Famvir Status Report Week 22

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Apr 14, 2007.

  1. Slayadragon

    Slayadragon New Member

    Friday-Saturday, April 13-14
    Famvir--Day 159-60

    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 143-160: 1000 mg

    I am continuing on the Famvir reasonably well. This seems due largely to the concurrent use of Human Growth Hormone, .2 mg (2/3 iu). Traditional Chinese Medicine herbs may be helping also.

    I was active over the past week (going out for several hours most days). My energy level was okay, but my brain felt inflamed most of the time. I don't know whether it actually was inflamed or whether it just felt that way, though.

    On Thursday and Friday, I took a small chip (maybe 1/8 of a pill) of the folate supplement Folapro. I don't know whether the folate was responsible, but using nebulized glutathione has had a very strong effect on me during the past couple of days, causing my brain to "cool down" almost immediately. (The previous couple of times I used the nebulized glutathione, it did nothing except maybe give me a very mild headache.)

    The sensation was so nice that I nebulized for at least 45 minutes total for each of the past two days (including for a while this morning). I slept extremely well on Thursday and Friday nights, with lots of interesting dreams. Friday evening I even went to sleep without any Klonopin and slept all night without it.

    However, today I have felt toxic and down. I have found my mind returning to the depressing phrase "all good things come to an end."

    Upon reflection, I think my liver is feeling the stress. Undoubtedly this is largely due to the Famvir and my other two drugs (Lamictal and Klonopin), but the folate/glutathione experiment does not seem to have helped.

    I have been pondering the concept that my liver needs to be strong at this point not just so that I can tolerate the Famvir but so that I can quickly filter out and eliminate the toxins from the drug (thus maybe decreasing the potential for bad long-term effects on my body). This will be especially important when I start the especially toxic Valcyte, but it's worth serious contemplation while on the Famvir too.

    I wish I could eliminate the Klonopin, but the substitution of glutathione/Folapro to help with sleep seems to have been a negative for my liver.

    I might be able to take a little less Lamictal, but this does not seem to be the right time to experiment with something that critical to my well-being.

    I'm allergic to either dandelion or milk thistle, and don't want to experiment with them to see which one at this time.

    I think the first thing to do will be to increase the ImmunoPro Rx to four scoops a day. I have been taking very little of that recently, which is mistake. It has always done a very good job of cleaning my liver.

    I don't know what to do about the nebulized glutathione and/or folate supplement. Cooling my brain down was good, but sending toxins to my liver is bad. My husband already told me today that I need to "smoke that pipe in moderation only." Undoubtedly that's the right answer.

    The good thing is that I am going to the TCM doctor in about two weeks. If indeed my liver is a problem, he should be able to fix it. He certainly has been a whiz at fixing my husband's liver problems, and so I see no reason why he shouldn't be able to support my liver effectively too.

    Meanwhile, I am getting a coating on my tongue for the first time since early fall, when I started on megadoses of probiotics and stopped eating sugar. I'm not sure whether the ribose has been giving me energy (too many variables), but I'm stopping it anyway. I can't afford to take any yeast risks.

    There is a certain irony in the fact that the white coating returned immediately _after_ I took cream of tartar for a week. That stuff eliminated my vaginal yeast almost immediately, had a huge negative effect (assumedly die-off) on my sinuses, and loosened up my bowels a little bit. Now the vaginal yeast is back and the sinuses feel exactly the same as they did before I started.

    I started a new homeopathic constitutional remedy, lachesis. It's definitely had an effect on me, but I'm not sure the energy has re-settled in the right way yet. My experience in the past was that homeopathic use (I was successful with a different remedy at the time) made me feel worse and then (a few days later) better. It will be interesting to see if this one does the same thing.

    On the other hand, it could be the glutathione on its own that's making me feel worse at the moment.

    I got a colonic yesterday and felt pretty good afterwards. Today that effect is gone though. Again, the glutathione might have nullified it.

    On a somewhat unrelated note, I have suddenly realized that I have been spending an awfully lot of time thinking about CFS these past several months. The more I think about the challenge of getting well, the more daunting it feels.....thus causing me to obsess about it even more. Perhaps it would be better if I put the whole program on autopilot for a good while and focused on other things.

  2. Slayadragon

    Slayadragon New Member

    By the way, I just rewrote my bio to include details of my treatment history both "before Famvir" and "since Famvir."

    Obviously it would be impractical for someone to read all these status report threads, and so summarizing what I've done so far in one place seemed a good idea.

    I will continue to update my bio as my progress continues over the next few months.

  3. mezombie

    mezombie Member

    I read (or tried to read) your revised bio. The way you've rewritten the section on your BPPV gives me (and possible others) the impression it's still something that is very much part of your life.

    I was under the impression that your BPPV resolved. I realize you must be scared it could resurface if the yeast spread, but that hasn't been the case in quite some years, correct?

  4. ask2266

    ask2266 Member

    I'm feeling good on the Famvir, but when I went to the odctor my hormones are still all out of whack. I also have had some pain return which probably means that I need to up my T3.

    I think that I have gotten through yeast hell-- infection and thrush are resolving. I'm back on diflucan, three-lac, digestive enzymes and probiotics. I plan to add c.o.t. in one month. I have to get this yeast under control or I can never go off of the diflucan, which is so dangerous to your liver.

    Lisa, I know what you mean about obsessing. I haven't been working but just waiting to get better. I wonder if I just forced myself to do something then I wouldn't be so obsessed and depressed over this. Then again, I don't want to overdo it. It's such a balancing act!
  5. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    It's been a while since I've looked at this thread....I've just been occasionally responding to random posts on the board. It's been a while, I realized.

    So can you use that sort of unconscious trick for supplements you've not tried before?

    I do that all the time (and after the SAMe/doxepin disaster even more often) with things I've used before. (I generally write down on a piece of paper a question--e.g. "Should I take this supplement now?"--and then see whether my hand automatically writes "Yes" or "No.") It's pretty accurate. My body is good at sorting out info and sending it to my subconscious even if my logic isn't capable of figuring it out.

    Now, I don't know how well it would work for things I've not tried (meaning even a tiny crumb of). I don't yet "believe in" the idea that substances can radiate energy that I can pick up on, although anything's possible. If what I'm doing is accessing my subconscious, my conclusion about whether something's good would have to be based on info that I've heard/read about it. This could be somewhat predictive, but it's not nearly as useful as actually gauging my reaction to even a little bit of it, I wouldn't think.

    I bought some litmus paper and my saliva came out something like 7.4, which I believe is normal. I haven't done my urine since I've been using boric acid suppositories for the yeast. I'd really like to know if the cream of tartar alters the Ph of the body, but am not ready to use it again in combination with the Famvir. I saw elsewhere that you're on the acidic side, but am not sure if you're taking c of tartar at all now.

    Being low in energy from liver toxicity seems categorically different to me from being low in energy from CFS. I can tell quite strongly from how my husband reacts when he's in bad shape. CFS is sort of like the day when you're just starting to get the flu whereas liver problems are more like having a really bad hangover. And also, CFS is like little spurts of energy (even if for 30 seconds) and then collapsing, whereas with liver problems everything gets very very sluggish all the time. Does this make any sense?

    I haven't had an artichoke for years and years. I should try one. I don't know anything about calcium d'glucurate, but will explore. If you do the castor oil packs, let me know.

    I'm not sure what the TCM is doing for me at this point, except getting my period back on track. (It had pretty much disappeared, which it periodically does.) There are a lot of variables going on. My feeling is that it's helping at a core level though, and that it will continue to do so as time goes on.....

    What's QXCI?

    Best, Lisa
  6. Slayadragon

    Slayadragon New Member

    No, it was just Summer 2006 that I last had the BPPV. I didn't realize before then that it was related to the yeast because the episodes were much more transient in the past.

    I've become even more obsessive about yeast than before, but don't think I'm ever going to be safe unless (maybe) I can get the CFS in general to get better.

    My doctor says that if the BPPV comes back he will have the compounding pharamacy some ampotericin-b ointment for me to use inside my nostrils, but that thought makes me feel only a little bit less worried.

    Thanks for pointing out that my bio was unclear; I changed the wording.

    Best, Lisa
  7. Slayadragon

    Slayadragon New Member

    So pain is related to T3 for you? That's interesting; I'd not heard that before.

    My friend's mom recovered from CFS after 10 straight years of it, under my doctor's care. She used a whole bunch of treatments, including a year or so of Famvir. The only things that are not yet fixed are her thyroid and her adrenals. I find that interesting. The last I heard, Dr. Guyer said he thought the problem was viral and prescribed garlic.

    What other hormones are you using? How do you know that they are problems?

    How long have you been taking the Diflucan again? I make it a habit of warning people about Diflucan resistant yeast since they have become such a problem for me. Why do you think your yeast problem is so out of control? You're not on antibiotics now, are you?

    You have gotten a lot better really fast. That's good, except it's hard to know how much your system will be able to handle if you try to resume your life again. I bet that (especially if you can get past the yeast thing) the topic of CFS will become kind of boring soon.....which is not to say you shouldn't/won't keep trying to improve, but that other things will become more interesting. That's starting to happen to me, even though I'm not yet at your level. I think maybe the re-interest in life means that I'm on the upswing though.

    Have you tried any herbs for the yeast? I found oil of oregano especially helpful the last time around. Also, what sort of probiotics are you using? My doctor now recommends 60 billion organisms, mixed strains. He has a product that offers the whole amount in 18 strains in one capsule, and since I've been taking it my tongue has been totally pink all the time. (The exception has been the past week or so....I'm attributing that to the ribose, which I've discontinued.) The white coating had never disappeared during my entire illness until I started using that particular probiotic, and so I think it's helped a lot.

    I'm so happy you're still doing well on the Famvir!

    Best, Lisa
  8. Slayadragon

    Slayadragon New Member

    Sunday-Tuesday, April 15-17
    Famvir--Day 161-63

    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 143-163: 1000 mg

    This week is going pretty well. I'm nowhere near as active as I was before I started the AV, but I don't have many obvious symptoms either. Occasional feverish feelings (apparently there still are viruses being killed) and a mild headache today. Other than that, nothing of note.

    The Folapro/nebulized glutathione experiment did a very good job of cooling down my brain for several days. It's starting to feel a little agitated tonight, and if it continues I will cautiously try a little bit more Folapro and a _little_ bit of nebulizing.

    I'm starting to think that the Folapro does not need to be taken every day in order to be effective. And starting anything (including nebulizing) in moderation is always a good CFS rule.

    I think if I can go really slowly, working on glutathione utilization could be very helpful to me. Too much is toxic to the liver though, which makes me nervous since I need my liver working well to filter out both the Lamictal (which is hard on it) and the Famvir/Valcyte (which have the potential of dangerous side effects).

    Fortunately, after a rest from the Folate/nebulizing and a whole lot of ImmunoPro Rx, my liver feels pretty much recovered. It seems to bounce back fairly well from stress, which is one good thing. Probably the TCM herbs are helping with that.

    I discontinued the ribose, increased my probiotics to 120 billion organisms per day, and added some oregano oil. My tongue is pretty much all pink again. Really, my gut does not seem in very bad shape. The fact that I cannot get rid of either the sinus yeast or the vaginal yeast is frustrating, therefore.

    I'm starting to think that yeast is going to be a problem for me until my CFS in general is taken care of. It would be nice if the Candidase would help, though. That is next on my list of things to try, I think.

    I took an extremely high potency of the homeopathic Lachesis, 10 M. About six hours later, I got this huge amount of tension buildup and felt like I was going to burst.

    I did what I call "anger exercises"---kneel on the bed, do body slams forward onto a pillow until exhausted, then write stream of conscious style until I felt I had nothing left to say.

    What came out is how pissed I am at going through this viral killing stuff but how impossible it would be for me to give it up. Afterwards I got some stomach rumbling, which seems to me to suggest energy is moving around more than before.

    This sounds very bizarre, but it's the same effect that I used to get a number of years ago when using high potency homeopathy (I was responding to a different remedy then). I had forgotten how strong the experience could be.

    I have been choking down even to myself my feelings about how difficult this is (in large part because I don't want people to tell me I should stop), but they certainly are there.

    I felt a lot better afterwards. And regardless of whether anyone believes the homeopathic remedy "did anything," getting the feelings out seems a good thing.

    I think it's interesting that the anger is coming now, when I am starting to feel better. I guess when I'm feeling really tired, there's no energy to expend on being angry. The fact that there's a long way to go definitely is making me mad, but the fact that I almost invariably am quite strong until crises are totally over makes me feel like I'm on the way up. I hope so.

    I have been reading dahopper's (Debbie's) progress on Valcyte with interest. She has gotten hugely better within two months, which is much faster than almost anyone else I've heard of.

    If my memory serves me correctly (I'm waiting for her to confirm), she took Valtrex for quite a while late last year and felt somewhat better as a result, but then slipped down again.

    The possibility that her fast progress now is due to the fact that she already had killed off a huge number of viruses (even if they weren't the ones that were making her _really_ sick) is a very encouraging one.

    My doctor still seems to believe that once I've gotten as much as I can out of the Famvir, it will take about two months more of the Valcyte and then I will be ready to move onto just pulsing it. He's got a good deal of experience with this Famvir-then-Valcyte approach, but seeing someone do it myself (Famvir and Valtrex are pretty similar) feels like stronger evidence even if it's just one case.

    So maybe my doctor's plans are realistic and there's an end in sight. At some level it feel like it, even though being Truly Well is a very very hard thing to even imagine at this point.

    The other notable thing is that I'm starting to be interested in things other than how to get better from this illness. That makes me think that my body believes it indeed is on the road to getting well and thus isn't driving me to keep obssessing about it, which is another good sign.
  9. cherylsue

    cherylsue Member

    I can so relate to what you said (see below) I could have written it myself. I get so discouraged with CFS. It is 2 steps forward, one step back.

    I should be grateful my tendinitis is healing and my major symptoms are fatigue/insomnia. The malaise is receding. I need to remind myself I am progressing.

    I think racing brain/obsession with CFS is part of the disease. We feel we are dying and are desperately trying to stay alive. I can see determination and desperation in your posts, too.

    However, we have found some "treasures" and things that work for us along the way. Maybe, not for everybody, but for ourselves.

    I read your bio with interest. You have followed a long road. Just a few more months, just a few more months....you'll be past this.

    Hugs, CherylSue

    You wrote:
    "I think it's interesting that the anger is coming now, when I am starting to feel better. I guess when I'm feeling really tired, there's no energy to expend on being angry. The fact that there's a long way to go definitely is making me mad, but the fact that I almost invariably am quite strong until crises are totally over makes me feel like I'm on the way up. I hope so...The other notable thing is that I'm starting to be interested in things other than how to get better from this illness. That makes me think that my body believes it indeed is on the road to getting well and thus isn't driving me to keep obssessing about it, which is another good sign. "




  10. Forebearance

    Forebearance Member

    Hi, Lisa!

    I'm back! Whew! It has been very interesting to read about how things are going for you these days. Man, there are so many things going on.

    It's especially interesting to hear how the FolaPro made the glutathione inhaling so much more effective.

    And I can't believe what Dr. P. said about Famvir! I mean, puh-lease! 4000 mg? I'm glad you've got Dr. Guyer, who seems like a voice of reason.

    Lol, Kelly, if you think Lisa is sensitive to the FolaPro. I only take a bit of the powder from a crushed pill every day. It is plenty strong for me.

    Love,
    Forebearance
    [This Message was Edited on 04/18/2007]
  11. Slayadragon

    Slayadragon New Member

    Glad to hear your tendinitis is getting better. I think that not getting deep sleep makes things heal more slowly (lower growth hormone), but it's good you're getting on.

    Didn't Dr. Papernik prescribe Famvir for you when you first relapsed this time around? Do you recall the dosage?

    I keep wondering about that 4,000 mg of Famvir. Maybe he meant 4,000 mg of Valtrex (which would be about 1,000 mg of Famvir) instead. Otherwise that sounds a lot more potentially toxic than Valcyte to me. Unprecedented, even.

    I hope that I feel better in a few months. We shall see. I seem to be just taking one day at a time at present, which is plenty.

    Heal up fast.

    Best, Lisa
  12. Slayadragon

    Slayadragon New Member

    I was interested to hear (one another thread) that you have someone who has a good sense of your body through your feet. What kind of massage there do you get? Hard or soft? Does it make a big difference?

    I had some amazing reflexology when I was in Tokyo last summer, at a place staffed by people trained in Taiwan and China. They told me that my body was full of poison, a concept that I didn't quite understand at the time. In any case, I think the work they did was in large part responsible for allowing me to get through that fairly challenging trip (even for a normal person!) pretty unscathed. I was zonked for a while after I got back, but it could have been a whole lot worse.

    Interestingly, the folks at the place in Tokyo spent a long time talking about how much poison there was in my body and figuring out ways to address it. I had my doubts at the time (even though they were making me feel lots better with their activities), but it now seems to me they were right after all.

    The acupuncturist today said that she herself would like to get reflexology and that she was going to look for someone. She speaks Chinese (I think she's second generation), and so if there's anyone in Chicago who can do it, she'll probably be able to find them. She said she'd inform me if so.

    I searched for "reflexology" on the board at one point and found a couple of different people who lived in Asia (Hong Kong or Taiwan, I can't remember) for a while and had gotten reflexology on a regular basis the whole time they were there. Amazingly, they both said that their symptoms almost entirely receded as a result (but returned when they stopped the reflexology).

    Considering that I've never heard anyone (at least until very recently) say that _anything_ made their symptoms recede, I find that really intriguing. My mother-in-law suggested I go to Taiwan for an extended stay (whether or not Paul could come), but feeling well only while there and then relapsing after coming home seems not quite right. Surely there must be someone good at this in China who would love to move the U.S. Just too bad it would be so much trouble to set it up....

    Do you get significant relief from the foot massages? How much time does s/he spend on your feet? Is it close to reflexology, would you say?

    I tried having reflexology at a place in San Francisco's Chinatown, but they didn't go deep enough to do anything. It's got to really _hurt_, I think. The ones I had in Japan were absolutely torturous, but it most certainly was worth it.

    Glad to hear you're still doing well with the methylating. Are you noting any effects (good or bad) other than improved sleep?

    Best, Lisa

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

    Slayadragon New Member

    Wednesday, April 18
    Famvir--Day 164

    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 143-164: 1000 mg

    Last night I took a Candidase capsule, and then I spent most of today with a raging sinus headache.

    It seems that every time I am feeling okay with the Famvir etc., I feel this compelling urge to try to chip away at one more thing and then regret it. Why I seem incapable of learning from my previous experiences to leave well enough alone for the time being, I am not sure.

    However, I feel fine now. No harm done....which does not mean I should allow myself to do any more such experiments in the near future. We'll see if I can restrain myself.

    My husband had acupuncture today, and since I went with him to Chinatown I decided to try it again myself.

    He had a great experience, as was the case the last time. Traditional Chinese Medicine is amazing at solving liver problems, it seems.

    Dr. Guo didn't say anything to me about acupuncture (he recommended it highly to Paul), and it didn't seem to have much of an effect on me immediately afterwards. However, tonight I've been sleepy and can feel energy moving around in my body much more. So perhaps it has been helpful. My liver is not in the best of shape with these drugs, and so perhaps it's at least useful with that.

    I had acupuncture regularly for maybe nine months when I first got sick, but eventually concluded that the effect was minor at best. And the woman who did it has an excellent reputation (Dr. Guo's acupuncturist today said very good things about her). I am not convinced that acupuncture (unlike reflexology or my doctor's "super-acupuncture" neural therapy) is helpful for CFS. At this moment in time, any structural support is welcome though. Maybe I'll do it again, even.

    Like most health care practitioners, the acupuncturist today did not seem to believe that CFS was a "real disease." Of course, TCM doesn't care what the Western diagnosis is for any disease, but she didn't just accept it in the way that she did Hepatitis B either. I am trying (mostly successfully) not to be too annoyed, since it doesn't matter in terms of treatment. Other than that, she was fine.

    She seemed really surprised that I already was doing almost every single one of her diet recommendations (e.g. no milk, no sugar, no coffee, no cold drinks, no artificial sweeteners, little chicken, few salads, little fried food, lots of cooked vegetables). I really think I've gone as far as I can with the non-drug route. It's amusing to see "alternative" practitioners so sure they can heal me and never succeed in doing so. For Dr. Guyer to recommend a heavy-duty drug (he really does not like drugs) means that it's really necessary for me, I feel quite sure. (Which is not to say that's the case for other CFS sufferers....I only know my own body well enough to be able to say.)

    The really ironic thing is that Hepatitis is immediately respected as a serious disease (worthy of interferon treatmen!t), even though it is relatively easy to treat through TCM. (Part of that is--as I heard recently--Heptatits isn't really dangerous in and of itself; it's only the body's response to it that's a problem.)

    On the other hand, CFS is not taken seriously by almost anyone, even though I'm increasingly realizing that it's an extremely vicious disease---and a smart one, since it merely saps all its energy from its victims rather than (at least quickly) striking them dead. Pretty soon people will realize this....it's not going to be much longer, I don't think.

    The acupuncturist also talked about alkaline/acidic issues, giving a list of foods to consider. Upon examination, my diet is plenty alkaline already, as is Paul's (meaning since he's decided to be attend to his health). My saliva is right where it should be. I do wonder about how the cream of tartar affects acidity, but I will think about that later on if I consider it again.

    The one thing that TCM does not approve of for my husband or me is raw vegetable juice. My husband said that this is because there were no vegetable juicers until about 10 years ago, whereas everything in TCM is based on how things were 1000 years ago. Considering that we're doing well with everything else, continuing to make juice seems like a fine idea.

    Anyway, the good thing is that the visit reinforced my belief that the antiviral use is the right thing to be doing. I really want to get better, and this seems to me (unless the methylation cycle block program is a miracle cure.....I find that hard to believe even though I think there's something to it) the only way out for me. Not necessarily for everyone with CFS, but for me.

    It occurs to me that other people take risks with their health for things that are important to them. Having children traditionally has been very dangerous (and still is to a certain extent), and yet people actively choose to do that. Pursuing giving myself life---a full life---seems to be just as worthwhile. I can tolerate living a partial life until I die a natural death, but not unless I make every effort possible to have a full one.

    This is especially the case since CFS takes a toll on the body. My grandfather (a classic CFS case even though the disease hadn't been "discovered") died of adrenal cancer at age 74. Considering how much this disease affects the adrenals, it's hard for me to believe there wasn't a connection.

    [This Message was Edited on 04/19/2007]
  14. Forebearance

    Forebearance Member

    Hey, CherylSue,

    I'm so glad you feel like you're progressing!

    Hey, Lisa,

    I get very gentle foot massages for half an hour, once a month. That's all I can afford. If I could, I'd get an hour every week!

    My massage therapist does regular types of massage, where she works on the muscles. However, she has very good "hands" and has many clients who are sick. She can feel the layers of muscles, fascia, and lymph nodes. She knows exactly how hard to press to get results without causing soreness later. She's also skilled in myofascial release.

    She tells me that myofascial release works really well on me. She always talks about whether my feet are "opening up" or staying tense. I tend to carry some of my tension in the arches of my feet, and being overweight is hard on the foot muscles, so she spends most of the time working on my arch area.

    It feels SO good. I do it as a way to be kind to myself. It's a morale boost, because for a few hours afterwards, my pain really is less.

    Afterwards I feel like going home and taking a nice nap, which is usually exactly what I do.

    I must have tried 12 different massage therapists before I found her. I just kept trying new people. I tried reflexology a couple of times, and it did absolutely nothing for me. But the people who did it were probably not all that skilled, and were definitely not trained in Asia. It mainly consisted of pinching and squeezing my toes, and I was like "Could you please work on my arches???" lol

    Being massaged anywhere besides my hands and feet is too painful for me. I ache for days afterwards. I was even having to tell the MTs to be more gentle when they worked on my feet! But I have no problem speaking up about that.

    I hope you find someone who can do something good for you. Since we're all individuals, maybe reflexology is right for you, and will help you a lot.

    I had a friend with CFS who did acupuncture, and liked it. I think it may have helped her get pregnant. It's great for that, I hear.

    I'm still having the same old good effects from methylating better that I've listed before: deeper sleep, getting thinner, and now today I noticed that doing math by hand was easier for me.

    I'm sorry to hear about your sinus headache, but I'm glad you recovered. I wonder if it would be allowed to take Sudafed while treating sinus yeast. That's one drug I can handle, if I take just one pill of it.

    That happened to me when I took three capsules of grape seed extract. It has a side effect of clearing the sinuses, and yikes! So I started with one capsule a day and some day I can work up to more.

    I wish I had a nickel for every alternative practitioner who was "sure" s/he knew what was wrong with me and was "sure" s/he could cure me, if only I would take eye of newt, or whatever. lol One guy told me to eat more salad dressing and take an acting class! That was my favorite alternative practitioner moment. hee hee.

    Love,
    Forebearance
  15. cherylsue

    cherylsue Member

    I'm glad to hear that you are having some postive responses. You did give up on the Nexavir, didn't you? I'm still on it, but when it runs out in two weeks, that's all for me right now.

    Yeah, a few days ago I was in misery with tendinitis. It's about 80 % better. Bromelain supplements really brought down the redness, pain, and swelling. I have some movement now, too. I'm not 100%, but I hardly notice it today. It's been a week. However, I've been really sleepy...

    Keep up the good progress!

    Hugs,
    CherylSue
  16. cherylsue

    cherylsue Member

    The first that I've heard of anyone using reflexology was a CFS patient from Australia who has his own website. Do a web search for Phil Murray's PVFS. He gives a list of things he's tried. He also has remitting/relapsing CFS. I think he did mention positive things about reflexology.

    My best friend came over today, and we went for lunch. She was really inspired about my visit with Dr. Guo, and she booked an appointment today immediately following my next visit. We are going together. She doesn't have CFS, but she has other ailments, insomnia for one, that she would like to address. She wants to get off all medications.

    I told her about your husband's success. I mentioned he was Chinese and maybe the formulas just work for the Chinese. However, she went over the booklets I had from Dr. Guo, and she feels very postive about it. In any case, the more people we have involved, the better we can gauge the success of TCM.

    My tendinitis has nicely subsided on the bromelain. If I had gone to a regular doctor, I would have had an X-ray and a cortisone shot. I like nice and easy treatments. If only CFS could be that easy.

    I wonder why Americans are so reluctant to embrace other medicines. Do you know Asian Indians have a very low occurance of Alzheimers? It is speculated that the ingredients in curry have a postive effect on the brain. You can't tell me that our American diet of high saturated and trans fat, sugar, and artificial colors and additives is an advanced diet.

    Most allopathic medicine works on treating the symptoms, not the cause. Here, try a few samples from the pharmaceutical company. We have a drug for every symptom.

    Well, here we go down another road. Let's see what happens.

    CherylSue
  17. cherylsue

    cherylsue Member

    Dr. P had me on 500 mg 3xdaily. It was way too much for me.

    CherylSue
  18. Slayadragon

    Slayadragon New Member

    Hi Forebearance,

    More salad dressing and an acting class! That's terrifically amusing.

    Like you, I am able to take pseuedphedrine without hugely negative effects. I did so when I had the vertigo last summer from sinus yeast, and it helped enough to reduce the dizziness and vomiting enough to get me to the ER. (Not completely though!) But it makes me wired, which is contradictory to the goal of getting good sleep.

    Anyway, the sinus yeast is not a huge problem at the moment, meaning that it's not triggering the vertigo. I just would like to get rid of it permanently. The Candidase may well help me to do that, if I go slow. I need to learn from you on that front.

    I'm very happy you're getting such good results from taking the tiny bits of folate supplements. That's encouraging too. Everyone else who's doing it seems to be going full speed ahead, and it's nice to know it's possible for at least some people to get benefits from it without all the detox symptoms.

    That's great that the foot massages help you so much. It's interesting that you can tolerate only a very light touch in general. That must mean something, although I'm not sure what.

    What sort of pain are you experiencing these days?

    Best, Lisa
  19. Slayadragon

    Slayadragon New Member

    Hi Cheryl Sue,

    That's interesting to hear about the bromelain helping your tendinitis. I have to try to remember that for future reference.

    I doubt that TCM works better for Chinese people than people of other ethnicities, but I do think it works better for the liver than most other health problems. Many, many Chinese people have liver problems....I'm not sure why. But I think that something like 15% of the population in Taiwan has Hepatitis B, most of it not sexually transmitted. This has historically been the case too, so they've had lots of opportunities to practice.

    That's great that your friend is going to see Dr. Guo with you. I will be interested in hearing her results.

    Most better-educated etc. folks in Taiwan these days use Western medicine too, and use TCM only as an adjunct or when other things fail. Sadly, they are incorporating not only our diet but our medical paradigm. Still, TCM is considered mainstream there (and seems there to stay), which is at least something.

    Paul's mother (who lives in Taiwan) has been happy to hear of his success but suspicious of the fact that the herbs have been fashioned into pills. (Generally it's brewed into horrible-tasting teas. I am really grateful that Dr. Guo developed his line of pills, even though I do take an awfully lot of them.)

    She has a friend who moved to the U.S. with her kids (all of them Ph.D.'s in physics and what-not). They live in D.C. Anyway, the friend is in her 80's and has diabetes that Western medicine seems unable to treat. The family has been looking for a TCM doctor but has been unable to find one they think is good, but have been impressed enough by Dr. Guo insofar as what they've found out so far that they are considering flying out to see him. So apparently he has credibility amongst Chinese folks too, at least in terms of his background.

    Let's keep our fingers crossed that all four of us get lots better or well, shall we! (And Paul's mom's friend too.....)

    As for Dr. Papernik....1500 mg sounds like a "reasonable" dose of Famvir, even though (after my Famvir experiences) I can see why you wouldn't have been able to tolerate it. I think he was confused about drug doses, since he doesn't prescribe these drugs that often. (He couldn't remember the Valcyte dose either.)

    1500 mg of Famvir is approximately equal to 4000 mg of Valtrex, and so I think that's what he meant. 4000 mg of Famvir is totally insane, of course. So my 1000 mg of Famvir (even though I've taken a while to work up to it) seems like it's on the right track even for him.

    Best, Lisa

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

    cherylsue Member

    Your story of your family's DC friends and Dr. Guo is reassuring. It is inspriring me to stay with the course. My mother is also encouraging me as well as my girlfriend. I respect the Chinese intellect, and I guess if I trust any doctor, it might as well be Dr. Guo.

    There may be TCM doctors that fail, but maybe they are not as attuned as Dr. Guo. He has experience on his side. In addition, your husband has made astonishing progress.

    Usually, I shy away from herxing, but this is something I am going to will myself to tolerate. In a way, I view this as my last stand for wellness. The methyl protocol looks complicated to me. It requires so many tests that I do not have access at this time. I just don't have the energy to run down another path.

    Whatever will be, will be.

    Hope you and your husband enjoy this lovely evening. Are you anywhere near the Lake? If I were, I'd be walking along the lakefront. It has to be gorgeous today.

    Hugs,
    CherylSue