Famvir Status Report Week Ten

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jan 22, 2007.

  1. Slayadragon

    Slayadragon New Member

    Sunday and Monday, January 21-22
    Famvir--Day 76-77

    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 67-77: 500 mg

    Got a "real cold" for the second time since the killer "flu" that started off my CFS. (The previous one was early in my illness.)

    I would have considered this a pretty bad cold before I got sick. A lot of thin (so far) congestion, a bit of coughing, very mild dizziness, feelings of being parched if I don't drink a lot of fluids.

    I think that the virus and I are tied at this point.

    It will be interesting to see how soon (if ever) my body can get the upper hand.

    It also will be interesting to see if I get more "colds" after I finish with this one.

    On an unrelated note, another weird symptom that I've had since being on this drug is the development of nervous tics. I will find myself rubbing or scratching various parts of my body for no reason, for instance.

    I didn't do this before. Obviously the drug is bringing all kinds of strange stuff to the surface.

    What I'm thinking though is that these tics are similar to the ones you see in kids with autism.

    We were discussing a while ago (with regard to Forebearance's investigations into anti-viral enzymes) the idea that there is some overlap between CFS and autism. A fair number of the underlying symptoms of the illness (if not the manifestations) are similar, based on the little I know of that disease.

    Some say that CFS has been on the rise in recent years, and the same thing is said about autism. I'm not sure whether this is true of either group, but if it is that could be taken as another indication that they might be related.

    I'd like to see the CFS test (NK Cell activity, alpha interferon, Rnase-L, apoptosis) done on autistic kids. If they come up with similar results as those of CFS patients, perhaps the herpes antivirals would work on them too.

    This is potentially really significant. I have to remember to ask my doctor about it at some point, especially if the AV's do end up working for me.

  2. Slayadragon

    Slayadragon New Member

    Tuesday, January 23
    Famvir--Day 78

    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 67-78: 500 mg

    This "cold" is nearly as bad as the killer flu that initiated my illness, which was the worst cold/flu I ever had in my life. I almost wonder if it's the same thing, reactivating.

    If so, I guess the theory suggests that would be a good thing. If that's the thing that's deactivating my NK Cells, and my body has now once again taken up arms against it, that would be a meaningful step.

    Probably it's just a regular cold/flu that I picked up years ago and never got rid of, though.

    Forebearance's suggestion of getting an impedence cardiogram is a good one. Then I could see how my heart is doing now and compare it to a second test at a future point in time when/if I'm better.

    I wish Dr. Guyer had suggested it, but he seems more interested in just improving people's health, not proving to others that their health has improved. If my heart tested bad now, and that I got better, and then my heart problem went away, that would be pretty impressive.

    Making the effort to go to the doctor when I'm this sick sounds like a lot of work, but maybe in a few days I'll feel better. I sort of doubt it, but who knows. Worth going anyway, I guess.

    I still have a huge amount of congestion and a lot of sneezing. My lips are parched and slightly swollen. I drank at least 15 glasses (14 ounces each) of water today, each in one large gulp. I suppose it's the breathing through the mouth that does it.

    In any case, this is quite uncomfortable. Since normal people get colds all the time though, I feel like I'm being sort of a wimp. Just keep repeating: It could be worse, I could be in Montoya's study, it could be worse......

    Still, if this goes on for three months like Forebearance's colds have, it's going to drive me completely nuts.

  3. Slayadragon

    Slayadragon New Member

    The "pulsing schedule" was not a plan.

    He instructed me to take 500 mg from the beginning, but I was worried I'd have a bad reaction from the drug and tested it first.

    I moved to 500 mg but got really sick from the herx.

    I tried stopping and restarting, but that didn't work.

    Finally I called my doctor.

    He told me to go down to 250, wait for a couple of weeks, and then restart. I did that, but took a week off because I was pretty sick from too much herxing at that point and needed to recover.

    When the herxing at 250 went away (except for fatigue), I moved up. The herxing at 500 mg then was moderate.

    I went back to 250 mg for a trip (my doctor's office is in Indianapolis and I also saw some friends while I was in town).

    Then I went back to 500 mg.

    If I had to do it again, when I started herxing too much at 500 mg, I would have gone down to 250 mg and stayed there until I wasn't herxing at that level. I don't think that the way I did it slowed things down or caused problems, but it was more unpleasant than it needed to be.

    My doctor has a primary goal of not burning out my system (especially my adrenals), and so he doesn't want me to go faster than my body can tolerate.

    Other doctors have other strategies, as I wrote on your post re the Valtrex.


    [This Message was Edited on 01/24/2007]
  4. foxglove9922

    foxglove9922 New Member

    I have really enjoyed reading your posts lisa....much of what you say makes alot of sense.

    Thank you for all you do here to help us out.

    Foxglove
  5. Forebearance

    Forebearance Member

    Hi, Lisa!

    Wow, autism-like tics! I wonder if something was living in your brain.

    I don't know if you remember, but I said earlier that I felt like my cold symptoms on Virastop might be the same virus I had when I first got CFS, and that I was picking up the fight at the point where I had gotten stalled before. So yes, I understand what you mean.

    I can't believe how similar your "cold" symptoms are to mine!!!

    I had the same parched, swollen lips and tongue, from breathing through my mouth at night. I was miserable, also. The congestion was just incredible. It felt like having my whole head full of mucus. Now I bet you understand why I decreased my dose of Virastop. I'm pretty tough, too, but that was too much for me.

    It was more than a typical cold. It was like a really really bad cold.

    Well, I will be interested to see what happens with you, since I have slowed down my progress considerably in order to make it bearable.

    Hang in there!

    Love,
    Forebearance
    [This Message was Edited on 01/24/2007]
  6. Slayadragon

    Slayadragon New Member

    Wednesday, January 24
    Famvir--Day 79

    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 67-79: 500 mg

    My cold seems to be on its way out (I hope). I drank the tea below (the second version) last night and this morning. it's potent stuff and actually does seem to have an effect. The congestion cleared up a whole lot and I got very sleepy. This is pretty impressive. No more Sudafed--I hate that stuff.

    Thank you to dncnfngrs (and Stormy) for the recipe!

    I still have a little congestion and an occasional cough, and still feel pretty weak.

    I wonder what the next symptom to surprise me will be.

    *


    Voodoo Tea

    Easiest made in a drip coffee maker.

    Part one
    In the pot, per mug of water used:
    1 peeled rough sliced garlic clove
    pinch of cinnamon

    Add water by the mug however much you're making, one
    mug for just you, two if hubby wants some. Brew. Let
    water/garlic/cinn sit on coffee maker heating element
    for 10 mins. If desired, for congestion, add 1 green
    tea bag for the last 2-3 mins while it all "steeps."

    Part two
    Put in mug:
    1 tablespoon apple cider vinegar (with mother if you
    have it, regular if you don't)
    honey to sweeten (or whatever you have, desperation
    rules here)

    Drink hot. You'll know it's working because you'll get
    very sleepy. If you don't, try another mug in a couple
    hours. Microwaving the water isn't the same. If made
    using boiled water, bring water just to a boil, pour
    over all except ACV and honey, and cover the cup, then
    follow the above.

    Some people like my husband are weird and like the
    taste of ACV. I do not.

    Yeti Tea

    This is the "will it put hair on my chest?" version
    that Stormy and I came up with. Aka "Advanced Voodoo
    Tea for the Truly Desperate Who Have Nothing to Lose
    Tea."

    Ditto the above except:

    Use a filter
    Add 1 licorice tea to filter
    Add a generous shake of cayenne pepper atop the
    licorice tea bag (don't go crazy, too much and you
    have to restart)
    Add a pinch of sea salt to the carafe

    For some reason, this one is more easily drunk without
    the honey, but if you overdid the cayenne, a little
    extra honey helps.

    The cayenne pepper WILL open your head, so have plenty
    of tissues handy. Viva paper towels work great.
  7. Slayadragon

    Slayadragon New Member

    It seems potentially significant that my cold symptoms are so similar to the ones you are experiencing. I would think the chance of it being the same bug must be pretty high. You're killing it off more slowly though, which makes sense considering what you're doing.

    I tend to think that if this virus is not the cause of the CFS, it's very strongly associated with it.

    [This Message was Edited on 01/24/2007]
  8. Slayadragon

    Slayadragon New Member

    My "cold" seems to be making a decent comeback. I even made more of the Voodoo Tea (with cayenne) last night, too.

    I thought that just being sick with it for four days (even if it was a really intense four days) was not really long enough, considering Forebearance's three-month bout with what seems to be the same thing. I wonder how long this will go on.

    I wonder if what I'm expelling with this immune reaction is live or dead viruses. I would have been sure that they were live, but Forebearance is supposedly killing viruses with the Virastop and they're still giving her a cold.

    Maybe it's an enveloped virus and she's just killing the little protein feelers that stick out. In that event, maybe there would be half-dead viruses causing a last stand. Is there such a thing as a pissed-off half-dead virus? Considering that viruses are not even really life forms?

    A related question is what kind of virus this is. If it's a herpes virus, it would seem likely that it was at least partially being killed by the Famvir. But if it's PIV-5, that likely would not be the case.

    A further question is whether, if whatever my body is trying to kill is not dead, it would be useful to try to kill it. The only tool that I can think of that might be potent enough to do so could be Nexavir.

    If Nexavir could kill it, then perhaps it would be a useful adjunct at this point. My body apparently thinks getting rid of this virus is really important (since my immune reaction is so high) and yet is not easily winning the battle. Well, if it were an easy battle to win, my body would have ditched it long ago.

    I am going to try calling the president of Nexavir and asking if the injectible product is made with rubber or synthetic stoppers. Then perhaps I will schedule a short phone appointment with my doctor to discuss a couple of things, including whether it would be worth taking the product (in injectible or gel form.

    My immune response is obviously limited at this point, but this still seems like a very aggressive and stubborn virus. It also seems like a priority for my immune system (and CFS patients' immune systems as a whole). I wish I understood more of what is happening.


    [This Message was Edited on 01/25/2007]
  9. Slayadragon

    Slayadragon New Member

    I wrote one of the Northwestern professors who worked on figuring out the structure of PIV-5 (as detailed in one of the earlier posts on this thread).

    I wanted to find out if PIV-5 hides from T-cells and can only be killed while it's replicating in cells by Natural Killer Cells, as herpes viruses do. I couldn't find any information about this on the Internet and figured if anyone would know, he should.

    This was his response.

    This is not a virus that anyone knows much about, it seems.

    (And my ability to dig medical biology information out of the internet seems to have become pretty good, if the things I can't find are questions that no one has the answer to.)

    If PIV-5 doesn't hide, I wonder why it would be so hard to get rid of and be such a problem for us. Early reports say that it's confirmed to be present in something like 95% of all CFS patients, at least based on analysis done so far.


    **

    Dear Professor Jardetzky,

    I have a question about PIV-5 that I hope you can answer.

    Is PIV-5 a virus that inhibits its host cells from expressing MHC molecules?

    In other words, is it a virus that is killed largely by Natural Killer Cells since it is hidden from killer T-cells during replication?

    Thank you very much for your help.

    Cordially,

    Lisa Petrison

    **

    Hi Lisa -

    I don't know of any effect of PIV-5 on MHC expression - but the virus
    does inhibit the interferon response. I don't know of any studies
    looking at the clearance of the virus but I would guess that T cells
    are still involved.

    Ted Jardetzky

  10. cherylsue

    cherylsue Member

    Sorry to hear of your great discomfort. I sure hope it is lessening a great deal.

    Adding curry powder to your soups, food, etc. will also open your passages. If you can find a good Indian food restaurant near you, that would open up your passages, too. My nose just runs and runs when I eat Indian food. It's an acquired taste, but I like it now. The tumeric, cayenne, etc. in curry powder should help other things as well.

    Have you finished Dr. Cheney's DVD yet? He said he no longer hunts down specific viruses, but tries to get rid of the viruses like the body does. He said Nexavir gel is one of the most potent antiviral substances around. I assume there's not that much toxicity, either.

    Are you going to see Dr. Papernik about the Nexavir? If so, I would like him to put me on it as well. I'll have to through my local doc because I had to drop the insurance that allowed me to see Dr. Papernk. She's talked to Dr. Papernik on my behalf before this. I wonder if Dr. P was at the conference in Florida? I sure hope so, or at least talked to his doctor friends that were there.

    What's this PIV-5 virus you spoke of? How does one pick that up?

    Thanks for your input.

    Hugs,
    CherylSue


    [This Message was Edited on 01/25/2007]
  11. Forebearance

    Forebearance Member

    Lisa, you said:
    "I tend to think that if this virus is not the cause of the CFS, it's very strongly associated with it."

    I think that's a very good way of putting it.

    "Is there such a thing as a pissed-off half-dead virus?"
    LOL If there is, I bet I've got them!

    I'm just brainstorming here, but is it possible that some day CFS patients will be told that when they develop the cold from heck, they are on the right track?

    Hey, CherylSue, you can read about the PIV-5 virus on the National CFIDS Foundation website. They wrote a press release about it this year. A Dr. Robbins in Australia thinks something very similar to it (or the same thing) is "the" cause of CFS, but who knows.

    Taking a second look at that press release, PIV-5 is called a "rubulavirus". I should look up what that means.

    Love,
    Forebearance
  12. Slayadragon

    Slayadragon New Member

    Thursday, January 25
    Famvir--Day 80

    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 67-80: 500 mg

    I am at the stage in my cold that I would normally associate with recovery---I'm not sneezing and the mucus is not as thin or copious.

    However, I have a major headache. My teeth hurt and I have a lot more TMJ than usual. Maybe it's from sinus pressure.

    I wish I lived near my doctor. He's got some tricks that generally fix these things up quickly.

    Hopefully some more Voodoo tea will help.

    I am thinking about scheduling a brief telephone chat with Dr. Guyer for next week. On the agenda would be my hormone results, my food allergy results, Nexavir, and maybe a quick question about whether he's seen other people with this cold and what he thinks that it is or means. Telephone visits are expensive and I'm not sure if my insurance will pay for them, but it may be worth it anyway.

    On the other hand, maybe I should just ask for a Nexavir prescription, since he already told me I should use it. If I have to pay for an telephone visit out-of-pocket, that's almost the cost of a month of the gel. The other stuff is not so urgent it can't wait another month, and at some point I really should restrain my spending no matter how much I want to get well.

    I spent a whole lot of time today working on my mother's legal case. I seem to be categorically unable to persuade my family members that I am too sick to fix their problems for them.

    Obviously in the future I am going to have to start categorically stating to my family that I cannot do stuff for them under any circumstances, rather than just telling them in advance how sick I am. Extra stress and work in my life is very very bad for me.

    They do not doubt that I am sick due to abstract notions of what illness is like. Rather, they do so because they have a psychological need for me to be available to help them, and thus conveniently have a mental block about remembering that I am ill.

    That's slightly better than being openly disbelieved, but it's still unacceptable.


    [This Message was Edited on 01/25/2007]
  13. Slayadragon

    Slayadragon New Member

    Cheryl Sue--

    I have an extremely hard time absorbing information orally at any time, and that's especially the case when I'm sick. This is undoubtedly because of my aversion to noise, and especially the human voice. I think this is a problem in general, but it's greatly exacerbated now that I'm sick.

    Of course, I'm sick enough now that I'm not able to concentrate on written material either. Even theory development (usually my strength) is slipping away from me somewhat.

    So no, I've not watched the Cheney DVD's. In theory I'd like to right away, if only to pursue getting an impedance cardiogram. On the other hand, I think that going to the doctor (or rather, completing several trips to various doctors) is way too much stress for me at this critical time in my illness. It's much better for me to rest and hope my immune system is recovering.

    I haven't talked to Dr. Papernik about any of this stuff. He would be interested but not convinced. If I get substantially better or all better, I will go discuss it with him though. Office visits with him are only a $25 co-pay. Perhaps if he has a success story, he will consider pursuing it a bit more.

    Here's the Web address of the CFS article on PIV-5. They are purporting that this is the cause of CFS, although in reading over the article I do not see any convincing evidence of that fact. This is rather a sensationalistic organization (at least in terms of their publicly released written communication), but PIV-5 is interesting enough that it's worth more mental exploration. I will do that when I feel better.

    http://www.ncf-net.org/library/PIV5HostChallenge-0606.htm


    Forebeance--

    I will ask my doctor whether the "cold from heck" has been experienced by other patients and whether he has a hypothesis about what's going on. He may be interested to hear that Virastop has this sort of effect. We are very weird folks.

  14. Slayadragon

    Slayadragon New Member

    Friday, January 26
    Famvir--Day 81

    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 67-81: 500 mg

    My cold seems to be coming to an end. Perhaps in a few days I'll be past it.

    The TMJ/jaw pain is better.

    I'm continually get overheated on occasion. This seems to be from herxing. I'm still really tired too.

    My sleep has not been very good. I'm going to start taking melatonin again to see if I can get it back into shape.

    I couldn't remember for sure whether I took my medicine this morning. This is the first time ever that I've had that problem. I think I figured it out, but it's bothersome. I will pay more scrupulous attention in the future.

    I was sort of emotionally labile today. This seems a side effect from the drug too. I'm also getting tired of this going on for so long. I know it could be worse (a great number of CFS patients feel far worse than this without being on an AV), but it's still getting to me.

    I wish I knew someone who had taken Nexavir and an AV together. I don't know whether to pursue it or not.

    I tend to think I'm not going to be nearly done herxing on this drug (especially if I add nattokinaise and transfer factor) in another month. Maybe that means I should stay on it for longer before switching to Valcyte.

    My health took a big dip after I got this "cold." Hopefully once it's over, I'll get at least a little bit of energy back.

    Unless I get another cold, of course. Or some other surprise symptom hits me.

    I realized that it's been a while since I took any of those little frozen bottles of Atrium adrenal/thyroid/mesanchyme extract. Perhaps if I did that, I'd get a little strength back.

    This is an awfully expensive endeavor, even without having to pay for the Famvir.




    [This Message was Edited on 01/26/2007]
  15. cherylsue

    cherylsue Member

    I personally think you are moving to quickly on this because you are anxious to get better. Remember: Do no harm.

    I think you should back off the famvir a bit until you recoup from your cold. You have all these dead viral bits your body is trying to get rid of. No wonder you feel awful! I definitely would postpone the Valcyte. What's your rush?

    I'd hate for you to lose the 60-70% and sometimes 80% that you already have.

    Just be careful

    Hugs,
    CherylSue

  16. Forebearance

    Forebearance Member

    Hang in there, Lisa!

    It's good to know that the cold symptoms eventually come to an end. Now that I think about it, my nose is less runny this week.

    I remember having the horrible sinus headache.

    I am also more tired now. I just want to rest and sleep.

    Please do whatever you can to take care of yourself.

    Could you perhaps use your husband to tell your family that you are too ill to come to the phone? It's a shame that they can't see how sick you are. I guess some people need bluntness to get the message.

    Love,
    Forebearance

  17. Slayadragon

    Slayadragon New Member

    "Do no harm" has never been my motto. I would rather risk harm (even serious harm) than not get wholly well. That's just my personal choice, which I realize is not shared by a lot of people. But I have the right to make that choice.

    Talking to my family is not my problem. It's much more complex than that. But I have done what I can to minimize the stress.

    In any case, I'm doing okay physically. I'm not burning out at all. I'm just sick of feeling this way. I'm sick of feeling as I have for the past 11 years, and I'm sick of feeling as I have for the past three months. I'm ready to get it over with.

    I'm not going to do it counterproductively (that is, in a way that's contrary to the strategic plan that my doctor and I discussed). But I'm not going to string it along any more than I have to. Life's too short, and this living death (which is what I feel like my life is like even when I am at my best) has gone on far too long.

    I will make the most of the rest of my life regardless of what happens, but getting back to a whole life (if that turns out to be possible for me) as soon as I can is my goal.

    Thanks for your concern! :)

    [This Message was Edited on 01/26/2007]
  18. Slayadragon

    Slayadragon New Member

    Saturday, January 27
    Famvir--Day 82

    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 67-82: 500 mg

    My cold seems totally over now, although there's some "leftover" congestion that I'm still periodically disposing of.

    I slept for about 12 hours over the past 24 hours, which is reasonable considering how little sleep I got when I had the cold. Maybe it was just not being able to breathe because of congestion. I don't like decongestants and didn't take any except for the one experiment with Sudafed. The Voodoo tea helped some, but didn't wholly solve the problem.

    So I seem to have survived.

    I am continuing to have occasional feverish feelings that make me think that I still am herxing. Considering that most people don't do this on Famvir, my viral problem (as also measured on the ImmunoSciences test) must be very bad.

    And considering my relatively high level of functioning before the antiviral, I tend to think that my body's having to fight the viruses on a continual basis (rather even than systemic problems caused by the viruses) may well be my _only_ major problem. So....kill the viruses and maybe improvement will come very fast. I hope so.

    I was imagining that, if my body were a person, what it would think of all this. It would have to be really confused, since suddenly having a huge number of viruses die on their own would be well outside of its own "expectations" of what things were supposed to be like. It seems to be doing the best it can though, disposing of the viruses efficiently and without too much unhappiness (even though it is working hard to accomplish this goal).

    I would feel sorry for it if it were going through Montoya's program, but I tend to think at the moment it is quite puzzled but playing along just fine. Which is exactly what, under our strategic plan, it's supposed to be doing. So far, so good.

    Hopefully I will get a lull of feeling relatively well for a while now, so that I can do mundane things like pay bills and get the house back in order. If I have no symptoms other than mild fatigue in a week or so, I will think about whether it feels right to add the nattokinaise to get more bugs that are currently hiding in fibrin.

    I do think my level of immune dysfunction that planning to be done with this in six months is ambitious. Maybe a total of six months on Famvir, two months of Valcyte, and then pulsing would be more reasonable with regard to getting my house in order.

    But I could be wrong. Maybe I will start to turn the corner soon. Maybe Dr. Guyer's experience strongly will suggest that I'm getting closer to the end than I think.

    Preparing to go for another five months seems a good idea though. That would bring me to mid-summer. Well, I've purposely made no plans for any point in my future in order to give myself flexibility, and so that would be fine.

  19. cherylsue

    cherylsue Member

    In the end, we all must make decisions as our instinct tells us.

    From the conference Dr. Charles Lapp stated that it's best to get to patients early for treatment, but that he's had 5, 10, 15, and even patients who've had CFS for 22 years become well. There' always hope for recovery.


    From the good article about Dr. DeMeirleir that is posted in the ProHealth library,I found my CFS subset profile. He lists three. You might want to see which one you fall under.

    Group 1 "These patients have a chronic low grade viral infection and inflammatory reaction in the brain. Many microorganisms are associated with this profile. Heavy metals, pesticides, and other triggers may also be involved. Aprroximately 20% of this group has low grade Herpes Virus 6A encephalitis.

    The prominent feature is neurocognitive problems such as confusion and impaired concentration and memory. Fatigue originates in the brain. Pain is not prominent. Patients exhibit symptoms that have some similarities to multiple sclerosis."

    My symptoms of relasing/remitting CFS, burning sensations or neural neurapathy, impaired concentration, little or no pain, fried brain, and easy head fatigue suggest this is me.

    "This group has high leves of LNW RNASEL and elastase...."

    So it seems if you could get to the HHV6 with the Valcyte, reduce you viral overload with the FAmvir for other viruses, you might be in better shape.

    Hoping for the best!

    CherylSue
  20. Forebearance

    Forebearance Member

    Congratulations on surviving your cold, Lisa! That is terrific.

    Actually, I'm down to residual congestion, too. I sneeze or blow my nose maybe 2-3 times a day now. It didn't occur to me to take a decongestant, either! I guess I'm not used to being sick. (That sounds funny, but you know what I mean?)

    How cool, CherylSue, that you figured out which CFS group you fall into. It makes sense to me! I am definitely in the second group, according to my symptoms. Fatigue is a worse symptom for me than brain problems.

    Love,
    Forebearance