Famvir Status Report Week Twenty

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Mar 31, 2007.

  1. Slayadragon

    Slayadragon New Member

    Friday, March 30
    Famvir--Day 144

    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 143-44: 1000 mg

    Still doing fine with the increased dose of Famvir. I think the HGH has been key with regard to that.

    I used the nebulized glutathione for a while in the morning, thinking that I might feel sleepy and get a bit of a nap afterwards. (At least, I think I got it set up properly so that I was using it. I'm thinking that I should call the pharmacy sometime soon just to make sure.)

    I don't feel like I got much of an effect except maybe a very slight headache. However, others on the board previously mentioned that they didn't feel like there was an effect until after they had used the nebulized glutathione several times. I will pursue it further, therefore.

    For my own notes, I used a total of 5 g of ribose, 500 mg of acetyl-l-carnitine and 200 mcg of molybdenum. No noticeable effect, though anything positive could be being trumped by the increased dosage of Famvir.

    [This Message was Edited on 04/06/2007]
  2. Slayadragon

    Slayadragon New Member

    Saturday, March 31
    Famvir--Day 145

    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 143-45: 1000 mg

    Still doing fine, although I'm keeping my life subdued.

    I slept for a long time (10 hours) with lots of dreams last night. I woke up with a bit of a headache. After an afternoon nap of a couple of hours, the headache was gone and I felt fine.

    Of the recently altered supplements, I took 5 g of ribose and 200 mcg of molybdenum. I skipped the acetyl-l-carnitine for the time being, and will go back to it in the near future.

    My husband continues to do spectacularly on the Traditional Chinese Medicine herbs. His anxiety and sugar cravings (consistent problems since I met him 20 years ago) are almost completely gone. He cooked me dinner for the first time ever. It seems like after a couple more of my "cooking class" lessons, he will be really good at it on his own.

    I could not be more pleased.

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

    Slayadragon New Member

    Sunday, April 1
    Famvir--Day 146

    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 143-46: 1000 mg

    I keep thinking about how subdued I am feeling and wondering why that is the case.

    Then I recall that I am taking 1000 mg of Famvir, which in the past would have been intolerable.

    I am getting no symptoms of immune system activation, die-off or anything else previously associated with the Famvir. I merely am feeling quiet and sleeping a good deal.

    The human growth hormone seems to be responsible for this. The newly revised TCM herbs also could be contributing.

    I tend to think the Famvir is still working though. The fact that I started to have symptoms characteristic of that early last week and that they immediately went away when I started the HGH and changed herbs seems suggestive of that.

    I have been pondering theory about the methylation block/glutathione issue (added to the current thread on the topic) and am thinking that I will try adding the supplements again at some point in the near future.

    Making sure that I'm "settled in" with the higher dose of Famvir first seems to me a wise thing to do, however.

    I took 10 g of ribose and a good bit of molybdenum. The ribose is not creating loads of energy, but I wouldn't expect it to at this point in my AV treatment. We shall see.

    I plan to add the acetyl-l-carnitine back into the mix, but think I will wait a bit longer on it too.

    I now am thinking that the fact that the nebulized glutathione gave me a slight headache means that my body is not ready to use it. I will try again at some point after I start the methylation cycle supplements, I think.

    All in good time.

    The thing that is bothering me most right now is the recollection that my cognitive problems started after my head injury and before my CFS. That makes me think that getting rid of the CFS might not help the cognitive problems---disturbing since the cognitive problems are far higher on my list than anything else that I might fix.

    Again though, all in good time. Perhaps I'll come up with some other way to fix the cognitive stuff, if it doesn't go away on its own as (hopefully) the CFS heals.

    Worrying is bad for me in terms of the stress component, and so avoiding doing it is best.

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

    Slayadragon New Member

    Monday, April 2
    Famvir--Day 147

    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 143-47: 1000 mg

    I'm continuing to feel sleepy and subdued, but otherwise am tolerating the increased dose of the medicine well. This continues to be a surprise. I wish I'd used the HGH from the start, but better late than never.

    I started to feel slightly irritable for a short while today. I am not sure if it was because I was in need of natural progesterone for PMS (it's about that time) or because I skipped the HGH yesterday (in theory it's better not to take it every day).

    In any case, a short time after I took some Prometrium (natural progesterone) and today's dose of HGH (.1 mg), the irritability faded.

    I would like to restart the methyl unblocking supplements again at some point soon, once I'm sure I'm okay with the increased Famvir. After contemplating the theory as well as observing others' results, I think it is worthwhile to at least try.

    I would like to get my digestive tract in really good shape first though. The last time I took the supplements, I immediately got constipation that was relieved only through a colonic (colon hydrotherapy). This was despite the fact that I was doing pretty well on that front prior to starting the supplements. I think it was due to a large amount of toxins being dumped from my liver into my intestines. (It is odd that I've not heard of this constipation reaction from other people, since it was quite marked for me.)

    My digestive tract is still not back where it used to be, even though it's been maybe three weeks since I suspended the supplements. I thus would like to work on improving it before restarting the supplements.

    One thing I decided to try was cream of tartar. I took a teaspoon yesterday, which gave me no effect othan than a slight headache. (I have been taking molybdenum, which could be keeping stronger headaches at bay.)

    Today I tried a tablespoon (so far). In theory the cream of tartar should work on my refractory recurring sinus and vaginal yeast problems as well as whatever yeast is left in my intestines. I feel like the intestinal yeast is pretty much under control, due to megadoses of probiotics and Vitamin C as well as my no-sugar diet. However, keeping yeast at bay has been a constant battle for me over the years, and so probably there's enough there that it's worth attacking (especially if I'm going to go after the vaginal and sinus yeast anyway).

    I'm also going to use colonics (I've done well with them). A board member recently mentioned that she had been refused for a colonic because she was on heparin, but I do not think that the natto is making my blood all that thin compared to normal people's. In any case, I had no problem with the colonic I had a couple of weeks ago.

    I also may use an oral colon cleanse formula (with psyllium and herbs) that I have on hand. I used it for a short time the last time I got my colon in order, and I think it may have helped a bit.

    Increasing the functionality of the colon is consistent with Rich van Koynenburg's list of things that can make the methylation cycle block protocol more effective (listed in the "non-simplified" portion). Thinking about that made me take another look to see if there was anything else I could address.

    It seems to me that the HGH, Chinese herbs and melatonin are helping with the overexcitation of the nervous system. I also am continuing to take a small amount of Klonopin to help with this. (The pros seem to outweigh the cons of the drug toxicity in my mind, especially considering that Klonopin is not a terribly toxic drug to my knowledge.) Lamictal (an absolutely essential drug used to stabilize my moods) also seems to help a little with the overexcitation problem due to its anticonvulsant properties.

    The Chinese herbs, large amounts of probiotics and Vitamin C, and better diet may be improving my nutritional status. (This was one of the TCM doctor's initial goals.)

    I am certain that the HGH and Chinese herbs are doing significant organ repair, although probably the AV is still taking a bit of a toll.

    I don't know what to do about bacterial infections. I have tested positive for chlamydia pneumoniae and mycoplasms in the past, and so they're probably still a stealth problem. Restarting the oregano oil (which also should help with intestinal yeast) could be a good first step anyway.

    In theory,with reduced viral counts from the AV and (I think) reasonably low toxin problems, increased glutathione should help with the bacteria fairly quickly. Obviously I do have somewhat of a toxicity problem since I suffer from CFS and had detox reactions when I was on the supplements before, but other than that all indications suggest that toxins are not a huge problem for me. Hopefully this will allow at least some glutathione to be funneled to the task of bacteria killing, once the supplements start to work.

    The fact that I have reduced stress to the extent possible (both through the use of Teitelbaum-type treatments as well as mental/emotional stressors) should allow usable glutathione to be directed to bacterial problems as well.

    I know it would be better to get one or more of the tests that Yasko recommends, but I'm not sure how to go about having them ordered. Perhaps eventually I will figure out how to do so.

    In general, I feel okay about taking the folate supplements, the phospholipids and the B12 recommended in the methyl unblocking protoco,l once my system seems ready for them.

    The methyl donors (SAMe and TMG) make me slightly nervous, though. This is partially due to the serotonin syndrome experience that I had with the SAMe, although of course I will be careful to avoid further such interactions.

    In addition, the supplementation of these particular methyl donors can be associated with "improved" mood (to the point of hypomania) even in those people who previously had not demonstrated significant mood disorders. After having worked hard to fix my problems with manic-depression back in the 1990's, I personally want to be very careful not to have to deal with that garbage ever again.

    My moods have been quite stable (with the exception of certain moments when on the Famvir) due to my success with Lamictal since about the turn of the millenium, but I still want to proceed cautiously. Once cycling starts, it can be hard to put the pieces back into place again.

    I didn't have hypomania problems for the three weeks or so that I was taking the SAMe and other methylation cycle supplements last month, but that doesn't mean that such problems couldn't occur in the future despite my continued use of Lamictal.

    I therefore want to find out how important the methyl donors are to the program. Hopefully taking small amounts of them (some people using this approach seem to be taking a goodly amount of methyl donors!) will be enough to serve the purpose while preventing problems, though.

    With regard to all of these and other issues---f anyone has suggestions with regard to how I might optimally pursue the methylation unblocking program, please let me know!!!

    I've continued to take the ribose (10 g per day) with no apparent effects one way or the other.

    My husband continues to do wonderfully with the Chinese medicine. Fortunately, his problems seem to be totally centered around the liver, which Chinese medicine is extremely good at fixing. At least one of us is making dramatic progress, which is a reassuring thing.

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

    Forebearance Member

    Hi, Lisa!

    Thanks for the reports!

    That's really great that you're tolerating the Famvir so well this time around!

    I admit that in the past week I have taken a bit of HGH secretagogue, as a boost. And now I think I'm having a headache from it.

    Your poor old digestive tract! But I'm so glad the TCM herbs are still helping you.

    I'm very happy for you about your brand new husband!

    I was wondering about your good old larch bark. Does it help your colon move along? I seem to remember that it soaks up toxins.

    I think someone said you can order the Yasko tests on her website, without a prescription, because she will authorize as the prescribing doctor. I'm hesitant to get them, myself, because when I tell my doctor about them I'm afraid she'll really think I'm crazy. I have to maintain my credibility with her to some extent.

    I guess I'll feel her out on it the next time I see her.

    I'm glad you're going to be cautious about the SAMe and TMG. It seems like your Lamictal might cause you to have different reactions to things that affect the brain.

    Love,
    Forebearance
  6. Slayadragon

    Slayadragon New Member

    Prior to prescribing the HGH a couple of years ago, my doctor had me try a secretagogue. It gave me _horrible_ headaches (the worst I've ever had other than with the SAMe/doxepin reaction). I don't know what it is about that stuff.

    Ironically, the secretagogue cost me $100 for the box, whereas a three-months' (actually six months' at the dose I take) supply of the HGH cost me $5 in copays. I tried to give the secretagogue away but unfortunately did not find the right person. I do hate waste.

    I temporarily forgot about the larch bark. It didn't help my digestive issues at all when I was on the methyl block stuff, but it most certainly decreased the detox symptoms. Thanks for reminding me. I should mention it to other people with regard to the symptoms they're experiencing.

    My colon is a lot better than it was, approaching some reasonable facsimile of normality. I'd just like to keep it that way. (Of course, my colon hydrotherapist says that almost no one in America has a colon that is in anywhere near optimal shape. I tend to believe that.)

    Considering that my CFS doctor has yet to buy into the methyl block stuff much at all, I would not imagine that any regular internist would do so. And the credibility thing is a big factor, especially for those of us who want to continue to have input into our own treatments. We need to ask Rich for alternative ways to get the tests, when he returns to the board.

    In any event, I don't want to pay for any of those tests unless it seems like it's truly worthwhile. There certainly are an awfully lot of them. And a person could buy a lot of HGH or Nexavir for the same amount as just one of them.....

    Actually, if I weren't taking Lamictal, I'd run for my life from the SAMe and TMG. At one point (years and years ago) when my moods were only semi-stabilized, I tried SAMe. It was worse than any of the antidepressants I'd tried in terms of destabilizing my mood, which is saying a lot. So I have reason to be cautious.

    I just wonder how well the protocol would work without it. Are you getting any detox symptoms, increased energy, or anything else other than improved sleep yet?

    Best, Lisa

  7. Forebearance

    Forebearance Member

    Hi, Lisa!

    Well, last night I seemed to be having a detox reaction, so I'm not sure if it was caused by the HGH secretagogue or the slightly larger dose of methyl supps I took the day before.

    I was lucky to have a health food store owner who knows me, and she sold me one envelope of the HGH secretagogue! That's a lifetime supply for me. I hate wasting things, too.

    Yeah, I'm not going to be taking SAMe ever again, personally. It makes me feel weird. The protocol will just have to work without it for me. lol

    I am committed to telling my doc everything I do, no matter how weird, but what I could do is have some Yasko tests run, and then show them to her later after I've obviously improved, and she'd probably be more appreciative of them. But right now the cost is holding me back. I just used up a bunch of $ on Nexavir.

    The main thing I'm getting from the short Yasko protocol besides improved sleep quality is that it's making me thinner. I feel like I'm metabolizing better.

    Love,
    Forebearance
  8. bibbbyk

    bibbbyk New Member

    Are you sure you don't mean 5 GRAMS of ribose? 5 mg is a minsiscule dose.
  9. cherylsue

    cherylsue Member

    I'm getting a big kick out of your description of your husband's behavior with the Chinese herbs. I wonder if my husband should go on those... I need something for anxiety. When I get stronger, I think I would like to visit this Chinese doc. I know you posted his name and address on an earlier post. Would you mind sharing again?
    Thanks.

    I like the fact that you are tolerating higher doses of Famvir. Did you ever think you would get this far? I wish you continued success with this.

    Best wishes,

    CherylSue



  10. ask2266

    ask2266 Member

    I haven't been on the boards much lately because I am negotiating the purchase of a new house for my family. It's been chaotic. And I haven't seen this post when I've looked, so there you are.

    I'm on Week 9 (12) of Famvir, 1000 mg 2x per day. I only have Epstein Barr, and the Famvir has really kicked its a%$.

    I felt great at Week 6 of Famvir, after suffering worsening of symptoms for several weeks. The main problems with virus die-off were I felt really wired and fried mentally, like I was on lots of drugs--disembodied.

    When I finally got better, I felt great!! Then I started going after my yeast with Three-Lac and digestive enzymes. I felt like crap again-- this time I had terrible bloating and gas, and I felt very tired and yucky.

    I've been on Three-Lac and digestive enzymes for almost 3 weeks now, and today I noticed for the first day that I felt okay all day. I've heard that you can yo-yo with yeast die-off, so I hesitate to say that I've busted through die-off, like I think I did on Famvir.

    I haven't taken heparin for a week, so I am going for a colonic tomorrow. Then, I'll restart the heparin.

    I'm feeling optimistic today. But we'll see......
  11. Slayadragon

    Slayadragon New Member

    Hi Forebearance,

    Sleeping better and getting thinner are good things in themselves!

    I was relieved to see Trina's response to my questions yesterday on the general methylation cycle protocol threads (the end of #3 and the beginning of #4).

    What made me really pleased was that she volunteered that since I'd had problems with SAMe (both in terms of throwing me off balance before I had my moods stabilized and in terms of the doxepin/SAMe reaction), it might be better if I skipped it totally.

    Even though I seem to have been able to take it except for those two reactions, her impression seems to be that I had enough of it (or that perhaps I had a genetic problem that kept me from being able to tolerate it).

    Skipping that supplement (at least until i'm well established on the others) makes me much more positive about going back on the folate ones. Those are potent enough for me on their own, I think.

    Trina says that (other than the small amount in Amy Yasko's multivitamins), TMG has never been recommended for people on the methylation cycle block protocol. The fact that a number of people here are taking them is interesting but not necessarily relevant, it seems.

    She also talks about the main factor that can keep people from succeeding on the protocol, the CBS polymorphism. (I think that's what it's called.) My ability to tolerate whey protein etc. makes it seem less likely that I have that problem, but I may still get the test done at some point after I am "settled in" with the supplements.

    The main one that suggests that they're being counterproductive is something like $275, which I could afford even if I don't get up the courage to ask my doctor to order it. He's generally very open-minded, but I think the idea that this is being promoted as the "cure-all" for CFS has made him somewhat suspicious of it for the time being. That may soon change, if people have good results. (And the fact that mcondon has concluded that it's not terribly different than the approach that Dr. Cheney is pursuing makes me much more comfortable with it.)

    I'm thinking that I may restart the supplements sometime next week if things continue to go okay. It will be really helpful if you continue to report your own experiences with them.

    Best, Lisa


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

    Slayadragon New Member

    Thanks for the correction. I would have continued to write 5 mg of ribose for all eternity if you hadn't pointed out how silly it was sounding. I will go back and fix that.

    Best, Lisa

  13. Slayadragon

    Slayadragon New Member

    Hi Cheryl Sue,

    The Chinese doctor is:

    Zhengang Guo
    Ton Shen Health
    2131 S. Archer Ave., Unit B
    Chicago, IL 60616
    312-842-2775

    There's also a Westmont office. I don't whether or not that would be more convenient for you, but the address is:

    665 Pasquinelli, Unit 203
    Westmont, IL 60559
    630-789-2350

    As I talk to more people in Chicago about this, I am surprised at the number who know this doctor. Just yesterday my husband was talking to a pretty high-level Chicago executive, who said that Dr. Guo was absolutely the person to see in Chicago (and one of the top people in the country).

    This individual's wife died of cancer, and so my guess is that they looked into the matter pretty carefully at some point. Dr. Guo has written a number of papers with what seems to be good methodologies on the use of Chinese medicine in cancer and AIDS. (Unfortunately, I would imagine a lot of people don't see him until their problems are very advanced.....TCM works much better at early stages.)

    His practice seems largely geared toward Westerners, which is a bit unusual for Chinese doctors with that much experience. I am very impressed by him.

    I am sure that the reason that my husband has done so well with him is because his problems are almost solely caused by his liver. He has had them for more than a decade, and they've ranged from only somewhat limiting to quite debilitating. And of course, Western medicine can do nothing whatsoever with regard to them. (Improving diet has helped some, and western herbs such as milk thistle and dandelion seemed to make little difference.)

    However, I have learned recently that of all health problems, Chinese medicine is perhaps best with regard to liver problems. (These are quite common in Chinese countries, and so they have lots of experience working on them.) The Chinese doctor said that all of my husband's problems were related to that, and seemed to think this was sort of a no-brainer (which likely it is compared to more difficult patients with stuff like cancer and CFS).

    So that's i think that my husband has been doing _so_ well in the 10 days or so since our first visit. He still has a very long way to go in terms of feeling truly well, but for the first time I have the hope that it will happen. I still worry about both him as well as myself, but we both do seem like we at least have potential to get a lot better (or maybe even more well than we've been in a very long time).

    I don't know how good Dr. Guo is with other problems. "Anxiety" is a symptom that could be related to a variety of underlying problems, some of which TCM may be more suited to address than others.

    As I've said before, I don't think it's something that would fix CFS, for instance. But in terms of building up internal organ strength (important both with regard to AV's and the methyl cycle block stuff), I think it's very useful. It certainly feels like that to me, anyway.

    I don't know what to think about the AV. At least I am now tolerating the higher dose, which is a real step in the right direction. It must be doing _something_, just not necessarily really fast. My doctor made it clear to me at our last meeting that it takes people a long time to recover from CFS using his approach (using my friend's mom, now totally well, as an example of that).

    But the supposedly "faster" methods of Valcyte and the methylation cycle block stuff seem likely to take a long time too, in order to get to total wellness. I think this board encourages impatience (at least on my part)---when other people seem to be feeling better, it makes me think I should be doing better myself. I think I'd be more tolerant of a slower approach if I were totally on my own. But I also would miss out on some useful information, and there are an awfully lot of nice people on the board. So I just have to remind myself to hang in there.....which, as you are well aware, is rather challenging?

    How are you doing? Are you making any additional progress with the Nexavir? How active are you able to be at this point?

    Hopefully we all will start to see some obvious progress soon. we deserve it, I think.

    Best, Lisa
  14. Slayadragon

    Slayadragon New Member

    I'm waiting with fingers crossed to hear about the results of your colonic. Hopefully it will be as helpful for you as it was for me.

    If your yeast die-off is increasing a little, then hopefully you're getting over the hump in terms of getting rid of a lot of that stuff. Thus, perhaps just this one colonic will be needed to get the stuff that you've killed out (it can bury itself in the crevices!) and you'll be able to dispose of the smaller amounts that you continue to kill on your own.

    You continue to be an inspiration to me with regard to the Famvir. Perhaps the reason that I'm going so much slower is that I have a lot of viruses in addition to the EBV, many of which the Famvir is not addressing. That's okay though. If I can decrease significantly any of the many viruses that I have, then the Valcyte (if I do end up taking it) should be able to cut through the rest of them more quickly and less painfully.

    In any case, you've gotten such good results that I feel like the drug must have been doing something all this time.

    I'm happy to hear about the house. Moving is one of the most stressful events one can have in one's life, but hopefully it will be worth it once you're settled in.

    Best, Lisa
  15. Slayadragon

    Slayadragon New Member

    Tuesday/Wednesday, April 3-4
    Famvir--Day 148-49

    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 143-49: 1000 mg

    I still seem to be tolerating the increased Famvir well, with ongoing sleepiness/quietness but no other noticeable symptoms. Hopefully I'm making progress on the viral-killing front.

    Yesterday I encountered some personal emotional stress, which is something I'm trying to avoid. Hopefully it will turn out okay. I did experience a bit of depression as a result, although I think it was exacerbated significantly as a result of my yeast-killing activities with cream of tartar.

    For the past few days I've been using cream of tartar to see if it would be useful to address any residual yeast problems. Especially after gaining the impression that it addresses yeast problems throughout the body rather than just staying within the intestinal tract, it was of great interest to me. (My colon seems to me to have remained in good shape, but I've continued to have both vaginal and sinus yeast issues.)

    I tried a small amount (a teaspoon or so) the first day, with no noticeable effect. Then I moved up to a couple of tablespoons.

    This resulted in somewhat increased colon activity, which is what I expected. I suffer from CFS and thus wouldn't expect to have _no_ intestinal yeast, but my conscientious efforts to keep it at bay seem to have paid off.

    In addition, I've gotten some generally toxic feelings (slight headache, increased thirst), which makes me feel like I'm killing yeast throughout my body. Yeast apparently has the potential to migrate all over the place, and so systemic symptoms are to be expected. I've been taking good amounts of molybdenum, which might be controlling these symptoms somewhat.

    This has included very slight lower back pain, by the way. I'm of the impression that (especially with the Chinese medicine) my kidneys are in pretty good shape in general, but this treatment may be having an effect on them.

    The most dramatic symptom was a major sinus headache (extending all the way down to my jaw area). I am taking this as a good sign, since sinus yeast has been by far the scariest and potentially most debilitating symptoms of my entire illness. (At one point it apparently pushed against or maybe even grew into my inner ear, causing me such severe vertigo that I was unable to do anything but lie very still in bed clutching a pillow.)

    I tried doing a couple of saline rinses. Even though I know these don't hit the entire huge sinus area, they've helped a good bit. That makes me feel more confident that this is indeed a symptom of yeast being killed there rather than something weird.

    I have to admit I had my doubts about this remedy when Cheryl Sue discovered it several months ago, but I am starting to become a firm believer. Even if it just helps with the sinus yeast, that will be a huge benefit in itself.

    I think I will slow down the dosage a bit though, since this response is a little intense. (2-3 tablespoons per day is a lot.) This stuff seems to work very fast regardless, and I'm not in that much of a hurry.

    If things continue to go well, I am going to cautiously reintroduce the methylation cycle block supplements next week. I've put some more thought into them (which I posted on the 3rd general thread about them) and have become convinced that they might be a really helpful addition to the Famvir/Valcyte treatment.....provided that I use them slowly enough that they do not stress my system too much. I am aware that the conventional wisdom of those who have pioneered them is that it is better not to use any drugs when on them, but my own conclusion (thus far) is that the combination may be appropriate for those patients whose viral load is especially high. It seems worth trying, anyway.

    I'm relieved to hear that not only is the SAMe not necessary for the protocol, but that my reactions to it (bad interaction with doxepin, hypomania back when my moods were not fully stabilized with Lamictal) may suggest that it might be a bad thing for me. The folate supplements seem okay as long as I stick with small doses, and the B12 and phospholipids are fine. As always, doing what intuitively seems right for my body seems like the right path.

    I've continued to take the ribose (5-10 grams, not milligrams, per day) and will continue to do so unless I mention here that I've stopped. It seems innocuous. I don't know that it's helping, but it's possible that it's giving me a little more energy to tolerate the Famvir and HGH. There's no reason to stop it at this point, anyway.

    Best, Lisa

  16. cherylsue

    cherylsue Member

    I appreciate both addresses. I may see him sooner than later.

    I reordered the Nexavir yesterday. One more month, and them I am going to stop. I was hoping for a faster recovery, but things are slow. Some better days, some worse. Today, I did some light grocery shopping, washed dishes, went for a blood test, checked out some DVD's, magazines, and THE MARCH by Doctorow. I went down for a nap because I was tired. My eldest daughter is home sick today with a virus that she's been fighting since the weekend.

    Anyway, I read recently on this board that ABX can react negatively with the Herpes viruses and Levaquin/Ceclor are notorious offenders. I reacted badly to Levaquin in the hospital in 2000, and I think this may have contribued to my CFS development. During my CFS second bout I was given Ceclor for an UTI during my recovery at 6 months, and I promptly relapsed to day 1. I had many of the symptoms of a drug reaction.

    Anyway, I read recently that these viruses can have a hit and run effect. My viral load perhaps may be down, but the brain may still be inflamed from the initial infection. Dr. Papernik had mentioned that my earlier burning sensations may have been an active virus or the residual effect of having the virus.

    Therefore, Nexavir may be more of a preventative measure than an actual killing spree. As I mentioned, the ProBoost seemed to go as far as it wants, too. I've started the elderberry again because my daughter has been sick.

    I am getting so sick of studying this disease. No matter what I try, nothing seems to get me where I want to be. I guess it takes patience. I appreciate your support and details of your experiences.

    I noticed recently that I feel worse after taking the supplements that are supposed to help. I'm getting lax in taking them. I think I may stick to only those that I know that help. I don't know where to turn anymore.

    Thanks again for the info.

    Hugs,
    CherylSue
  17. cherylsue

    cherylsue Member

    Lisa, I just made an appointment with Dr. Guo! I'm excited. I'm sure it won't hurt.

    I guess he checks your face, hands, and nails, and can tell what you need to feel better.

    Are you seeing success with the Cream of Tartar protocol that Dr. William Wong suggests? It's based on another doctor's protocol, I can't remember whom. I hope you and Kelly are doing well on that score.

    CherylSue
  18. cherylsue

    cherylsue Member

    Wow, that's great progress. I take it from time to time, but I think my husband (gut problems) may benefit from this. I will encourage him to try this. I'm happy for you.

    CherylSue
  19. Slayadragon

    Slayadragon New Member

    Hi Cheryl Sue,

    When and where are you going to see Dr. Guo? We have an appointment for my husband to get acpuncture downtown next week, although I'm blanking on which day it was. I think it's Tuesday at 11:30, but will have to check.

    I was thinking about how your illness seems to differ from mine, and thus what your experience might be on it.

    I've always thought (and this is consistent with what I recall your mentioning that Dr. P once said) that maybe your illness is primarily caused by particular herpes virus (unidentified as of yet) that acts like herpes simplex in that it randomly goes underground and then becomes active again. From everything you've said, it seems like you have an active infection of some sort, don't you think?

    On the other hand, my viruses seem for the most part to be hiding but nonetheless doing ongoing structural damage. Some of the things that most bother me (like yeast) seem much less of an issue for you, from what I can tell.

    Anyway, the one comment that Dr. Guo made to me was that I had so many things wrong with me that it would take a long time to fix. I believe that.

    On the other hand, if you pretty much just have an active viral infection, maybe it would be easier for him to attack it full-force and then get rid of it. It would be interesting to find out, anyway.

    I do need to warn you that at least at the beginning, this sort of medicine is not cheap. Dr. Guo's fees are reasonable--$85 for the first visit and $50 for follow-ups.

    However, I spent another $300 on herbs for the first month. Granted, this included five different herb combinations, a bunch of immune-enhancing cookies, and some immune-enhancing tea. It was still a good amount of money though.

    Dr. Guo makes a strong point of stating that his goal is to eventually decrease both medicines and herbs so that eventually people don't have to take anything at all (except for acute or new problems). I don't know how often he succeeds, but in theory the cost of the herbs would go down over time. The fact that they allowed me to tolerate the Famvir (which I'm paying just $45 a month for under insurance) made the investment well worthwhile for me, but it's not cheap.

    In theory, he says you should see improvement in 2 weeks, no more than a month. (In practice, both Paul and I saw improvement in one day.) Getting really well is a gradual undertaking though.

    If you're concerned about costs, I'm thinking that one thing that you might do is to let him know this during your meeting and ask if you can limit the amount to some predetermined amount. He seems really nice and (since your case is not--as with, say, cancer--acute) might be responsive.

    What I definitely would not do is to get his recommendations and then use just some of the formulas. They're designed by him to work together in concert, not as standalones. For instance, when I first got them, I tried adding one at a time in order to gauge allergies. What I found is that one of the supplements dried out my whole mucus membrance system, to the point where (for the first time in my life) I was getting bloody noses. As soon as I added the other herbs that balanced, the problem went away.

    The main thing that TCM uses for treatment is a special way of taking the pulse. Nails, skin, tongue and--of course--symptoms are important too.

    It sounds like you are improving from your low point, and it's also good that it seems that you're getting sleep. The slowness is irritating. This disease requires an awfully lot of patience, and I'm not a patient person.

    I thought from almost the beginning of considering Nexavir that it might be a good long-term treatment to use once I was finished with the antivirals, to keep from getting sick again and (if I still wasn't well) continue to improve. The barnyard smell discouraged me a little with regard to that idea, but mcondon's report that Dr. Cheney said it could be washed off after a short time made me feel that it did have potential. I might not get 100% of the effect that way, but if it helped it would make it usable for me since obviously I wouldn't want to be full into life and having to worry about smelling bad.

    Thanks again for the cream of tartar idea! I have a good feeling about it. If I can stop snoring (sinus yeast) and my vaginal infection goes totally away (it occasionally still recurs), I will shout about it from the rooftops.

    Best, Lisa

  20. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    Taking more of something is not necessarily brave.....sometimes it's really stupid. In this case, I was pretty confident that my intestinal yeast was under control and thus that I could tolerate a good bit of the cream of tartar. (My intuition said so too, after I felt what it was like to have tried just a teaspoon the first day.)

    To a certain extent that was true, but the systemic effects I had were a little too intense (especially since I'm trying to keep stress at bay). I've cut back to one tablespoon a day, which feels much better.

    If I can stay on an easily tolerable dose for several weeks, hopefully it will help dig out the types of yeast that are not easily killed through probiotics, Vitamin C, no sugar, etc. The fact that you're doing well on it makes me really hopeful.

    I'm still not certain about the idea of mixing the antivirals with the methylation cycle block supplements, of course. I just used in that one post a combination of my shallow understanding of the methylation stuff with logic to come up with what seemed to me to be a reasonable conclusion. (I honestly did not have an upfront agenda to prove that it was okay.....if the logic had said it was stupid to combine the two, I would have written that.)

    The problem is that I don't know enough about the methylation cycle stuff to be sure that I'm not missing something important that would make me more convinced that (as some say) they shouldn't be combined. I can't tell yet whether the strong "no drugs" stand is in large part philosophical (Amy Yasko is a naturopath) or strongly based on science. Hopefully Rich will shed a bit more light on the matter when he comes back. I also ordered the "Puzzle" book, although am not at all sure I will understand much of it.

    Based on having taken the supplements for 3+ weeks back in March though, I do not think that they reacted badly with the Famvir and other things that I'm taking. Careful re-reading of these status reports suggests to me that I was doing extremely well on them until I got the doxepin/SAMe reaction. The one time I took more than 1/4 of each of the folate supplements the reaction was too strong, but otherwise they felt like they were good things and seemed to be doing me good.

    So based on my reaction, it seems that they're worth a try for me once I feel settled into what I already am doing. After reading the stories of others on the board though, I'm thinking that anyone embarking on this protocol should go really slowly. Like maybe not try the SAMe until the other supplements are thoroughly tested and feeling okay. (Adding things one at a time actually seems to be what Yasko recommends......) Or take teeny tiny pieces of the folate supplements at the beginning. Probably normal people could take large amounts of those folate supplements without problem, but they certainly were potent for me. (I don't know if they will end up being a cure for CFS, but at the very least could end up being a good diagnostic for it!)

    Do you think that your apparent lupus precludes you from taking transfer factor for viruses or chlamydia pneumoniae as well as the mycoplasms? I think that Delia's using tf for six months could be part of why she's doing so well now. I found that the targeted transfer factor felt very bad for me the one time I took it (a couple of months ago), but that could change as I get my viral levels down and/or go off the AV's.

    I do hope I'm making progress in getting better. We shall see. It's been a slow road, but that's CFS.....

    Best, Lisa