starting 8th week Valcyte, very interesting

Discussion in 'Fibromyalgia Main Forum' started by gasolo, Mar 30, 2007.

  1. gasolo

    gasolo New Member

    Just finished my seventh week on this medication. A number of things have changed.

    I've had several episodes of shortness of breath, dizziness, tinnitis, parathesias and severe weakness. These episodes generally last only 1-2 hours then completely disappear . Very much different than my usually crashes.

    I developed a very painful viral ulcer inside my mouth during one of these attacks. I had a similar ulcer many years ago before my cfs that was much less severe.

    I developed a very large lymph-node (2.5 cm) behind my right ear about the same time I started my cfs symptoms four years ago. This very large node has persisted until this morning. Today it measures closer to 1.5 cm.

    My overall fatigue and brain fog has also improved substantially. I walked four miles yesterday without difficulty. My mind seemed very sharp.

    My theory- It appears that most of my symptoms are neurologically mediated. . I believe Valcyte works by preventing the replication of the offending virus. I also think it might stimulate the activation of the inactive virus. The appearance of a viral mouth ulcer, the episodic nature of my most recent attacks and the shrinkage of my lymph-node seem to support this conclusion. With each reactivation of the virus, since they cannot replicate, they are destroyed by my own immune system and the actual viral load is diminished. This also makes sense why the anti viral drugs have to be taken for such a long period of time. I believe Lisa also made a similar observation.

    Gary
  2. AllWXRider

    AllWXRider New Member

    From what I've read, it attacks Cytomegalo virus but not Epstein-Barr virus.

    Tumeric (curcumin) kills off Epstein-Barr so adding in Valcyte would be great.

  3. acer2000

    acer2000 New Member

    gasolo has your sleep improved on the valcyte? just curious
  4. deliarose

    deliarose New Member

    i hope you continue to make progress.
    allwxrider: i thought all the montoya patients who responded saw a decrease in EBV titers. Doesn't this suggest that the end result is that EBV is being killed off?
    delia
  5. Fmandy

    Fmandy New Member

    Everything you say makes sense to me. Theoretically anyway. I just hope the virus does not mutate to another type that can replicate and cause damage.

    I wanted to ask if you had ever heard of a virus living in the spinal fluid that damaged the nerves and or bone of the lower spine? I know that copies of all viral attacks we have ever had, remain in our spinal fluid an spleen. I just wonder if some might attack the mass of the lower spine. I do know about spinal meningitis and the brain.

    You also mentioned the lymph node behind your ear, well behind both of mine, I have small cyst that if I squeeze they will instantly swell and become infected. I had one behind my left ear 20 years ago that became so infected (from squeezing) that I had to have it treated with silver nitrate, or something like that. It turned purple as a grape. Fast forward to today. I do not dare squeeze these growths, but I can just run my finger across either one and the most wretched smell will be on my finger.

    I have googled most things that I need to, but this one has stumped me. Do you have any idea if these lumps or bumps are associated with my lymph system? They are located directly behind my ear but above the lobes.

    I really hope your treatment is a success. I am following your posts very intensely. If the ulcer is still in your mouth, please try "oil pulling". It is amazing.

    Thanks in advance for any information on these cysts or growths, and the lower spinal mass question. I know you are very sick and realize you may not feel like having your mind picked.

    Andy
  6. gasolo

    gasolo New Member

    Hi Andy,

    My understanding is that hh6-v virus lives in the central nervous system at the cellular level. Its travels cell to cell. Probable not present in the spinal fluid.

    Concerning the boils. Its sounds like sebaceous cyst. They are a common problem. They usually present when they become infected. If you look closely you can see a small pore in the middle of the bump. This is a blocked pore which allows the sebum ( natural lubricant) to be trapped in its gland causing it to swell. The sebum is very foul smelling and has a cottage cheese consistency unless it is infected.

    Gary


  7. landrun89

    landrun89 New Member

    Thanks ever so much for the detailed reports on your weekly progress. Your medical knowledge is invaluable for describing the reawakening of your mind and body. I am somewhat behind you at 5 1/2 weeks and find your reports an inspiration for me although I recognize individual response may vary based on individual immune system response and the degree that one is disabled.

    Best wishes for your continued progress. Only those of us who have been on this difficult journey can begin to appreciate what a joy it must be for you and your family.

    Landrun
  8. cherylsue

    cherylsue Member

    You wrote: "My overall fatigue and brain fog has also improved substantially. I walked four miles yesterday without difficulty. My mind seemed very sharp."

    I am very impressed with your results. You are the biggest advertisement for Valcyte yet.

    You also made this interesting comment,"I believe Valcyte works by preventing the replication of the offending virus. I also think it might stimulate the activation of the inactive virus...With each reactivation of the virus, since they cannot replicate, they are destroyed by my own immune system and the actual viral load is diminished."

    This seems very relevant to me, and may explain my experience with the Nexavir transdermal gel I began two months ago. According to Dr. Paul Cheney it is supposed to stop replication of all the herpes viruses in vitro. However, I've been having some sporadic moments where I have tinnitus, paresthesias, postexertional malaise, and fatigue. I have better moments as well. I was just about to give up on the Nexavir thinking, "Why is my scalp burning/tingling, why are my lips tingling, again, like they did in the acute stage of my illness?" I've also broken out in a few transient pimples on my face and had a big one on my torso, unusual for me.

    If your theory is correct, perhaps, viruses are reactivating again, only to be suppressed. My local PCP wants me to continue on the Nexavir. I think I will.

    Best of luck to you in your journey to wellness

    CherylSue
  9. Fmandy

    Fmandy New Member


    Thanks so much for your "rapid response". I am trying to keep you from getting rusty :} . I am 54 also and I know about where you stand regarding the rest of your life. You have a lot more surgery to do, so you are taking this medicine. You're not young, but yet too young to hang up the scapel...Myself, I am hanging it up. I am not really in demand. I'm still working but not 9 to 5.

    You are fearless in taking this medicine, though it really is encouraging to many of us here that a surgeon has chose this treatment. Not trying to inflate your ego here, lol. Well if it helps you to feel better go ahead and puff up, ha ha ha.

    The reason I ask about the viruses living in and possibly attacking the lower spine is because I have the most horrendous lower back ache unlike a ruptured disc, though it could be.

    I believe somehow while I sleep, I am not getting enough blood flow to the nerves coming/going to my spine. I have been diagnosed with small vessel disease, so...and this pain is most intense when I awake.

    Take care and please continue to improve. Walking 4 miles without any difficulty is quite an accomplishment.

    Andy
  10. Slayadragon

    Slayadragon New Member

    Hi Gary,

    It is really interesting to hear about your progress and great to know that you are doing so well.

    it's particularly interesting since you are starting from a baseline of pretty good functioning.

    There are a few people on the board--myself included--who appear to be well functioning, but to my observation it's only because they have worked really really hard at getting to that point already. To my understanding your own core illness is pretty mild, which makes you an interesting test case.

    The idea that Valcyte might be really useful for people who do have really debilitating CFS is a fascinating one. This suggests that perhaps a) a mild form of CFS really does exist, b) it is caused by the same problems that affect severe CFS sufferers, and c) they have the potential of having a much better quality of life if treated for their problem.

    One guess is that a huge number of those people have been diagnosed with depression (even though they probably aren't real repsonsive to antidepressant drugs) or merely are "underperforming" in life (and thus seen to be unmotivated slackers). If this group (presuming it exists) were treated appropriately, a positive effect all around (both in individual quality of life and economic productivity) would result.

    Moreover, your experience seems to be suggesting that more mildly affected sufferers seem to have good potential to get entirely well relatively easily. That is really important too.

    If this were to become more widely known, R&D as well as physician understanding of the disease seems likely to skyrocket, helping those of us who have more severe cases as well. This reminds me of what happened with regard to the mental illness field in the late 1980's and early 1990's, for instance.

    I really admire you for taking the initiative with regard to pursuing this approach, therefore. Once you get totally well (and it seems that you will pretty soon), it will be interesting to see what Montoya (and others) think about your experience. If positive results are found in the current studies, moving to think about Valcyte and CFS amongst a broader population should be a next item of importance to explore for them.....in which case your own experience should be of substantial interest.

    Thanks for keeping us informed!!!

    Best, Lisa
  11. Slayadragon

    Slayadragon New Member

    So how are you doing on the Valcyte?

    Also, I can't recall what dosage you're taking....

    Best, Lisa
  12. ladybugmandy

    ladybugmandy Member

    Hello Gary and all:

    I have had CFS for almost 14 yrs now after a bout of mono. I am 36. My EBV (VCA) IgG is 1:160..and the other antibodies are normal. My HHV6 IgG antibodies are 1:320. I am not sure if this is enough to get a Dr. to try me on Valcyte.

    My symptoms have always been from the neck up mostly, aside from the fatigue. The most troublesome being brain fog.

    Any feedback would be appreciated....

    Thank you
  13. foxglove9922

    foxglove9922 New Member

    Hi Gary,

    Thanks for keeping us all posted on your progress. Very encouraging to hear that your're responding well. Did you experience a "herx" reaction at any point? Have increased sleep problems with Valcyte?

    Also bumping for ladybug's questions.

    Best wishes for continued recovery,

    Foxglove