Famvir Status Report Week Fifteen

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

  1. Slayadragon

    Slayadragon New Member

    Wednesday/Thursday/Friday, February 21-23
    Famvir--Day 107-109

    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 99-109: 500 mg

    Very tired. Getting as much sleep as possible helps a little.

    Why emotional stress is so hard on me, I don't understand. My doctor said that was consistent with his experiences with other patients, but it is still very perplexing and hard to handle.

    Four months of this is entirely too long, especially since the end is nowhere in sight. It's starting to feel like a fool's errand. Perhaps I'm just losing all perspective, though.

    One thing that I don't think that I've ever mentioned in these status reports is that the glands in my throat have been almostly constantly swollen since a while after I started on the AV. I'm not sure when this started. It seems worth noting since I had rarely had swollen glands since the beginning of my CFS illness.

    My brain seems to mushy at the moment to decide whether the swelling is occurring as my lymph system moves out "dead bodies" killed by the Famvir or because my own immune system is working harder than usual.

    I think perhaps the latter, although at some point I will have to look it up to make sure. This would be a good thing, since it would suggest that I am "getting better" even though I am still feeling bad. I'm not counting on it though.

    Upon reflection, it's possible that the Famvir is driving the viruses from their hiding places and causing the infections to be more active rather than dormant. Again, I'm not sure what to think.

    I will continue to post these status reports for informational purposes, but would like to ask that those reading it refrain from offering advice or concern. I cannot bear it.

    In particular, worries about my well-being and exhortations that I do whatever in order to prevent some particular horrible event from happening would be especially hard on me. Criticisms of my asking for the omission of these kinds of comments also would be extremely destructive. I thus implore that these not be added to the thread.

    Thanks very much for your kindness in honoring my needs with regard to this request.

    Best, Lisa

    [This Message was Edited on 02/23/2007]
  2. cherylsue

    cherylsue Member

    Here's some interesting info from the HHV6 Foundation:

    HHV-6 in CFS

    Human Herpesvirus 6 (HHV-6) is a virus that persists in the brain tissue, and is not easily detectable by standard laboratory tests, but has long been suspected as playing a role in chronic fatigue syndrome (CFS), in conjunction with Epstein Barr Virus (EBV) the virus that causes mononucleosis. (See Reasons to suspect virus in CFS)

    The biggest problem in studying the association of this virus with CFS is that since these viruses are ubiquitous (most of us have been exposed and have antibodies) it is difficult to know which patients have active infection and which patients have a latent infection. Often, the HHV-6 virus only replicates in the brain tissue, so it is impossible to find it circulating in the serum. For these reasons, it has been difficult to prove a definitive association.


    Efforts to establish an association between HHV-6 and CFS have been complicated by a number of flawed studies that did not use assays that could not differentiate between active and latent infection. (See Past Studies of HHV-6 in CFS)

    Ironically, one of the best tests for active infection may turn out to be the old “low-tech” standard antibody test, using a high cutoff. While an HHV-6 IgG titer of say 1:640 might be perfectly normal for a 4 year old, or a teenager just over a bout of mono, it is not common in a 45 year old, and could be a sign of active infection. (IgM titers are rarely positive except after the primary infection; see Testing for HHV-6)

    Ultimately, it may be impossible to find direct evidence of the virus, and the only way to prove if an association exists is to treat for virus to see if the patients get better. This is exactly what infectious disease specialist Jose Montoya, MD from Stanford University has found. Montoya has now treated 25 patients with long-standing fatigue and elevated antibody titers to HHV-6 and EBV. He concluded that these patients were suffering from CNS viral infections treated these patients with a strong antiviral; an astounding 88% improved dramatically. Some of these patients had been sick for over 10 years. He calls this condition Virus Induced CNS Dysfunction and is now planning a placebo controlled trial. (See Stanford Trial Info)

    Most physicians are reluctant to use a strong antiviral without certainty that the virus is active. Antibody levels can remain elevated for years after the primary infection and in some cases, merely indicate a healthy response to a past infection. Montoya reasoned, however that since 97% of us have had our primary infection with HHV-6 by the age of two, and highly elevated antibody levels in an adult could mean active disease. His results so far suggest that his theory is correct. Antibody levels to both HHV-6 and EBV dropped with treatment. (Montoya 2006). His strategy is bold and his initiative invaluable because he will provide clarity where diagnostic testing has failed.
  3. cherylsue

    cherylsue Member

    More from HHV& Foundation:

    Experimental & Alternative treatments:

    Kutapressin, a drug that has been used by physicians for over 50 years but was recently taken off the market, demonstrated efficacy against HHV-6 in an in-vitro study. It inhibited replication by over 90% ( Ablashi, Berneman 1994 ). Schwarz Pharma purchased the rights to kutapressin but currently has no plans to reintroduce the product (the primary ingredient of kutapressin is pig liver extract). A Texas firm plans to introduce a generic form of Kutapressin in May called Nexavir based on the original formula. We have heard anectdotal reports of physicians using calf liver extract from compounding pharmacies.

    Ampligen , an experimental drug produced by Hemispherx Biopharma, is currently in trials for CFS and AIDS, was found to inhibit replication of HHV-6 in in-vitro testing ( Ablashi 1994 ). The company announced at the 2005 antiviral conference that Ampligen improved exercise performance in CFS patients.

    Whey protein ImmunoPro (which enhances glutathione production) was found to inhibit the virus in testing done at Advanced Biotechnologies (unpublished data). Further, it was found to reduce the toxicity of foscarnet and potentiate the foscarnet when the two were tested together. Theoretically, this would permit a reduction of both the dose and toxicity of foscarnet. Of course, clinical trials are necessary to determine if there is any clinical benefit.

    Isoprinosine is a general antiviral that has been used by physicians in Europe for CFS patients with HHV-6, although no studies have been done on efficacy.

  4. ask2266

    ask2266 Member

    I'm on week 8 of Famvir treatment, and I've worked my way up from 250mg once per day to 1000mg twice per day. It has sucked as I have increased dosage. I've been bedridden many days. The herxing was unbearable. Then, I added heparin, and the herxing got even worse because my doc said that the heparin would get alot of the viruses out of the fibrinogen and die-off even more. It has been terrible, miserable. All of my cfids symptoms got worse.

    But at week 8, I am starting to feel better than I have felt since I developed chronic fatigue syndrome. I only have EBV and yeast city, so I don't know what this means for others with Lyme or HHV6. I get the feeling from what I've read that Valcyte is better for HHV6.

    Anyway, my point is that Famvir has changed my life.
    [This Message was Edited on 02/24/2007]
  5. mezombie

    mezombie Member

    The only research I've come across on Nexavir and Kutapressin is similar to that posted above by Cherylsue. Cheney's claim that Nexavir is a "weaker form of Ampligen" isn't supported by the evidence. As much as I respect Cheney, I do think he has a penchant for hyperbole. I don't think Nexavir works the same way as Ampligen. Ampligen is an immunemodulator as well as an antiviral; Nexavir is only known to have antiviral properties. Of course, more research on Nexavir's mode of action would be helpful. Given that it's already on the market, there isn't much incentive for that, unfortunately.

    I assume you're aware there is a Yahoo group of Kutapressin users that share their insights.

  6. Slayadragon

    Slayadragon New Member

    I had no idea that there was someone using Famvir and having a hard time of it for an extended period of time on this board! I'd only heard of people not being affected at all by Famvir, or being affected for a couple of days. I was starting to feel really weird, therefore.

    My doctor has be going slow and then is going to switch me to a fairly low dose of Valcyte for a while longer. I'm not sure how sick I will feel on that.

    I don't disagree with his strategy of trying to keep my body from getting too burned out, but this is starting to feel interminable.

    Sometimes I think going faster would be better, even though I was extremely sick at the beginning. In any case, my doctor has a lot of experience with this, and so I'm following his directions.

    During my last upturn, I tried a very small amount of nattokinase, which is supposed to break up fibrin. It definitely increases the effect, and so I've backed off for the time being. I'm having a hard time imagining what things would be like if I were at 2000 mg per day though.

    What were things like for you before you started?

    How much progress have you made? What are things like now?

    Are you continuing to improve? How long do you think you'll keep taking the drug?

    Who's your doctor?

    Thank you for writing. It is really good to get the encouragement.

    My best regards, Lisa


    [This Message was Edited on 02/24/2007]
  7. Slayadragon

    Slayadragon New Member

    My doctor suggested to me that Nexavir would help to kill viruses too. I got the feeling that it did so directly, but didn't know much about it at the time (early January). It's only over the past couple of weeks that I heard about that "weak form of Ampligen" and started to worry about it.

    I did Kutapressin shots for quite a long time a number of years ago and didn't notice any benefit at all. Didn't you say the same thing?

    I am encouraged by CherylSue's progress and by the fact that there doesn't seem to be herxing. I'm not sure how you can kill viruses without herxing, but it would be worth paying money to do so (especially at this point).

    My doctor suggested that I add Nexavir since I was under the impression that my usually good drug insurance would pay for it. That has turned out not to be the case.

    Nonetheless, I'd really like to explore the idea of Nexavir, especially as I (hopefully) continue to get better and perhaps as a maintenance treatment after I phase off the Famvir/Valcyte. (These events are starting to seem like they are never are going to happen, but we shall see.)

    I will ask my doctor again what he thinks when I see him in mid-March. (I was going to go earlier but decided to push it back. Based on our conversation, i think he kind of wants me to go as far as I can on 500 mg of Famvir before switching to Valcyte anyway.)

    Someone---I think CherylSue---mentioned the Yahoo group a few days ago, but I haven't gotten the energy to look it up yet. I will try to do so soon.

    Thanks much for your note. I'm under the impression that you had a rough week, and hope that you're doing better.

    Best, Lisa

  8. mezombie

    mezombie Member

    You're correct, I didn't respond to Kutapressin either. However, I do know several people who did. None of them herxed on it. Two noticed the difference when they stopped using it, but one went off it and continued to improve.

    I'm feeling a bit better (thanks for asking), though still too brainfogged to respond to the "mezombie(bppv)" thread. I suspect part of me feels it will interfere with one of my favorite coping mechanisms: Denial! By that, of course, I mean focusing on the good things in my life and (at least temporarily) not thinking about the bad.

    I appreciate your Famvir updates and your thoughtful analysis of the drug's impact on you. I'm sure others do, as well.

    To better health for all of us!

    Cheers,
    MeZombie
    [This Message was Edited on 02/24/2007]
  9. Forebearance

    Forebearance Member

    Wow, ask2266, that is very encouraging! Thanks for sharing your experience!

    All I can say, Lisa, is please hang in there. I think you're on a good path.

    Sometimes it does help to set a deadline for when you will stop trying a treatment, if you don't see any benefit from it. It keeps you feeling empowered.

    Personally, I am doing this anti-viral treatment so gradually that a fair trial of it would probably be something like two years. If I don't start to see results after two years, then I will start to feel like quitting.

    Love,
    Forebearance
  10. MKate

    MKate New Member

    Hi -

    I'm intrigued. Had CFS for 14 years. Never found a physician whose knows of any of these. Only improved thru trial and error with vitamins, detoxing, hormones, rest. Most improved after clinic coordinated all of these for me. Now, going down hill again.....wondering.

    Question 1: At what level of sickness/activity are you all trying to improve with strong antivirals?

    2) Is there potential harm in further weakening the immune system by taking them?

    3) What does Herxing mean?

    4) Where can my new physician find the means to test me for Molecular Biology (Immuniosciences) and would that provide the HHV6 and EBV testing to prove the need for certain remedies?

    5) What did you all do before taking the anitvirals -- are the antivirals helping more than other means to stregnthen immune system?

    Sorry -- I'm doing some catch up on knowledge - I guess!

    mkate!

  11. ask2266

    ask2266 Member

    When I started out on Famvir, my main issues were
    (1)NOT sleeping well AT ALL, despite numerous drugs
    (2)Brain Fog-- very forgetful, no ability to get words
    (3) I could function from about 8am until 12pm everyday, and then I needed to lie down from fatigue, overstimulation, yuck feeling. Some days I could make it to 1pm.(My babysitter for my 2 year old comes from 12:30pm-5:30pm, so I can rest for most of the dayI am unemployed/ on disability ins.)

    I had had adrenal and muscle pain issues that had already been addressed with hormones (cortef, florinef, T3)before I started the Famvir.

    On 250mg, I felt ok, had like a 2 day herx-- could function from 8am-10am, then lay down, then I felt ok the rest of the week.
    On 500mg, I felt terrible for the whole week.
    On 1000mg and then 2000mg, I herxed less than I did on the 500mg, had some decent days.
    But then, I added the heparin to the 2000mg of Famvir and I herxed the worst of all. I am now on week 4 of 2000mg of Famvir and heparin. Week 3 was the worst, which I think is what Montoya's patient's reported re: Valcyte. I was lying down in agony, crying alot.

    In week 4, I notice that suddenly I can do things from 8am until 4pm, without feeling hyperwired/fatigued/yuck. My brain fog is still there, but not as badly. My sleep is better, but it still needs work. My best improvement is that I can actually picture myself having the ability to go back to work someday, which I didn't have before.

    My doctor said that I will be on the Famvir from 6 months to a year, depending on how I'm doing. He doesn't anticipate that I'll need Valcyte since I don't have HHV6, but I'm not ruling anything out.

    My candida problem is still raging, however. I get lots of yeast infections.(sorry to be gross)

    My doctor is Dr. Cuttapah with the FFC in Atlanta.

  12. Forebearance

    Forebearance Member

    Hi, mkate!

    I'll try to answer your questions, for my case. I've had CFS for 17 years and have done the same trial and error with vitamins, hormones, rest, exercise, etc. But I think the heart aspect of CFS has made me continue to go downhill. (But now I'm starting to treat that, too.) I'm completely disabled now, i.e, I don't work at a job at all. But I do manage to cook, clean and otherwise care for myself.

    I am actually using a very gentle anti-viral which probably doesn't have any bad side effects. You can find my threads about anti-viral enzymes if you are interested in reading about it. I'm trying to do it slowly so that I don't weaken my immune system. It takes great patience to do it that way, though.

    Mikie has described Herxing as the body becoming overloaded with dead viruses or bacteria. It's named after Dr. Herxheimer, who first noted that some people on some treatments feel worse before they feel better.

    I'm paying for my Immunosciences Molecular Biology of CFS test myself. I'll put my credit card info on the test request form. That test doesn't include HHV or EBV.

    All the stuff I try is a guess and a hope to some extent. One never knows if a treatment will be tolerable or right for any one person. I just use my best judgment. I think people have been very inspired by Dr. Montoya's Valcyte trials.

    I hope that helps some!
    Love,
    Forebearance
  13. MKate

    MKate New Member

    Hi -

    I was chased out of a physician's office in October for asking about antivirals ---- so my questions:

    1) At what stage and for what purpose do the long-term antiviral meds get presribed?

    2) ARe you (or your physicians) at all concerned with the bodies inability to utilize them long-term and therefore lose ground healthwise? and

    3) Have you tried all of the other immune enhancing things through diet, enzymes, etc.....first - and this is just to support you more?

    I'd be interested. I took antiviral for 3 months - daily - and now my body seems to have allowed it to spread to new places that I've never had it before during the last 25 years......however had CFS for 14....so don't know.

    Thanks..

    MKAT
  14. Slayadragon

    Slayadragon New Member

    I'm not in great shape today, but I bumped up a thread to the top of the board for you.

    It is called:

    My Strategic Plan for Using Antivirals (Valcyte etc.)

    Feel free to ask more questions and I will answer them when I am feeling better. (Please be patient though.)

    Best, Lisa

  15. pawprints

    pawprints New Member

    Thanks for the encouraging post. I have not tried the antivirals yet.

    However, I was on Heparin through a FFC doctor. I think that helped a bit despite the fact that my stomach got very sore and bruised.

    I am now on oral supplements to help break down the fibrin. It took about 3 months for all the bruising to disappear.

    Good luck with your treatment. Are there two doctors at the Atlanta FFC now?
  16. Slayadragon

    Slayadragon New Member

    What kind of supplements are you using to break down fibrin?

    What has your experience been?

    Best, Lisa

  17. pawprints

    pawprints New Member

    Mainly Nattokinase and Lumbrokinase. I have found the Heparin shots really did alot of the work and were necessary. I did hate the soreness of my belly. I had some herxing but it was tolerable. Of course, I only do one new thing at a time so my system does not become overwhelmed. I also would take a few days off if I felt my stomach needed a rest. Now I have switched to oral, but would go back to the Heparin if I needed.
    [This Message was Edited on 02/25/2007]
  18. Slayadragon

    Slayadragon New Member

    Upon reflection, denial's not always such a bad thing.

    It would have been even harder to survive the past decade if I always had been focusing on what my life ideally would be like and trying to find ways to make it that way.

    At some points in life, it's best just to make the most of what you have, I think.

    I don't think i'd have been ready to start this AV a couple of years ago either.

    Hope you're doing okay this week.

    Best, Lisa

  19. Slayadragon

    Slayadragon New Member

    It sounds like you've gotten some benefit from the Virastop already though.

    I don't know if the cost/benefit ratio would be worth it for you to go on at the level that you're at now forever, but at least you do seem to be getting somewhere.

    Best, Lisa

  20. Slayadragon

    Slayadragon New Member

    Question 1: At what level of sickness/activity are you all trying to improve with strong antivirals?

    I managed to chip away at a lot of my symptoms after I got sick, mostly in the first couple of years. (I got sick in 1996.) I had about 4-6 hours of time per day that I could do pretty much whatever I wanted, and another couple where I could do things that other people would find really relaxing (like going to a quiet restaurant). I wasn't happy with my cognitive functioning, although it was only with specific things that i had problems. I would have been much, much sicker if I hadn't been constantly working on my health (yeast, food allergies, hormones, sleep, nutrition, etc.) though.

    2) Is there potential harm in further weakening the immune system by taking them?

    I don't know about weakening the immune system in particular. You could weaken your whole body (immune system included) if you get too sick on them from the herxing, I think. if you take it so that resistant strains develop, the drugs may not work for you any more. i have been taking Chinese herbs (prescribed by a well-respected Traditional Chinese Medicine doctor) over the past few weeks, and from what I can tell many of them address the spleen, which is an immune system component. They have been helping, and so perhaps that part of my body was stressed from initial use of the AV's. (And of course, the bone marrow dysfunction that is sometimes associated with Valcyte is related to the immune system. Blood testing appears to be effective in preventing this from being a long-term problem though.)

    4) Where can my new physician find the means to test me for Molecular Biology (Immuniosciences) and would that provide the HHV6 and EBV testing to prove the need for certain remedies?

    see my post from yesterday with the word "Immunosciences" inthe title.

    5) What did you all do before taking the anitvirals -- are the antivirals helping more than other means to stregnthen immune system?

    I had good success treating candida prior to the AV. I did pretty much everything anyone could think of for my immune system as a whole before starting on the AV's. At most, I got a slight feverish feeling. (That seems to mean for me that viruses are being killed off.) I never got to the point where i got any noticeable improvement from any product that targeted the immune system directly. It could be that my viral and bacterial problems were so high that nothing made a noticable dent though.

    Best, Lisa