Famvir Status Report Week Nineteen

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Mar 23, 2007.

  1. Slayadragon

    Slayadragon New Member

    Friday, March 23
    Famvir--Day 137

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28-29: 250 mg
    Day 30-36: No drug
    Day 37-50: 250 mg
    Day 51-57: 500 mg
    Day 58-63: 250 mg
    Day 64-65: 500 mg
    Day 66: 250 mg
    Day 67-87: 500 mg
    Day 88-98: 250 mg
    Day 99-130: 500 mg
    Day 131-32: 250 mg
    Day 133-136: No drug

    I used half of one of those little syringes of Human Growth Hormone last night. The total I injected was .1 mg.

    As expected based on my previous experiences, I felt drowsy and very lethargic all day. It seemed like a healing kind of tired though. I had a good nap.

    The effect didn't seem to kick in until about 12 hours after I injected the HGH though. I am going to try it earlier in the day next time.

    I am continuing to take a break from the Famvir. My goal is to use the HGH to strengthen my system, then to try a higher dose of Famvir than I've used in the past. (The goal is 1,000 mg of Famvir per day at least some of the time.)

    I am going for a follow-up visit to the TCM (Traditional Chinese Medicine) doctor on Monday. Hopefully that will help to strengthen my system as well.

    I didn't use anything connected with glutathione (except ImmunoPro Rx undenatured whey protein) today. I am planning to try nebulized glutathione in the near future, however.


    *

    I'm now adding my usual request. Many many thanks to everyone for humoring me these past several weeks and thus making these threads a supportive and pleasant place for me to visit!


    I am continuing to post these status reports for informational purposes and group dialogue.

    However, I would like to request that those reading it refrain from expressing worries about my well-being or exhortations that I do whatever in order to prevent some particular horrible event from happening.

    In addition, I would strongly prefer that criticisms of the kinds of treatments I am pursuing not be expressed on this thread. Positive comments that will help me and my doctor to refine my treatment plan are welcome.

    Finally, I hope everyone will refrain from being critical of my asking for the omission of the kinds of comments described above.

    Thanks very much for your kindness in respecting my needs regarding this matter.

    [This Message was Edited on 03/25/2007]
  2. ask2266

    ask2266 Member

    I'm taking 1000mg of Famvir, 2x per day, and it seems like it is going great! As of 2 weeks ago, I was feeling wonderful. But then... unrelated to famvir, I think...

    I started having super-crazy candida die-off due to recently starting on Threelac and digestive enzymes 8 days ago. Lots of bloating and fatigue. Just gross feeling.

    Lisa, did the colonic really work for you? Because I feel extremely toxic right now. I read that formaldahyde is a biproduct of dead yeast, and I feel like I can smell it! help!
  3. Slayadragon

    Slayadragon New Member

    There's a psychological barrier to get over with this, I know. I found it to be an amazingly great total solution for my yeast die-off symptoms though.

    Best, Lisa

    [This Message was Edited on 03/23/2007]
  4. cherylsue

    cherylsue Member

    I haven't been as active on the measage board as previously and only follow a couple of posts. My participation will probably be even less as I return to work parttime in April. This is going to take all the energy that I can muster. I'm nuts, I know, and my family is not too keen.

    Why? Because I don't like being home and thinking about family problems, etc. which are getting dumped into my lap. I met with my principal this week, and I can't tell you how good it felt to walk down those corridors. I really want normality in my life. It is with much trepidation that I venture forth, but psychologically I'm ready, if not physically.

    I have good days and bad days still. Ongoing sleep problems are a nuisance.

    God help me and us all.

    CherylSue
  5. Slayadragon

    Slayadragon New Member

    You've made a good deal of progress recently, and so hopefully that will be sufficient to keep you going through the rest of the school year. It certainly is frustrating to be sick for a long time and not able to do anything.

    I can understand why you would back off the board....it does suck up a whole lot of time. I know I will do the same thing, once my own health increases to a functional level (or I give up and go back to where i was before).

    Do keep us informed of your progress though, please. I'd like to know how the treatments you're trying are working.

    Maybe you should start a new thread? The Nexavir one is a wealth of information, but it's now more about the topic in general rather than your own experiences.

    Good luck!!!!

    Best, Lisa

  6. Slayadragon

    Slayadragon New Member

    Saturday, March 24
    Famvir--Day 138

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28-29: 250 mg
    Day 30-36: No drug
    Day 37-50: 250 mg
    Day 51-57: 500 mg
    Day 58-63: 250 mg
    Day 64-65: 500 mg
    Day 66: 250 mg
    Day 67-87: 500 mg
    Day 88-98: 250 mg
    Day 99-130: 500 mg
    Day 131-32: 250 mg
    Day 133-137: No drug
    Day 138: 500 mg

    I slept really well last night and am feeling stronger.

    I'm not sure whether to attribute that to the hGH or to getting over the aftereffects of the neural therapy from last week, though.

    I don't think my doctor expected the neural therapy to have quite that much of an effect on me this time. The effect was really potent. Considering that I'm supposed to be focusing my energy on killing viruses, perhaps I should put aside that (as well as other adjunct treatments) until I've gotten a lot closer to achieving the primary goal.

    I was quite sleepy all day, but it felt like it was in a healing way.

    I used a bit more HGH this morning. This may be pushing the limits, but my experience with HGH is that the tiredness wears off very quickly once I stop taking it.

    My hope is to be in pretty good shape by early this week, so that I can try tolerating a high dose (maybe even 1,000 mg) of the Famvir. I am going to play it by ear and see what my intuition says though.

    It's a little disconcerting to have this many variables affecting my health right now, but hopefully I can get the effects sorted out pretty quickly.

    As a side note, my friend with the super-frequent colds/flus has successfully fought off a couple since starting on the 4Life Advanced Transfer Factor (an undifferentiated one). That one does not seem to be having any sort of negative effect on me, and so I am going to continue taking it for the time being too.


    Addendum: I was feeling good enough at the end of the day that I took 500 mg of Famvir. We shall see what happens.[This Message was Edited on 03/25/2007]
  7. Forebearance

    Forebearance Member

    I'll be thinking of you, CherylSue!

    I'm glad you slept well, Lisa!

    love,
    Forebearance
  8. cherylsue

    cherylsue Member

    Lisa: Of course, I'll be following your progress as well as a few others on this board. I need to know that my message board friends are getting well, too. We are certainly in this together.

    Forbearance: How are you doing these days? I know you backed off the Nexavir. Are you doing the methyl protocol?
    Best of luck to you, too.

    Hugs,
    CherylSue
  9. Slayadragon

    Slayadragon New Member

    Sunday, March 25
    Famvir--Day 139

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28-29: 250 mg
    Day 30-36: No drug
    Day 37-50: 250 mg
    Day 51-57: 500 mg
    Day 58-63: 250 mg
    Day 64-65: 500 mg
    Day 66: 250 mg
    Day 67-87: 500 mg
    Day 88-98: 250 mg
    Day 99-130: 500 mg
    Day 131-32: 250 mg
    Day 133-137: No drug
    Day 138: 500 mg
    Day 139: 750 mg

    I am back to feeling pretty much exactly as I did before I started the Famvir. It has been a long and tortuous journey to get to what seems the same place, but hopefully I have made some sort of internal progress along the way. It seems to me that people who have been getting better from CFS (in whatever ways) do so all of a sudden after a long period of frustrated waiting, and so perhaps that could happen to me too.

    I have restarted the drug, tentatively at 750 mg. Hopefully I can stay at that level without any significant loss in functioning, then increase it to 1,000 mg within a short period of time. If I start feeling bad at a particular time, I will reduce the amount and try to get my system a little stronger before moving back up (so that I don't collapse again).

    Thus far, I don't seem to be feeling any effects from the Famvir.

    The optimistic part of me says that my body is functioning well now and thus can handle some viral killing without getting too wiped out.

    The pessimistic part of me says that all the viruses I have are now resistant to Famvir, and that the reason I feel okay is because the drug is no longer doing anything.

    Probably the answer is somewhere in between, although hopefully closer to the first possibility than the second.

    It also could just be that although I have gotten die-off symptoms from this drug fast, a day isn't quite enough time for it to have exerted a noticeable effect.

    It's hard to know how much of a positive effect the HGH had on me, but I think it may have been helpful. I will continue to experiment with it in the future in the hope of supporting my system.

    [This Message was Edited on 03/25/2007]
  10. cherylsue

    cherylsue Member

    I'm keeping my fingers crossed for you!

    Good luck!

    CherylSue
  11. jole

    jole Member

    To say I am in awe of you ladies!! You are very intelligent and strong, and I wish you all the best.... So much of this is 'way over my head since I can't seem to concentrate or remember much these days, but I DO know you are really working at being well. I admire you so much! Wishing you the very best!
  12. Forebearance

    Forebearance Member

    Thanks, Jole!

    I'm crossing my fingers for you, too, Lisa.

    Yes, I'm beginning the methyl protocol, CherylSue, and it's agreeing with me so far.

    Love,
    Forebearance
  13. ask2266

    ask2266 Member

    Lisa-

    I am following your advice in regards to my yeast problems. I'm almost positive that the feelings that I am having are related to the dead yeast and not to virus die-off from Famvir. I already went through the Famvir die-off weeks ago, and it felt different. So I have an "appointment" scheduled for Wednesday. :) I hope it doesn't hurt! --Ashley
  14. Slayadragon

    Slayadragon New Member

    Thanks so much for the nice note.

    I will have to say that trying to get well from this disease is the most challenging thing that I've ever done in my life, both in terms of deciding what to do and then doing it.

    However, getting well would make it all worthwhile. Plus hopefully my experiences might help other people get well too, which would make me very happy.

    And if it doesn't work.....well, at least I will have tried. It certainly isn't an easy thing to do, though.

    Upon reflection, I was starting to get a little discouraged today, but your post made me feel a good bit better. Again, thank you so much for it!!

    Best, Lisa

  15. Slayadragon

    Slayadragon New Member

    Let me know how that colonic goes, please.

    Best, Lisa

  16. Slayadragon

    Slayadragon New Member

    I don't know what to say about your going back to work. That's a really tough decision. It's so frustrating to really really want to do things and have them be really hard.

    When is your start date supposed to be?

    Also, I haven't asked you about your daughter for quite a while. How is she doing? Does she seem to be becoming any more grown up yet?

    Best, Lisa

  17. Slayadragon

    Slayadragon New Member

    I looked at the post where you listed the supplements you're taking, and I think you listed 15 grams of the Corvalen.

    What is the recommended dose from the manufacturer?

    The Pure Encapsulations ribose package recommends 2.5 to 5 mg per day. 15 mg seems like it would be a lot, therefore.

    What do you think?

    Best, Lisa
  18. Slayadragon

    Slayadragon New Member

    Monday, March 26
    Famvir--Day 140

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28-29: 250 mg
    Day 30-36: No drug
    Day 37-50: 250 mg
    Day 51-57: 500 mg
    Day 58-63: 250 mg
    Day 64-65: 500 mg
    Day 66: 250 mg
    Day 67-87: 500 mg
    Day 88-98: 250 mg
    Day 99-130: 500 mg
    Day 131-32: 250 mg
    Day 133-137: No drug
    Day 138: 500 mg
    Day 139-140: 750 mg

    A very busy day, including the following:

    * Straightening the house a good deal (and quickly) in anticipation of the cleaning people arriving
    * Spending some time listening to a friend's problems
    * Driving with my husband to Chinatown (and having to deal with road construction delays and a closed exit off the expressway)
    * Meeting with the Chinese doctor about my and my husband's issues
    * Working to make sure that both he and I got the right supplements (a huge variety) from the people at the doctor's office
    * Walking around Chinatown
    * Eating dinner at a good Chinese restaurant
    * Buying some groceries to take home at the Chinese supermarket and meat market
    * Driving back home
    * Discussing with my husband how to use the Chinese medicines
    * Spending too much time on the CFS board
    * Reading part of a reasonably hard book

    In terms of usual scale gauging CFS patient functioning, this is way over 100%. It is hardly more than I did on a typical day "before", but more than I've been able to do easily on anything but very rare occasions since getting sick.

    Moreover, I did not push myself at all. Doing this much stuff without pushing has been even more rare during my illness.

    Perhaps I will crash anyway. We shall see.

    Although my energy is up, other symptoms are not resolved. Sleep is still a big problem, more so over the past couple days than they have been for a week or two. My cognitive capacities do not feel improved (although they certainly are better than they have been at certain times during my treatment over the past five months). Although I generally was in an extremely good mood, I did get irritated with regard to a particular issue. That was bad, since I would prefer never to become irritated about anything.

    Following is a summary of where I am at with the various treatments that I am pursuing.

    1. I seem to be tolerating the increased Famvir pretty well. My best guess is that my body is stronger and thus able to handle the stress of the drug. My viral load may be decreasing too, thus decreasing the burden on my immune system. (While it is possible that I have developed resistant viruses to the drug, I do not think this is the main reason. Or at least, I hope that it is not.)

    I do believe that the Famvir is, as usual, ruining my sleep and causing my usual pretty strong emotional resilience to weaken some. Still, I am happy with my progress and optimistic that I will successfully be able to increase the drug to what my doctor said that he considers a "full dose" (1000 mg) in the near future.

    2) I believe the HGH was instrumental in allowing my body to regain its strength. Although I did not find it useful in the past, I intuitively feel very good about using it now. Perhaps I just am desperately in need of systems repair, or maybe I am just stronger than I was a few years ago (especially in terms of adrenal function) and thus able to tolerate it.

    In any case, I have used a small amount (I think approximately 1/4 iu per day, although I'm not absolutely sure of the conversion between mg's---which is how my brand is labeled---and iu's.) I will continue to use this in the future when it feels appropriate.

    3) After seeing the TCM doctor yesterday, I am more impressed with him than ever.

    I believe that the herbs I have been taking have been useful in allowing me to better tolerate the Famvir over the past two months. I realized in talking with the doctor that some of the symptoms we discussed at our last meeting (not all of which seem related to the Famvir) have improved significantly too.

    My husband (who spoke to the doctor mostly in Chinese) was quite impressed with him as well and optimistic about the possibility of getting better with his treatment. The doctor changed some of my herbs and gave my husband several as well (telling him that if he should expect significant improvement in two weeks).

    Shortly after using some of the tea and other herbs last night, my husband claimed that something inside him changed dramatically and that he felt better than he had in a very long time. (He looked and acted much better too.) He had been taking a very small amount of Prozac and Buspar, and decided that he felt comfortable skipping them. (The prescribing doctor had told him in the past that with this small amount, discontinuing the drugs if he felt okay about doing so was fine.) He went to bed early, which I haven't seen him do for a while due to his usual insomnia.

    I am very happy about that, since I want him to feel good and also since it would be problematic if we both had totally dysfunctional health at the same time. The doctor admitted that my own problems were much more complex than my husband's, but stated that we would address them systematically and that I should continue to improve over time. I believe him.....which is not to say that I am not going to continue with Western medicine as well.

    4) I have been thinking about the fact that many people seem to think that synergy in the Myhill program is much more effective than taking the supplements individually.

    This makes me think that I should give the use of all of the supplements a try. I already am taking the most expensive ones (large doses of NADH and Coenzyme Q10) as well as magnesium, and so not even trying the others seems to be sort of silly.

    I thus ordered some acetyl-l-carnitine, which I plan to try at some point after it arrives in the mail.

    I already have on hand some d-Ribose (Pure Encapsulations brand) and have been using it for the past two days. The dose has been 2.5 grams, twice a day. (The package recommends 2.5 grams, 1-2 times per day.)

    I do not know if the d-ribose has had a good effect on me (energy) or a bad effect (sleeplessness and/or mood.) Maybe it has had neither.

    I thus am going to try omitting it for a few days and see what happens.

    Provided that these supplements are not too much for me to tolerate in themselves, I don't have the feeling that they will cause me to tolerate the Famvir more poorly. They might even allow me to tolerate it better. They thus seem worth a try, as long as I introduce them in a controlled way.

    Unfortunately, I cannot do magnesium injections because of my rubber allergy. In addition to oral magnesium, I am going to try taking Epsom salts baths on a regular basis. They seem to be helpful to me.

    5) The nebulized glutathione and machine is supposed to arrive in a day or two.

    I am looking forward to that because I think it might help with my sleep problems. Of the five people on the board who have commented on nebulized glutathione, two (on different threads) have commented that they "sleep like a rock" after using it.

    This sounds appealing. I am using melatonin and Klonopin for sleep (with occasional Xanax for naps), a protocol that my doctor didn't give me any suggestions to improve upon except with the HGH at our last visit. Since these drugs have been only somewhat effective, I'm eager to give a new treatment a go.

    Everyone on the board whose comments I found liked nebulized glutathione, and so I am hopeful it will help in other ways. I have not had bad reactions to glutathione through the use of non-denatured whey protein, oral liposomal glutathione or glutathione/ATP shots, and so hopefully this form won't present a problem either.

    6) I have been re-evaluating my response to the methyl cycle block supplements.

    I took them for a little more than a month, and during the last week or so I felt like I lost a lot of functioning. I was going under the assumption that they were too strong for me at this time and that my body eventually got worn down from them.

    Now I have a different theory. As reported a few weeks ago, I had a bad reaction to doxepin (a drug I had used without incident for sleep many times in the past) during that time. I now think that it was interacting negatively with the SAMe in the supplements, causing a mild form of serotonin syndrome.

    Even in mild form, this reaction can cause a lot of stress on the body. I think it may be that it took me a week or two to get over it. If so, it wasn't the methyl cycle block supplements that caused me to feel worse at the end of the month I was taking them, but rather the bad interaction between the SAMe and doxepin.

    I am not going to try the methyl cycle block supplements again at this time, because I want to save as much energy as possible for my immune system to use in conjunction with the antiviral. Even if the detoxing from the supplements is fairly mild, it still takes resources.

    However, once I get back to the point where the drug (Famvir or Valcyte, whichever) does not seem to be requiring any special amount of energy, I am inclined to try the methyl cycle block supplements again. The idea that they were not responsible for my downturn earlier in the month makes me more comfortable with the idea of doing so, and more hopeful that they might have a positive long-term benefit for me.
    [This Message was Edited on 03/27/2007]
  19. Slayadragon

    Slayadragon New Member

    Tuesday, March 27
    Famvir--Day 141

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28-29: 250 mg
    Day 30-36: No drug
    Day 37-50: 250 mg
    Day 51-57: 500 mg
    Day 58-63: 250 mg
    Day 64-65: 500 mg
    Day 66: 250 mg
    Day 67-87: 500 mg
    Day 88-98: 250 mg
    Day 99-130: 500 mg
    Day 131-32: 250 mg
    Day 133-137: No drug
    Day 138: 500 mg
    Day 139-141: 750 mg

    I did not have a major crash today, but the motivation that I had yesterday dissipated completely. My mind has felt quite scattered and I have been overly sensitive to stress.

    I do not know if emotional stress was a contributing factor to my getting sick to begin with. However, since I got sick, emotional stress (much more so than physical exercise or day-to-day busy-ness) has had a huge impact on whether my health stays steady or declines.

    This is especially the case when I am actively killing viruses with Famvir. Hopefully my doctor is right and this sensitivity is caused by viral killing in my brain. Obviously getting rid of whatever viruses are in the brain is of crucial importance, and so (as much as I dislike it) the increased emotional sensitivity may be well worth it.

    However, it has repeatedly become clear to me that I need to avoid emotional stress at all costs while I am on this drug. Otherwise I get too worn out, thus causing my ability to do well on the treatment to deteriorate.

    Fortunately, I have a marriage that is virtually stress-free and have been able to severely reduce or eliminate most other sources of stress in my life for the time being. Still, keeping alert with regard to making sure that I do not allow any stress to infiltrate my life seems to me as important as anything else that I can do at this particular point in order to try to get well.

    My sleep is rapidly falling apart completely, as is usual with this drug. I hope the nebulizer and the glutathione for it arrives tomorrow, since that might help. In the meantime, I am going to take a little HGH and as much of my regular sleep remedies (benodizapines and melatonin) as is necessary to get a goodly number of hours of deep sleep tonight. I've only gotten about six hours each the past couple of nights. That definitely is not conducive to getting better.

    I have had a slight headache for part of the day, but that may be due just to not getting enough sleep.

    One positive thing about the fact that I'm once again getting difficult effects from the Famvir is that it apparently is continuing to work. Since I have not yet gotten much improvement as a result of it, the fact that more viruses are still being killed as a result of my use of it is encouraging even if the process is not fun.

    I am finding it hard to get in the mode of varying the amount of Famvir I take on a daily basis. Perhaps getting a good night's sleep will allow me to tolerate 750 mg all the time. If not, I will try varying the dose a bit and see how it goes.

    Meanwhile, my husband is continuing to do really well with the Chinese herbs. I am very very happy about that.
  20. cherylsue

    cherylsue Member

    Wow, the Chinese Medicine seems to be really helping you and your husband. I am impressed. I think the HgH is giving you the added boost. I admire your reasoning in determining that the SameE and Doxepin were contributing to a serotonin syndrome. That is most likely.

    I am happy to hear that the Famvir is working out better for you. You've accomplished in one day what would fatigue me in my better times. Your high level of functioning at times amazes me. What are your major issues with CFS? Fatigue, malaise, cognitive problems, low stamina, postexertional malaise?

    You and Mark Condon share a lot in common. You are both higher level functioning CFS'ers, but your lab tests indicate a poorer level overall than most. Your bodies are compensating in some manner not yet known. There's more to this disease than just determining a few test results. I think researchers have just scratched the surface.

    I also suffer from sleep issues, sometimes only getting 3-4 hours a night. I stopped taking clonazepam because I was getting a drugged feeling the next day. Last night I actually did sleep pretty well from 11-2 am. Bathroom break. Fell asleep until 6am when the alarm went off, and then slept 2 more hours. My daughter spent the evening home which helps my sleep as well.



    I had a terrible malaise/fatigue day yesterday. I started a post on work and CFS and received a few thought provoking responses. I see my local PCP doctor tomorrow. Considering my remitting/relapsing history, the reduced stamina with each CFS episode, and the likelihood of it reoccurring, I think I need to postpone my return. Even if I return to work one day and decide I can't do it, I have to go through the disabiltiy process again - 2 doctors notices and a district form. My family has expressed their alarm and concern that I wanted to return. They felt I should wait until the next school term.

    I miss work so badly. I did visit my principal and friends last week at school. I came back and rested that afternoon and the next day. That is a warning signal that although mentally prepared, I am not physically prepared.

    I am very sad today. It's taken the wind out of my sails. I want to reclaim my life so badly. My husband told me he doesn't want to see me relapse so I can't go back in the fall. He's telling me to relax and not add the burden of working. We're making it financially on the disability check, so there's no financial burden to return. Just my emotional and mental state wants me to go back to work. I miss it so.

    Feeling blue,

    CherylSue


    [This Message was Edited on 03/29/2007]