Famvir Status Report Week Nine

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jan 15, 2007.

  1. Slayadragon

    Slayadragon New Member

    Monday, January 15
    Famvir--Day 70

    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 67-70: 500 mg

    I've felt pretty good today. Still a little "under the weather" in terms of fatigue, but no obvious symptoms like congestion or headache.

    I do so much better with the herxing when my body is in good shape and I get lots of sleep. Going back up to 500 mg as soon as I returned from a relatively stressful trip was a bit of a challenge. If something like that happens again, I may wait a day.

    I may add something to push the virus killing a bit more sometime soon. Undoubtedly the reasonable thing to do would be nattokinaise (sp?), and I am going to order some. I'm really intrigued by Virastop, though. Perhaps I will try one capsule soon and see what happens.

    I am very impressed by the turn the board has taken, by the way. There is so much more information on it than there was even a couple of months ago. That's been really helpful, and certainly is a good thing for all of us.
  2. Slayadragon

    Slayadragon New Member

    Tuesday, January 16
    Famvir--Day 71

    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 67-71: 500 mg

    Last night I took a Virastop capsule, and this morning I took a second one.

    I spent the day feeling pretty feverish, which for me has been a consistent sign of viral herxing. I've experienced it on Famvir, Ambrotose, ImmPower (a mushroom supplement that's supposed to increase NK Cell activity sold on this site), and now the Virastop.

    With the Ambrotose (which is supposed to up NK Cell activity and other immune function), I felt overwhelmingly sleepy for about four hours. With this, I felt sort of drugged most of the day.

    I slept for two hours this afternoon and woke feeling better. I then went out for dinner and then to the grocery store, so it didn't knock me totally on my rear.

    I'm inclined to take some more of this stuff to get as much killed off as possible before starting the Valcyte. Upon reflection, I'd prefer not to stay on Valcyte any longer than I have to.

    I'm not afraid of getting really sick like Montoya's patients (my doctor doesn't work that way) and the chance of bone marrow problems seems slight. (That will be a good time to use loads of ImmunoPro Rx for detox since that seems to make drug side effects less of a problem for me.) What I'm afraid of it getting blood drawn every week to make sure my bone marrow is okay. I faint very frequently when I get blood drawn. Presumably I will be more likely to faint if I'm herxing, and the stress of fainting will make the herxing harder on my body. This is being a worry wart, but it sort of is a valid concern.

    For a little while I was annoyed at my doctor for not giving me Famvir earlier (i.e. 3-4 years ago when he first started using it). But considering my lab values and the way I've been herxing, it sounds like Famvir alone may not have been enough for me to get wholly better anyway. It seems to work for some people (at least when done according to the strategy that my doctor and I discussed), but I think that I may need a bit more help. And since my doctor didn't start using Valcyte until early fall, perhaps I started this whole endeavor at exactly the right moment.

    My vaginal infection seems healed internally, but the vulva still seems to be slightly tender. I think I'm going to try some of the Candidase that Forebearance thinks helped her with vulvodynia.

    After I see how that works, I am going to add the natokinaise. After that, I will go back to the Virastop. I do think it's killing something off in a way that's not too strong for me. And now I've gotten into this weird mentality where if I'm not herxing at least a little, I feel like I'm wasting time.

    My new juicemaker has arrived. I don't know how good it is. I ordered the one Rich Carson likes without investigating options, and have yet to open the box.

    I bought a whole bunch of fruits and vegetables to juice at Whole Foods today. I couldn't find anything else that seemed good to eat except maybe applesauce (homemade or bottled) and eggs. My body appears to want nutrients but not to have to work to digest them. That actually sounds like a perfectly reasonable request to me, and so I will honor its wishes.

    The only problem with juicing is that almost all juice (especially carrot juice) has a huge amount of sugar in it. Right now my yeast seems under control, and with 60 billion probiotics per day perhaps I'm fairly safe. I will continue to monitor by checking my tongue (which, for the first time I can recall since I've been ill, is still a very healthy pink with no white whatsoever). Compensating for the sugar in the juice is another good reason to try the Candidase, of course.

    [This Message was Edited on 01/16/2007]
    [This Message was Edited on 01/16/2007]
  3. Slayadragon

    Slayadragon New Member

    I'm putting this here so that I don't lose it.

    Forebearance--

    Sore throat means the virus is winning and congestion means you are winning. That's quite an interesting way to put it.

    With sore throat, do you mean a scratchy throat, like normal people often get when they're first getting sick?

    Upon reflection, I must have figured this out intuitively. When my throat gets scratchy, I start trying to kill germs (e.g. Proboost, goldenseal, Grandma Millie's brew, maybe Sambucol). When I get congestion, I don't feel the need to do anything of the sort.

    I've got to remember this and put it in the "how I got better" book that my doctor already has persuaded me to write (even though I am not yet better). Hopefully you won't mind if I use it.

    Interesting how quickly you can tell that the DHEA is needed by an immune response. I never was able to correlate that, since I never had any symptoms of having a cold back when I was short on DHEA.

    Now that I think about it though, the time when my own throat got scratchy on the Famvir probably was right before I started taking the supplemental DHEA that made me feel better in general. I'm going to have to go back and look at my status reports to see exactly what the timing was.

    I am constantly impressed by how attuned you are to how your body is functioning.
  4. Slayadragon

    Slayadragon New Member

    Wednesday, January 17
    Famvir--Day 72

    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 67-72: 500 mg

    I've been very worn out since I got up this morning.

    This was made substantially worse by a lot of discussion with my mother and her lawyer regarding a legal problem she's having.

    Emotional stress is by far the worst thing in the world for my health.

    If/when I get well, I need to remember this and scrupulously avoid it. The fact that I got CFS this first time means that I always will be inclined to have a relapse if I'm not extremely careful with regard to both physical and emotional stressors.

    (Cat's comment on the "Have You Heard of CFS Patients Getting Truly Well" thread about how she was well for a few years until job stress preceded a total breakdown makes me particularly conscious of that. I checked her bio, and since she had mono at the beginning, she may not even be a relapse/recovery patient. It is obvious that emotional stress is a very bad thing.)

    I took two capsules of Candidase today. I didn't get what I associate with a yeast herx response. I'm just exhausted in general. I don't think this is related to the Candidase, but if I keep feeling this way, of course I will eliminate the Candidase and see if it helps.

    I used my new juicer today, and it's absolutely terrific. I think it's called the Omega 8300. Regardless, it's the one Rich Carson uses. I can imagine it lasting for years, and it's much less trouble to use than the kind of juicer I used to have and that I recently broke.

    So far, all I've consumed today is three glasses of juice and some brown rice. I don't know if that's optimal, but I'm having a hard time imagining myself eating anything substantive today.

    I plan to have some Ultra Clear and some more juice before bedtime to prevent my blood sugar from getting low before I sleep.

    Depending on how I feel tomorrow, I may continue this juice fast (or at least make some more juice). All these nutrients and enzymes feel good for me.

    My body feels stiff, which is unusual for me these days. I'm accustomed to this being related to toxins, although I'm not sure what kind of toxin (except the Famvir) might be a particular problem at the moment.

    I haven't used ImmunePro Rx (which creates gluathione) for the past couple of days, so I'm going to have some of it. I also will take a steam shower. Maybe I'll also do at least a little bit of yoga.

    I do not feel well today, but again I blame it wholly on emotional stress. I really, really need to avoid it in the future.


    [This Message was Edited on 01/17/2007]
  5. Forebearance

    Forebearance Member

    Hi, Lisa,

    Sure, you could call it a scratchy throat. Whatever you call the feeling you get in your throat when you are coming down with a virus. Sure, you can use it in your book. lol

    Maybe being hypersensitive to hormones makes me notice their effects more easily. :) Thanks!

    I did have a pretty uncomfortable immune response to the Candidase for the first couple weeks, if I remember correctly. But I felt even worse when I stopped taking it, so I slogged on. But as you said, I don't know if that's related to how you felt today.

    I'm glad to hear that the new juicer is great!

    Love,
    Forebearance
    [This Message was Edited on 01/17/2007]
  6. cherylsue

    cherylsue Member

    you are enjoying your juicer, and your tongue is in the pink!
    I wish I could say the same for mine, which seems to be a bit whitish. I tried some of the Cream of tartar suggested by Dr. Wm. Wong today. Just a tad. I didn't notice anything different.

    I've been battling a mild cold for 3 weeks now. Just when I think I'm getting over it, it comes back. The congestion has always been clear but it just drips in the back of my throat. Knocked me on my kiester though. Yesterday, I overdid because I was feeling better, and today spent a couple more hours in bed during the day.

    I've also started nattokinase and probably will continue to take it as long as it doesn't adversely affect me.

    Good health to you both.

    CherylSue
  7. Slayadragon

    Slayadragon New Member

    I'm am increasingly sure that my doctor's recommendation of as much Vitamin C as my body can handle without diarrhea (which has turned out to be more than 20,000 mg per day) is helpful for cold symptoms.

    I know that's a lot of Vitamin C, but I've never heard from anybody that it has the potential of doing any real harm to anyone (except those folks like who can't have _any_ vitamin C without severe pain).

    Obviously you're conservative with supplements, but more Vitamin C (although not necessarily as much as I've been taking) could be a possibility for you.
  8. Slayadragon

    Slayadragon New Member

    I herxed a _whole_ lot on 500 mg at first, and my doctor told me to go down to 250 mg for 2-3 weeks and then come back up. That worked well.

    I went down to 250 mg the last time because I was going on a busy trip (drove to Indianapolis to attend friend's wedding, see doctor, visit other friends and family).

    At 500 mg, I can do things for maybe a couple of hours a day but not much more.

    On my trip at 250 mg, I was a good solid 80%, which is higher than the 60-70% that I was before I went on the Famvir. (I plateaued at 60-70% years and years ago, and had never been able to get above it before the AV.)

    Since my doctor's strategy (and mine) is to build my immune system rather than kill viruses as quickly as possible, I don't want to stress my body too much. So in the future if I'm going to be busy for whatever reason and I'm still tired from the drug, I may decrease again.

    Most of the time these days I'm devoting all my energy to killing viruses, though.
  9. Slayadragon

    Slayadragon New Member

    Thursday, January 18
    Famvir--Day 73

    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 67-73: 500 mg

    I woke up today with the scratchy throat that Forebearance says means "the virus is winning." I took my usual array of acute virus-fighting stuff (lots of vitamin C, Sambucol, goldenseal/echinacea, Grandma Millie's Brew, ProBoost).

    I skipped any supplements I wasn't very familiar with (such as the Candidase and Virastop).

    I went back to sleep for a couple of hours. I woke up with the scratchy throat gone, but a monster headache has been building since then. My lymph nodes in my throat also are swollen. My temperature is low--97.4 degrees.

    I tend to believe that the emotional stress from yesterday is associated with this decline, and more resolved than ever to try to avoid such stress in the future.

    My doctor told me that he thought fasting would be good for me but that I probably would want to do only one day at a time because of the possibility that too many toxins would be released at once. That well may be related to this too. I'm now starting to think he's not only a magician but psychic as well.

    In any case, I never anticipated this herx to go on for so long (and never thought to ask). But apparently Dr. Montoya's patients go on at least this long, and at far higher levels.

    I guess I have to say, no wonder I've been sick all these years, if there are this many viruses to kill off.


    [This Message was Edited on 01/18/2007]
  10. Forebearance

    Forebearance Member

    Rats, I'm sorry to hear that you felt worse today, Lisa. I hope you survive your headache.

    Wow, CherylSue, nattokinase! Cool. Let us know what it does.

    Love,
    Forebearance
  11. cherylsue

    cherylsue Member

    Lisa, I went to the library yesterday and checked out Susanne Sommers AGELESS, a new book she had written. There were a lot of things on biodentical hormones, health tips, etc. Mostly things that you've already mentioned.

    Anyway, she had an interview in the book with a doctor whose father died at 59. His father had bragged that he hadn't had a cold in a dozen years. According to the interviewee this is bad. We need to get a cold every 2 -3 years to keep our immune systems functioning and working. The fever, etc. fights off a lot of other bad things that may be going on in our bodies. (I really don't know how true this is. It is after all, ancectotal.) However, the fact that your immune system is revving up, seems to be a positive thing.

    Maybe, my body relapses to keep the virus in check. The fact that my fevers have gone down with each bout from 103, 102, 99.6 may mean that it takes less to fight the virus. Although the virus certainly leaves devastation in its aftermath. It certainly takes me a long time to recover. Each bout leaves me with a little less. I sure hope it burns itself out!

    When I took 500 Famvir when I first came down with this, I almost went into toxic shock. Maybe, I should have taken less. I still have 100 mg. hanging around in my medicine cabinet. There's 10 days worth. I may try it someday.

    I'm glad you reached 80% at one point. I was about 80-90% when I was working full time. You can live with that. Maybe, you can't do marathons, but you can live a decent life.

    Your 100% though sounds like it would be 150% for most people. You were quite energetic and prolific when well. I couldn't do that for any length of time when I was normal. What are your goals? Not to return to your former over achieving self, I hope. To work again? To have children? (My girlfriend had her first baby at 45)

    What are your worst symptoms? Fatigue? Low stamina? low motivation?

    Just curious. You seem to be functioning better, even with your herxing, than I am. And I do hope you write that book! I will be standing in line to buy it.

    Hugs,
    CherylSue
    [This Message was Edited on 01/19/2007]
  12. cherylsue

    cherylsue Member

    On one of your other posts you had asked me about being feverish? Yes, I was for the first 3-4 months, and many times it was only slight 99.5 or maybe normal. I still get mild burning sensations in my shoulders or arms, but that is receding. It had come back during my cold, and also comes back with stress.

    Dr. Papernik called it peripheral neurapathy caused either by an active virus or the aftermath of the virus. From my research, herpes viruses can cause this. People with fibro and Ms have it also.

    Are you running a fever? I think it is the Famvir, though. I didn't get burning sensation until the hospital put me on Levaquin. I was allergic to it, I think, and it started that burning reaction in me. I personally think it is the Famvir that is causing the feverish reaction in you. Do you have access to a PDR? Is that a reaction from the drug?

    Good luck.

    CherylSue
  13. Slayadragon

    Slayadragon New Member

    That's interesting about the comment from Suzanne Somers' book. The idea that it's not healthy not to have colds or flus keeps coming up, although the reason for the phenomenon seems unclear to me.

    The idea that your body is keeping viruses in check is a reasonable one. Have you ever heard any explanations for the recovery/relapse phenomenon, other than the ones we've made up?

    I watched about 15 minutes of the first Cheney DVD before it went screwy on me. There is some truth to the fact that I fit in Stage 3---I'm not that miserable most of the time (prior to the Famvir), but also don't feel much like doing anything.

    I tend to think that, like a lab animal that's been shocked enough times, I've stopped having the will to do things that I know are going to be painful for me though. For instance, I managed that 2-week trip to Japan, which would have been a lot of stimuli even for a normal person. I crashed when I returned, but it seemed worth it for us to see my mother-in-law.

    So I _can_ do things, if I force myself. I just am disinclined to do so unless there's a very good reason, since I know I'm going to pay consequences. Cheney makes it seem like this is a physiological difference, but in my case it seems psychological.

    Forebearance is another example: she's been sick a long time and is now resigned to living within her limits rather than pushing herself to do things that will make her crash. My brother, who has been sick since 1987, also has resigned himself to leading a "quiet life".

    Of course, you keep cycling back from a high-functioning Stage 2/3 to a Stage 1. (And a big-time Stage 1.) I don't know what to say about that.

    Although.....it sort of sounds like herpes simplex outbreaks, doesn't it? That virus can go dormant for very long periods of time, but then pop back up in full force. And outbreaks tend to get less severe over time, all things being equal. So here's a new theory----maybe you have an unnamed herpes virus that tends to act more like herpes simplex (on a grand scale), whereas steady-state CFS patients have a different unnamed herpes virus as their main problem.

    I sort of like that theory.

    It seems obvious that the antivirals would be effective at killing off a lot of your viral load and maybe even getting you to the point where you would be functional on a permanent basis. It would take a lot more than 10 days though. More like 10 months of initial treatment, and 10 years (or forever) at a lower pulsing dose. If enough people do this, perhaps the treatment will be more commonplace and people will figure out how to do it in a way that's right for you, without all this surprise stuff that's happening to me or the intensity of Montoya's patients' reactions.

    Upon reflection, I think the FFC's are not using the AV's for long enough periods of time. They get a lot of effect from them but only use them for 3-6 months (after which they discontinue). It's my increasing impression that if you're going to use the milder AV's (e.g. not Valcyte), you've got to do it for a longer period of time, and then continue to pulse for at least a while. They also do not build up their patients' systems enough. I wonder if the FFC's will figure out what they're doing and succeed or if they'll eventually be replaced by other physicians.

    So again, my worst symptom is that if I try to do too much, I crash and feel awful. I therefore have a lethargy that does not make me feel fulfilled, even though my life is not a bad one compared to many or most other people's. Perhaps most people would be satisfied with that and not be willing to do "whatever it takes" (including to endure Montoya's treatment) to get better, but I seem not set up to be able to give up if there's a possibility of doing better.

    If I get well......first, I'm going to have to be careful to avoid stress and overactivity studiously, since I know now that my body is inclined toward CFS and has the potential of falling into it again. No children---I'm basically in menopause and my husband is eight years older than I am. There are a lot of work projects that have the potential to be meaningful, interesting and financially beneficial that I keep having to turn down because I know I won't have the energy to complete them properly. It would be good to be able to do them. And also to have the energy to do a few more things without feeling bad.

    Plus, the thought keeps coming to mind that these viruses are really bad for me. My doctor is of the opinion that they will end up causing cancer, and I agree with that. A greater quality and quantity of life would be a good thing.

    The thing about the herxing is that I can control it by taking more or less of the drug. (Montoya's approach would be frustrating because he seems to allow no respite.) You can't control the relapse in the same way, which obviously is very frustrating.

    I've yet to measure myself with a fever when I've been feeling feverish. That's a symptom of the herxing (any viral herxing.....Famvir, ImmPower, Ambrotose, Virustop). It's more like hot flashes that go on for long periods of time. If anything, my temperature is low.

    If this were a drug reaction, I'd be staying the same or getting worse over time, I think. The fact that I'm doing better on it makes it pretty clear to me that it's a herx, and thus worth continuing with.
  14. Slayadragon

    Slayadragon New Member

    I admit, I was not obsessive about taking my temperature on a regular basis throughout my illness.

    There were about 8 years where I rarely budged from my normal 6/7 (except when I was stupid and let yeast proliferate), and after a while of doing all kinds of things and getting no results, I pretty much gave up on trying for any kind of improvement and just tried to live my life within the confines.

    After some reflections, conversations with my doctor and observations on this board, I actually think that I _was_ doing all that I could at the time. My immune system seems so messed up that it was a permanent block against improvements once I got the basics (hormones, food allergies, yeast, other digestive issues, sleep, NADH) under control.

    I've added a few things other than the antiviral recently that have helped (most importantly upping my CoQ10 to 400 mg per day), but before the possibility of the AV help, I really had reached a dead end.

    Anyway, I never was obsessive about taking my temperature.....especially since whenever I did (a number of times a year) it never ever varied from 98.4-98.6.

    I've only gotten these low readings (down to 97.4) since I've been on the drug. I've not gone above 90.0 since I've been on it, as far as I've been able to catch.

    I'm currently at 98.8, and thus apparently not as worn out as I was yesterday.

    This drug really has done a number on me. It's good to know that (based my experiences the several times I've tried it) my system will go back to its usual level or higher if I decide to discontinue or lower the dosage.

    Short-term suffering I can handle. I probably even would do the Montoya thing, if I weren't pretty confident this way didn't have just as much potential.

  15. Slayadragon

    Slayadragon New Member

    I keep using these numbers to describe my condition without the Famvir, but I get the feeling a lot of people don't know what they mean.

    I am able to do about 4 hours per day of pretty much any activity that I want, and another couple of hours doing what normal people would see as pure down time (e.g. having a quiet dinner at a restaurant).

    I can do a lot more than that in one day, if I "borrow" energy from the future. If I spend an extra hour being active, then sometime in the near future (although not necessarily for a week or two) I have to spend that hour resting in order to make up for it.

    I don't get crashes that keep me debilitated for long periods of time. I just get tired and need an equal amount of time to recover.

    At that level, I rarely have symptoms of discomfort unless I do something really stupid (mostly letting yeast overgrow).

    The only exception to this was when I took Provigil. That drug made me totally awake and in high gear (but without being manic). My mind was extremely sharp and I got more done in one day than I usually do in a week of activity. I felt exactly like I did before I got sick, and for the first time since I got sick.

    Then I crashed in bed for four days. Being active in high gear is a lot different than being active in low gear.

    I got to this level solely by fixing myself through what I consider the normal ways.....e.g. nothing that's not in Teitelbaum's book. I took care of _all_ the stuff in Teitelbaum's book though.

    Perhaps it seems strange that I would be so determined to get wholly better considering that my life in general was okay before I started. I would much prefer to live a full life even if getting there is difficult. And I don't like the idea of my body being full of viruses either.

    I also think that the reason I have the potential of succeeding on this drug is because I already was at that level. Otherwise my system would not be in shape to give my immune system the energy to get itself back into full functioning, which is the goal.

    I tend to think that until people have taken care of all the things in Teitelbaum's book to the best of their ability, it would be a bad idea to take the antivirals in the way that I'm doing it. They're not going to do what they're supposed to if the body's not already in its best possible shape.

    It may be that taking care of all the other stuff is not as crucial for Montoya's protocol of whipping the illness into submission. I haven't heard that he insists that they get to that point before starting on his drug.

    However, Montoya's program sounds pretty intense. I prefer this way, if I can get away with it.
  16. cherylsue

    cherylsue Member

    My fingers are crossed for your success. You are such an inspiration.

    I understand your pacing. That's what happened to me last year. I kept pushing beyond my limits. I was working full time, socializing, cleaning house, going to concerts in Chicago, etc. I never let me body recoup by complete resting. There were several other things going on, but now I know I can't ignore this disease, or I relapse. Your strategy is very good even if you stayed at the 60/70% level. However, your viral load is too high, and that must come down!

    I think why my body has come online in the past is that my systemic problems were not as bad as yours. Some yeast, but no vaginal yeast or intestinal/gut yeast problems. I had hypoglycemia/syndome x which certainly contributed. And Stress which we all have. I may have adrenal problems, but that has to be tested.

    And of course, I have the viral thing going on. I don't know if I will ever recover from this bout. I'm really scared. My exercise tolerance lessens with each bout. My cognitive is okay, though, for which I'm grateful.

    That's what I think is the difference between our CFS syndromes. You've come from a further distance as far as systemic problems go.

    BTW, you sounded like Dr. Papernik with the herpes analogy. He says it is probably HHV6, and lies dormant and comes out periodically like a cold sore. He says get sleep and fix the system defects to get "recovery" of 80%. He can't promise me more than that.

    I so agree with you on the Provigil. It made me sick and WIRED so I couldn't sleep. There's nothing more awful than having malaise. and you can't even sleep it off.

    I so appreciate your positive attitude.

    CherylSue


    [This Message was Edited on 01/19/2007]
  17. Slayadragon

    Slayadragon New Member

    CherylSue--

    What did Dr. P mean by "fix the system defects"?

    Did he talk to you about stuff like yeast, food allergies, sleep, hormones, digestive issues, etc? He never did with me, but maybe it's because based on my descriptions he felt I had them under control.

    I actually felt _terrific_ that first day I was on Provigil. My brain was totally clear and functional. And I slept great too. It was after it wore off that I crashed so much. (And taking it more than one day in a row made me very weirded out.)

    Taking Provigil that one day was my key motivator for asking my doctor to pursue antiviral treatment (I had no idea he already was having success with it). I had forgotten what it was like to be totally well, and once I remembered I really wanted to be there again. I doubt I'll ever take it again, but I'm grateful that I did for that one reason. I doubt I'd still be going at this (and---as Jolie points out---and going and going and going) if I hadn't had that experience of being "normal" that one day.


    Slammed--

    I think right now you've got to be quite an adventurous and/or obsessively determined spirit in order to pursue the path of trying to get totally well through AV's. (The FFC's seem to have some success at improving people's health with them, but that's not the same as making them well.) Things are at the extremely early stages.

    I tend to think that in another year (or even six months) we'll be starting to have a better idea of how things stand, including whether the drugs are effective as well as how to use them. Now that the ball is rolling, I think there will be a lot of progress very quickly. People have been so desperate for help for so long that to the extent that things work, the word is going to spread very quickly.

    I think you're right about most CFS patients having low temperatures. I don't know why that hasn't been the case for me. Right now I'm back to feeling reasonably okay, and it's right back to 98.5. It's only when I really stress my system that it drops, I think.

    It's very hard to limit stress in life, but I'm determined to do so as much as possible. I actually think that a lot of people pride themselves on how much stress that they can endure, and suffer negatively in a great variety of ways as a result even if they don't have CFS. Giving yourself permission not be stressed is a good first step, I think.

    Jolie--

    Thanks for your note. I'm really glad you're getting back on track.
  18. Slayadragon

    Slayadragon New Member

    Friday, January 19
    Famvir--Day 74

    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 67-74: 500 mg

    I felt weak in the morning, with a temperature lower than usual. Toward the end of the day I got back to my expected state (low energy but otherwise okay), with a normal temperature.

    After some discussion with dncgfngrs, it's become clear to me that my headache and weakness from yesterday was a detox reaction that I brought on by inadvertently doing too many things at once. These included:

    * Continuing my usual 25,000 mg of Vitamin C. (My doctor recommends taking "as much as the bowels can tolerate" for constipation and immune system strength.) The day after I first took this much, I had a big detox reaction (I suddenly felt very sleepy, went down like a log for two hours, and then drank 5 large glasses of water in about five minutes.) This was just a couple of weeks ago, and so this amount of Vitamin C probably is continuing to create mild detox on a continuous basis.

    * Doing a juice fast (with rice and UltraClear). My doctor advised occasional fasting but told me that doing too much of it would cause me to detox too quickly. He said that I'd probably only be able to do one day at a time at first. (My goal with the juice fast was not to detox but to absorb lots of nutrients without spending energy digesting them. I tried a juice fast for one day several weeks ago without major detox problems, and so thought it would be okay to do it again.)

    * Including two beets (roots and greens) in my juice. dncgfngrs told me afterwards that beets are extremely detoxifying. (I also had a very large bunch of spinach, some carrots, some granny smith apples and some parsley as juice.)

    * A cup of licorice tea. I know that dncgfngrs talked about how terrible her licorice herx was, but her mouthwatering description of the tea ("so delicious cold!") made me want to sample a cup (especially since I had purchased tea bags the day before she brought it up). I used a tea bag to brew one cup not very strong, which I figured would be okay. (She used a whole bag of cut licorice to make quarts of exceedingly strong tea, all of which she drank over a period of a few days.) Probably that amount of licorice tea would have been fine.....on another day.

    I have some uncertainty about whether I am allergic to beets, too. It's a mild allergy if so, but with concentrated beet juice it could still make a difference.

    This is a lot of detox on one day. However, I doubt it would have been a problem if I hadn't been still herxing on the Famvir. I'm getting fewer weird symptoms as a result of the drug, but my continued tiredness and occasional feverish feelings make it clear that bugs are still being killed off.

    It was a good learning experience anyway. I will do more detox on occasion in the future, but I will make an effort to do so in a much smarter way!


    [This Message was Edited on 01/20/2007]
  19. Forebearance

    Forebearance Member

    Hey, Lisa!

    I'm glad you figured out what was going on with you.

    That's a bummer that your Cheney DVD went screwy after 15 minutes. My first one did that after 30 minutes, so I had to exchange it.

    I think my older DVD player may have been a factor, also. It was made before recordable DVDs even existed. If you have any other DVD players you can try it in, that might make a difference.

    The second set I ordered (for my doctor) was fine.

    Love,
    Forebearance
  20. cherylsue

    cherylsue Member

    Jolie, I like that one. Yes, that refers to our Lisa.

    Wow, Lisa. You sure are adventuresome. Maybe, take things one at a time.

    Dr. Papernik never really went into depth. Just checked my blood sugar levels from the past 3 months with a blood test, ferritin levels, and thyroid. His way is to try all the conventional meds he can on you to see which one agrees with your body. I'm too sensitive to meds. Even to Klonopin which I've reduced to .25 mgs, but probably need to go back to .5mg. It keeps me sleepy all morning. Maybe, I should take it earlier in the evening, but that's usually when I feel the best.

    I had all kinds of tests taken previously from other doctors, so there's not much more to run. I'm seeing my local doc Tuesday, and will ask for cortisol/DHEA testing.

    I sure am fatigued. I want my life back!

    Keep up the faith, Lisa. We're behind you all the way.

    CherylSue