Famvir Status Report Week Eleven

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jan 28, 2007.

  1. Slayadragon

    Slayadragon New Member

    Sunday, January 28
    Famvir--Day 83

    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 67-83: 500 mg

    My cold from last week seems to be over--just a little residual congestion left over. I was still feeling sort of weak in the morning, which (I dimly recall from over a decade ago when I still got colds) actually is not unusual for a generally healthy person when recovering from a very bad cold. So I think I'm doing okay.

    It occurred to me today that perhaps I haven't gotten any colds during my illness because every time a cold virus attempted to enter my body, my immune system surrendered and let it go ahead and come in. (Apparently my immune system has much bigger fish to fry than the common cold.)

    If that's the case though, that would mean that I would likely have a total of at least 22 cold viruses to get rid of. (Adults average two colds per year, and I've been sick for 11 years.) If each lasted one week, and they came right on top of one another, that would be approximately five months' worth of colds. Argh!

    Although now that I think about it, Forebearance has managed to have cold symptoms all the time for three months now. I wonder if she's getting rid of many colds rather than just one.

    Meanwhile, the fact that I am still herxing on just a low dose of Famvir is very perplexing. I haven't even added natto or transfer factor yet. Apparently I have more viruses than anyone else on the planet.

    (Except maybe Jolie. If she goes back on a Valtrex/Famvir drug at a moderate level (500 mg Famvir=1300 mg Valtrex) , I wonder how long it would be before she stopped herxing. It would be an interesting contest.)

    Meanwhile, I continue to be perplexed by the number of people rushing to go on to Valcyte without taking care of what I see as the fundamentals of CFS (endocrine system, yeast/gut, food allergies, sleep, nutrition). It's not like info about these topics is not commonly available either. I tend to think they're setting themselves up for a disappointment and perhaps making it seem like Valcyte has less potential than it actually does.

    I tried taking 1 gram of ribose last night and 1 gram this morning. I can't recall how much other people on the board say they take. I don't know whether it's been any help (recovering from my cold is a confounding variable), but it doesn't seem to have caused any problems. I will continue to pursue for a bit longer, therefore.

    For the last two nights, I've taken a bottle of that frozen adrenal/mesanchyme/thymus gland stuff. (This one is Molecular CF, but from what I can tell Atrium/Douglas has a number of similar products that go by different names.) It may help. At $10 a bottle it's on the expensive side though. Still, especially since I'm getting the antivirals for next to nothing through insurance, it's worth putting money into things that will help me get through the process. I'm not sure about the Nexavir stuff though.

    For those who are interested, here are the key words to google a person with a blog who is giving Valcyte a try. I will be interested in keeping up with her progress, since I haven't read case stories of many people who have taken the drug yet. That should change tremendously over the next six months, of course.

    "learning to live with cfs" "sue jackson"
  2. Forebearance

    Forebearance Member

    Hi, Lisa!

    Yes, I would say that when your mucus gets thick and crusty, you are getting over the cold. (sorry to be gross) So that is great!

    That's an interesting theory you have about kicking out 11 years' worth of cold viruses.

    I'm actually not perplexed at all that you're still herxing. It seems totally fine and normal to me. You've been sick for 11 years! Your body has its own healing path to follow, and you've got to respect it. And work with it.

    I get the feeling that the more you herx during the process, the more recovery you will achieve at the end of the process.

    It seems smart of you to start the Corvalen gradually, since you have yeast concerns. I take 15 g a day, in three servings. At first I took 10 g a day. The first few weeks I felt a big positive effect from it. Then the effect wore off. Now I have to take 15 g to feel any difference. I think it still makes a positive difference, but it is not dramatic. (But maybe if I stopped taking it, I'd notice!)

    I read that blog of the woman who is starting Valcyte! It will be interesting to follow her.

    I do wonder what will happen next to all of us. :)

    Love,
    Forebearance
  3. cherylsue

    cherylsue Member

    Have you talked to Dr. Guyer yet? What is his take on your cold? I'm glad you are questioning the timing of the Valcyte. I think you need to adjust to the famvir first.

    Best wishes.

    CherylSue
  4. Slayadragon

    Slayadragon New Member

    Monday, January 29
    Famvir--Day 84

    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 67-84: 500 mg

    I spent the day alternating between sleeping for periods of a couple of hours and then about 1/2 hour awake. I didn't sleep that well when I was sick with that cold, and so it seems to be a good thing.

    I took ribose last night and this morning, but I still don't know if it's having an effect. Could it make me sleepier? I mean, in a good way? That doesn't sound right, but you never know. Sometimes giving your body what it needs results in strange things.

    I've found myself feeling more irritable than usual with a wide variety of people, and then bad about feeling irritable. Undoubtedly it's all from fatigue.

    I honestly don't think I'm in that bad of shape though. Even with the Famvir at this point, I well may be at a higher level of functioning than about 3/4 of the people on this board.

    Or maybe 3/4 of people with "real" CFS in general. ( I bet there is a big segment of the population with mild CFS who have no idea that they have a problem, but would benefit from our treatments anyway. It will be interesting to see as the disease becomes more well known.)

    Anyway, probably it comes across in these notes that I'm worse off than I am. I'm monitoring my symptoms minutely, in part for fellow travelers who come this way and in part for my own record (in case I do detail them in a book at some point).

    For a while when I was herxing, my skin became pretty red and blotchy. Now it's back to normal. I do have a number more gray hairs in the front than before I started the AV though.

    The feverish feelings that I associate with herxing seem to be dissipating too.

    So I think that despite being worn out at the moment, I'm actually doing reasonably well and perhaps getting to the end of the line with this bout of herxing. The natto will undoubtedly create some more, but maybe it won't last too long.


    [This Message was Edited on 01/29/2007]
  5. Slayadragon

    Slayadragon New Member

    How long did you take Famvir?

  6. lavender14

    lavender14 New Member

    can I ask what your taking famvir for? and at what dosage?
    I am holding off taking it for now till I have more info. to go on. Dr at CFS ctr. wants me to take it for EBV reactivation. Or I can wait to see if it improves with all the hormone therapy.

    I also take 15mg corvalen-m 5mg 3xaday. I have noticed sifnificant imprivement in fatigue.

    jennie
  7. Slayadragon

    Slayadragon New Member

    Read my post "A Stratigic Plan for Getting Truly Well (with Valcyte etc.)". I believe it is on the first couple of pages of the board right now.

    Best, Lisa

  8. Slayadragon

    Slayadragon New Member

    So how much did you improve after your long stint on Famvir?

    How long ago was that? Have you seen any improvement since you finished it?

    Best, Lisa
  9. Slayadragon

    Slayadragon New Member

    Tuesday, January 30
    Famvir--Day 85

    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 67-85: 500 mg

    Not a good day.

    My head hurts a lot. I came the conclusion last week that this is a symptom of detoxing, but I haven't done anything recently that can imagine would be promoting this, Maybe it's just simply more dead bugs.

    My system is still throwing off the last "cold" and seems to undecided with regard to whether it wants to battle another one. I've put in a request for a delay. We'll see whether it listens to me or just goes on and does what it pleases.

    (My husband shows no signs of catching that "cold," by the way. That lends credence to the theory that it's a virus that's been hiding in my body for years--and that he battled long ago--rather than a new one. A scary thought, isn't it?)

    My mother's legal case dumped another huge amount of stress on me today. I was feeling bad before that, and worse afterwards.

    I have come to the conclusion that it's time for me to bow out of the whole thin. I therefore wrote letters to her and to the attorney stating that I was going to remove myself from it for health reasons. (Telephoning my mother with the news and having her express upset about it is the last thing I need.)

    The case is far enough along that they should be able to work on it together without my playing middleman. And it's time for my family members to start handling their own affairs rather than getting me to help with them anyway. I don't know whether I'm better at such things than they are (which is what they believe), but the toll that it takes on my health--even when I am not as sick as I am right now--is just too much.

    Oddly, I feel like I'm not really herxing on the Famvir right now. I'm not getting any feverish feelings, for instance. Rather, I think it's my own immune system that's weighing me down. Of course, I could be wrong.

    If I'm not wrong, I guess the fact that my immune system is taking care of more stuff is in theory a good thing. In practice, it's quite wearing.

    Then again, nobody ever implied to me that getting well using AV's was going to be in the least bit easy. Keep repeating: It could be worse, I could be doing Montoya's protocol, it could be worse.......

    If I continue at this level for another week, maybe I'll try adding the natto. Perhaps if I start killing some of the herpes viruses that are now hiding in the fibrin, my own immune system will put attacking the common cold viruses floating around my system on hold. The herpes viruses seem a higher priority to attack, if I do so in a gradual way. I think so, anyway.

    We'll see where I'm at next week. Meanwhile, I need to get up at least enough energy to pay the bills. Hopefully my body will grant it to me.

    (And no, my husband cannot pay the bills. It is outside of his range of capabilities, and he is extremely busy at the moment anyway.)


    **

    Okay, now this is scary. I'm feeling a sort of a band of pressure across my chest, or more specifically right in the heart region.

    It could be psychosomatic, though. I've never known myself to have psychosomatic symptoms before (my husband admits himself that he has tons of them), but people have been talking about heart viruses so much recently that it's possible.

    Another possibility is that the antiviral (or my own system) is trying to kill off a heart virus. My doctor says that killing viruses exaggerates symptoms during the process. That would be a good thing.

    Or maybe, coincidentally, my heart has just now started to go haywire. That would be a bad thing.

    Or it could just be something like indigestion.

    I swear that I've never experienced this before, though. That does not mean it's not psychosomatic though.

    [This Message was Edited on 01/31/2007]
  10. cherylsue

    cherylsue Member

    You deserve a big HUG! You are certainly correct in postponing or deferring your mother's legal problems. I can relate to you in so many ways. My mother relies on me as well for so many matters. It can be very fatiguing normally, but even more so with CFS. Also, no matter how ill I am, I am the one who does the finances, taxes, bills, etc. My husband hasn't had to do them in years. I guess you can say you and I are overachievers.

    It sounds like you have the cold I had. Just when you think you're getting better, it comes back. It took me over 3 weeks to kick it. I think it's gone, but who knows? Try a saline nasal spray, fluids, cool mist vaporizer, and proboost. This, too, shall pass.

    I was feeling more chipper and went on a few outings with my mother and daughters the last few days. Today, I crashed. I never got out of my pj's. My husband gave me a scolding. He said I'm on a medical leave and I should be resting. He also wants me to get better so we can go on vacation sometime this year.

    I am going stir crazy in the house. Cabin fever. My daughters did all the driving, but I didn't get a chance to rest during the day. The third day (today) it hit me.

    Next Tuesday I am going to order the Nexavir. The weather is supposed to warm up a bit. I like Dr. Cheney's protocol, and maybe, even some of Dr. De Meirleir's from the little I've heard.

    From what I've gathered, I'll never be 100% again. That's a bit discouraging. Dr. Papernik said I could get to 80%. I hope I can at least achieve 90%.

    What level does Dr. Guyer think you can reach? Has he given you a timetable? What do you hope you can achieve?

    You must be going stir crazy, too. Try to focus elsewhere for awhile on something pleasurable. Take your klonopin. etc.

    Hopefully, by this summer you will be feeling much better. Hang in there.

    Hugs,
    CherylSue

    P.S. Someday when we both are well and in remission, we should meet halfway for lunch. [This Message was Edited on 01/30/2007]
  11. Slayadragon

    Slayadragon New Member

    CherylSue--

    Actually, you've hit the nail on the head with regard to what's been getting to me emotionally so much over the past week or so. I was thinking of this about an hour ago.

    Prior to hearing about the Montoya study last summer, I had absolutely no hope that I would ever get beyond 60-70%. I had tried everything I could find, and yet had remained perfectly static for more than eight years.

    After I got my ImmunoSciences test back and my doctor stated that he thought Famvir/Valcyte would help me, I had some hope that I would improve. Any improvement was welcome.

    But then, about a month ago, several things happened:

    1) My doctor made it clear that he thought I was going to get wholly well, to the point of encouraging me strongly to write a book about my experiences after that happened

    2) I spent time with my friend's mother, who used to be extremely sick with CFS and now--after having continued under my doctor's care and used an antiviral-- is wholly well (10+++)

    3) I had a huge amount of response to the Famvir, thus making me believe (and my doctor strongly concur) that the AV's were the missing puzzle piece for me

    4) I learned a whole lot about the immune system as it relates to CFS, and started to believe from a theoretical point of view that getting wholly well was possible if approached in the right way

    So this is really stupid, but my problem now is that my expectations are really high. This means that I now am anxious about those expectations not being fulfilled. (Sort of like interviewing for a tenure-track job at Harvard Business School and then worrying about whether I was going to get it. If indeed I wanted to work at HBS, which actually would be one good representation of hell. But you get the idea.)

    I have been trying very hard not to let my expectations be high and to be happy regardless of what happens (e.g. even if they go back to 60-70%), but my emotions seem to have gotten out of hand.

    At this point, reminding myself that I may not get any better makes me upset. Like I would have felt if, while in my Ph.D. program, I had constantly reminded myself that I might not get any decent job and then would have to live in a cardboard box on the street.

    (And the more I hear about the damage that viruses do to people and about "advanced" CFS patients starting to get worse, the more the extremist "cardboard box" metaphor seems not to be an exaggeration at all with regard to what will happen to me if the drug doesn't work.)

    Upon reflection, maybe I should stop thinking about how this isn't going to work and allow myself to be hopeful. There actually is research that says that even totally unwarranted optimism is a good thing for people's physical health. And if that is the case, then it seems like not damping down optimism that is at least somewhat warranted would be a good thing too.

    I'm not used to protecting myself from disappointment, and perhaps it's best that I stop doing so here.

    And so---okay.

    My doctor thinks that I'm going to get totally well. (He did warn me that, since I have an innately weak immune system, I should take care not to stress myself too much after I do get well.)

    At our last meeting, his belief was that by the end of April, the root cause of my illness will be taken care of by the AV's and my immune system will be working again. He suggested that after that, it would take a while for my immune system to get rid of all of the bad stuff (viruses, bacteria, etc.) that had invaded, but that I would gradually get better and better over time.

    I hope I will achieve 100% of what a normal person's life is like. This means easily being able to do 40 hours of week and having an active life outside of that, and of course not having relapses. I also want to get the missing parts of my mind back.

    (I do not expect to get back to being able to work 100+ hours a week on heavy academic lifting and other stressful activities, which is what I did throughout my adult life before I got sick. Even if I could do that, I wouldn't want to, and so not achieving that level of functioning will not be a disappointment.)

    Going stir crazy is my other problem. The idea of stretching this out for more than three more months is not a happy one, which is the main reason that I keep wanting to kill viruses at a relatively rapid rate (if still at about 1/4 the speed of the Montoya protocol). I would keep doing this for as long as it takes, but I'd really rather get through it.

    Yes, for a person who does nothing, I do an awfully lot. Apparently you do also. Breaking old habits is very hard no matter how hard i try, unfortunately.

    The one advantage that I do have over you right now is that I know (or at least believe) that if I stopped taking the drug for a while, my health would pop back to where it used to be and I'd be able to go back to my old health level (i.e. being able to do 4-6 hours of normal activities per day).

    That's psychologically reassuring, even though I'm determined not to do that unless absolutely necessary (i.e. go see the doctor). I'm not a huge believer in considering avoiding resistant strains to be utmost importance, but not giving them more of a chance than necessary to develop seems a good thing.

    I am looking forward to hearing about the Nexavir. I wish I knew more about what it would do for me, but waiting another month to ask my doctor isn't that long.

    Lunch would be great!!!


    dncnfngrs--

    I fear that I am whining too much in these posts, if everyone is this afraid that I'm going to relapse. I'm really not doing that bad....more sick of being sick than anything else.

    I have to say that having people think I'm sicker than I am is quite a change of pace for me. Usually I don't complain about my health at all.....which, of course, is why people think I have so much energy to take care of their problems for them. Argh.

    I have doubts whether these are colds either. But the fact that Forebearance is dissolving her viruses with enzymes (and that her cold was really similar to mine) makes me wonder. What could hers be?

    Could it be a herpes virus? Herpes viruses are not usually active, and I don't think that enzymes can get at them when they're hiding in cells replicating.

    Could it be PIV-5 or an influenza virus? Those are enveloped, which makes them resistant to enzymes. Forebearance says that some people say that the enzymes can dissolve the little protein feelers that stick out of the envelopes, but this does not seem very efficient. (Or perhaps it would cause half-dead angry viruses? That does not sound fun.)

    Could it be common cold viruses? Cold viruses do not hide very well and are not enveloped, which makes them a good suspect. But I will admit, these are nasty colds.

    Could it be another type of virus? Absolutely. What it would be, I haven't a clue.

    Do you have any thoughts?

    ***

    Okay, now this is scary. I'm feeling a sort of a band of pressure across my chest, or more specifically right in the heart region.

    It could be psychosomatic, though. I've never known myself to have psychosomatic symptoms before (my husband admits himself that he has tons of them), but people have been talking about heart viruses so much recently that it's possible.

    Another possibility is that the antiviral (or my own system) is trying to kill off a heart virus. My doctor says that killing viruses exaggerates symptoms during the process. That would be a good thing.

    Or maybe, coincidentally, my heart has just now started to go haywire. That would be a bad thing.

    Or it could just be something like indigestion.

    I swear that I've never experienced this before, though. That does not mean it's not psychosomatic though.

    I'm going to add this to my status report, since I should at least have a record of when it happened.

    Maybe I should look into that impedance test too. If I just had more energy to pursue it....

    Thanks much for the support!!!




    P.S. Getting my viral level way down (eg. as measured by Intereferon Alpha) so that I in theory have a lower chance of getting cancer or heart disease or some other weird illness at an early age is another important goal, I think. Upon reflection, that's perhaps even more important than feeling better on a day-to-day basis.

    [This Message was Edited on 01/31/2007]
    [This Message was Edited on 01/31/2007]
  12. cherylsue

    cherylsue Member

    Get an echocardiogram to reassure yourself. I just had one, and they're painless. You just lay on a table. No treadmill test, however.

    I used to get funny feelings in the chest area a few months ago. That's why I asked my doctor for an echocardiogram. I wanted to make sure the virus hadn't affected my heart. It's okay, but my blood pressure is not. I'm scheduled to wear a 24 hour blood pressure monitor cuff.

    Also, it could be stress. When I'm under a lot of stress I feel it in the heart region. I think you may be too stressed out. Remember, this, too shall pass.

    I enjoyed reading your previous post. I think you are pretty courageous, and I wish you well. I'm a pussy foot, so I'm going the least agressive route with the Nexavir. I'm not fond of herxing. I'm also going to retry the Epicor. It's a new product, and I think it will get more publicity as research and patients try it. It's for the immune system in general.

    I am emotionnaly fearful that I will relapse again and again. I'm terrified of living this kind of life. Will I be able to work again? I can't avoid stress. It's an inevitable part of life. What can I control? Diet, sleeping, activity? Maybe, as my life and immune system comes online again, I will have more confidence. However, I had neither cold nor flu last year while I was working at my school, yet I succumbed to a reactivation in July. It's the virus hiding out within that needs to be repressed.

    Although the ProBoost had helped in the past, I think my body and viruses have adjusted. Antivirals lose their potency after awhile, too, and need to be rotated. I had copied one of Stormyskye's post that mentioned rotatating natural antivirals, but I think this applies to all antipathogens. Those critters mutate. That's why I think the Nexavir might help. Dr. Papernik had said that kutapressen lost its effect over time. Dr. Charles Lapp had mentioned in the article to take B-12 and kutapressin to get over the hump during a relapse.

    This is a forever battle, but I pray you have a remission. If you need Ampligen in the far future, that may be available in pill form for you.

    Hang in there. I know it's tough.

    Hugs,
    CherylSue
  13. cherylsue

    cherylsue Member

    Are you sure it isn't just stress?

    CherylSue
  14. Slayadragon

    Slayadragon New Member

    Wednesday, January 31
    Famvir--Day 86

    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 67-86: 500 mg

    No heart-related feelings today. I will continue to keep an eye out though. Nothing that Dr. Guyer can do via long-distance, but I have a good internist here who I believe is capable of addressing the matter or sending me to the appropriate specialist if I keep having problems.

    Still feeling worn out. I decided to try 10 mg of DHEA. I didn't need it a while back, but killing viruses is wearing. I should be able to see within a day or two if it helps.


  15. Slayadragon

    Slayadragon New Member

    You can read my post "A Strategic Plan for Getting Truly Well (with Valcyte etc.) if you want to know how Famvir fits into it. I will bump it to the top of the board.

    I don't know what Famvir is killing, but it certainly is killing something. That means the Valcyte will have less to kill once I start on it.

    Considering a) how severe Valcyte die-off reactions can be and b) how toxic Valcyte itself is, decreasing the number of viruses it has to kill as well as minimizing the amount of time I'm on the drug seems to me like a good thing.

    This especially is the case since my doctor's strategy is to get my own immune system up and running as fast as we can. That's less likely to happen if my body is worn out from extremely heavy herxing. (Again, this is explained further in the post referenced above.)

    Thanks to everyone for your nice posts. I will write more when I am less tired.

    Best, Lisa

  16. Forebearance

    Forebearance Member

    Hi, Lisa,

    I can tell you that any time I find a new supplement that is good for me, it makes me sleepy. In a good way. And I'm not the only person who has had that experience.

    I'm so glad you reduced your family-caused stress.

    This IS wearing. I am worn.

    I'm so sorry to hear about your heart hurting. Mine started in exactly the same way. Just an occasional twinge when I was under a lot of stress.

    I'm glad you have hope. I really think you can get well. And me too.

    Regarding enveloped viruses, the protein feelers that stick out of the envelope are the things that the virus uses to lock onto healthy body cells. So those feelers are essential for the virus to reproduce. So disabling them would be an effective way of fighting a virus, I think.

    Oh my. I just said the same thing in my thread about being too tired to write much!

    Hang in there,
    Love,
    Forebearance
  17. cherylsue

    cherylsue Member

    How was your move? Did you make it through okay? I agree you need to try another doctor. Thyroid hormones may not be the way for you to go. At the CFS conference, not many of the researches were excited about them.

    Where did you get your Pure Encapsulations catalog? I've been able to purchase their St. John's Wort online, and I like the product. I know it can be difficult to order those products unless you are a health specialist.

    Thanks,

    CherylSue

  18. Slayadragon

    Slayadragon New Member

    Thursday, February 1
    Famvir--Day 87

    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

    I'm vaguely disinclined to write a status report tonight, but I will do so anyway. It's just a little odd to have people _worry_ about me. I'm not used to that. It is nice that people care though.

    I've been gradually sliding into feeling depressed (the 'life is pointless' kind with occasional inexplicable crying jags), and this was particularly strong today.

    I actually mentioned this symptom (which I had occasionally in my first couple of months on Famvir) to my doctor at my last visit. He said that was fairly common on AV's.

    He seemed to believe that it was a result of viruses in the emotional center of my brain dying, and that my emotions would eventually be better as a result.

    Of course, as I said, he is currently taking the position that pretty much all CFS symptoms (heart problems, weight gain, cognitive problems, emotional problems, endocrine problems, energy production problems) in patients like me are caused by the infestation of huge numbers of as-of-yet unidentified viruses.

    I don't have enough data to know what I think about that. (He has a lot more data, having monitored his patients' reactions and lab results over a long period of time.) I do respect my doctor a whole lot though, and the explanation has a simplicity about it that I find appealing. In addition, attributing every unpleasant symptom as "progress" has a certain motivational quality about it.

    In truth, I'm too depressed at the moment to feel it's anything but pointless to take a stand on anything. Maybe later.

    My heart seems fine, but I am continuing to monitor. I was startled to hear how many other people on the board have exactly the same kind of chronic heart symptoms though.


  19. Slayadragon

    Slayadragon New Member

    Foxglove--

    How long have you been ill? Apparently not long enough to have been forced to appreciate the positives about living a slower-paced life.....or at least, to realize that such a life is worth living.

    I tend to think being an A+++ personality is not a good idea for anyone with CFS, even if it seems they have wholly recovered. My tendency is to believe that it may be very easy for us to slide back into the pit once we get better. And of course, pushing ourselves too much while we're actively sick is a setup for a big crash.

    It took me a very long time to understand that this illness has given me anything positive. But I believe it has. My thought processes are much deeper and more complex rather than sharp and superficial. I understand people much better, which allows me to get along with them and (I mean this in a good way) manipulate them more. I have a broader grasp of the world. My intuition is better developed, which gives me a much better idea of what things make sense and what is likely to happen in the future.

    Obviously these are not the things that everyone takes away from the process of slowing down. They're colored tremendously by my own natural inclinations. But I believe there is something significant to be gained by being forced to do less.....even if it took me years and years to realize that lesson for myself.

    On the other hand, having my life slip away from me is not good either. I googled my name yesterday and came up with 13,000 hits. I suppose this is impressive, but the unfortunate thing is that it is almost all a result of work I did prior to the age of 30. When I think of how much more (especially in terms of quality) I might have accomplished in the 12 years since then had I been a halfway normal person, it makes me feel a bit sad. I make it a habit not to Waste Time regretting what could have been, but it would be equally bad to Waste Time not pursuing getting well enough to do something meaningful if it is within the realm of possibility.

    All this stuff about cfs sufferers having heart problems is bothersome too. I am increasingly convinced that having this disease decreases the quantity as well as the quality of people's lives. I don't know if getting rid of it is possible, but it seems worth trying.

    How are you doing on the Valtrex?


    CherylSue--

    What is Epicor?

    I don't know about Ampligen. I had a conversation with swedeboy a while back in which we debated whether Ampligen might actually be bad in the long-run for people even if it has somewhat positive results in the short-run. Apparently a lot of the people who have taken Ampligen are not much the better for it. (erikmoldwarrior just said that about the first patient, Nancy something, to use it. Apparently he knew her from Incline Village.) Not that it matters since Ampligen isn't available anyway. I'm not holding my breath.

    The people who might come up with a wholly original answer are the Japanese. It's very pragmatic for them to do epidemiology studies, calculate the lost working hours, and as a result decide to invest money in the disease. Considering how seriously they are taking it, it seems extremely foolish for the CFS conference not to have had a good Japanese translator on hand to figure out what the researcher from there was saying. Anyway, if I were going to pin my hopes on something other than AV's, it would be on what they're doing.

    I've heard that kutapressin loses its efficacy over time too. For me, I never noticed that it did anything. But most things addressing my immune system had no positive effect. I now think my immune problems were so severe that only something with real oomph behind it makes even a dent.

    I agree that stress is an issue for me. I concluded yesterday that this AV is very stressful to my system even when I'm not herxing on it intolerably like I was at the beginning. Hopefully the bit of DHEA I've added will help that.

    Are you naturally inclined to high blood pressure? I wonder what causes it.

    I wish I'd gotten the heart tests done before I started on the Famvir, both because I was less tired then and because it will be a better baseline. I will have it done eventually even if the _very slight_ "heart ache" that I've worried everyone about so much does not reappear.

    Thanks for your well-wishes!


    Jolie--

    I'm really glad that you're at least somewhat settled and able to get some recovery time. I feel like there must be some roadblock that's keeping you from getting up to a significantly higher level, but am perplexed with regard to what that might be. If only there were more CFS doctors who knew what they were doing.

    Just as a stab in the dark....I don't recall your talking about yeast before. Just because the FFC said it wasn't a problem for you doesn't mean that it _isn't_ a problem. I've yet to hear of a CFS sufferer who hasn't had at least some problem with yeast, once s/he looked into it. It even snuck up on me last year, and I thought I knew what to look for.

    This is just a shot in the dark, of course. But if you've not actively treated yeast, it's more likely than not an issue. And especially if you're considering antibiotics for cp, making sure that candida is wholly under control is really essential.

    Anyway, I hope you start to get better. It's not fair for you to be this ill for this long. CFS is no picnic regardless, but I really hope you start to feel at least a little better soon.


    Thank you, everyone!
  20. cherylsue

    cherylsue Member

    I'm scared, too. Especially after reading swedeboy's microwaves and CFS post. I live near microwave towers. We have 3 computers in the house and a DSL connection. Things are always buzzing. My workplace is filled with computers and remote connections. Doesn't sound too promising for me. We live in Chicagoland and airwaves are all around. But not everyone is as sick as us.

    My work date has peen pushed up to March 26th. I still feel like crap. Somedays you just feel like screaming, if you had the energy. I am grieving and you are grieving for what we've lost. But we're still here. This virus could have killed me 6 years ago.

    I agree with you about the Japanese. I thought that they may come up with something brilliant since so many of them are affected. There's probably less red tape over there, too.

    I've decided that I like Dr. Cheney's and Dr. DeMeirleir's research the best. I know Cheney's protocol, and I'm waiting to hear more of Dr. DeM's in the next CFS Phoenix newsletter. It will tell what happened at the professional CFS conference.

    Although I like Dr. Teitelbaum's personality and some of his suggestions, I don't agree with some of his protocol and the FFC's. It's funny how the FFC was all the buzz, and now nobody talks much about it has helped them. CFS is what it is. It's so variable, and nobody can make promises.

    My sincere prayer is that we improve and get truly well. I've been really praying these last few days. Only God can help us now. We've done all that we could.

    Keep your notes of your journey. These posts would be a good place to start. Start writing your book or journaling. You WILL write a book about CFS. Somehow, this message get out how we are suffering. Be our advocate.

    We support you all the way.

    CherylSue

    Epicor is something I've posted about before and had given a website to follow up. I'm not sure it works, although it sounds good.
    [This Message was Edited on 02/02/2007]