Famvir My Status Report

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Nov 14, 2006.

  1. Slayadragon

    Slayadragon New Member

    Perhaps people will feel it's overkill to hear status reports with regard to my antiviral usage on a daily/frequent basis, but since I'd like to hear them from others I may start doing them myself.

    I hope that other people who on either antivirals or the OTC product Virastop will join me in this (preferably on their own separate posts to keep things more organized).

    Tuesday, November 14:

    I've been on 250 mg of Famvir (half my doctor's prescribed dose) for almost a week, with no discernible good or bad response.

    Yesterday I took 500 mg.

    Today I have a bad sinus headache and swollen glands in my neck. (I've been moderately tired, for me.) This could be from an acute infection (I just got back from a trip to NYC, and airplanes are full of germs), but it's also possible I'm herxing. Time will tell.

    The only other side effect I've noticed is that I feel very mildly nauseated if I take the Famvir on an empty stomach. It's suggested "with or without food," and so I'm taking it following meals.

    I have taken 500 mg again today and will see what happens.

    [This Message was Edited on 11/14/2006]
  2. maedaze

    maedaze New Member

    Would like to hear how you get on.... did the dr say how long before you know if they will give you results or not?

    I am hoping to start in the next couple of weeks if I can get my doctor to prescribe them... We don't seem to have any choice over here, there is only one brand we import here and it's from Ireland.. It is also a long term thing, ie years not months..

    I know only of one person who has used them so far as they are sooo expensive and hard to get hold of... she didn't notice any difference for the first year. She started off with one tablet and then worked her way up slowly to 6 a day.. She never got sicker or 'herxed' just after a year on them she started to slowely come right. It's now 3 years later and she has felt competely recovered for the last 6 months and is down to 2 tablets a day.

    She has been sick with cfs for 15 yrs, was in a wheelchair and very limited life. She and her husband have just got back from travelling overseas and she walked everywhere and has had no relapses what so ever. (she's not stopping the antivirals either!!)

    I hope you have a similar success story in the future to share..... good luck..
  3. Mikie

    Mikie Moderator

    Sound just like mine did on Famvir just prior to Herxing. The swollen lymph nodes, headache, and fatigue are often the immune reaction as the medicines cause the viruses to get excited. Suddenly, the immune system takes notice and produces these reactions. As the Famvir, and even the immune system itself, kill off the viruses, you may Herx if the killoff is too great for your body to be able to excrete the dead critters before they turn toxic.

    Let us know if you Herx. Good luck and if you do Herx, I hope it isn't too uncomfortable for you. I Herx hard and fast and look at it as a good sign that pathogens are being killed off.

    Love, Mikie
  4. cherylsue

    cherylsue Member

    Thanks for sharing your experience. I have some 100mg supply of Famvir for 10 days that my local PCP prescribed when I first had my relapse, but I never took them. Dr. Papernik had prescribed 500 mg 3xday for 5 days. I could only get to day 4. I was soooo sick. He was trying to stop the infection in the bud, but it didn't have that effect.

    Don't forget your ProBoost. I think taken over time, it is pretty decent stuff, and Dr. Teitelbaum encourages people to take it along with the antiviral for more effectiveness. I think it may also increase NK cell function and depress the lower weight RNaseL.

    I am improving, but not strong enough to return to work yet. My local doc extended my medical leave.

    I am exploring the hypercoagulation and fibrinogen theory in treating viruses. I am going for a test today for the fibrinogen, but am not able to get an ISAC panel because no labs do this around here. Have you ever had this done? If I test positive, I am going to start bromelain before I start any other enzymes. I wonder if this treatment is really effective.

    Best of luck to you.

    CherylSue

  5. Mikie

    Mikie Moderator

    Jolie, thanks for your kind words. This is one area where I've been through so much and try to help add to our collective wisdom and experiences. The more we know and share, the better is is for all of us. Thanks again.

    CherylSue, have you been to the HEMEX Lab website? I can't remember now whether you can have your blood locally drawn and sent in. There are, I believe, other labs which do these tests.

    I could not tolerate the enzymes; they tore my stomach apart. My doc and I decided to try the Heparin injections empirically. My Sed Rate was only a 2 at the time. That isn't a definitive test for hypercoagulation but it is indicitive that the problem may be present. I think the last Sed Rate I had was a 7.

    Judging by the very, very strong immune reactions and Herxing while on the Heparin, I would say there is a lot to the theory. Where there is significant fibrin, there is also danger of bleeding. The fibrin can trap platelets needed to clot blood at wound sites. I used to bruise so easily and hemorraged following surgery. I no longer bruise easily.

    Good luck to everyone who is working on chronic infections of all kinds. I do not believe we can heal until we address the infections.

    Love, Mikie
  6. Slayadragon

    Slayadragon New Member

    Thanks to all for responding!

    Cheryl Sue:

    The dose that Dr. Papernik gave you was 3x what my doctor has recommended I take for the first month, then. My doctor did tell me that mine was a low dose, but I didn't know how low.

    I knew you had told me that Dr. Papernik had given you an antiviral when you first relapsed, but I had thought you stopped it because you didn't respond, not because it made you sick. I'm starting to be convinced with the anti-virals that starting small is the way to go.

    Tam--I can't remember her whole user name---reported having an initial "I'm cured" 2-3 days on a high dose of acyclovir. Then she burned out spectacularly in that "I feel so so so so so so so sick" way. She gave up entirely, which may or may not have been the right choice. (This was a couple of months ago.)

    The antivirals are very potent drugs for at least some of us, it seems. It's kind of amazing how potent.

    It will be interesting to see (regardless of which antiviral I continue with) how far and how quickly I can increase dosage without burning out.

    I hadn't heard before that it is useful to combine ProBoost with antivirals, but I can do that. How much are people suggesting?

    I'm kind of lost in the discussion on bromelain and other disgestive enzymes. I take both pretty regularly and have no problems with either. Are they related to antivirals (or hypercoagulation or whatever) in some way?



    Maedaze:

    I wrote a post on how I got on antivirals a while back. I will find it and insert it into this thread.

    Which antiviral was your friend using? Did s/he have more fibro or CFS to start? That's an amazing story about it taking so long to have an effect and then it having such a _huge_ (and apparently long-lasting) positive effect. These are the kinds of examples I'd like to collect, so that we can all figure out how to use these drugs more effectively.

    My doctor said I should try Famvir for a month, and then if "that didn't work," he would move me to Valcyte. I think he meant if there was no significant effect, but his thoughts on antivirals seem to be changing significantly as he tries them with different patients. His assistant (also an M.D.) pointed out to me that this was a low dose of Famvir when he phoned it in last week. It could be that in the eight weeks since I talked to the main doctor there, he had come to the conclusion that starting small is better. (He didn't mention beginning with a low dose when we initially discussed it in his office back in early October.) Provided that I don't have anything that seems to be a true bad side effect (as opposed to a likely herx) I'm inclined to just stay on it at this dosage until the beginning of January, when I have another appointment with him.


    Mikie:

    Thanks for the info on herxing. Last night my sinuses drained (and I did a bunch of sneezing). Now my headache and swollen lymph nodes are totally gone. I'm not feeling better in general today than I would expect I might (all else being equal), but I'm no longer feeling worse, either. Seems like it was a herx, although a one-day one seems kind of short. Maybe if I ramp up the dose slowly I'll be able to avoid the huge ones that prevent people from succeeding entirely with the drugs, though.

    Again, thanks to everyone for their comments!
    [This Message was Edited on 11/15/2006]
    [This Message was Edited on 11/15/2006]
  7. Slayadragon

    Slayadragon New Member

    My Immune/Virus Test Panel Antiviral Plan 10/05/06 10:57 AM

    I just got the results back from an immune system panel.

    The panel was done by Immunosciences Lab. Their phone number is 310-657-1077. The panel name was (I believe) simply "CFS." The cost was around $550. My doctor said that insurance has been very good about covering this,, although I haven't submitted yet.

    My doctor said that there are only two labs in America performing this test, and that his experiences with this lab have been very good. He called it the "Gold Standard."

    The results were pretty terrible. My doctor is going to give me a protocol to clear out as much yeast as possible over the next two weeks. Then he is going to have me try Famvir for a month. If that doesn't work, he is going to have me take Valcyte. Hopefully my insurance (usually fairly good) will pay.

    My doctor said that he has had very good response with Famvir since he's been using it (for about a year).

    The Valcyte is the drug that was used by the California doctor (Stanford?) on classic CFS patients who were totally incapacitated. Almost all of them showed tremendous improvement after a short period of time, he said in a paper presented in Spain early this past summer. This study was written up in the general news media. My doctor apparently has seen the paper, or at least talked to the researcher about it.

    He says that since that time, he has put about 18 on Valcyte, and that most are doing really well.

    My doctor also uses the drug amantadine, but says that you need to take it for three months before it really does anything.

    If anyone has experiences with these drugs, please let me know.

    Here are my test results. If anyone else has had tests like these, please let me know.

    **

    RNASE-L ACTIVITY
    (Measure of viral inhibition in cells)
    NORMAL RANGE: 1.0-10.0
    MY LEVEL: 40.00

    NK CELL ACTIVITY
    (Measure of activity of Natural Killer Cells, sort of similar to T-cells. Note that in Japan, CFS has been known by the name "Natural Killer Cell Dysfunction Syndrome" or something to this effect.)
    NORMAL RANGE: Greater than 19
    MY LEVEL: 4

    APOPTOSIS
    (Cellular marker of oxidative stress.)
    NORMAL RANGE: 0-5%
    My LEVEL: 10.70%

    INTERFERON ALPHA-SERUM
    (I believe this suggest presence of viral load in the body. My discussion with my doctor was crammed full, the description in the printout is very technical, and I haven't had time to do a Web search.)
    NORMAL LEVEL: Less than 12.5
    MY LEVEL: 412.0
    (Yes, these are the right numbers. Approximately 40x the high end of the reference range.)
  8. deliarose

    deliarose New Member

    Quest Labs now offers tests for hypercoagulation if that's what you mean by the ISAC panel.
    delia
  9. Forebearance

    Forebearance Member

    Hey, Lisa!

    It was a good idea to start another thread about Famvir. I will be reading your updates with interest.

    How cool that you've been sneezing, too! It's very similar to what's been happening to me.

    I don't know a lot about the fibrinogen theory, but I think that enzymes are supposed to help clear excess fibrin from the bloodstream. And I think (but am not sure) that Heparin does a similar thing.


    Wow, Maedaze, your friend's story is inspiring! I wonder if we would have to take anti-virals forever?


    Hey, Cherylsue,

    I, too, have been taking bromelain for a long time with no bad effects. It helps my allergies a lot.


    Hang in there, everyone!
    Forebearance
    [This Message was Edited on 11/16/2006]
  10. maedaze

    maedaze New Member

    The antiviral that my friend is on is called Isoprinosine also known as Imunover. It's an old drug used for cancer and aids patients. But I see it is in phase 2 of research study for cfs at the university of miami cfs research and clinical centre..

    We seem to be sooo backward over here when it comes to accessing medication.. We cannot get any of the anti virals you are all talking about?? We have got one cfs specialist in the country - whom i am going to see next wednesday and it is only through her that we can get access to Imunover. Gp's here don't even know antivirals exist!

    Testing over here is soo limited too. Very frustrating when trying to work out what is at the bottom of all this. Wanting tests done only to find out that they don't even exist here?!..... They work on if you can't test for it then you havn't got it attitude..... So as you can guess cfs is not high on doctors interest scale..

    The lady taking imunover had cfs, the only other 'pill' she is on is one for her heart. This is the only person i have come accross in the last 12 yrs that has truly gotten well... Will be keeping in touch with her as she is now running our local support group, so will update if she ever relapses. But I truly believe she has found her magic bullet for her body..... I sooo hope we all end up like her.
  11. Mikie

    Mikie Moderator

    Can clear the fibrin, but I couldn't tolerate them. Tagamet works too. The injections weren't difficult at all and were not painful. They did bring on a huge immune reaction and, in addition to the usual, I swelled up around the middle and in my hands, legs and feet. I only stayed on the injections 2 1/2 months as I didn't feel I could tolerate them any longer.

    Severity of Herxing parallels the size of the dieoff of the pathogens. If one is on a lower dose, the dieoff can be smaller and less severe immune reactions and Herxing is possible. As long as the body can excrete the dead pathogens rapidly, one may only notice the immune reaction and will not have the purging which is Herxing.

    I was on Famvir for 1 1/2 years. After about the first six months, I pulsed the Famvir. This helps keep the viruses in a confused state and allows an AV to remain effective longer. My ins. doesn't cover Famvir and it's really expensive, so I have switched to Acyclovir. It works just as well as the Famvir but it has a side effect of making me feel a bit sick. I only keep it around when I suspect one of my chronic viruses is reactivating. It works well to push things back into a latent state.

    Finally, I have great respect for the transfer factors sold here. I switched from AV's to the TF's and went through huge immune reactions, so much so that I could only tolerate a bit of the powder from the capsules under my tongue the first month. I had big Herxes from the TF's. The advantage of the TF's is that they train the immune system to recognize these pathogens and kill them. I now only pulse the TF's for a couple of days every six weeks. HHV-6 is very difficult to control. I believe the TF's do a better job with this virus than the AV's.

    Again, good luck to everyone and please, keep us updated on your progress.

    Love, Mikie
  12. cherylsue

    cherylsue Member

    Where did you get your ISAC panel? My PCP couldn't find it from Quest. I went to a local hospital and could only get the fibrinogen.

    I guess it doesn't matter. I don't think bromelain would hurt me if I tried this digestive supplement.

    LISA: Virostop is comprised of enzymes which do the same thing for fibrin.


    Thanks for your replies.

    CherylSue
  13. Slayadragon

    Slayadragon New Member

    11/16/06 (Thursday)
    Famvir 500 mg (Day 4)

    I feel totally worn out (more so than usual) for no other apparent reason than the possibility that I'm herxing. My stomach has felt queasy all day too (even before I took the Famvir, which I think makes me feel slightly nauseated if I take it on an empty stomach). I forced myself to drive the three minutes to the Apple Store to pick up my computer (in for repairs once again); otherwise, there's no way I would have left the house.

    I feel like my body is going through different weird phases on this stuff. That's fine, as long as I get a good result in the end.

    I'm assuming that if this does work, I will have to take an A-V indefinitely, in the same way that manic-depressives or HIV patients take drugs. I'm wondering if rotating the A-V's might be useful though, since if you kill off one class of viruses another might very well quickly take its place. That seems to me to make more sense than pulsing (and is similar to what I do with various yeast killers). I will talk to my doctor about this at some point; maybe other people here will try that strategy and see what happens.

    My intuition says that Valcyte may be better for me than Famvir for the long run even though it's supposedly more toxic. I think starting with Famvir and seeing how things go is a good idea of my doctor's, though.

    I've yet to understand the popularity of Valtrex amongst people on the board, considering that 1) it seems not to have made a _huge_ difference for people over the long-term and 2) it seems to be relatively toxic. We have a very small sample size here, though. Hopefully more people will use a-v's soon so that we can see more results.
    [This Message was Edited on 11/16/2006]
  14. Mikie

    Mikie Moderator

    After the original cycle on an AV, it is sometimes more effective to pulse it off and on. You could talk to the doc about this.

    AV's don't usually have to be taken for life. Once they get the infection back into a latent state, they need only be taken if the virus(es) reactivates.

    I switched to transfer factors which, I believe, are more effective than the AV's once the infection is under control. The TF's train the immune system to target certain pathogens. I took the TF's for about three months and now only pulse them for a couple of days every six weeks.

    Again, you could talk to your doc. We are all different and have had chronic infections for varying lengths of time. Our viral loads can be very different as well. All this plays into how one tailors one's regimen with one's doc. Sometimes, it's a lot of trial and error. Good luck again.

    Love, Mikie
  15. Slayadragon

    Slayadragon New Member

    Friday, November 17
    Famvir 500 mg--Day 5

    Very very sleepy all day today. Am continuing to make a good deal of mucus. This seems like a herx, therefore.
  16. wrthster

    wrthster New Member

    Whoever posted on Imunovir with regards to this thread: You can get it from other doctor's other than whom you are going to, which sounds like Nancy Klimas? You are right an Internest or GP will not know what it is, but someone who is on the co-cure good doctor list I am fairly certain will either know about it, or at the least read on it and probably give you a script for it. You can get it through the company with a prescription only. Do an internet search and there should be a few web pages on how to get it.

    It has to come from overseas. It is not FDA approved therefore insurance will not pay. I believe a 3 month's supply is about $250. I also believe it is an anti-viral immune system modulator. But research it on the internet. I think everyone's symptoms and problems vary in this condition, so what may work great for one may not for another. Good luck to everyone.
  17. cherylsue

    cherylsue Member

    Wishingonastar (Patsy) a former poster on this board is now in remission. She was on Valtex for awhile to control her EBV. After awhile, the Valtex didn't work anymore. Her former FFC doc put her on Cumanda, a natural antiviral from South America to control her viruses. This was another item I thought of exploring some day.

    Good luck with the Famvir. I have 10 days worth of 100mg. pills in my cabinet that my PCP had prescribed that I hadn't taken because Dr. P prescribed the 500mg. I just couldn't handle it.

    BTW, I am improving sloowwlly. It is my intention to return to work part time in January and build up to full time. Hopefully, I don't come down with some awful cold or virus to prevent that. I'm returning to a school, so what are chances of me preventing that???

    CherylSue

    CherylSue

  18. Slayadragon

    Slayadragon New Member

    Saturday, November 19
    500 mg Famvir--Day 6

    Tired as all get-out. It's been a very long time since I've felt this way (at least for no push-crash reason). Obviously this is from the drug. I wonder how long it will continue and (if it does) I should increase from this small dosage to a slightly larger dosage anyway. I will be talking to my doctor in a couple weeks and will see what he says.

    I also have been very thirsty. At one point today, I drank four 14-ounce glasses of water in literally three minutes. Maybe this is washing out dead bugs?

    Cheryl Sue:

    In reading that report from the CDC, it seems like you and I have two different sorts of CFS. Mine was from the "killer flu" that lasted forever at an even level (except insofar as I've treated it medically and gotten better or stressed myself and gotten worse). Your seems to go up and down randomly. I don't know what the difference in treatments would be. I do hope you're getting better and can go back to work for at least a while (preferably permanently), of course.

    I haven't sent that immune panel to Dr. P....I kind of wanted to give him some info re my experience on the drug when I did so. Maybe I will do it soon. And I certainly will do it if you're planning to see him. Let me know.
    [This Message was Edited on 11/18/2006]
  19. karinaxx

    karinaxx New Member

    i think it will help us all, if we get some first hand experiences with treatments, especially the antiviral treatments.
    so , i am lurking around and follow your diary.
    take care and i really hope it will work out for you.

    love karina

    i am guessing you are a CFIDS suff. not FM?
  20. Slayadragon

    Slayadragon New Member

    Thanks for your note. I almost never have any fibro at all. Sometimes a little muscle stiffness (especially hamstrings) that benefits from yoga, but other than that, nothing.

    I had no idea this anti-viral was going to his me this hard, btw. It's a tiny dose, something like 1/3 to 1/4 the usual one. I'm glad it's doing something, even though my house is a total disaster at the moment....