I have been on valcyte for three weeks today

Discussion in 'Fibromyalgia Main Forum' started by keke1972, Feb 27, 2007.

  1. keke1972

    keke1972 New Member

    I wanted to post to others about my experience on valcyte so far. I have been taking the medicine for three weeks. The medicine seems to be really affecting my fatigue terribly. I don't feel any relief at all during the day. I actually feel a little better at the moment, but thst's not saying much. I have been unable to post during these couple of weeks because it's so hard to think and the fatigue is overwhelming. I have both CFIDS and FMS. I hae had the illness for 19 years. I hope I am able to get somewhat better on the valcyte. Maybe I'll have the same luck the man had at petsmart considering how long I've been ill.

    I had all my testing through focus labs. I am not too sure how bad my hhv-6 is. The test was abnormal, but I don't think it was too high(hhv-6 IGG 1:80). My ebv has gone down over the years. I will have to look for the results because I can't remember exact numbers. I do have high levels of candida,my Rnase is 20, my natural killer cells are 7. I also have elevated IGF-1 which is usually low in cfs. I have to get an mri for that to check the pituitary gland. My primary thinks the IGF-1 my be high because I may be predisposed to diabetes. Any thoughts? I definently do not have acromegaly.....

    It has been rough for three weeks on valcyte. The fatigue is horrible and my eyes are very blurry. I hope this is a good sign. Take care everyone,KEKE1972
  2. keke1972

    keke1972 New Member

    I would be happy to keep you updated while on valcyte. My dr. said a lot of people feel worse before they get better. I have been feeling pretty bad since about 3 days after starting the medicine, but I always have the constant fatithe valcyte has fatigue+pain. I could deal better if I could get rid of the overwhelming fatigue. This is actually the first day I have been able to sit here and type without needing to shut my eyes siting straight up. I do think the valcyte has caused more extreme fatigue,foggy brain and blurry vision. Yesterday I had to lay in the bed most of the day........I could barely walk around the house without feeling exhausted. I also felt a little winded when I was breathing. It kind of scares me a little when I get like that. By the way, that is a new symptom since starting valcyte. It seemed hard to catch my breath. Weird???

    My doctor thinks the medicine may help me. I pray it does, I've had this too long. I am ready for a break.........I will keep you posted. I hope I answered your questions.Keke1972
  3. landrun89

    landrun89 New Member

    I have my one week anniversary with Valcyte today. I have not felt any better nor did I expect to, however It does seem to be draining my energy level and I've had several mouth sores preceded by exhaustion which is unusual. Normally I have just one mouth sore and it comes after somewhat greater activity level. I am taking 4 per day and will continue at that level for one more week, than go to 2 per day for the estimated remaining 6 month period.

    Based on what I have read I believe it will be somewhat rugged, especially in week 4 to 6 which may involve virus die off. After we get thru that period things may stabilize and perhaps begin the journey to better health. Depending on the article you read Michael Manson, the founder of PetSmart either "for six weeks I was very ill...and slowly I started climbing out of it," from the Palo Alto Daily News or from MSNBC.com reports, at first he felt worse. Then after a few weeks, he began to improve.

    I guess it depends on the definition of "few." I am inclined to attach more relevance to the direct quote from Manson concerning the six week period. Also I think the degree of disability one has when beginning valcyte is certainly a factor.

    Also the editor of ChronicFatigue.com in an article that came out after the HHV-6 Conf in Barcelona, May 2006 quoted Dr Montoya responding to a question about the possible placebo effect said "that is unlikely because we saw a worsening of each patient's condition around week three to four of the treatment, probably when infected cells were dying off. After that came improvement.

    I have dealt with CFS for some 18 years and have tried many meds and concepts, but I believe this promises to be the most rewarding. I readily admit however that my degree of optimism is directly related to how well I feel that day. Good Luck and try to focus on the end result, not on the day to day struggles at the beginning. Just know that you will get thru it and may have endured the same or worse symptoms in the past.

    Landrun89
  4. keke1972

    keke1972 New Member

    Thanks so much for your post. I am the same exact way, positive on the days I feel a tiny bit better. That's how I've always been with this illness. It's hard to feel really positive when we feel like death warmed over-ya know what I mean? I hope this works for a lot of people. I am somewhat hopeful, but after trying things for so many years it's hard to imagine feeling better. Did you have the hhv-6 thing and ebv? I think there could be other viruses attacking our bodies that may be helped with valcyte...I guess there is no way to know except hope for the best. Are you seeing a specialist? Take care of yourself, KEKE1972
  5. Slayadragon

    Slayadragon New Member

    Thanks so much for using a bit of your small amount of energy to do an update. I've been wondering how you were doing and hoping for the best.

    It sounds like you are doing as expected. Valcyte is obviously a tough drug to take.


    Unfortunately, these antivirals often take a long time before improvement sets in. I thought I had learned to ba patient during the 11 years of my illness, but having life slow down from a crawl to a standstill is still a bit hard to handle. Being able to share with other people on this board is helpful, I think.

    i know what you mean about it being hard to imagine being well. I've tried so many things over the years that the idea of really getting better often seems unrealistic. Now that I've committed to it though, I'm going to follow it through to the end.

    Please write again about how you're doing when you can. I am rooting for you, of course.

    Best, Lisa

  6. Slayadragon

    Slayadragon New Member

    Congratulations (I think) regarding joining the CFS patients using Valcyte. Hopefully it will turn out to be a good thing for all of us.

    I found your comments about getting more mouth sores since starting the Valcyte interesting.

    It sounds like you must have herpes simplex 1 ("oral herpes").

    It's my understanding that the sores appear when the virus is active (flying about in the body). During the time that it is dormant (hiding in cells replicating), mouth sores should not be present.

    What this makes me think is that as a result of the Valcyte, the viral infection must be becoming more active.

    If that's happening with all the viruses, then it's not surprising that we'd be feeling worse. We not only would have a lot of dead viruses to dispose of, but more active (temporarily) infections besides.

    This is a theory that I've been pondering recently, and so it's interesting to have evidence. I am going to ask my doctor about it when I see him, unless I find out the answer before then.

    Meanwhile, it sounds like you are off to an expected start with the Valcyte. Who is your doctor?

    Please write back again as often as you are able and let us know how you're doing.

    Good luck.....

    Best, Lisa


    [This Message was Edited on 02/28/2007]
  7. keke1972

    keke1972 New Member

    Thanks so much for your support everyone. Does everyone here have unrefreshing sleep? Does that get better with the antivirals? I just wondered if that is common also? I've also noticed I have been breaking out a lot with acne. The pimples are like boils at first. I haven't had any cold sores though. Take care, Kristen
  8. Slayadragon

    Slayadragon New Member

    Thanks for sharing your Valcyte knowledge with us.

    Have you seen improvements by now since before you started the Valcyte?

    Who is your doctor?

    Also, how long did it take before you got a response with the AHCC? I took its predecessor, MGN-3, a long time ago for a couple of months. I got feverish feelings (signs of antiviral activitiy), but after a couple of months of not feeling better, I gave up.

    Maybe that was a mistake. Or maybe this new version is better.

    in any case, welcome to the board. I'm really glad that you're here.

    Best, Lisa

  9. Slayadragon

    Slayadragon New Member

    I've had unrefreshing sleep throughout my illness, which I have controlled with Klonopin. It's gotten a lot worse since starting the anviral. My doctor said that he hopes that it will get better after I'm done with antiviral treatment.

    He told me that any problems caused by viruses tend to be exacerbated while viruses are being killed, and that my emotional/cognitive/sleep symptoms are a result of this.

    I usually have very good skin, but since I've been taking the antiviral it has gotten really awful--red, blotchy, rash-like. A little coconut oil added to my face cream has helped some. (Coconut oil apparently has antiviral/antifungal qualities.) I don't know how it would do on boils though. In any case, skin abnormalities do not seem uncommon.

    Please keep writing.

    Best, Lisa

  10. keke1972

    keke1972 New Member

    Thanks for your response empty2void. I'm a little concerned that my hhv-6 is not very high. The doctor said I had a positive serology to hhv-6, but I'm not sure what that means. EBV VCA IgG Antibodies 1:160 and the range was <1:10. My hhv-6 says abnormal and it was 1.80 IgG. If any one can explain this let me know. Also, how long have you had CFS/FMS? Thanks for any responses........KEKE1972
  11. Kal-El

    Kal-El New Member

    I wonder what exactly Valcyte does that makes CFS patients improve. Clearly, HHV-6 or any other virus isn't the cause of CFS, so I wonder why some have seen such drastic improvements on it. Perhaps a rewiring of our own antiviral pathways is the key to it.
  12. acer2000

    acer2000 New Member

    You said Montoya asked for prayers that the study will occur? Does that mean that he isn't getting enough people to sign up? If so, I wonder if those who are being treated by other docs around the country can submit their results for the study.
  13. 18yrpwc

    18yrpwc New Member

    I can start Valcyte next week (I am a classic candidate)if I want, but my employer does not even know I have CFIDS. How long could I expect to be incapitated? 4 weeks? 6 months?

    Scooterhoo 18yrpwc
  14. Kal-El

    Kal-El New Member

    I can say that with almost 100% certainty because most people who contract HHV-6, or EBV for that matter, do not go on to develop CFS as a result. There is more to this than meets the eye, for sure. I'm going to go out on a limb here and say that Valcyte could work even for those without high levels of EBV or HHV-6 antibodies. After these studies are completed, more research should be conducted without exclusion.
  15. Slayadragon

    Slayadragon New Member

    There is a lot of discussion about CFS and viruses on the thread called something like

    Cheney and Valcyte

    at the top of the board now. It might be worth reading for those interested.

    Here are some hypotheses that I've encountered regarding the role of viruses in CFS:

    1) HHV6 is the cause of CFS (or at least some subsets of CFS). However, the testing that is currently available for HHV6 is not very good. Some people who actually have HHV6 test negative for it.

    2) HHV6 actually is two separate viruses---hhv6a and hhv6b. hhv6b is pretty harmless, whereas hhv6a is the cause for CFS (or at least for some people). The reason that some people have high measured amounts of HHV6 and yet do not respond to valcyte is because much or all of it is hhv6b. On the other hand, some people have almost all hhv6a, and only a small amount of it is required in order to cause CFS. (As in the theory above, testing inaccuracies could be a problem here too.)

    3) CFS is caused by an undiscovered virus (perhaps or probably one in the herepes family). This causes the proliferation of a variety of immune problems, including all of those in the herpes family. (Herpes zoster and herpes simplex appear to be pretty vicious amongst those CFS patients who have those viruses.) Valcyte kills off the undiscovered virus, thus allowing patients to get better or well.

    4) CFS is caused by something other than a virus. whatever this "something" is, it causes CFS patients to have dysfunctional immune systems. As a result, certain viruses (as well as bacteria and mycoplasma and yeast) proliferate, causing symptoms. As we know, killing off systemic yeast can make many CFS patients feel much better, even though few if any people believe that yeast is the root cause of CFS. Similarly, killing off viruses may make CFS patients feel better, even though the disease itself has not been eradicated. (The viruses causing the symptoms could be undiscovered ones as well as those that are currently measured, of course.)

    I don't think there's any good evidence that any of these hypotheses is right or wrong. There may be other reasonable hypotheses as well.

    As I've stated before, I'm inclined toward the "undiscovered virus is the cause" theory. That's more just my intuition than anything else.

    In any case, all of these theories suggest that people without any measured HHV6 at all might still benefit from antivirals. It may be that those with measured HHV6 are more likely to benefit, but that doesn't mean that other patients will not. (That seems to explain why Dr. Montoya is accepting only patients with high HHV6 antibodies into his current study even though he is using it to treat many other people with antibodies that are not nearly as high.)


    **

    Even if one or more viruses are the root "cause" of CFS, there very well may be other factors that predispose people to the disease (or keep CFS sufferers from getting rid of it). Very few diseases are caused by one factor alone.

    Some possibilities include:

    1) Genetic predisposition. This could be to not being able to fight off the virus directly (e.g. low NKC activity). Or it could be to some other underlying cause (e.g. inability to use glutathione).

    2) Weakening of the system due to physical or emotional stress. (Head/neck/back injuries and pregnancy have been especially implicated, as has overwork/exertion.) This may allow the virus to take a foothold in the body; once this happens, the body may not be able to get rid of it on its own (e.g. without AV help). A weak system may be unable to keep out viruses after they are killed off and thus may be more likely to relapse.

    3) An external toxin may weaken the system, causing the virus to take root. (Some examples of these are exposure to heavy metals such as mercury, exposure to chemicals such as pesticides, or exposure to certain kinds of mold.) in some cases, removal of toxins already present in the body (such as mercury) may be necessary if wellness is to be achieved, even if otherwise effective antiviral methods are used. In other cases, avoidance of toxic substances (such as mold) may be necessary to maintain health after antiviral methods are used.

    **

    It's possible that certain people will have a much harder time ridding themselves of the causal virus (if indeed a virus is the cause) than others.

    For instance, if people have only a mild predisposition to the disease and very healthy systems, they may be able to rid themselves of it through non-pharmaceutical means (e.g. herbs, supplements, or simple attention to health).

    Others with weaker structural systems, higher stress (toxin or emotional/physical) and worse genetics may find it difficult or impossible to get rid of the virus no matter what they do.

    I don't know if this is true, but it's certainly consistent with what we know about every other disease.

    For instance, some people can eat all the wrong foods, smoke, not exercise and still live healthfully until they're 100.

    Others can do everything "right" and die of cancer or a heart attack at age 50.

    Again, this is just speculation based on my understanding of how the human body works. I could be wrong.

    **

    Further input is welcome, of course.

    Best, Lisa


    [This Message was Edited on 03/01/2007]
  16. Slayadragon

    Slayadragon New Member

    In reading your posts, it sounds like you were in pretty bad shape before you started the Valcyte.

    How are you doing now? Do you feel like you're continuing to improve?

    How much longer do you think you'll stay on the drug? (Sorry if I missed that in the posts above or on another thread.)

    It's fascinating to hear that the AHCC raised your NkC activity so much. I am going to bring this up again to my doctor.

    Did you note subjective improvement in any of your symptoms at the time?

    Did Dr. Montoya have any comments on the AHCC?

    Do you think that the effects of AHCC are long-lasting? Or do they wear off in time?

    Thanks much for your help. It's great having you on the board.

    Best, Lisa

  17. Slayadragon

    Slayadragon New Member

    Obvioiusly, taking Valcyte is a hard road, and so spending energy doing unnecessary stuff may not be a good idea.

    However, if you do happen to have the energy on occasion, I would be very grateful if you were to post your experiences as time goes on.

    i would find it particularly useful if each person had their own thread, since I'm starting to get confused about details of each person's treatment now that there are a number of people here who are taking the drug.

    Obviously I don't expect you to be as obsessively detailed as I have been on my threads, or to post on a daily basis. But anything that you could provide would be really helpful.....at least to me.

    And since quite a few people have said that they've appreciated my postings, probably they would be very helpful to others.

    Thanks for considering it. Good luck, of course.

    Best, Lisa

  18. foxglove9922

    foxglove9922 New Member

    Thank you ever so much keke for sharing your experience with Valcyte. I am scheduled to begin 5/1/07 and sincerely appreciate all of those here who have been brave enough to pave the way for others of us here who will be venturing down the same road.

    Please do keep us posted when you are up to it. My sincere best wishes that the light at the end of the tunnel will find you soon!

    Foxglove
  19. keke1972

    keke1972 New Member

    I wanted to let everone know that my blood counts are perfectly normal so far, which means I can contiue with the valcyte. I seemed to be worse weeks 1-3 so far. Maybe because the dosage was higher. I really had a very hard time functioning during that time. I hope I see some improvements soon. I agree with Lisa peterson, I think there are other viruses not discovered yet. I think this medicine may help people who do not have the elevated hhv-6 titers because the virus ends up in the brain tissue which is impossible to measure.My ebv titers are not as bad as they were a couple of years ago. When everyone is posting their hhv-6 titers,are the labs from focus? I'm a bit confused. Lets all pray that this helps everyone somehow. I'm sure more things will come along soon if not. Take care everyone, Kristen
  20. acer2000

    acer2000 New Member

    Hey,

    I read your post with interest. I am wondering if Montoya mentioned anything to you about NK function going up as a result of the Valcyte. I would think he'd be following this on his patients... but I guess if your taking AHCC, it would be hard to tell. It seems to me that to prevent relapse your NK cell function would have to stay up after treatment, since NK cells seem to be the ones that kill the virii.. Any thoughts on that?