing in Chicago, I am only 3 hours south of you, so I may go see him ......It sounds like you and your husband are doing well with his treatments......

    And just to let you know, I agree with you on the "supplements" issue, I dont think you need to discontinue the supplements for the TCM herbs to work properly......I personally find most doctors think their treatment is the best, whether Chinese, American or Russian and everything else is subpar......Unfortunately, I think this is more of an ego/dogmatic thing than reality........just my 2 cents........I personally dont think you can "cure" most of us, you can only manage our condition to a point......But we all need to continue to try to improve, nonetheless.......Anyway, thanks again for sharing Lisa, I appreciate your knowledge........JOHN

    PS......Did you have to suggest hGH therapy with Dr Guyer or did he suggest this????? I am just curious how he feels about this treatment......It doesnt surprise me that he is open minded enough to try this.......We didnt discuss this back in 2002-2003, but I know he is constantly updating his methods, as should most doctors......
  9. ask2266

    ask2266 Member


    Thanks for the words of encouragement. It's funny. I notice that whenever I get one part of the illness under control, another part flares up.

    First, sleep was my biggest problem. Once I got sleep aids, then I had terrible muscle aches and soreness. Once I got that under control, then I just had this wired, yuck feeling all day long everyday (viral). Once I started Famvir and got the wired feeling to go away, now I have yeast itch city. It's like the disease just will come out of whatever pathway you leave open for it. Strange!

    I think that my yeast is getting better, as the gassiness has gone down, but thrush and yeast infections continue to be a problem. I am planning on taking the diflucan for 2 more months, during which time I hope to use every means available to wipe the stuff out. I may add cream of tartar and more oxygen elements plus. This is the new front in my war on this illness.

    I am taking a good liver supplement for support with milk thistle and a ton of other stuff in it. My liver bloodwork looks good so far, so I'm keeping my fingers crossed.

    Yes, my personality is very hard driven. I'm a trial lawyer, which is one of the most stressful and demanding jobs you can imagine. Of course, I loved it! But I will not go back to it. My body just can't handle this type of stress-- it's not worth the risk, and I have an almost 3 year old little boy to think about. I'm trying to start writing law review articles in an effort to get a teaching position in a law school. Something I can do on a less demanding schedule and at home.

    I think that we should definitely form a support group, because it's very similar to cancer patients. Once the cancer is gone, they live their lives in fear that the cancer is coming back-- any twitch or ache could be the cancer. With cfids, I think it's the same. I just pray to God that we all get some sort of semi-total remission.

    Best, Ashley

  10. Slayadragon

    Slayadragon New Member

    Hi Cheryl Sue,

    To my understanding, TCM is designed to help your body repair its own problems in order to heal itself. That's why it works without side effects (except the fatigue/sleepiness, which seems to me a sign that healing is going on).

    Strengthening the body so that it can heal itself doesn't happen overnight. I think of it sort of like starting to lift weights and work out with the help of a personal trainer. You hopefully will see some results pretty fast. But getting totally into great shape is a more long-term approach.

    in your case, being able to sleep a reasonable amount (which you probably will after you get past this super-sleepy initial phase), getting your blood pressure under control, and gaining some energy seem like reasonable short-term goals (within a month or two). Dr. Guo seems to think your liver is an issue, and since TCM seems really good at that, i think improving that is reasonable to hope for too. Hopefully that will help you feel better in general, as it has Paul.

    But it's hard to know just how progress you might make beyond that within a few months. Maybe you'll respond really quickly, maybe more slowly. The fact that your body is feeling really sleepy seems to me a good sign.

    I will keep my fingers crossed that you feel well enough by fall to go back to work, but I don't know it that's the case. I don't know if after going to all this effort, I'll get any better than I was at the beginning either. (But I at least have hope that that will happen, which is more than I had for the previous 10 years.)

    I can't remember what Dr. Guo said about the timetable for me (which may be really different than yours). I think it was that in a year I'd be pretty much all better in terms of symptoms, and that in two years I'd be at the point where my body would be totally healed and I wouldn't have the disease at all. I thought at the time that the idea that he could totally heal me so that I didn't have CFS at all was kind of ambitious, but I did think that TCM on its own would probably be of help regardless of what other treatments I was pursuing. How much it would help, I don't know.

    Paul's gotten a lot better.....it's really amazing to me. But he's not totally better. He's still limiting his activity. I'm not sure how much his liver enzymes have gone down (we have to recheck). But he's able to do a whole lot more than he was a month ago and feels better than he has in a decade.

    Considering that Western medicine finds serious liver disease almost impossible to treat, I'm really amazed. It seems to me like by fall he'll be functioning at a pretty normal level in terms of being able to carry a pretty full workload, but it's hard to know that for sure.

    I've been extremely sleepy (getting maybe 11-12 hours per night) myself recently. I'm not sure why. The TCM? The speck of folate supplement I've been taking? The possibility that fewer viruses in my brain are being killed and I'm no longer getting inflammation/agitation there, and thus am able to make up on sleep and focus on the task of getting better? Probably all of these. I think it's a good thing, although sleeping the whole day when it's nice outside does feel like kind of a waste.

    Anyway, you've just been using the TCM for a couple of days. When you go back to Dr. Guo in two or three weeks, perhaps he can tell you if you better if he thinks you're making progress.

    With regard to the weight....my experience is that people with CFS are very sick, their bodies reject food and they lose weight. When their illness is more moderate, for whatever reason (underlying mechanism, virus, lack of exercise) they gain weight. Hopefully I'll get to a point where my weight is steady all the time, so that my clothes fit if nothing else.....

    Best, Lisa

  11. Slayadragon

    Slayadragon New Member

    Of course, I don't know if TCM will do anything at all for you. It seems as reasonable as anything else we've been able to come up with, but that doesn't mean it's for sure going to work....
  12. cherylsue

    cherylsue Member

    I think sleep is a good thing for the both of us. Wow, you can sleep 11-12 hours. I probably sleep 7 hours more or less at night with an hour nap on most days. You know, I think I am sleeping better on the Chinese herbs. I seem more relaxed.

    I emailed by internist friend who also treats CFS (She's Chinese American) and was top in our college graduating class. I asked her about TCM, and she said it can be helpful. She also said that Chinese herbs were "amazing" in the prevention of cancer. Just thought I'd pass that along.

    Well, if my past experience with CFS is indicative, I have 4 more months before I may come out of this relapse. Whether TCM will help me get there sooner, I am helpful. Even if it doesn't, I am hoping it will prevent a major relapse. This is my fear along with others on this board. Yes, I believe we can obtain remission, but we want it for a long, long time. At least until the researchers can figure it out, and come up with a viable quick treatment.

  13. Slayadragon

    Slayadragon New Member

    Sunday-Monday, April 22-23
    Famvir--Day 168-69

    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 143-169: 1000 mg

    I am feeling extremely drowsy these days, and am sleeping about 12 hours per day. I am attributing this change to one or more of the following (probably all of them):

    * Viral-killing activity in my brain may have decreased, causing agitation (or maybe inflammation even though I don't know if it's ever inflamed) to die down. It's hard for me to judge how much cognitive progress I have made because I am so sleepy though. Emotionally I'm in quite good shape.

    * Continuing work on strengthening of my system due to human growth hormone and TCM herbs.

    * Candidase use. I took half a capsule last night, and am getting non-watery almost-diarrhea and sinus drainage. This is the upper limit of where I should be, I think. Extreme sinus infections have historically made me sleepy, and so killing yeast in that part of my body may be doing the same thing.

    * FolaPro use. I ground up one tablet and have been taking a tiny amount of the powder (as little as I can get to stick to my index finger) per day. I nonetheless feel it's making a difference! (My thirst level has been fairly high, and historically thirst has been very correlated with detox for me.)

    I keep telling others that I think sleepiness when we're trying to get better is a good thing, and I do think that's true. Nonetheless, I may skip the Candidase and FolaPro on some days if things go on this way. This much sleepiness is on the extreme side.

    Based on what I have been told by people in my "real life", I have been much calmer over the past month or so than before I started the Famvir. Upon reflection, I think that's true. (And I don't think it's just due just to being too tired to get upset about things and consciously eliminating stress from my life.....) If this is the case, it is the first really positive change that has happened compared to pre-Famvir.

    My doctor told me that emotional improvements are often dramatic as a result of antiviral use. I wasn't in _terrible_ shape on this front to begin with, but (as noted in my bio) much of this is related to drug and supplement use for mood regulation. It would be interesting to see what would happen if I decreased the use of those substances, but obviously I'm not ready to do so now.

    In any case, I am happy that something positive seems to be happening. It's possible that my energy and cognitive issues might be resolving "underneath" too, but are being drowned out by continuing die-off. Eventually I will find out.

    I am extremely heartened to hear that Debbie (dahopper) took Valtrex for seven months before starting Valcyte. She showed little progress on Valtrex, but within a month on Valcyte got to the point where she was feeling almost entirely well. After two months on Valcyte, she says she's "going all the time."

    Preceding Valcyte use with a milder antiviral is my doctor's approach, of course. The last I saw him, his plan was for me to start Valcyte after 7-8 months of Famvir.

    Debbie is an FFC patient, and I do not believe that her doctor intended to use this strategy from the start. Rather, it seems that they gave her the Valcyte sort of in desperation because she was not doing well. I think she's one of the first FFC patients to use it.

    It will be interesting to see if the FFC's now begin to use the Valtrex/Famvir-then-Valcyte on other patients. Debbie seems to agree that the Valtrex "prepared her body for the Valcyte," and so maybe she will be able to help them figure out what might have happened.

    Anyway, this is very heartening news for me. I trust that my doctor is relaying his experiences to me accurately, but having first-hand reports (especially from people I've observed being sick for a long time) help to keep up my confidence too.

    Unfortunately, my sleepiness has preventing me from answering posts (including at least one on my previous thread) promptly. I will get back to all of them soon. Thank you to everyone for writing!

    [This Message was Edited on 04/23/2007]
  14. ask2266

    ask2266 Member

    When I started the digestive enzymes for yeast (similar to Candidase), they really made me exhausted during the day. It was a totally new experience for me since my main cfids problems were usually the opposite-- being aggitated and wired.

    I think that the die-off of a virus or bacteria or mold amplifies whatever symptom that pathogen causes in your disease. When I had viral die-off, I got much more wired and agitated (which I didn't think was possible at the time)and finally that went away completely once the viral component of my illness was under control. Now that I'm having yeast die-off, I've gotten more tired and really itchy. It's just a theory, but it seems like it may be true.
  15. Slayadragon

    Slayadragon New Member

    Hi Forebearance,

    If you get a chance would you look at a thread called

    Homeopathics for Sleep

    started by connieaag?

    Connie is trying to use all-natural stuff for her daughter Kat, and she seems to be doing well except for the sleep. That's hardly a surprise.

    I decided to bring up the idea of supplementing with FolaPro, but I think I've now confused people.

    Perhaps if you were to add your thoughts, it might start to make more sense. (The idea that I would take one crushed pill for the MONTH does seem pretty silly.....)

    Feel free to disagree with my comments, of course. The matter-of-fact way in which you told your doctor that you were supplementing with folate and B12 (especially considering that you and I are having similar reactions to the same supplements) seems to make much easier sense than going into a discussion of all mcb issues, but I don't want to mislead people either.


    Best, Lisa
  16. foxglove9922

    foxglove9922 New Member

    Hi Lisa,

    Are you taking real human growth hormone? Do you take it in the AM or PM?

    I've been injecting at night, but wonder now if it would be more effective earlier in the day?

    Best wishes,

  17. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    This is a response to the last thread. Sorry it's taken so long for me to write back.

    Did I read elsewhere that you had an issue with amoebas at one point and that you think they might still be a problem? Maybe I'm dreaming it. In any case, I couldn't find it when I went back to look and thought I'd bring it up here.

    My only experience with amoebas was blastocystis hominis, which is a parasite that (at least a decade ago) the medical community seemed uncertain about how dangerous it was. There were really large numbers of them that came up on the Great Smokies stool test though (they sent me photos), and it was consistent several times. I took a couple of different standard antibiotics (Flagyl etc.) plus a bunch of some kind of dreadful anti-parasite wormwood concoction, to no avail.

    When I first started seeing Dr. Guyer maybe 18 months after I first got diagnosed with the b. hominis, he prescribed what he said was an older antibiotic (Yodoxin) that he was sure would a) get rid of the parasite in ten days and b) not cause my yeast to get worse. (This was a long time before it was mentioned in the Teitelbaum book.) I expressed suspicion, and he said he'd tried it on eight patients with a 100% success rate. It worked just as promised, and after quite a few more stool tests I've never had it come back.

    Probably this is a less dangerous amoeba (I think I might have gotten it in Taiwan....you aren't supposed to drink the water there without boiling, or at least that was the case a decade ago) than the one you have. (If I'm not dreaming and you have/had one.) But I wonder if there might not be a "magic" drug that might kill it too, if you could figure it out.

    Did you get this one before or after CFS? I apparently got the b. hominis before (it showed up on a test I had done at my first CFS-type doctor about four weeks after I got the drop-dead flu), and am wondering about the possibility that having this one contributed to my collapse. It didn't make me all better when I got rid of it, but it's possible it could prevent me from getting better if I had it now.

    It has occurred to me recently that some of the worst diseases in the world are caused by parasites, and they thus scare me a lot more than they used to. I'm really glad Dr. Guyer got rid of that one.

    My book "Optimal Wellness" by Ralph Golan MD also says that parasites can inflame the intestines and allow the yeast to penetrate more deeply into them.

    I still am wondering if the cream of tartar works _merely_ by altering the Ph balance of the whole body (and especially the intestines). That actually might do it, I think.

    Note that my own Ph level seems to be in range without the CoT, and it took a whole lot of cream of tartar (at least a tablespoon per day) before I started getting an effect.

    It's quite possible that my suspicions are unfounded and that cream of tartar works in some other way. Unfortunately, there doesn't seem to be any info on the Internet about it except that one short anecdotal comment by Dr. Wong. And while I would say, well, altering the Ph balance for a month isn't that big of a deal, I have no reason to believe (if this is the mechanism) that the yeast wouldn't come back as soon as the month is over.

    I will be interested in finding out how quickly the yeast do indeed come back for those who kill it successfully with cream of tartar. And testing Ph with and without cream of tartar also would be interesting.

    As you noted, a more acidic bowel reduces yeast. Consistent with this idea, this is from the "Optimal Wellness" book:

    "Medicines given to ulcer patients--acid antagonists such as Tagamet, Zantac and Prilosec--decrease acidity to levels low enough for yeast to grow."

    I don't know if it's possible to keep the bowel acidic without affecting the acid balance of the whole body though. This Ph stuff is very confusing....

    Testing Ph with litmus paper also seems a little tricky. For instance, here's an article about it. See page 46:


    (NOTE: This is a NON-COMMERCIAL site and is for informational purposes only.)

    I thus am going to have to do another trial with my husband and see how the results look.

    What is VSL#3?

    Did I ask you before what calcium d'glucurate is? I feel pretty sure I asked someone but do not recall getting a response.

    The story about people knowing the aspartame was bad and the stevia was okay (when they were in envelopes) is interesting. Kinesiology etc. certainly would be great if it actually worked. If I ever encounter someone who's supposed to be good, I will try it and see how predictive it is of some substances that I already know something about.

    Best, Lisa

    [This Message was Edited on 04/24/2007]
  18. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    That's a pleasant coincidence that your QXCI practitioner is in Telluride much of the time. (There seems to be a big overlap in people who spend time in Taos/Santa Fe and Tellluride, for whatever reason.) Please do give me the information--actually, now if you can. Hopefully Paul and I will be well enough to spend some time there this summer. Our goal is to have it be a month every year, although last year we went to Japan instead and thus didn't get there at all.

    The Golan book and the Teitelbaum book have good sections on parasites. I recommend the Golan book in general--it has really good info on most of the topics discussed on this board.

    As you say, the books state that parasites are hard to detect. The Golan book mentions the following pharmaceuticals:

    "Metronidzaole, furazolidone, diiodohydroxycin and quinacrine are frequently prescribed. One of the more effective agents with the fewest side effects is tinidazole, available through several compounding pharmacies. One very effective treatment recommended for Giardia in adults is 2000 mg of tinidazole taken with a meal, repeated a second time in two weeks, and a third time two weeks after the second dose."

    The book also discusses herbal remedies. Another comment that I find interesting is that especially if parasites do not go away, other members of the household should be tested for them, since it is possible that they will be repeatedly passed back and forth if everyone isn't clear of them.

    Do you have the Teitelbaum book? There are about three pages on parasites in it, with different mixes of antibiotics recommended for different parasites (although none for the amoebas you got). That book is widely available, and so it might be worth a trip to the bookstore to look at it. (The Golan book would have to be ordered on Amazon etc., I would think.)

    Teitelbaum recommends preceding the Yodoxin with a bunch of Humatin or Bactrim DS for b. hominis, but I just used the Yodoxin.

    The book mentions a guy named Leo Galland M.D., described as a "parasite expert." Upon reflection, I think if I had troublesome parasites, I'd be inclined to see a parasite expert if I could find one. I'm not sure how many doctors there are who specialize in this, though.

    Best, Lisa
  19. Forebearance

    Forebearance Member

    Hi, Lisa!

    Oh, I am so glad you are sleeping that much. I think it's a good thing, too. It's got to be healing. But yeah, it does interfere with one's routine. It makes it impossible to sort of pretend to be well.

    I thought that Dr. Cheney made a very good case in his DVD lecture that people with CFS barely metabolize at all. That would explain why we gain weight, wouldn't it? Assuming that nothing is going wrong with a person's digestive system, of course.

    Okay, I'll check out Connie's thread. I continue to insist that taking small doses of things is NOT weird and not silly. We need what we need. It's just common sense to give our bodies whatever they need.

    Hey, you're taking the same dose of FolaPro as I am! Should we call it "one finger of powder"?

    How is your back pain doing? Mine has been better since I've been drinking more water with my nighttime pills.

    Oh Ashley, you made me laugh saying you are tired and itchy. :) I hope you feel better when you come through all of this.

    Yeah, Kelly, I saw in the health food store that there are 2 or 3 other enzyme products that are similar to Candidase, and I think they're equally effective. They seem to contain other stuff, like probiotics, so I got the Candidase to have a "pure" experiment. (And probiotics seem to disagree with me.)

    Wow, you saw Jesse Stoff. I think he was a co-author of the first CFS book I ever bought. But it was called chronic EBV back then! His recommendation to take calcium and magnesium helped me a lot.

    [This Message was Edited on 04/24/2007]
  20. ask2266

    ask2266 Member

    As I said earlier, I'm quite itchy these days. I hypothesized earlier in this thread that it could be die-off, since it seems like symptoms get worse. Later, I was thinking that this is probably wishful thinking on my part, to help me endure the scratch. (I had chronic hives for months two years ago-- I hate itching!)

    BUT THEN, I read on a box of Monistat (yeast infection medication, otc) that "during treatment with this product you may experience an increase of symptoms, including vaginal itching, burning and irritation." So it seems that treating the yeast makes it temporarily worse, even in people with normal immune systems! YEA for vaginal itching!

    I know this definitely qualifies as a "too much information" post. sorry.....

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