Famvir Status Report Week Six

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Dec 20, 2006.

  1. Slayadragon

    Slayadragon New Member

    Wednesday, December 20
    Famvir--Day 44

    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 37-44: 250 mg

    Today was the first day that I've been on the Famvir (not counting my break) that I have had no overt symptoms. I slept about 9 hours (my usual) last night, without the fragmented sleep that I've had since starting the drug. I didn't have any sleepy feelings during the day or sinus headache. No other weird symptoms either. I wasn't quite as energetic as I would hope on a good day (e.g. without the drug), but other than that there was no problem at all.

    So perhaps I've turned a corner on this first level. I will wait a few more days before committing myself to saying for sure, though.
  2. Forebearance

    Forebearance Member

    Oh, this is very cool news, Lisa! I hope you find yourself feeling fewer and fewer symptoms from the Famvir!

    It gives me hope that maybe anti-viral treatments don't have to mean feeling constant cold-like symptoms.

    Love, Forebearance
  3. cherylsue

    cherylsue Member

    Will your NK levels and viral load be tested again to see if this is really working? Maybe your doctor will run another panel in January. Then you KNOW you are on the right track and can put up with all the fluctuations with Patience. It does sound like it is working for you and Jolie. My fingers are crossed.

    Hugs,
    Cherylsue


    P.S. I've started the .5 mg klonopin, and I like it. I had next day sedation for a spell, but I think I'm getting better sleep, and it is helping with anxiety. I've had a lot of stress lately, and I don't want to relapse because of it. I was taking klonopin every other day because Dr. P only prescribed 15 pills, but I have a couple of refills. I didn't want to become addicted. I don't feel I have at this point. It seems very gentle. [This Message was Edited on 12/20/2006]
  4. Slayadragon

    Slayadragon New Member

    So glad to hear about the Klonopin! I feel quite confident you won't get addicted, if you're just using it for sleep.

    I've been using 1-2 mg per night for over six years now and show no signs whatsoever of addiction. I still sleep exactly the same as I did at the beginning without it.....I get sleep, but it's not restful sleep. I have not needed to increase the dosage in order to get the same effect. I have no desire to use it during the day. (I can't think of any other ways in which "addiction" could be measured, can you?)

    Cheney was the first person that I read who used this drug, and he said he saw no addiction either. His usual dose was 1.5 mg. What you're on is so small that the addictive quality would be even less.

    I didn't ask about the re-testing, but it certainly would be interesting to see how it came out. I would want to be on 500 mg for at least a month before trying it (or maybe 750 mg and/or several months). That's not going to be by my appointment in early January, and since it takes them three weeks to do the test, there's no reason to do a midpoint test.

    The re-test will be really educational, though.

    I'm have an appointment with Dr. Papernik in mid-January (just after I go to see my Indianapolis doctor), and will discuss the test results and my antiviral experiences with him then. Hopefully I will have some encouraging news to give him.

    Thanks to all for your good tidings!
  5. Slayadragon

    Slayadragon New Member

    Thursday, December 21
    Famvir--Day 45

    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 37-45: 250 mg

    I seem to have stabilized on this level of Famvir and am not feeling any side effects. I even am feeling less tired.

    It was a stressful day, but the Famvir didn't contribute. if anything, I may have been in a little better shape to cope with stress than I am usually. We shall see if this continues to be true.

    Eventually I will increase to 500 mg, although I'm not sure yet when the right time will be.
  6. connieaag

    connieaag New Member

    Glad to hear you are functioning again, and at a much better level than a few weeks ago. I know you said you kept the holidays low-key, but it's always nice to feel good at least on a holiday weekend!

    Kathyrn is doing good with the Diflucan at 200mg. Today is the last day and then 100 for a week. She did the spit test this morning and it was very stringy almost immediately as compared to mine that did nothing. I am happy we started the candida thing when we did.

    Still no blood results yet but at this point, I don't care about it showing yeast, we will continue treating it. The Diflucan has made a big difference already, although her stomach hurts a bit. Not sure why, but it's been since the day before she started Diflucan, so I don't think it's that. She did have elctronic acupuncture again yesterday and crystals placed in her ears to prolong the pain relief, and that has been helping yet today. I'm wondering if you can get your ears pierced at those places and then just move them around to relieve the associated pain?

    I HATE cartiledge piercings, but if it worked, I might make an exception.

    I am going to try to check-out of thinking about all of this for 2 weeks while we are in Florida. If you don't see me posting, that's GOOD NEWS! If you do, well.....

    Have a great holiday Lisa, Jolie, Cheryl, Mikie and all!

    Connie
  7. Forebearance

    Forebearance Member

    Great news, Lisa!

    Love, Forebearance
  8. Slayadragon

    Slayadragon New Member

    I am _so_ glad that the Diflucan is working so well. At least you know now that yeast is a big issue, which is tremendously important. Yeast is not a fun problem to address (the idea of abandoning sugar is slightly traumatic at any age). However, knowing for sure what is wrong (and, even better, knowing that there's a sure-fire way to fix it regardless of how hard it is) is not all that common in the war against CFS, and so this is a lot of progress.

    Fortunately, pain isn't my issue and so I don't know whether a cartilege ear piercing would be helpful. Is Kat happy about the idea? :)

    Where in Florida are you going? Have you ever heard of Amelia Island, about 30 minutes north of Jacksonville?

    Have a good break!
  9. Slayadragon

    Slayadragon New Member

    Friday, December 22
    Famvir--Day 46

    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 37-46: 250 mg

    I seem to be thoroughly stabilized on 250 mg. No herxing symptoms left.

    I don't know how I feel about raising the dosage. I had such a hard time on the higher amount before that it makes me nervous.

    My doctor said to wait 2-3 weeks on 250 mg before increasing to 500 mg, and it's only been 10 days. And waiting a bit longer does feel like a good idea.

    i worry about my adrenals. They are doing okay at the moment, I think. But I thought they were doing okay before I started the Famvir, and they certainly did flame out in a hurry.

    This is a marathon, not a sprint. When the right time comes to increase the amount, I will feel it.
  10. Mikie

    Mikie Moderator

    Famvir is a good med, better than the earlier AV's. I'm glad you are doing so well.

    Love, Mikie
  11. dahopper

    dahopper New Member

    I am SooooooooooGlad you are starting to feel better. Just in time for Christmas too ;)

    Merry Christmas to you and your family !! Take good care of yourself. Love and hugs Debbie
  12. Slayadragon

    Slayadragon New Member

    Saturday, December 23
    Famvir--Day 47

    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 37-47: 250 mg

    I spent the first part of the day feeling fine with no herxing. I even cheerfully went out to breakfast with my husband. It has been rare throughout my illness that I have been anything but a zombie until about 11 a.m. I'm not taking this as a sign that I'm doing better than I was before I started the Famvir, but I certainly seem to be doing at least moderately okay.

    I've been thinking that I'm going to wait a bit before increasing the Famvir to 500 mg (perhaps until after I see my doctor during the second week of January). This thus seems to me to be a good time to focus on my health in other ways, including by experimenting with a few new supplements.

    Since I had it readily available, I decided to start with Ambrotose. I took two capsules at around 3 p.m. Within an hour, I was extremely sleepy. I took a nap for about an hour and a half. When I woke up, I was extremely thirsty and drank a lot of water. I also had a lot of sinus congestion and sneezed several times. (Sneezing is unusual for me.)

    About an hour or two after I woke up, I felt fine (e.g. with no herx-type symptoms) again.

    I then googled "Ambrotose" and "Chronic Fatigue Syndrome" and ended up on a Q&A section written by Dr. Teitelbaum. He actually gave no info about Ambrotose (the supplement was mentioned by a questioner and ignored by him). And then I got sidetracked by another question on the page and put aside my Ambrotose searching for the time being.

    Dr. T's post that caught my attention (dated 12/20/06) said he had concluded that Valtrex was not effective for CFS. After reading it, I spent some time thinking about AV's and related issues regarding CFS, and writing a post as I went along. (I have yet to finish it and will post it when I do.)

    At any rate, my brain seems to be working perfectly fine again. After having totally lost it during the major herxing from the Famvir, it's nice to have it back.

    I will try the Ambrotose again tomorrow and see what kind of reaction I get. Mild herxing on it for a week or so is said to be common, and so it will be interesting to see if that's what happens to me.

    Happy holidays, all!
    [This Message was Edited on 12/24/2006]
  13. Slayadragon

    Slayadragon New Member

    Here are the hormones I take (or have taken). This is every hormone I have been able to find so far.

    If you have suggestions about other hormones or my hormone usage, or if you have questions, please let me know.

    1. T3 150 mcg

    I've been at this level for quite a while now. I think it's okay. My doctor thinks I should go to the absolute highest level I can without signs of excess (either subjective or on lab tests). I've tried adding a bit more (I have some 5 mcg tablets), and it seems I could go at least to 160 to 165 mcg, maybe higher. (My doc says this is a mid-range dose for T3 compared to other patients like me.)

    However, I think it's best to keep it stable if I'm going to be toying with my DHEA level, which I think I need to do.

    I didn't have symptoms of T3 deficiency when I was doing major herxing on Famvir, and so that's another reason to leave it alone for the time being.

    Anytime I've taken any T4 at all (Synthroid or Armour), I've gotten signs of excess immediately. I don't understand this effect, but it's consistent.

    2. DHEA 10 mg

    I need to figure this one out.

    My need for DHEA has decreased dramatically since when I first got sick, due to a) improving other parts of my health, b) taking special care of my adrenals, and/or c) taking adrenal extract (which I think includes some DHEA itself). I used to take 50 mg (micronized), which put me at the right level in terms of tests and subjective feelings.

    Subjectively, 10 mg feels like the right amount to me now. If I take less, I start to get what I have learned are deficiency symptoms (primarily lack of endurance with regard to any sort of stress or activity.....it's a particular sort of feeling that I don't ever get when I'm taking enough).

    However, I've started to get a little hair growth on my chin that goes away when I stop the DHEA (I tried once for a week or two). So something is off.

    It may be that I'm converting some of the DHEA into testosterone and don't have enough estrogen to cover for it, though. Over the past five years I've moved from premenopause to menopause to premenopause to wacked-out premenopause, and so my estrogen undoubtedly is all over the place.

    I'm thus going to try switching to 7-Keto DHEA (which supposedly doesn't convert to testosterone), although I'm not absolutely sure whether 10 mg of 7-Keto is the same as 10 mg of regular DHEA. Experimentation may be necessary.

    After I do that, I'm going to have my doctor test me for as many hormones as possible, including DHEA and estrogen. Hopefully that will shed light on the best way to get everything in balance again.

    After herxing on 500 mg of Famvir for a while, I suddenly realized that I was extremely DHEA deficient. "The feeling" was there and the hair on my chin disappeared. I went up to 25 mg for a little while and felt much better.

    Now I'm back down at 10 mg again.

    If I start herxing again, I'm going to try increasing this one. Getting my level tested while I'm not herxing is one reason I want to wait to increase the Famvir until after I see my doctor (when they can draw the blood).

    3. Pregenenelone ?? mg

    This is an adrenal hormone that I used to be able to tolerate a lot of. It's supposed to help cognitive functioning, and I think there's some truth in that.

    The 50 mg I took the other day was over-the-top too much for me now, though. Getting really irritable is not fun.

    I'm going to try 5 mg as soon as I can get some pills with that small amount in them. Then maybe I'll increase little by little, as tolerated.

    I think this one might be good to increase a bit while herxing too. Maybe my mind wouldn't totally fall apart then.

    4. Cortef (hydrocortisol) 0-20 mg

    My unsupplemented cortisol level (last time I had it checked) was a bit below normal. (Also high at night and low in the morning.) My doctor said he thought I would benefit from taking a little cortisol every day.

    I've always had mixed feelings about cortisol because of my belief that it suppresses the immune response.

    (BTW, Jolie, that is really weird that you had a hypertensive crisis on it. How high did your bp go? What is your bp usually?)

    I've primarily used it only on days that I knew I would be stressed.....e.g. on days when I traveled, gave speeches, had to deal with relatives, etc.

    I quickly found while herxing on Famvir that it was helpful, and took 20 mg every day after that. If adrenals are key to succeeding on AV's (which they seem to be), then cortisol seems a good idea.

    Since I've stopped herxing, I've been taking 10 mg. I think I'm going to stay on this amount "permanently" (unless something else changes), and then go up on days when stressed (including herxing stress).

    It actually makes me feel better in general, and undoubtedly takes a bit of burden off my adrenals. At least for now, any slight decrease I'm getting in terms of my immune system (which may not be happening anyway....it's probably an irrational fear) seems to be less important.

    5. Florinef (imitation aldosterone) .1 mg

    Aldosterone is made by the adrenal glands and keeps cells filled with water. When not on Florinef, my blood pressure on occasion has dropped to 85/55. This is far too low and makes me reluctant to get out of bed ever.

    My doctor thinks 110/70 (or a bit higher) is optimal for me. Now that my adrenals are a bit better, I generally can get to this level on .1 mg of Florinef.

    I also salt my food pretty heavily, which increases blood pressure a bit too.

    6. Progesterone (Prometrium) 200 mg

    Prometrium is bioidentical progesterone made by a pharmaceutical company. I have been taking it 2-3 weeks of the month for about 10 years.

    I had extremely bad PMS (emotional) before I started it. It was a miracle pill with regard to that.

    The PMS problem is lower now, but I need it if I'm going to use estrogen.

    Supposedly natural progesterone builds bones. And indeed, even though I have a family history of osteoporosis and have been doing this menopause thing for five years now, my bones are in great shape.

    I have yet to see any evidence that bioidentical hormones (used correctly) do anything bad to the body, and so intend to use them as long as they make me feel better. I need every bit of help I can get, and hormones have been one of things that have helped me the very most.

    I really like this hormone and think the dose is right for me.

    7. Estrodiol (Vivelle Patch) .5 mg

    Vivelle is bioidentical rather than made from horse pee, which is good. I think it's time for a change though.

    A doctor specializing in bioidentical hormones put me on these patches years and years ago when I first had premenopausal symptoms. I had tried the cream (with estrodiol, estriol and estrone), and the patches seemed to work equally well.

    Now my estrogen seems to be bouncing all over the place, though. Sometimes the patch doesn't seem to be necessary at all (e.g. I can forget to change it for a long time and notice no symptoms). Others I get hot flashes and other symptoms even though I just put it on a day earlier. (It's supposed to be changed every three days.)

    So substituting a cream or sublingual that I can use in the amount that seems needed might be better. (Having too little estrogen even some of the time could cause symptoms of testosterone dominance, like the hair growth, I think.)

    Some people believe that using all three types of estrogen is better too, although the bioidentical hormone doctor did not seem to think it mattered.


    8. Testosterone ?????

    I used to do well on 2 mg of bioidentical testosterone in pill form, plus a vaginal testosterone cream.

    I've not taken the pill form for a while now. Again, though, I don't know if I'm getting that hair growth because the DHEA is converting to testosterone or because there's not enough estrogen. (Estrogen needs to be at a high level compared to testosterone; if not, it can seem like testosterone is too high even if it's actually at a very low level.)

    Conceivably if I adjust the estrogen and switch to 7-Keto, I might benefit from some oral testosterone again.

    Then again, my adrenals might be strong enough that they're making enough testosterone on their own. It will be good to get this one checked too.

    I do still use the vaginal cream. The kind I have is quite strong--100 mg per gram. Just a touch is used on the clitoris a few times a week (after a couple of weeks of daily use) to increase sexual desire and response.

    I have found this to be beneficial, and so at least in that respect my natural testosterone seems below ideal.

    9. Oxytocin 10 units

    This one is just yummy. I've not seen it mentioned on this board yet, which is kind of a shame because CFS patients are often low in it and it's been great for me.

    As you know, oxytocin is released in great quantities during childbirth (apparently to allow birthing moms to stand the pain) and orgasm. It creates a happy glowing feeling.

    If you're low on it (as many CFS patients are), the skin tends to be pale and the mood lackluster.

    The first day I tried this, I didn't expect it to do anything right away. I just took it along with my other morning stuff. A couple of hours later, I found myself feeling peculiarly happy for no reason at all. It took me a couple more tries (on and off) to convince myself that the effect was real.

    A way to know if there's excess is if the nipples become erect on a more or less constant basis. This has not been a problem for me except when I doubled the dosage for a while.

    10. HGH

    My doctor found that my levels of this were low, and my insurance company paid for a huge amount of it for me.

    Unfortunately, I found that even a tiny touch made me totally exhausted. Cheney reported finding the same thing when he used it with his patients.

    I believe the effect occurs because it channels all available energy into repair. This is a nice idea, if you have energy to spare for repair.

    I still have a whole bunch of it in my refrigerator.

    The one time I found it useful was when I very badly sprained my ankle. Two weeks passed and healing was minimal.

    I decided to try the HGH to see what would happen. Within two days, my foot had almost totally healed.

    I'd definitely use it again for this purpose.

    And if I got well enough (e.g. after taking the AV), I might use it at least a bit on a regular, since healing is important. Right now it's just sitting there taking up a whole half shelf in my refrigerator, though.

    11. Melatonin 2.5 mg

    Before I used Klonopin, I tried this and didn't find it that helpful with regard to sleep. I then sort of forgot about it. In recent years, I've only used it when traveling to overcome jet lag.

    After my sleep cycle got messed up on the Famvir though, I decided to try it every night. It helped a lot.

    When I stopped herxing, I stopped taking it. I found that I missed it though. Last night I tried taking some again and think it made me feel better in the morning. So I think I'm going to stay with it for a while and see if it makes me feel better in general.

    12. Coenzyme Q10 (400 mg) and NADH (100 mg sublingual)

    I know these aren't really hormones, but they feel an awfully lot like hormones to me.

    They're supposed to be made in the body, but (as with hormones) my body seems to be terribly deficient at making them.

    NADH supplementation (at 20 mg) brought back within a month my period (after a 3-year hiatus). My period continued regularly for two years after that. (Now it's getting irregular again, but I think that's due to just getting older. Menopause at 38 was a little weird though.) If a hormone had done that (which none of them did), I'd have been really impressed.

    Both of these give me noticeable increases in feelings of well-being.

    13. Digestive enzymes and Betaine Hcl Acid

    Obviously these aren't hormones either. I include them here because they're other examples of stuff that my body is supposed to make but doesn't bother with.

    I don't know if it's that my body is just not wasting its energy making things or if there's something else going on (like maybe a virus attacking the sites where stuff is supposed to be made).

    It seems to me that these may be part of an overall pattern, though.

    14. Mesenchyme

    I just thought of this one. For a while I was using an injectable form of it and felt better on it. After I stopped being able to do injectables, I kind of forgot about it.

    Perhaps I will ask my doctor if there is an oral form I can try. Hormones of all types seem to help me so much that it seems worth a try.

    15. Adrenal Glandulars

    I forgot about this one. Obviously there are lots of homones in it. I'm currently using (on my doctor's advice) three different kinds. That could explain why my need for DHEA has gone down so much, except that I was only taking one of them (and at a low dosage) before starting on the Famvir.

    **

    So, in general, I really need to get my hormones straightened out. If I schedule a whole hour with my doctor in January, hopefully we can do that.

    If anyone knows of a hormone (or even vaguely hormone-like substance.....e.g. something that the body's supposed to make on its own), please mention it. Thus far I'm scoring 100% in terms of need for supplementation of such substances, and so always am looking for new ones.
    [This Message was Edited on 01/04/2007]
  14. Slayadragon

    Slayadragon New Member

    Sunday, December 24
    Famvir--Day 48

    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 37-48: 250 mg

    I woke up early today and decided to take two capsules of Ambrotose and go back to sleep. I had vivid and unhappy dreams. I woke up three hours later and then spent most of the rest of the day (about six more hours) feeling sleepy and congested and fuzzy-headed. Then I woke up and felt okay (except with a little congestion).

    This Ambrotose definitely gives me a herx. I think this is from the immune system activation (it's supposed to increase NK Cell activation), although it may also be clearing out toxins.

    Considering that the instruction on the bottle says to take two capsules twice daily (and I've just taken them once daily), this seems to me to be pretty strong stuff. And I firmly believe that I wouldn't be getting this kind of response if it weren't doing something good for me.

    How long the herx would continue if I kept taking it, I don't know. I tend to think that it will be beneficial to me at some point (especially since at wholesale prices from Pure Encapsulations it's pretty cheap).

    I'm not sure if it would be better to experimenting with going up on the Famvir or to continue on the Ambrotose during the next week or so. I'm going to have to ponder more.

    Apparently doing nothing and just enjoying the rest of my vacation is not an option. I have decided to do my best to get as wholly better as I can within a year, and now have this overwhelming drive not to waste any time getting there.

    I guess this makes me sort of a cliche. I never would have finished my Ph.D. (or did all the other stuff that I did before and immediately after I got sick) if I hadn't had a huge level of determination. Apparently it's still there, even though I consciously think of myself as having the main goal simply of enjoying life at this point. (Not that the two are mutually exclusive, I guess.)


  15. Slayadragon

    Slayadragon New Member

    Monday, December 25
    Famvir--Day 49

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28-29: 250 mg
    Day 30-36: No drug
    Day 37-49: 250 mg

    No Ambrotose today. It definitely is doing something, but I'd like to know more about the experiences that other people with CFS have had on it before proceeding. My doctor should know, if nothing else. (I have an _awfully_ lot of things to discuss with him now. Fortunately we buzz through things at a fast clip, and so if I'm really prepared I should be able to learn a lot even in an hour.)

    I felt a bit more toxic today than usual. Just a kind of heavy feeling I associate with my liver not being up to par. I tend to think it's from the Ambrotose, but I don't know if it's because of the stuff's detoxification action or its immune stimulating action.

    In any case, I'm taking extra ImmunoPro Rx to compensate. I'm also considering a lymphatic massage. Does that seem to anyone to be appropriate for this situation?

    Overall, I now feel pretty much the same as I did before starting the Famvir. This is a bit weird, since I herxed so much even at this level that I would think it would have done _something_.

    However, I read something the other day that made me think that maybe my progress can't be measured totally on how much energy I have. It seems to me reasonable that as the body gains additional resources, it has levels of priority with regard to how they are used. For instance, maybe it's the case that the priority level is:

    1) Maintaining vital functions to stay alive in the short run

    2) Providing sufficient energy to accomplish a few things (e.g., if this were primitive times, gather at least a little food to eat and to run away from predators)

    3) Support internal functions (e.g. seek out and eliminate cancer-causing pathogens, do basic repair work)

    4) Provide extra energy so that near-normal functioning is achieved

    If so, it's conceivable that the Famvir has lived me from stage 2 to stage 3, and that the drug is helping me even if I don't know it. It's a nice thought, anyway.

    If this is the case, hopefully as I do other things to help my health (including increasing the drug dosage and staying on it longer), I eventually will move from stage 3 to stage 4.

    The thought that the drug might be helping me even if it isn't externally obvioius is an interesting one. It certainly is consistent with my strong belief that herxing means that something good is happening. There's no way in hell that I could have killed off as much stuff as I obviously did without some improvement having happened in my body.

    I guess this would explain the legendary stories of people who stay on AV's for months and months and months without any noticeable improvement and then suddenly have substantial improvements. Again, I tend to think that if I've herxed on a drug, it's done something for me and worth sticking with for a while. How could it possibly be otherwise?
  16. Slayadragon

    Slayadragon New Member

    Tuesday, December 26
    Famvir--Day 50

    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

    Fifty days is a long time! Hopefully I'm making progress in some way.

    I took two capsules of Ambrotose last night and didn't notice any negative effects. This morning I decided to try two more. (The recommended dose is two capsules, twice daily.)

    About five hours later, I became sleepy (fell into an unexpected hour-long nap). After that, I remained tired and got a lot of loose sinus congestion. I'm not used to blowing my nose like this!

    Except for the apparent reactions that I'm having to the Ambrotose, I feel about the same as I did before the Famvir.

    I did notice when I was walking earlier in the day that I got worn out more easily than usual, which I'm attributing to muscle loss. Hopefully I can improve on this sometime in the near future, if I can ever get my viral load down to the point where I'm not herxing all the time.

    I wish I knew more about the stuff that's in the Ambrotose. Some say it's a souped-up form of echinacea. If so, I wonder if it should be pulsed as echinacea (and olive leaf extract) is often pulsed.

    This thought makes me wonder why echinacea and olive leaf extract should be pulsed, though. I can understand why things that kill viruses (or yeast or whatever) should be at least rotated, since different strains of bugs resistant to whatever's being used can appear.

    But why would it be that things that stimulate the immune system need to be pulsed? Why does olive leaf extract "stop working" after a while? (For those who it does work for.....I personally have never noticed an effect on it, or at least not yet.)

    Perhaps no one knows, just as no one knows why (as my psychopharmacologist puts it) certain drugs like the SSRI's "poop out" after a while. It's a potentially important question in terms of deciding how to use immune-stimulating substances, though.

    I have to remember to ask my doctor if he has a theory about this, and also whether to pulse the Ambrotose.

    BTW, I've watched a lot of movies over the past six weeks. Upon looking over my recent Netflix history, I've realized that I remember very little about any of them. I certainly understood the movies at the time, but apparently the information never made it into my long-term memory bank. I can remember most of the movies I saw five years ago much better than I can any of the ones I saw a couple of weeks ago.

    This is disconcerting. The Famvir has been quite a ride.

    One good thing about these status reports is that I have been writing down my experiences and the questions I have. I am going to read over them before I see the doctor. Usually my memory for such things is extremely good, but I suddenly realized that I can't trust it for this recent time period.

    I think I need to learn more about AIDS patients. Surely those who got really sick and then fought their way back had some of the same issues that I do. I've heard that they have quite a struggle on the way back, but I'm not sure what it entails.
  17. Forebearance

    Forebearance Member

    Hi, Lisa!

    From your hormone dosages, it sounds like you are perhaps a bit less sensitive to hormone supplements than the average person with CFS. I know many people who take between 1-5 mg of Cortef. I thought that was kind of a standard range for CFS patients. But it doesn't matter, of course, as long as you get what you need.

    I see what you mean about the facial hair issue. Man, it's so tricky to balance all of the adrenal hormones and estrogen. I found that the Cortef was a lot stronger than the DHEA in terms of producing the effects of adrenal hormone overdose.

    You probably know this, but after oily skin, acne, and facial hair, if the adrenal hormones aren't decreased, the next set of side effects are worse and not necessarily reversible. They include a deeper voice and protruding eyebrow ridges. (A relative of mine who has RA looks like a Neanderthal now from taking so many steroids. Fun.)

    One other thing... it may not happen to you, but I have heard women say that applying testosterone cream directly to the clitoris can, over time, numb it. I don't know, but I thought I'd pass that on so you can have all the info available.

    Have you ever read any of Dr. John Lee's great books on estrogen replacement? If I remember correctly, the bioidentical estriol doesn't increase the risk of breast cancer, like the other two estrogens can. Maybe the progesterone would counteract that risk, though.

    Ha! I have to laugh about your HGH. I have a bunch of HGH secretagogue in my freezer. You wouldn't believe how much I had to dilute that stuff. It made me feel better, but made my nerve pain worse. I finally quit it in frustration.

    The oxytocin sounds really interesting!

    It's great to hear about your hormone list. Thanks for sharing. You're a great example for the rest of us. I hope you get some good ideas from talking to your doctor.

    I'm glad to hear that the Ambrotose is doing something for you! Cool! Hmmm, vivid and unhappy dreams can be a sign of too much seretonin. Could Ambrotose cause that???

    I agree with what you're thinking that surely your Herxing must be accomplishing something. At least, I hope so! Geez!

    I do something that could possibly be helpful to you. Before an appointment, I write my doctor a letter containing all my developments and questions and basically everything I want to discuss. I keep it succinct. That gives her time to think about the questions. Then at the appointment, we whip through the topics, and I don't forget any of them. AND, my actual thoughts become part of my medical file.

    After I've seen how many errors happen in the process of a doctor listening to me, and then the doctor's notes being transcribed, I don't trust other people to get it right!

    Hey, Jolie! I'm sorry to hear about your crash!

    Love, Forebearance
    [This Message was Edited on 12/27/2006]
  18. Slayadragon

    Slayadragon New Member

    It's really surprising to me how much better my adrenals seem to have gotten since I've been sick. It's been quite gradual.

    Dr. Golan (the writer of "Optimal Wellness") says in his chapter on adrenal health that if you use DHEA and cortisol to support the adrenals, eventually they will get stronger and be able to work on their own. I've certainly done that. Continuing to use cortisol and DHEA when I'm under stress of whatever sort (including Famvir stress) seems to help a lot.

    I also think that not letting things get to me emotionally is very helpful. Between the Lamictal, various supplements, and keeping a balanced outlook on life, I'm reasonably mellow most of the time. I crash very hard from too much emotional stress, and so try to avoid it at all costs. Dr. Golan says that's key to keeping the adrenals in shape too.

    I've been experimenting over the past 5-6 days with taking no DHEA or cortisol at all, and am feeling okay thus far. Perhaps I don't need it right now (except as protection for acute stress or the Famvir reaction/herx). I think I'm going to see if I can hold this level until I see the doctor in about 10 days and then get a blood draw with no cortisol or DHEA at all. That probably would be better than having it be while I'm taking the supplement anyway, just to get a gauge of just how well I'm doing.

    I've been using that testosterone cream for 10 years, and no numbness yet. I like that cream. At least that's one part of my life that's been functioning consistently the way it's supposed to.....until I got this stubborn yeast infection, of course. I think it's almost gone now though. It's about time.

    Everything that I've read and heard suggests that estriol is a "protective" estrogen while estrone and estrodiol are more "aggressive" estrogens. However, estriol also is a weak estrogen and so you'd need to use huge amounts of it to get anywhere. (My hormone doctor gave me some prescription-strength estriol to try when I first started having symptoms, but it didn't do anything. She was unsurprised.) Supposedly the estrogens switch back and forth pretty easily, but perhaps the tri-est cream (with all three) still would be better.

    I've not read anything suggesting that bioidentical estrogen causes cancer though. Have you? I'm not even sure it was the horse pee estrogen in the Prempro (isn't that the name of that drug) that caused the breast cancer increase.....things I've read suggest that it might well have been the progestin (artificial progesterone) instead. And I've never heard even the tiniest suggestion that natural progesterone has that kind of side effect.

    That Prempro effect apparently is for real though. Supposedly breast cancer rates this past year were _way_ down, and the only hypothesis for this is that lots of women stopped taking Prempro.

    Considering that natural progesterone builds bone and natural estrogen prevents bone loss (and that my grandmother's osteoporosis was horrendous), I'm inclined to stay with that route. If anyone ever provides me with data (or a convincing theory) regarding their effect on breast cancer, maybe I'll reconsider.

    I used a secretagogue once, before I got the real hgh. Vespro, I think? It wasn't frozen though. Just tablets, sort of like alka seltzer. They gave me huge headaches and so I had to abandon. Wish I could find someone who would like them.....it cost like $100 for the box.

    Usually I don't dream at all (or don't remember doing so). Recently I have woken up remembering my dreams, and I think that's from taking melatonin. Dr. Uzzi Reiss (author of "Natural Hormone Balance for Women") says that vivid pleasant dreams are okay, but that vivid unpleasant dreams are a sign of too much melatonin. I just had the one vivid unpleasant dream; the others have been somewhat vivid and neutral to pleasant. Perhaps I will take half of the meltaonin tablet (2.5 mg....I bet Sahelian would think that's too high too) and see what happens.

    If Jolie's doctor is right, she hasn't been herxing at all....and, since my symptoms are similar to hers, I haven't either. I do not believe it, but will find out what my own doctor says in about a week and a half.

    I certainly will make a list of questions to ask the doctor. And probably we should be more systematic about my medical file too. There's nine years worth of material in there, and it fills two large binders. Obviously he's not looking through it, and I haven't asked to do so either.

    Getting some of those old tests (e.g. food allergies, hormones) should help, anyway. I've been convinced for the past five years ago that I was going to be stuck at this same level forever, and so have gotten kind of complacent. But since my new goal is to get substantially better, I'm motivated to do everything I can to get there.

    Thanks!
  19. Slayadragon

    Slayadragon New Member

    Wednesday, December 27
    Famvir--Day 51

    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: 500 mg

    I took four capsules of Ambrotose again--two at night and two in the morning. I don't notice what happens after taking them at night, but they don't seem to be interfering with my sleep.

    The pattern after taking them in the morning or early afternoon is very consistent: four hours to kick in, so sleepy I need to take a nap for an hour or two, another couple of hours of sleepy fatigue, and then I feel fine again. (No real congestion today though.)

    I don't know what this means. Is it that they activate the NK Cells for a couple of hours and then die out? And if so, is that relatively small percentage of the time going to be that helpful?

    I feel pretty much wholly ready to go up on the Famvir, but am hesitant since I'm going to be traveling in a few days and then fairly busy (including a trip to Indianapolis to see the doctor) for a couple of weeks after that.

    Hmm. Maybe I'll try an extra 250 mg of Famvir tonight (with no Ambrotose) just to see what happens. I'd like to be able to give the doctor a report on where I'm at when I see him, and this seems as good a chance as any I'm going to have before that to experiment. Briefly experiment, anyway.
  20. Forebearance

    Forebearance Member

    Hey, Lisa,

    Are you talking to me about some of that hormone stuff?

    Knowing you, I can see why estriol wouldn't be strong enough to do anything. I, on the other hand, found that the compounding pharmacy couldn't make it weak enough. Estrogen overdose is a bitch! lol

    According to Dr. Lee, who I trust, what increases breast cancer risk is when you have too much estrogen compared to progesterone. Any kind of estrogen. Although I'm sure the Prempro (horse pee) is a thousand times worse for a human body than the bioidentical stuff. So he says that natural progesterone is protective against breast cancer, because it balances the estrogen. Does that make sense?

    Hey, osteoporosis runs in my family, too! I always thought that might be why I need boatloads of calcium.

    I know! That Vespro stuff is expensive. I got similar stuff, but my friendly health food store owner let me buy just one envelope instead of the whole box. I dissolved it, diluted it to death, and then froze some of it in ice-cube form to use later.

    Oh, melatonin causes dreams! I don't know anything about it. I haven't looked into it because I sleep well.

    Wow, Jolie's doctor says she hasn't been Herxing at all? Did he call it an immune response, at least? I had better go read her thread.

    Love, Forebearance