Famvir Status Report Week 2

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Slayadragon, Nov 19, 2006.

  1. Slayadragon

    Slayadragon New Member

    Sunday, November 19
    Famvir 500 mg--Day 7

    Worst day so far. It's been many years since I felt this bad. And I don't think I've ever felt bad in quite the same way before.

    In the past when I've overdone it (and before I started taking DHEA and a bunch of other hormones), I felt depressed and/or in need of sleep and/or like every cell of my body was dying.

    This time, it's like I'm in a stupor. More like having a very bad flu than anything else--I'd agree with Jolie on that. I don't feel like I'm dying or even like things are intolerable, just comatose. Stimuli (especially talking/noise) hurts. My appetite is non-existent. Despite supplemental stomach acid and digestive enzymes, the small amount of food I ate yesterday seems to have gone right through me. I don't have a temperature but feel overheated. My head hurts.

    Reading is sort of tolerable. I watched a mindless French film ("Beauty and the Beast") in subtitles with the sound turned almost all the way down; the 90 minutes of that was okay, earlier in the day when I was feeling slightly better. I've been sleeping (or half-sleeping with vague dreams) most of the day. Reading posts on this board (and another one) is tolerable, but surfing the Web would be impossible.

    I think I'm going to eat white rice cooked with chicken broth in my rice cooker for dinner. My yeast seem enough under control that I think I can handle some white rice for this one day.

    Maybe I should lower the Famvir dosage, but this is a very small one to begin with (about 1/3 to 1/4 normal). I'd kind of like to make some progress even if the short run is difficult.

    I wish I knew how long I was going to feel like this, since I've tentatively agreed to some consulting projects in the next few months. They're actually good projects. I still would rather work on getting better if I have to choose, but it would be good to know so that I could make plans.

    I have a somewhat stressful phone call scheduled with a client tomorrow, and I'm dreading it a lot. I'm going to tell them that I have the flu (basically true), so that they either postpone or don't expect too much from me.

    This reaction is so strong (and testing showed that my viral load is so high) that I honestly believe that I'm on the right track with the AV's. (Whether Famvir will ultimately be the right one, or whether rotating between different AV's will be the right strategy long-term is still unknown, but I can think about this later.)

    I have some hope that the AV's will make a big difference, but I think it's going to take time. Maybe a year, even. That's fine. I've been sick for 11 years, and so that seems trivial in comparison.

    I do wish I had some idea of how long this herx will last, though. Maybe it will go on "forever", until most of the viruses are killed off. Or maybe it will come back every time the dose is raised (I think this dose is not going to be sufficient for the results I would like to see).

    I'm willing to do whatever it takes in order to get substantially better, but it would be nice to have some idea of how to plan ahead. Maybe when I see my doctor in early January he'll be able to give me an idea, since he's been using AV's a lot. I wish I had thought to ask him last time.

    Thanks for listening. I'm glad that others are doing this at the same time....it makes me feel much more like this is the way things are "supposed" to be, which is really helpful.

    [This Message was Edited on 11/26/2006]
  2. Slayadragon

    Slayadragon New Member

    This is a very good point. My liver always has seemed in very good shape whenever I've gotten lab tests, but that doesn't mean it couldn't use help.

    My husband used to have residual liver problems (he is from Taiwan and previously had Hepatitis A and B.....thank God, he managed to clear the Hep B on his own at some point), with quite high enzymes. He tried a variety of things (including the milk thistle) but finally was totally fixed as a result of herbs from a Chinese doctor.

    Later I heard that the main component (bupleurum) was shown by Western studies to indeed be effective for liver problems. TCM (Traditional Chinese Medicine) does not seem to have much to offer for CFS in general,, but liver problems seem to be a core competency of theirs.

    I think that we may still have some of his herbs left, and so I will look for them. Otherwise I will try milk thistle and/or try to find a bupleurum combination on the Internet.

    Thanks again for your suggestion!
  3. Forebearance

    Forebearance Member

    Dear Lisa,

    Ouch, it makes me hurt for you to read your symptoms. You poor thing!

    Please remember that you are in control of this process. You can slow it down if you want to.

    The problem I have run into is, do I want to have a life or do I want to give up my life for a while to get well? And if I do give up my life, what is a reasonable amount of time to feel lousy before taking a break?

    I ended up deciding that getting well from CFS is such a long process that I wanted to do it slowly enough so that I could have a life at the same time.

    I can't really afford to be bed-ridden, since I must take care of myself. And also, I get the feeling, personally, that Herxing for a long time isn't so good for my body.

    I guess we all just do what seems best to us.

    I agree with dancing fingers that I rely on milk thistle to keep my liver function tests normal. I love the stuff. It has no noticeable effect. It just works silently to keep the liver happy.

    Love,
    Forebearance
  4. Slayadragon

    Slayadragon New Member

    I finally got around to reading your bio. Your version of this disease sounds as close to mine as anyone's I've seen on the board. It's interesting to compare notes, therefore.

    Did you get the "killer" flu when you first got sick? Is there anyone else in your family with this illness?

    At some point I made a list of all the treatments/supplements I've used. If I can find it, I'll pop it up to the top of the board and maybe we can compare.

    What is Corvalen?

    What has the l-glutamine been useful for? I took it for a while (I think I was experimenting with seeing if I could get rid of food allergies by healing what might have been leaky gut), but eventually put it aside. There has to be some limits, otherwise you really go crazy and broke.

    I think I may ease up on the Famvir a little this week and see what happens. I could stand a few weeks of feeling like this, but I am in it for the long haul and probably super herxing really _isn't_ good for the body.

    It's interesting to see how similar Jolie's progress on Valtrex has been to mine. Apparently this reaction is par for the course, but that doesn't mean I have to kill myself over it.

    Thanks for checking up on me!
  5. Mikie

    Mikie Moderator

    I'm so sorry you are having such a bad time of it. Yes, a high viral load can cause the whole process to be worse. As the viral load drops, though, it does get better. It appears that the Famvir is working, so that's a good sign.

    With the AV's and ABX, I would have a couple of days of an immune reaction and then Herx hard and fast and it would be gone until the next cycle. With the transfer factors, however, I was like you are now, day after day of feeling sick. I had to start out very slowly and work up. It may have something to do with the fact that the TF's I was taking targeted other things which the Famvir probably didn't affect.

    Sending up a little prayer to ease your symptoms. Thanks for keeping us updated.

    Love, Mikie
  6. cherylsue

    cherylsue Member

    I know exactly how you feel on the Famvir. Maybe, you need to back off a bit. I could only take it for 4 days. It is really strong stuff, and you don't want to go into toxic shock. Severe herxes are not good for you.

    My CFS began in May 2000 with the worst flu ever. I was hospitalized and ran an 103 fever for 10 days. I was a zombie. My brain was fried and I felt flulike and fatigued for over a year. I enjoyed a remission for 3 years. I relapsed with another febrile illness which triggered CFS for another year. Remission for a year. Relapsed again with another febrile illness. Currently, halfway to feeling normal.

    Remissions are possible. You will get there, too. However, just like diabetes, you have to be diligent and maintain your wellness. I had a tendency to be in denial and went about my crazy routine which seems to lead me into relapses. I guess I'm a type A personality.

    When you have "recovered" please take good care of yourself to maintain that recovery. I believe you will recover because you have researched and taken the steps to get there.

    Are you on Milk Thistle for liver support? Fresh squeezed lemon juice in water (daily drink) also helps flush things out - increases bile, I think. I always feel a little better after drinking it.

    Please call your doctor and let him know how you are feeling. I presume this is Dr. Guyer?? He may have some suggestions - cutting back on dosages. Don't push yourself through this because you may do more damage. Think gentle herxing.

    Sorry, my thoughts are random today. You are in my prayers.

    CherylSue

    P.S. Corvalen is D-Ribose. I take it. Haven't noticed in increase in energy due to it specifically, but I have noticed better muscle strength. My muscles are like jelly due to my being bedridden. Corvalen is also supposed to be good for the heart. I suppose if you had heart muscle damage because of the viruses, this might help you as well.
    [This Message was Edited on 11/20/2006]
    [This Message was Edited on 11/20/2006]
  7. deliarose

    deliarose New Member

    I know I need more sleep on the transfer factor than I did before.. but I feel better all the time.

    I'm wondering what happens to the virus that you are killing?

    Does the process of killing the virus generate some kind of cellular debris which you then need to esoort out of the body?

    As you can tell, I'm not a scientist, but I have read that the detox pathways in CFS patients is malfunctioning, and I wonder if this puts additional stress on those pathways/theliver and kidneys?

    If so, in addition to liver support, you may wish to consider glutathione. Maybe saunas would help too?

    I'm just thinking aloud. IT would be intersting to get the answers to these questions. Perhaps Jolie could ask her husband? Or someone could ask their doc?

    delia


    Wonder if glutathione
  8. Slayadragon

    Slayadragon New Member

    Everyone:

    Thanks so much for looking in on me. It is good to feel taken care of.

    I slept for about 11 hours last night and am feeling considerably better this morning. No symptoms except weak like a little kitten. I don't know how long that will last (probably until a few hours after I take another dose of the medicine), but I am encouraged.

    I think my new strategy will regard to getting through this herx is to follow the old "tuberculosis hospital protocol"---do nothing whatsoever except rest. I went out for about an hour yesterday, which I think was a mistake since I then slipped down from about a 3 to (for a few hours) a 1. If it goes on too long, obviously I'm going to cut back on the medicine since I can't do nothing _forever_. But for another week or two, I think I can manage.

    I kept telling myself "tuberulosis rest" when I tried to wake up this morning, and it worked pretty well. It's sort of a relief to think that the only thing you have to do is rest/sleep. Unfortunately I have to make a client phone call in another hour, but after that, I'm going to take another nap.

    I also will try to find those Chinese liver herbs and take some ImmunoPro Rx (for glutathione). And perhaps I will take a "half dose" of Famvir today, to see if going down briefly will give my body a break.

    I have a steam shower (which is just like a sauna) that I've been using every day since starting this. I don't necessarily feel better right after getting out, but it could be helping.

    I see that Jolie's husband (an M.D.) called the FFC and that they said to stop the Valtrex temporarily and come see them. Based on her post, she seems to be herxing harder than me. (She's using several new things at once, but I don't know what those other things do. She also took the full dose that they recommended at the beginning and altered up and down, whereas I took a half dose for a week before going up.)

    I would imagine that if I complained to my own doctor, he would suggest that I back down to half the amount I'm taking now (since I did okay on that for almost a week with only modest additional fatigue) until I could go up more comfortably. So perhaps I will do that. For today, anyway.

    Thanks to everyone for your help and suggestions. I really appreciate it!

    **

    CherylSue:

    I belleve that your dose of Famvir was 500 mg, but 3x per day, wasn't it? No wonder you felt like you went into shock, if your body is anything like mine (which, based on your case history, it sounds like it might be).

    Thanks for the info on the Covalen--it sounds like that might be useful once I get to the point of wanting to be active again.

    A question: when you go into "remission," what level (e.g. on that 1-10 scale) are you at? And when you relapse, is it because of something specific that you can identify (e.g. yeast) or just randomly?

    The CDC article identified two "types" of patients---those with drop-dead flu that never goes away, and those who get worse randomly and then fluctuate up and down. (Never mind that most people on this board don't appear to fit into either of these categories and that the people at the CDC are obviously not the best source of any information.)

    If you do fluctuate up and down "randomly," do you have any theories whatsoever with regard to why the relapses might be happening?

    Hope you're feeling well yourself these days.....
  9. deliarose

    deliarose New Member

    and keep us posted.

    I am on a similar treatment path ... I started on Transfer Factor Sept 1...and increased my dose this month.

    I feel slower and sleep more on the higher dose, but my brain loves it, and overall I am beginning to feel more normal.

    Not v. scientific, but I don'[t know how else to explain it. I think that I'm also begginning to sweat again after not sweating for I don't know how long...

    There's no question in my mind that I am killnig off a chronic stealth virus, and I just marvel that it took me so long to find a doctor who knew what he was doing.

    Which kind of raises the question: why aren't more of Dr Lerner's and Dr. Brewer's patients on here?

    Both these guys have been using antiviral medications for a long time .. they were around way before the FFCs..and yet I can only find 1 or 2 of their patients on this board (even in teh archives).

    Odd, no?
    delia
  10. deliarose

    deliarose New Member

    Lisa, if you're interested in raising glutathione, you should check out the article that Rich Van Konyenburg wrote on it, if you haven't already.

    Just google his name and glutathione.

    He says that using precursors like ImmunoPro puts glutathione into the liver, whereas the oral supplements (the liposomal liquids) put it in the blood and get it to the cells.

    I'm told it takes 3 months to see an effect with the undenatured whey.

    I've tried IV glut, and I feel an immeidate impact from that. My doc recommends that, and I get the infusions from a doc here in Chicago.

    The problem is the IVs are expensive, adn I suspect most of the money is going to the practitioner. I checked on the cost of the IV glut with a reputable pharmacy and it's reasonably cheap.. so I've stopped getting them.

    I hate being ripped off. NOw, if I could only find a doc who would Rx the IV glut and then find a nurse to come to my house and do the IV or even a IV push...then I would be in business.

    Any ideas welcome.

    Aslo, Cherylsue: I spoke to a woman, ( a researcher at a university here in Chicago) who has the same kind of relapsing/remitting CFS as you and she said she went into total remission with a product called Sterol 117.

    Unfortunately, the effects wore off after a year. She is now using ColdFX with some success.

    Cheers
    Delia
  11. Forebearance

    Forebearance Member

    Hi, Lisa!

    Yes, it does sound like our CFS is very similar.

    Yes, I did get the "killer flu" that never went away. At first I was so ill I couldn't get out of bed, or watch tv or anything, for two weeks.

    I was exhausted after that, and by the time six months had passed, I had all the diagnostic criteria for CFS. My illness is steady. It doesn't wax and wane or go into remissions. I have bad days if I overdo or don't get enough sleep the day before.

    No one else in my family has this illness. However, my sister did get Lyme disease.

    Yes, I remember reading your list of treatments and supplements. I haven't tried all the drugs you have, but I did a similar thing of just working my way through Dr. Teitelbaum's book and trying everything he suggested that sounded good.

    I have probably tried an equal number of things as you have, over the years! Ack!

    Corvalen is Dr. T's latest suggestion. It's a sugar that is good for the heart. The longer I am sick, the more I feel like my heart is getting weaker or deconditioned. I find that the d-ribose (Corvalen) is good for my muscles in general and helps me to be able to exercise more.

    Well, I'm taking L-glutamine on faith that it is good for my immune system. I haven't noticed any dramatic effects from it. I totally understand what you mean about how there has to be some limits.

    I can't take undenatured whey powder at all. It makes me too sick, even a tiny pinch of the powder. Now I have a whole box of it in my kitchen that I'll probably never use!

    I'm glad you're going to ease up on the Famvir.

    Yes, it is really interesting to read about everyone's experiences with anti-viral meds. I'm sure I would be Herxing badly on my Virastop if I hadn't cut back on it.

    Love,
    Forebearance
  12. cherylsue

    cherylsue Member

    Forbearance: I agree with you regarding the undenatured whey. I've tried it during two different CFS bouts and it make me so sick. Even just on one dose. Like you, I herx easily on different natural and RX treatments. I've learned to accept small herxes, but big herxes no way. Lauricidin (monolaurin) was also a big no no for me.

    Lisa: You may NOT want to try the ImmuneProRX with your Famvir. I would expect a major herx readtion.

    Hot showers for pure CFS'ers are a no no, according to Dr. Charles Lapp. They increase cytokine production. We are encouraged to take tepid baths or cooler showers. Only Fibro's seems to benefit from steamy baths. I tried that EPSOM salt bath recipe one time, and I felt worse.

    Regarding my relapses, I get brief warnings weeks ahead, a feeling of unease, malaise, fatigue, etc. I usually pushed right through them. If I slowed down and rested, it would go away. Eating sugar and chocolate I think made my viral load go up. So does long term stress ( I have an elderly and sometimes sickly parent.) I never changed my lifestyle in remission. Also, I have trouble sleeping through the night since my first bout in 2000. The sleep situation was never addressed properly. I often wonder if Klonopin would help, but I don't know a doctor in this area who would prescribe it. Too much monitoring and paperwork. I've had two sleep studies done with no results.

    Delia: Thanks for the info on Sterol 117 and Cold FX. I don't know what they are, but will check further.

    Transfer factors only work on limited viruses and take two years to work. I don't think all our viruses are identified yet. Perhaps, research will come up with a better diagnostic tool. I suspect a great deal of herxing is involved with Transfer factors, and most people give up. I shy away from them for that reason.

    Jolie: I think they put you on too much too fast. I've noticed Dr. Teitelbaum and the FFC's tend to do that. I really think Ken Lassessen (sp?) and his For What It"s Worth protocol is on to something. There are stages of preparation and if herxes are too strong, treatment is pulled back and resumed later in smaller amounts. I just can't believe strong herxes are good for the body.

    To All: I guess I believe in the DO NO HARM theory. If something makes you feel better, continue. If it makes you feel awful, stop, and try again separately to more times. Three strikes, it's out.

    If something does nothing, try it for a few months and see if it makes a small difference.

    It's all trial and error. I've noticed one man's meat is another man's poison. It's probably because we have different pathogens and body chemistries.

    Good health to all.

    CherylSue
    [This Message was Edited on 11/20/2006]
  13. Mikie

    Mikie Moderator

    There are rare instances where people have gone into a toxic-shock-like situation from Herxing too hard with too many toxic pathogens in the system. It is rare but it happens. It happened to Tansy.

    I Herx pretty hard and usually get over it pretty fast but when I was on the transfer factors and Heparin, I had to slow things down. I couldn't tolerate it.

    Love, Mikie
  14. Slayadragon

    Slayadragon New Member

    Delia:

    It's interesting how many comments I've heard about transfer factor since I've been taking the av. I had absolutely no effect the one time I took one (and it was very expensive too, designed to target the CMV that came up on a lab test as well as other viruses). I'm inclined to look into them again, after I see what happens with the av. Maybe it would be a good adjunct. (Although trying that at the _same time_ as the AV---which is what the FFC recommended Jolie do---sounds rather like living on the edge to me.)

    i actually am surprised at how few classic CFS patients there seem to be on here in general. Maybe the high percentage of fibro and OT posts drove them away when they first checked in. And, I've been buying supplements from the store, getting their catalog, and reading archived articles for years....and yet never knew this board was here until a couple of months ago!. Maybe now that people are trying something really new, we need better marketing. I'd love to hear from other people who are actively targeting viruses in one way or another.....and it seems that most people doing this would, like me, have a real need for hearing other people's experiences right now.

    That's very interesting about ImmunoPro helping the liver and the liposomal glutathione putting it into the blood.

    The success I've had with immunoPro has been with detoxification. For instance, when I've been taking certain medications that left a bad taste in my mouth or had other minor side effects, I've been able to get rid of them entirely with the ImmunoPro, and within a couple of days. The fact that it was acting on the liver thus makes sense. (I'm pretty sure it's never given me energy, btw.)

    On the other hand, about a year ago I got a bottle of the liposomal liquid and took almost the whole thing. No response whatsoever, as far as I could tell. What do you imagine it theoretically does after it gets to the blood and then the cells? (I would look this up but am too tired. I'll do so eventually.)

    Forebearance:

    The stuff on that list is about 1/10 of the stuff I've tried, I think. One year I sampled 40 prescription drugs alone. Of course, for a while I was working on my manic-depression---acquired a year before the CFS as a result of a head injury---as well as the CFS. (Thank God that's totally under control now. One disease down, one to go.) And my doctor has always had as many new ideas as I've wanted to try. He seems much more optimistic about the anti-virals than most things, though.

    My muscles are deteriorating, I think. When I was first ill, I could walk or bike pretty long distances (granted, crashing energy-wise the next day....). If I started to feel better in general, anything to build muscles would be especially welcome. I will certainly look into Corvalen in any case, eventually.


    Forebearance and Cheryl Sue:

    It's so weird to me that people get herxes with ImmunoPro. I've never gotten anything like that. It's always just felt really healthy to me. I wonder what the theory is.

    I did take some earlier today, and maybe this was a good thing if it's helping my liver. A couple of people earlier suggested that liver support is good for detoxification in general. I doubt I'd have a bad reaction to any liver-supporting herbs, but not taking something new at this moment seems a conservative move. Anyway, I'm pretty sure the ImmunoPro hasn't done me any harm today.


    Cheryl Sue:

    Klonopin has been one of the best things I've done for myself. I wonder if Dr. Papernik would prescribe it. He expressed no surprise at my taking it, and it is prety commonly used in CFS for this purpose. The last I heard he was booked up in his Skokie office until January, though. Chicago may be better. If you schedule an appointment, be sure to let me know so that I can send him that viral/immune panel that he asked to see. I found it to be really enlightening and makes me quite sure that anti-virals (maybe _any_ anti-viral) are the right thing for me.

    I strongly agree that many (or maybe most) of the viruses that plague us likely haven't been identified yet. If transfer factors only cover some viruses, then it seems to me that they might be useful but not wholly effective. On the other hand, it's my impression that the anti-viral pharmaceuticals (as well as that Virastop) kill all sorts of viruses, including ones other than those that they're "supposed" to. I need to look into the theory more, though. My knowledge of how the immune system works is woefully deficient thus far, I'm sorry to say.

    Based on my experience controlling yeast, it seems that herxing is the nature of the beast. (And to think that I'd never met a layperson---or many doctors--- who had even heard of that word before I came on this board!) Getting as sick on it as Jolie seems to have (I feel really bad for her and hope she's feeling better) couldn't possibly be good,, though.

    I'm allergic to lemons and other citrus, unfortunately.

    i agree that hot showers in themselves make me feel considerably worse. However, if I follow a warm/hot shower (or steam bath) with a cool rinse, I usually feel very good. Go figure. The steam baths, at least a couple of times a week, feel very good to me with regard to detoxification (which I think is of some importance even though it's not my main problem). Whether the steam shower useful for removing dead _viruses_, I haven't a clue. Not overdoing it at this time (e.g. no more often than once every several days) seems a conservative strategy, I think.


    Mikie:

    I don't think I've asked you this before. What dose of Famvir were you on? Did you work up to it or start at the full amount? How long did you herx for?

    Is Tansy still on the board? Toxic shock sounds very bad....I hope she recovered quickly.


    Thanks to all for your comments and support!!!
    [This Message was Edited on 11/20/2006]
  15. Slayadragon

    Slayadragon New Member

    Monday, November 20
    Famvir--Day 14

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug

    It has been about 36 hours since I took my last dose (500 mg) of Famvir. I now am feeling pretty much perfectly fine. I even cleaned the kitchen and made a little dinner. This is progress!

    I slept for almost 11 hours last night. I then had a phone call with a client for about 45 minutes. It went better than expected, but I did have to push myself to get into the confident and convincing tone needed.

    My husband then launched into a description of Russian vs. French vs. American vs. Italian styles of ballet, and how successful tying this topic to marketing/management issues had been in his talk yesterday to a bunch of Arab journalists. (Constantly watching ballets on TV is his new hobby. And yes, I am pretty sure after 20 years together that he's not gay.)

    This was an interesting discussion, but after about 30 minutes of it, I felt totally worn out. For some reason, listening to any sort of talking (or singing) really is exhausting on the Famvir. That's strange, since I've never had this symptom at any other time in my entire illness.

    I then slept for about two hours and woke up feeling much better. At present, I feel almost totally normal for me (maybe a 6). I still have a bit of a headache and have decided to give my body a break before resuming the drug tomorrow.

    I had two servings (two scoops each) of the ImmunoPro Rx. My gut feeling is that it was helpful.

    I am extremely glad that the drug reaction (it seems clear it was a herx) went away so fast. That's not been my experience with yeast herxes. I feel much more in control this way, which is a very good thing with regard to being able to plan my life.

    I'm also really glad that I made a big effort to clean out as much yeast as possible from my digestive tract (I took about five weeks) before starting on the Famvir. Fighting viruses and yeast at the same time (or fighting viruses and just _having_ much yeast) would be a very bad thing, I think.

    The other good thing about my day was that I found that the Baker's Square near my house now makes apple pie with no sugar or artificial sweetener (neither of which I ever eat). I think they even will make other such fruit pies upon request. Of course, the pie does have white flour, which is bad for keeping yeast at bay. But having this pie available for a special treat for certain days (like today) is a very nice thing.
    [This Message was Edited on 11/20/2006]
  16. Mikie

    Mikie Moderator

    I've since switched to the Acyclovir because the Famvir is too expensive and my Part D ins. doesn't cover it. It's like $265 a month. It was just a normal dose twice a day. I didn't work up to the dose; I just took it. It was actually given to me as a preventive prior to facial surgery. I started to have an immune reaction, which lasts a day or two, and then I Herxed like crazy for 24-48 hrs. That was a clue to my doc and me that I had some kind of chronic viral infection(s). So, he started me on it full time for a while until I started to pulse it.

    Funny thing--my mycoplasma Herxes cause my torso to burn and that is how I know it's the mycoplasmas. AV's, on the other hand, cuase my torso to chill when I Herx. I can actually tell the difference. On a couple of occasions, I've taken the Doxy and an AV together and when I Herx, it will cause both the burning and chilling. When I first took the transfer factors, the first two Herxes also gave me the strange feeling that I had ashes in my body. I could actually feel whatever it was. TF's target more than the ABX and AV and I guess there was some kind of dieoff that was different. It could have been HHV-6 because AV's barely touch it but the TF's are quite effective against it.

    It's been six years since I started down this path of treatments which are more mainstream today. My doc and I did one thing at a time as we heard about new treatments. Taking the AV's was totally a fluke and now, I read that a lot of docs are using them for our illnesses. I read, "The Virus Within," and realized that a lot of us suffer from HHV-6 and that it is probably the most virulent and resistant of all the Herpes Family of viruses.

    Over all this time, I have gotten to know how my body reacts to the treatments. It's good you are keeping a journal and sharing it with us. I kept daily notes and my vitals for a while with each new thing but I haven't kept them nor can I remember some of the things, like the Famvir dose :)

    Like everyone who desires great success, I had to become totally immersed, and even obsessed, in my research and treatments. It's not something one can do half-heartedly. The problem is that while I was making progress physically, I was starting to overidentify with my illness and losing track of who I am. I got therapy to learn how to let go a bit and how to be a healthy person again. Now, I identify as someone who is really healthy and healing all the time.

    My latest setback is just a bump in the road. That I have been able to recover from relapses just increases my respect for my own healthy body. I see this all as a challenge and one which I am convinced I am overcoming.

    BTW, I'm not quite out of the woods yet. I had an upper molar start throbbing on Sun. afternoon and the gum was swollen above it. I saw the dentist yesterday and I have to have a root canal. The endodontist can't get to it til Dec. 12th unless there is a cancellation. Til then, I'm on the Doxy and ibuprophen. The tooth has probably been making me sick alongside the gb all this time. Well, at least, when the root canal is done, it shouldn't bother me any more. These are things which can be fixed. I am hoping that this is the last of the physical problems which have stood in the way of my progress. Oy! It's always something.

    Love, Mikie
  17. cherylsue

    cherylsue Member

    Lisa: I'm glad you are feeling better, and perhaps, can enjoy your Thanksgiving.

    Mikie: I'm sorry you have another surgery to face. Hopefully, you'll be as good as "new" soon.

    Hugs to all,

    CherylSue
  18. Forebearance

    Forebearance Member

    Hey, Lisa!

    I'm glad you're feeling better! And that you can feel a good effect from the Famvir! That is really great news.

    My, you have tried a lot more stuff than I have. I didn't try many things for the first few years I was sick. I guess I was under the impression that it would run its course and heal on its own, like mono or something. This was before Dr. T's book was even published.

    I'm glad you took a liver support supplement that you know helps you.

    Your husband is funny! :)

    The pie you found sounds lovely!

    Yeah, I'm glad I took Candidase for a month, to clean out yeast, before I began the Virastop.

    Congratulations on sticking with your program and taking the reins on the dosing.

    I totally agree with you that we really have to be our own advocates when it comes to our health. Because doctors are busy and they're only human. I research everything a doctor tells me to take, too. I've had doctors prescribe me things that would have done me serious harm (like a massive overdose of thyroid).

    I know it's not intentional. They just don't know me as well as I do.

    I have a really cool doctor who doesn't know anything about CFS! lol No one in my town does. But she is great at working with me instead of dictating to me. She lets me try anything I want, as long as she thinks it won't hurt me.

    I hope you feel good for Thanksgiving.

    Forebearance

    P.S. Thanks for the hug, CherylSue!
    [This Message was Edited on 11/21/2006]
  19. Slayadragon

    Slayadragon New Member

    Mikie:

    That's interesting that mycoplasmas are such a big deal for you. I've only had them come up on test results once, but they certainly could be hiding from us.

    It's also very interesting that you can feel different die-off reactions from AVs and Transfer Factor and ABX. We get to know our own bodies very well, it seems.

    I will look for "The Virus Within"....I'm guessing it's a whole book?

    Did you notice a substantial difference in effect between the Acyclovir and the Famvir? Tam on this board tried a high dose of Acyclovir briefly....she said she felt great for two days, then flamed out and gave up on the drug completely. I was a bit sorry since I would have liked to have seen her experience, had she started slower and given it more of a chance.

    I would like to figure out if the "Gulf War" syndrome is the same or different from the types of CFS mentioned in that CDC report (i.e. the killer flu that never leaves and the get-better-then-relapse kind). They certainly have a lot of the same symptoms and respond to the same treatments, but that doesn't necessarily mean the initial cause is the same. I wonder if that matters.

    I recall two potentially significant events in the 18 months before "getting" CFS: a head injury and a series of hepatitis shots. (The bipolar--since "fixed"--resulting from the head injury was stressful too.)

    Vaccines seem not as innocuous as they once were thought to be. That's scary about the apparent cause of your illness. It's sad to think that more people will get sick as time goes on, if things continue in the way that they seem to be going.

    I tend to think that my illness is purely genetic and that I would have gotten sick eventually regardless of what I had done. In a way it was sort of a relief to see the genetic testing results showing that my immune system has significant innate problems, since I feel like it sort of absolves me from bearing the blame for not taking good enough care of my health. (Stupid, isn't it?) Not that there weren't triggering events, but I think everyone has some kind of potential trigger at some point. It just doesn't hit everyone as it did me.

    I sort of hope that if I can knock out some of the viruses and all of the yeast with supplements/drugs, my wimpy immune system will be better at taking care of whatever is left (e.g. the HHV6, if it really is drug resistant). That may be a pipe dream, though. One step at a time.

    Forebearance:

    The doctor you have who is willing to let you experiment with different medications as you both see fit (rather than acting as an expert or giving up) sounds very cool indeed. She sounds like an especially good match for you, since you're pretty conservative about this in general. It seems like you're making gradual progress towards getting better, which is a good thing. Probably I'm a little too impatient for my own good.....

    Everyone:

    Thanks for your support. I hope you have a good holiday.
  20. Slayadragon

    Slayadragon New Member

    Tuesday, November 21
    Famvir--Day 15

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15: 500 mg

    I had a really good day today! Maybe an 8, which is a bit higher than I would expect on an average day (when I was well-rested and didn't push myself). Considering how bad I felt just 36 hours earlier (I was down to about a 1 or a 2), this seems like real progress.

    I'm not absolutely sure that the drug is making a positive difference, but I'm certainly relieved to have recovered from the herx so quickly.

    I've decided that since I don't have any commitments this week, I'm going to spend the whole time resting and killing viruses. I'm not going to push it until I get back down to where I was on Sunday, but making as much progress as I can now would be a good thing.

    I do have some commitments next week. It would be nice if I were to stop herxing by then; otherwise I will have to ramp down my dosage temporarily.

    Thanks to all for your support!