Famvir Status Report Week Seven

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Dec 31, 2006.

  1. Slayadragon

    Slayadragon New Member

    Sunday, December 31
    Famvir--Day 55

    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 51-55: 500 mg

    I got up really early this morning to catch a plane and didn't get enough sleep. Was tired and slightly irritable all the way back home. After eating some food and a nap, I started feeling much better. In general, I'm still okay.

    I realized last night that for some reason I was feeling really happy---and this almost against my will, since I was kind of annoyed about something at the same time.

    This bizarrely happy feeling (maybe it's just what other people would call "normal"......it's been a long time since I was there) has hit me on a number of other occasions recently too. (Not today, but traveling is stressful for me. I'm doing fairly well, considering.)

    It's got to be either the Famvir or the large amount of ImmunoPro Rx that I've been taking that's doing this. Some would vote for the ImmunoPro (since supposedly it has a positive effect on dopamine), but I don't remember having an effect like this when I've taken similar quantities for extended periods of time in the past.

    If it turned out to be the Famvir though, that would be a big surprise. I was hoping for mental and/or physical improvement. The idea that I might get _emotional_ improvement never even entered my mind.

    But there's no reason why depression etc. couldn't be caused by viruses. The stuff I take for my mood problems---Lamictal, St. Johns Wort, DLPA, l-theanine---has been pretty successful, but conceivably it's just covering up an underlying problem that's partially caused by a virus. It will be interesting to see if this odd effect I've been having continues into the future.
  2. cherylsue

    cherylsue Member

    Encouraging news - hurrah! Do you feel like you are turning a corner in the management of your disease? Do you still suffer from malaise, or is it just the fatigue now? What are your worst symptoms? Are they better/worse than they were before treatment?

    I spent half the day watching Dr. Cheney's DVD The Heart of the Matter and nursing my cold. (My husband and I went to dinner party last night, and we were out late. It certainly brought out the worst in my cold, so tonight we're staying in.)

    I posted a few of my notes while watching the DVD. There's a lot of medical jargon and diagrams, but I got the gist of it and posted it tonight. The video is worth watching and very thought provoking. I'm still trying to absorb it. Someday, I wish you and Allxrider would watch it and give me your impressions. There's a lot more in it than what I posted.

    I read in another article from Dr. Cheney that he believes that mercury toxicity and viruses combined together trigger CFS. Allxrider has been mentioning mercury toxicity in his posts, too. Dr. C mentions heavy metal toxicity several times in his DVD.

    I'm looking forward to the reports from the conference in January. That should be really interesting, too.

    Happy New Year!

    CherylSue
  3. Slayadragon

    Slayadragon New Member

    Monday, January 1
    Famvir--Day 56

    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 51-56: 500 mg

    I was pretty lethargic today, which is not surprising considering my airplane trip yesterday. I forgot to take cortisone in the morning (which I usually do before traveling or other stress), and that probably contributed.

    No weirdly happy feelings today, but maybe they'll come back after I am rested up again. It's fascinating to hear you had the same experience, Jolie.

    I have realized that I haven't experienced any stiff muscles like I used to for a couple of months. I tend to think this is from my increased Co Q 10 (250-400 mg per day). My muscles got a lot less stiff a long time ago when I started on 60 mg of Co Q10. I can't recall whether this is supposed to be an effect of this supplement.

    I went to Jamba Juice and got 2 ounces of wheatgrass juice, which I drank on an empty stomach. I don't have any evidence, but I tend to think this is helpful for detoxification purposes. (I'm not as convinced about the immune system stuff, but you never know.) I'm going to try to start doing this at least a couple times a week, I think. If there's even a chance the Famvir is going to work, the last thing I want is to have to stop taking it because of liver problems.

    CherylSue--

    Hmm, I don't know about "malaise." I've had some of that weird happiness, but on the other hand I ended up crying today for something that may or may not usually have made me so upset. I feel more of an urge to do things than before I went on the Famvir, but actually doing many of them does not feel to me like a good idea. Resting seems better.

    So I'm not sure how I'm doing yet. Time will tell. I'm still thinking the end of February will be a turning point, but you never know. At least the drug is not making me feel terribly bad any more, and so continuing the experiment is definitely worth doing.

    My most frustrating symptom is lethargy. There are lots of things that I would like to do, but bringing myself to do them is another matter.

    However, it seems to be functional lethargy---meaning that if I force myself to do those things, I feel _lots_ worse afterwards. This has obviously been more or a problem since starting the Famvir, although I'm finally getting back to about the level I was before. If I ever start being able to naturally do lots more things without pushing myself really hard (and without crashing afterwards), I'll know that I'm close to being truly well.

    The second most problematic symptom is intolerance to stress, in terms of a) day-to-day annoyance stress, b) working-too-hard stress, and c) interpersonal emotional stress. This is an issue in general, and has become much more so since starting the Famvir.

    I feel like I'm becoming more and more cloistered as a result. I am reluctant to start any work projects (even though there are some opportunities that I hypothetically would love to pursue) since I know they would make me feel stressed if I actually started doing them.

    Fortunately, my husband is very stress averse also and we've learned how to get along with one another over the past 19 years, and so my marriage is not a problem in that. There are a few other people who do not make me feel stressed, which is great. And I am happy to go out (when I have the energy) as long as I am fairly confident that no major stress will happen along the way.

    All in all, my life seems to be becoming increasingly quiet though. Considering how ambitious and active I was before getting sick, even after a decade I feel this to be unfortunate.

    This stress aversion is despite the fact that I'm pretty sure my adrenals are in okay shape. Hopefully this just means that my body does not want interference in doing its job of fixing itself, and my stress intolerance will get better as time goes on.

    Perhaps I should be happy that these are my biggest problems in life and leave well enough alone. I want to give getting truly well a good shot though, and am going to do everything I can to get there until the end of the year. If I've not improved by then, perhaps I'll resign myself to living this way for the rest of my life. I'm not quite ready for that yet, though.

    ***

    I had somewhat elevated mercury levels in a couple of lab tests (urine and hair). I got all my fillings replaced in the "safe" way--that was actually the first thing I had done, about two months after I got sick. And I did a couple of oral chelation treatments (DMSO? is that what that stuff is called?). My mercury levels come up as normal now.

    Did the somewhat elevated mercury help trigger CFS? Maybe it was a contributor. (My head injury, pregnancy, and prior overwork seem bigger stressors. And I did start off with that killer flu, although whether that was a cause or an effect of the CFS being kicked in, I'm not sure.)

    Too late with regard to the mercury now, anyway. I can see why working on this issue would have been helpful for Rich Carson, who was exposed to a major mercury spill at one point in his life. I don't see it as being a big factor for me, at least no now.

    I'm happy that there are people on the board who are going to the conference, and hope that they will post detailed reports when they get back.
    [This Message was Edited on 01/01/2007]
  4. cherylsue

    cherylsue Member

    Thanks for sharing your experiences. I understand your lethargy and emotional lability. I'm there myself. That's all part of this syndrome.

    I'm glad you chelated the mercury. That's a good thing. However, that and the killer flu may have triggered the CFS.

    Dr. Cheney talke about the phases of CFS. They are as follows:
    I. Onset - misery High RNaseL activity and cellular dysfunction
    II. Triad - brain dysfunction, pain, and fatigue -Misery
    component- cellular toxicity
    III. Dynamic Dysfunction - Action component, push/crash phenomena, limited boundaries. Brain is okay, less fatigue, but just can't do much.

    IV. DNA phenotype adaptation phase - locked in at the gene level. Function can improve in time.


    I suspect you are in Phase III and I am moving into phase III. I can imagine how frustrated an active and intelligent women like yourself must be. I am, too, and sometimes I get very agitated about it. If it weren't for this board and for you and the others, I would lose my mind. It so helps to have support and know you are not alone in this.

    I think they will find the key to your CFS, and will be able to treat you. Ampligen may be the way for you someday, if these antivirals don't work. At least you know Dr. Papernik will be the first to prescribe it to you.

    This conference is great, and I hope they come up with some more theories. I hate to see the same thing researched again and again. Think outside the box.

    I'm nursing my cold and hope I don't relapse. It's been making more tired than usual. I'm disappointed in my ProBoost and Sambucol. Usually, they work to prevent this. However, I've been under a lot of stress this past month or so, and I've been pushing it. I've started the Epicor, and I hope it doesn't let me down. I'll let you know how it works (antiviral). I didn't get into the Cumanda/Burbur thing because I was herxing. The D-Ribose wasn't making me feel so great either. I'm one of the 3 who can't tolerate it.

    I will keep you and the others in my prayers that we find the key to our illness and find relief!

    Hugs,
    CherylSue
    [This Message was Edited on 01/01/2007]
  5. Forebearance

    Forebearance Member

    Thanks for the report, Lisa!

    I'm familiar with the lethargic, cloistered feeling. Yes.

    I went to a family event over the holidays, was forced to stay three hours longer than I would have liked to because of my ride home, and afterwards felt like I never wanted to leave my house again.

    It's just so weird having this illness. It's uncharted territory. All we can do is hang in there. A well-meaning auntie of mine, after seeing me lying on a sofa for the last three hours at the family event, asked me "Are you tired?" so innocently. I just wanted to laugh.

    I think I will never stop trying to get better.

    I'm really glad to hear about your unusual happy feelings!

    Love, Forebearance
    [This Message was Edited on 01/02/2007]
  6. Slayadragon

    Slayadragon New Member

    CherylSue--

    You know, I didn't progress through those stages at all. I had several horrible months at the very beginning of my illness before taking DHEA, which made life at least bearable. After that, it's been a gradual chipping away at things, with a definite difference based on the things that worked.

    My adrenals seem to have become stronger over time, mostly because I've worked on them. But if I were to go back and abandon all my treatments (including eating whatever I wanted and being less careful about pushing myself), I would disintegrate to a 20-30% very quickly even now.

    This is one of the things that Cheney has said that does not seem to intuitively match my own experience. However, perhaps I will be more sold on the theory after I watch the DVD's.

    I don't know if Ampligen would work. It still seems so far the down the pipeline that I'm not real inclined to put much faith in it. Quite honestly, I don't see much point in feeling a lot better than I am now when I'm in my 60's or older. If I'm going to do it, I want to do so now while there still is work that I want to accomplish. It's the lost opportunities with regard to work that I regret. Everything else in my life is pretty good, actually.

    I felt cold-like symptoms coming on last night and this morning, probably from my airplane travel. I took some ProBoost and Sambucol syrup (I bought it since the elderberry I ordered from Pure Encapsulations has yet to arrive). I'm not feeling those symptoms any more, although I'm still tired.


    Forebearance--

    Probably it's really childish of me, but recently my aunt decided she was going to come to Chicago for the weekend. I told her in advance that I was not in good shape from Chronic Fatigue Syndrome and that I had a trip to Denmark planned for the following weekend, and thus that I could do one tourist activity with her but that I wasn't going to be able to do anything else that requires driving much further.

    She decided she wanted to go to the Museum of Science and Industry, which we did. After she was here, she commented on how stressful the traffic was. I tried my best to explain my illness and the effect it had had on my life.

    She had suggested before that she wanted to go to the Frank Lloyd Wright house, and I had said that I wasn't going to have the energy to do that and the museum. The next day, I suggested some things that we could do near my house. She brought up going to the FLW house again, and I relented.

    The following day she assumed I was going to take her to the airport, and I had to say that I was too tired. When the cab came, I paid the driver in advance.

    The next day, she wrote to me and said I shouldn't have paid for the cab because her work would do so. The fact that she could have gotten her work to pay but made the assumption I would drive her anyway made me annoyed, and I wrote back that I wished she had just said thank you and left it at that.

    The kicker, though, is when my other aunt wrote to me a month or so later that "I talked to Chris and she said that you were really tired while she was in Chicago. Feel better!"

    I'm still really annoyed about it.....it seems like it was a willful misunderstanding on her part, since I did explain in detail the effect that my illness had had on my life. Probably if I used my current strategy (referring to it as Neuroendocrineimmune Disorder and describing my immune system test results as well as AIDS-like symptoms), she would have taken me more seriously. But now I don't want to talk to her at all any more, regardless.

    Well, it is kind of childish to expect people to know what this is like unless they've been there.....especially since when I push myself I seem healthy and also seem to look healthy. It still seems to have gotten to me, though.

    I even get annoyed when a cashier in a supermarket tells me I look tired. That's even more childish, maybe. But if you assume that they know that people can be young and still really sick (if with cancer if nothing else), perhaps it's not so much to expect that they should sort of leave you alone.

    It's stupid to let myself get upset about such things though, since it just wears me out more. Maybe I need more therapy.
    [This Message was Edited on 01/02/2007]
  7. Forebearance

    Forebearance Member

    Aw, Lisa, you have my sympathy. It is hard not to let it get to you sometimes.

    I understand. I thought my aunt knew what my CFS was like, but apparently she still doesn't understand how serious it is. I too can appear pretty healthy for a few hours, and maybe because I don't complain a lot, I end up getting penalized.

    Would we get more respect if we shaved our heads? lol

    I try not to get mad at strangers, who just don't think, but at times I have used the line "not all disabilities are visible" if I thought the situation warranted it.

    Love, Forebearance
  8. Slayadragon

    Slayadragon New Member

    Tuesday, January 2
    Famvir--Day 57

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28-29: 250 mg
    Day 30-36: No drug
    Day 37-50: 250 mg
    Day 51-57: 500 mg

    OK day, kind of sluggish. Had wheatgrass juice at Jamba Juice, went out for lunch, bought groceries.

    Am thinking about making pineapple juice after hearing dncfngrs' experiences on it, although I'm not sure whether thinning the fibrin (if it did indeed do that) would be a good thing or not. There's also a chance that I might be allergic to pineapple.

    The sluggish feeling may be from the wheatgrass juice, which is supposed to maybe clean out the lymph system (and maybe do other things). I am going to experiment with it more.

    I forgot my first dose of Famvir (which I usually take when I first eat something) until about 9 p.m. This may explain why late in the day I started feeling substantially better. I don't think it was just the sugar in the pineapple juice. (That pineapple juice was exceedingly good though.)
    [This Message was Edited on 01/02/2007]
  9. Slayadragon

    Slayadragon New Member

    You get colds/flus so often that I was thinking that this actually might be the right antiviral for you to try.

    My doctor gave it to me to try while I was getting the immune panel done, since it's very mild. I didn't get results, but he said it would have taken three months (I abandoned it before then).

    I looked it up on Wikipedia and it says that it's for colds/flus. I don't know the mechanism.

    I don't know who would prescribe it though. I'm not even sure it's commercially made....I got it from a compounding pharamcy.

    It's something maybe to ponder though.
  10. Jillian40

    Jillian40 New Member

    I just read the last post and wanted to mention that my FFC doc gave me a RX of Amantadine and told me to take it
    if my herx symptoms got to be too much and also to keep it
    on hand for flu/cold symptoms in the future. I was also put on Famvir, though for a shorter period.

    I too didn't really understand what its mechanism was or when/how to use it. So . . . I didn't use it.

    But now that I've read a bit more about it, I will be sure to use it when my system is under the weather from catching
    something from one of my students or others.

    As far as I remember, it should be available at a regular pharmacy or can easily be ordered to be filled. This is where I got mine filled.

    There was something else I was going to comment on . . . hmmmmm . . . don't remember. I've been fighting off a headache for the entire day, (left side of my face is aching) so my mind is kinda compromised at the moment.

    Lisa, thanks for keeping us updated on your Famvir trials.
    These types of treatments are potentially so very helpful for all of us with CFIDS and various infections. Your risk taking and willingness to take a lead in your own treatment is the most crucial factor in your healing process.

    I will share that I've made an appt with my primary care doc to ask for a referral to see an infectious disease specialist. The C. Pneumonia that I have continues to, I feel, contribute to my lethargy, breathing difficulties, and even pain, etc. and from what I've read in 5 or 6 articles has been widely identified in folks with MS as well as CFIDS.

    It has been called the "heart germ" by one researcher and has been identified in a large sample of heart attack sufferers in higher titers. All of the research I've read points to a need for a multi layered protocol, with 4 or more medicines in order to erradicate it fully through it's 3 phases.

    So, I do thank you Lisa for sharing your protocol as it encourages me and others to continue to search for ways to treat the root causes.

    My heart goes out to you as you hang in there day in day out. Keep hanging in there.

    Gentle Hugs,
    Jillian
  11. Slayadragon

    Slayadragon New Member

    I don't know why the amantadine got called into the compounding pharmacy. It's in softgels, which I'm not sure if the compounding pharmacy even makes. Maybe they were just calling in other prescriptions there and added this one.

    I just read that a) the Chinese have been feeding amantadine to chickens etc. in great quantities to prevent avian flu and (this may be related) b) it is now ineffective for a high percentage of influenza a (its original use) in the U.S. I'm not sure if that means it would be ineffective for CFS since it could be killing something else (like the herpes drugs kill things they're not approved for). I will ask my doctor.

    The thing I find really fascinating is that amantadine is supposed to help with sexual dysfunction from SSRI's. That could be a huge use for the product if it really works. Of course, I'm almost sure this is off patent, and so no one's going to promote it for that use. So very sad.

    I was tested as having c. pneumoniae too during my last doctor's visit. He didn't even mention it, maybe because he doesn't want to give me ABX and our time is limited. (I schedule a whole hour for this Indianapolis visit.) I noticed it after I left the doctor's office and very briefly was perplexed because the name had "chlamydia" in it. Thank goodness for Google. (Not that this is better, of course. Quite the contrary.) I wonder how much the bacteria are affecting me. Well, one step at a time.

    I certainly have learned a lot over the past five months, both through my own experiences and through this board. It's amazing how much our experiences are related and yet how oblivious the medical community is. That will change soon, but it's still annoying.
  12. Slayadragon

    Slayadragon New Member

    Wednesday, January 3
    Famvir--Day 58

    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: 250 mg

    I decided to go down on the Famvir for a few days to make it easier to travel to Indianapolis and see my doctor. It will be interesting to see how I feel.

    I did a juice fast today, and juiced so much that I broke my juicer! I am going to buy another one since I think this was a good thing for me. The huge bag of spinach that I juiced seemed particularly good. (I also included granny smith apples, carrots, and dandelion leaf.) I think the benefits go beyond just giving my sysem a rest. Since my digestive system is not in the greatest shape and eating is a constant challenge for me (I'm working on those issues), maybe my body just needs the nutrients.

    I feel like I'm detoxing a little, but not too hard. Hopefully tomorrow will be okay.

    Today in general was reasonably okay. I stayed at home, paid bills, straightened up. Made juice.

    If people have questions they would like me to ask my doctor about whatever topic, please let me know!

    I watched the movie "Rent" today and was reminded of how I cried buckets and buckets when I first saw the show on Broadway. Thiw was just after it won the Tony in 1996, about nine months after I got sick.

    What is interesting is that I remember identifying extremely strongly with the characters who had AIDS and thinking that was _strange_ because I had this trivial disease rather than something serious, and that all I needed to do was just to focus more on not letting it get me down. How easy it was to deceive myself, when I was desperate not to be sick and no one else believed that I was.

    Of course, this was before anyone knew anything about CFS. And it was also after I had done a number of things (hormones, food allergies, yeast) that made me somewhat functional. Otherwise I wouldn't have been in NYC seeing Broadway shows to begin with.

    Anyway, now it turns out that even the CDC says that CFS is as debilitating as all but very late-stage AIDS. So I was right to cry when I first saw that show. Ten years later, I figured that out.

    I seem to have moved beyond denial (as well as anger and for the most part depression) now. And for a long while, I was in acceptance. Now I seem back to bargaining again. We will see how it goes.
    [This Message was Edited on 01/03/2007]
  13. Slayadragon

    Slayadragon New Member

    Thursday, January 4
    Famvir--Day 59

    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 58-59: 250 mg

    Felt kind of hyper today. I'm not sure whether or not it was too hyper (since I was trying to get a lot done). Cutting the dose of Famvir in half makes a big difference.

    I don't know if the Famvir has done me any good yet, but it doesn't seem to have hurt anything. If it weren't for this board, I would not be thinking of that as an accomplishment. Apparently it is one, though.
  14. Slayadragon

    Slayadragon New Member

    What was the CDC statement?
  15. Slayadragon

    Slayadragon New Member

    Friday, January 5
    Famvir--Day 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 58-60: 250 mg

    Talked to my doctor for a whole hour today.....I was the last patient and the conversation was interesting for him (since I'm a fellow researcher) and so he threw in the extra half-hour for free.

    Got through everything on my agenda, and so Monday we are going to do a session of a treatment that he has used to partially repair my head injury. Hopefully we can make more progress.

    It was the most encouraging conversation I could have imagined, not least of which because it made sense and because it was consistent with everything that I knew already. (Actually, he said verbatim what I had concluded the best-case scenario with regard to treating my illness would be. When we have independently come to the same conclusions about things, they always have been right on target. I see no reason why this should be any different.)

    I only got six hours of sleep last night and so am tired. I will write with details soon, though.

    Oh.....feeling fine but hyper. Apparently I am used to the 250 mg of Famvir by now.

    Hope everybody is doing okay tonight.
  16. Slayadragon

    Slayadragon New Member

    Oh, I did know that the CDC said that about AIDS, cancer, etc. Obviously it's true, for most CFS patients who don't figure out the things to do to get at least somewhat better. It's generous of the CDC to admit it, though.

    You're going to get better, Jolie. I don't know if you're going to get _all_ better. But you most certainly are going to get a lot better than you are now.

    I actually now think that you and I are going to get close to being all better (although not to the point where we ever can take it for granted). I've never felt more like I was on the right path with regard to anything in my life before. And I have never been anywhere close to this sure about anything in my life (at least in the past five years ago since I started to tune in to things more) that did not turn out to happen.

    There's a first time for everything, though. We shall see.

  17. Forebearance

    Forebearance Member

    That's great news about your doctor visit, Lisa!

    Forebearance
  18. Slayadragon

    Slayadragon New Member

    As I mentioned, I visited my doctor today. We spent an hour talking in theoretical terms about his strategy for making patients well using AV’s and other tools available. His approach is substantially different from any other that either he or I have encountered, and yet exactly like what (after some immunology study and a lot reflection) came up on my own. I was hoping that he was going that direction and that he has had success. Both of these things turn out to be true.

    We talked mostly about AV’s, since this is the main thrust of my new treatment. He has had 135 patients on Famvir and 35 on Valcyte, and so he has a good observation base by now.

    Here are the basic points that we discussed:

    1. His goal is to get the patient’s own immune systems to be able to (for the most part) be able to resume taking care of pathogens on its own.

    He believes that it is far easier for the CFS patient’s body to keep pathogens (and especially stealth viruses like members of the herpes family---CMV, EBV, HHV-6) out to begin with than to remove them.

    (See my previous post called something like "AV’s, Herpes Viruses and the Immune System" if you want the theory.)

    Therefore, the goal is to use the drugs to get those pathogens out of the body in sufficient quantities for them not to burden the immune system. Without that extra weight, the immune system can handle other things on its own (including other viruses that might be hiding as well as bacteria/mycoplasma).

    This only will happen if the patient’s body is already in as good of shape as possible (on all the things in Teitelbaum’s book, for example) before starting. Things like getting rid of yeast and food allergies, as well as strengthening adrenals, are crucial.

    If these things are not done before the AV is taken, the AV will likely not be tolerated very well and have to be abandoned before it has done as much as it can.

    Even more importantly, if the body is not strong in other ways before starting on the AV, it will be unable to fight off remaining pathogens even if a good number of viruses are killed off. If the immune system is unable to kick in itself, the results of the drug will be only temporary.

    His experience is that if you give AV’s to patients who are already in good shape, their immune test numbers (from the ImmunoSciences test that I keep bringing up) go totally back to normal.

    NK Cell activity increases, apparently because HHV-6 (which is killed by herpes drugs) is one of the factors that lowers it.

    Rnase-L and Interferon Alpha-Serum are measures of the cells taking last-ditch efforts (not very effective and highly tiring ones) to save the body from viruses that the NK Cells are supposed to be killing off. Rnase actually makes the cells with viruses in them commit suicide, which as one would expect would be exhausting.

    Apoptosis is cell death. This is caused when viruses use the energy of the cells to replicate, and also when Rnase causes the cells to commit suicide.

    If you decrease the viral load with herpes AV’s, all these measures go back to normal. This only happens when you start with a body that is as strong as possible.

    It is important to give the body as much energy as possible during the dying-off phase and then as the immune system rebuilds itself. Rest is good. Keeping adrenals strong is essential. Liver is less important. Continuing all protocols to keep the body in good shape (e.g. with regard to yeast, sleep, food allergies) is extremely important.

    2. This approach is totally different than those done by Drs. Montoya, Lerner and Peterson. It is pretty dissimilar to those of the FFC’s as well.

    The first group of doctors use AV’s without doing anything to build patients’ strength. Moreoever, they have thus far experimented on very sick patients (since those people have "more to gain"). And finally, they have for the most part thrown huge quantities of drugs at them during the first few weeks of the protocol, lowering it a bit after that.

    As one would expect (based on the discussion above and observations on this baord), those patients have had tremendously difficult times coping. Drop-out rates have been high.

    (Note: Dr. Guyer says he has had only two patients drop out thus far. One was because of headaches alone. Since the patient had headaches before starting the drug, it was unclear whether the somewhat worse headaches were being caused by the drug or by something else.)

    Moreover, this protocol is not designed to get patients to a point where their immune systems are functioning on their own, because their bodies are not healthy enough in general to be able to do this.

    These doctors’ explanations for why they use such high amounts of the drug in the first few weeks is because they do not want to have resistant strains develop. Dr. Guyer’s approach is that if the patient’s body is in good shape before going on the drug and isn’t destroyed by the drug, it will build gradually to be able to take care of any resistant strains (as well as other pathogens---including mystery viruses, bacteria and mycoplasma) on its own.

    The FFC’s aggressive approach is the same used by Montoya, Lerner and Petersen, he said. This is unsurprising since (to his knowledge) no one else has taken this long-term "restore the immune system" approach to the problem. He did comment on the FFC’s "cookie-cutter medicine," suggesting that even though they tried to build up patients’ bodies a little bit before starting on the antivirals, they did not do so in an individual enough way. (He did not seem to know a whole lot about those centers and did not comment further. Since they don’t have info that he doesn’t already know, I don’t think he’s paying much attention to them.)

    3. Dr. Guyer recommends just a few things to make AV use a success.

    • Focus on building up the body in as many other ways as possible before you start.
    • Do not start at a time when you have been under stress. Start at a time when you are feeling pretty good already.
    • Rest as much as possible while on the drug, so that you do not wear yourself out and prevent your own immune system from working.
    • Support your adrenal glands as much as possible. Support measures include DHEA, cortisol, adrenal extracts, licorice and ginseng.
    • As much vitamin C as can be tolerated without diarrhea should be taken, to help kill viruses and support the body. (I told him I took 6,000 mg of EmergenC. He told me that I should be able to go much higher, which I will do.) This helps to kill viruses as well as to support the body (and especially the adrenals) during this difficult time.
    • Supporting the liver is good too, but not nearly as crucial as the other measures.


    4. Dr. Guyer uses both Famvir and Valcyte on patients who do not respond fully to Famvir alone.

    Famvir and Valcyte are basically the same drug except that Valcyte is much more potent (in both efficacy and toxicity). They both kill a broad spectrum of viruses, including (he says) HHV-6.

    His usual strategy is to kill off as much as possible with the Famvir. 500 mg of Famvir is a tolerable dose (remember this is equal to about 1300 mg of Valtrex) and so he rarely goes higher.

    If patients stop having improvements with the Famvir and are not better, he moves to Valcyte. Using Valcyte for only part of the treatment time reduces the likelihood that toxicity will be a problem.

    The main conceivable risk with regard to Famvir and Valcyte (other than die-off) is bone marrow dysfunction. He has not seen this in any of his patients. He has not heard of it in any of Petersen’s, Montoya’s or Lerner’s patients either.


    5. At some point, additional to help the AV do its job better may be used. These products do not do well on their own, but can work in combination with AV’s:

    • Transfer factor
    • Natokinnaise (aka Lumbrokin, earthworms)
    • Nexavir (aka super-Kutapressin) (Apparently there is a compounded transdermal Nexavir made by one pharmacy that I could use, since my rubber allergy prohibits me from pushing needles through rubber stoppers.)

    6. The antiviral is taken until it seems to have done all that it can.

    He believes in my case, this will be about six months.

    After that, it may be pulsed on occasion, just to give the system a little bit of extra help. For instance, a couple of days a week, or one week a month.


    7. He strongly believes that more die-off means that the drug is "doing something" and that good results should be expected (provided that the body is in good shape to begin with).

    Apparently my immune system results were substantially worse than all but a few of the patients he’s tested (and of course he tests only very sick patients). He was unsurprised (and also encouraged) that my die-off was strong, and glad that I handled it well.

    Despite the severity of my immune system dysfunction, he seems fully confident that it will go back to normal.


    8. A wide variety of improvements are seen after the immune system gets back in order.

    The die-off symptoms that Jolie and I got (cognitive, emotional and physical) suggest that viruses that were being killed off were hidden in the parts of the body that control these factors.

    Once the viruses are removed, improvements in those areas should be noted. Emotional improvements are very common. Brain fog cognitive functioning lifts, as does various physical measures. Apparently the viruses being killed by the drug are doing this damage.

    Moreover, once the immune system kicks back in, other systems of the body should improve soon.

    We talked about Cheney’s heart theory, for instance. He said that he thought that Cheney was right about the heart being a problem, but that this was caused by a virus. While that virus probably was not susceptible to the AV, once the immune system kicks in working again itself, it is able to kill the heart virus itself. He thinks that hawthorne may be somewhat helpful, but that it doesn’t solve the problem.

    I mentioned that pretty much every health problem is caused by viruses, including obesity. He then mentioned that many patients on the drug had found they lost weight without trying, even though they weren’t exercising or changing their eating habits. His belief is that the body was able to eliminate the obesity virus.

    9. Once the immune system repairs itself, keeping it from going out of whack again is essential.

    Apparently the reason that it goes out of whack to begin with is because a very high degree of stress allows a virus (perhaps HHV-6 or similar) to sneak in. When this happens in people with a propensity for CFS, HHV-6 often wins the battle and disables the NK Cells. Then other viruses that hide can replicate at will, followed by other viruses that the immune system can’t keep up with.

    We didn’t discuss stressors in particular. At this point in the conversation I just said, "So I guess I should make sure not to have any more head injuries." He agreed that would be a very good idea.

    My guess would be that other stressors would be things like any sort of injuries, operations, childbirth, high-stress occupations, emotional stress, manic-depression (to the extent that it causes uncontrolled mood swings), illness, etc.

    If the immune system is functioning well, the body should be able to take some of these stresses. However, being cautious to avoid unnecessary stress and to take very good care of ourselves when we are stressed is crucial to remaining well. Continuing to work when we are dead with the flu would be a very bad idea, for example. So would the sort of life I used to have (working 100 hours a week teaching classes and doing heavy academic lifting).

    It is possible that after the antivirals are used for a while, resistant strains will indeed develop. A functioning immune system will be able to knock them out before they get a strong foothold. If the immune system becomes dysfunctional a second time, it may be more difficult to eradicate the problem unless new drugs killing resistant strains become available.

    Fortunately, CFS patients have learned to adapt to a slower lifestyle. Retaining that ability to slow down is crucial if we want to stay well for the rest of our lives.

    The one product that he really seemed to like for times of stress is made a company called Atrium/Douglas. It is called "Anti-Aging Support" and includes thymus, mesanchyme and adrenal. (This is what used to be called ProHealth Molecular GF, except the new stuff has thymus in it.) It is for rejeuvenation only.

    Energy Flash (with mesanchyme and adrenal) can and should be used on a regular basis. He seems to like mesanchyme as well as adrenal for controlling stress on an ongoing basis.

    We have talked about ProBoost before, and he thinks it is somewhat helpful. He didn’t mention elderberry, but anything that prevents flus can be helpful in the long term.

    10. Continuing to follow the good habits with regard to taking care of our bodies used to build up strength prior to AV’s is extremely important.

    Keeping yeast levels low (see my post "Controlling Yeast") is crucial. He is pretty opposed to any antibiotics for this reason, since killing uncontrolled yeast is apparently much more difficult for the body than killing bacterial or mycoplasms (as least for CFS patients). Continuing no sugar (and to a lesser degree herbs) is extremely important.

    He now recommends 60 billion units of varied probiotics per day. This is equivalent to 60 regular capsules---obviously absurd. However, some companies make products with this much. He sells an 18-strain version with 60 billion units per capsule in his store ($50 for a month’s supply.) This can be obtained from other places. Pure Encapsulations has a 5-strain with 10 billion each that could help (six capsules is a lot more manageable than 60). Hyperloading the digestive tract should help yeast remain under control even when the diet includes stressors such as some white flour.

    The endocrine system may need less support if viruses stop attacking it. Food allergies may fade, but if they do not they definitely should be avoided since they stress the body. Klonopin or other sleep medications might not be needed, but they should continue to be taken if needed for a good night’s sleep (since deep sleep is an important component of staying well).

    Toxins are a stressor too. In my case, they do not seem to be the major problem, based on the previous tests we’ve had done. When I told him I had been fairly constipated since childhood, he said that was a pretty toxic place. Again, he just recommended as much vitamin C as humanly possible and huge amounts of probiotics. Apparently he thinks this is far more detoxifying than any fancy herbal combination I might find.

    11. If I get my immune system in order, I may be able to do more treatments.

    He still wants me to take growth hormone. I agree with this. Obviously my body has been doing no repair work whatsoever for a very long time, and repairs are always a good thing. If I can tolerate the HGH, it could help my long-term health a lot.

    He mentioned that he himself had just had a hernia operation and found hgh to be very helpful in recovery. I shared my experience about how much it helped me with my ankle injury (I’d still be in pain if it hadn’t been fixed by the hgh, I am sure.) If I do have to have any surgery etc. after I am "better," HGH seems a very important component of staying well long term, since healing takes a lot of resources.

    **

    The only other things that we talked about were specific to my yeast and hormone problems.

    I thanked him for solving my vulvadynia (I will share this soon). People have this for years and years, and he made up the formulae especially for me. I am such a challenge to him (both in terms of my screwed-up body and my probing mind) that he is determined he is not going to fail me on any problem I bring him, I think.

    I also told him that while my sinuses were better, my husband still complained about snoring and that there still seemed to be a problem. He already has concocted a nasal salve with antibiotics (applied with a toothpick), but this infection seems to be a fungal one that is diflucan resistant. He said he would make a salve with ampotericin-b for me. He appears to have come up with the idea on the spot for me. I thought that was very clever.

    I’m uncertain about my hormone status, and so we’re going to check that. He wants to do CBC’s fairly regularly on the Famvir. (They need to be done more frequently on Valcyte.)

    **

    Oh, in addition, I mentioned to him that I was feeling sort of hyper and thought it would be helpful if I could reduce my bipolar tendencies (stemming from my head injury) further. They’re controlled by a drug, but fixing the injury is better. He has a trick called neural therapy that he uses, which I will explain at some point. He’s going to do a session on Monday, since we got through my whole agenda today. (I tend to think I’m the only person except his assistant M.D. who understands his theories and can contribute thoughts of my own, and so the extra half hour he gave me was not solely out of altruism. Plus after 9 years together, this is a big breakthrough and so it’s important to get it right.

    **

    I asked him again how in general I compared to his other CFS patients. He said that he thought that I was innately much sicker than most patients he sees (a very sick group to begin with), and that it had been frustrating to get me only up to a certain point and then have me plateau. He seems quite sure that this is going to be a profitable route for me, and that as long as I am careful with my health I should be well for a long time in the future.

    This should give hope to those individuals on the board who are very sick too. I really believe there is a way out. It’s not the way out of any other disease in the world, but it’s possible. There’s even theory and precedent. Certainly, it does require a lot of determination and a lot of work and (unfortunately) a lot of money. But having it be possible---after spending the last 11 years believing it was totally impossible---seems a real miracle to me.

    **

    I forgot to ask about Valtrex (he never has brought it up). I will try to do so at neural therapy.

    Forebearance, I did not ask about nasal congestion since that was not my own major problem. Our conversation suggested to me that herxes occur in conjunction with the site where viruses are hiding. The mental/emotional symptoms that Jolie and I got seem to be related to killing viruses in the brain, for instance. I am thinking that Virustop may be killing something more superficial like a cold you’ve never been able to rid yourself of. That’s just a guess though. If I have time, I’ll mention this.

    It’s late now, but I wanted to write this quickly to see if people have questions or comments before Monday. I will try to get more information when he’s poking needles (hundreds of times) filled with procaine in my head then. I’ve certainly done it plenty of times before.

    Hope this makes some sense to others. It certainly makes sense to me, but I’ve been thinking about it intently for the past two months (since the only other thing I’ve been doing is herxing).

    He thinks that when (not if, when!) I get better I should write a book about my experiences, since they are so comprehensive and suggest that basically anyone can get better from this disease. It may be my moral duty to do so, I guess. He would have to contribute (even if I wrote his parts) just to give it validity. I don’t think he really wants to be famous and have huge numbers of people knocking on his door……if he can’t grow exotic plants, he’d rather limit his patients and spend a lot of time researching and thinking. But with six kids to put through college, it’s hard to turn patients down too.

    Anyway, he didn’t say one thing that I hadn’t considered before theory-wise, but he is in agreement with my own theory. And it makes me believe more strongly than before than strategy in dealing with this illness is crucial. I find it hard to believe that anyone who goes about this in the usual way (toss a huge quantity of drugs at extremely sick patients and then let them be) is going to be cured over the long term.

    Whereas I think that I have a chance of being "cured" (as long as I don’t screw myself over by doing something stupid as I did the first time I got sick), truly. I lost hope about eight years ago that there was even a smidgeon of a chance that might happen,, and so it’s kind of a miracle to think that (based on everything I know and understand and intuit) it seems even a remote possibility.

    I’m going to put this in my status report as well as in a separate post, since I’d like a wide
  19. Slayadragon

    Slayadragon New Member

    I'm starting a new thread now.