Discussion in 'Fibromyalgia Main Forum' started by hensue, Feb 5, 2008.

  1. hensue

    hensue New Member

    Has anyone been helped or cured by valcyte? Or do you know of any person it has helped? all I see is it makes you feel bad!
  2. porchswinger

    porchswinger New Member

    Dear Sue,

    I just started valcyte 6 weeks ago, so I can't tell you if it will work for me. I got the first Stanford study from the medical library and it makes it seem like a piece of cake-- worsening of symptoms sometime weeks 2 to week 4; improvement sometime in weeks 6 to 12. 75% of the patients were about 90% improved after 6 months of treatment.

    The message boards show how much more difficult and uncertain the Valcyte outcome. Still, it seems to be the best chance out there for real recovery. I checked out these message boards, as well as --
    the message board for the HHV-6 foundation.

    I found that the following people said that valcyte helped them but not until a long difficult journey:

    brita, (HHV-6 website) Week 28 update. Here's the latest. I saw Dr. M. last week. He was very pleased with my progress and recommended I stay on Valcyte another three months. !!! On my best days I'm functioning at 80-85% of normal. Dr. Montoya decided to keep me on Valcyte because, although I'm improving, I still experience symptoms. At 7 1/2 months on Valcyte. I continue to make slow (very, very slow) but steady progress. I'm consistently at about 80% of pre-illness. I was a marathon runner. Of course I'd like to see 100% recovery. Dr. M thinks that will happen. He says it takes about a year to completely recover. When I complete Valcyte treatment, I will be placed on Valtrex. This is becoming standard protocol for post-Valcyte responders to keep EBV levels down and avoid relapse.

    deedee, Week 14 update saw Dr. Montoya yesterday and got some exciting news. Apparently the Valcyte is working!!! YAY!!! My HHV-6 titers were at 2650 in July and are down to 360 now. On top of that, I'm feeling better and have had some very consistent days of feeling pretty good.-energy level ok. 0I have been very mindful of not doing too much. Dr. Montoya said that this is key to recovery. So many of us are so excited when have a few good days that we overdo it and crash. This has happened to me a couple of times and I'm now paying very close attention to what my body tells me. He's recommending that I stay on Valcyte for at least another 3 mos, possibly 6.

    dhamma started in july symptoms bad at 3 weeks. Sore throat, swollen glands, ache all over, tired, nausous. It's like CFS/FM times two. 11/9 4 months doing a little better. started taking Valcyte on July 5, 2007, and ended it on December 30, 2007. I've experienced considerable improvement in CFS symptoms, although it didn't make a dent in the Fibro symptoms.

    dhamma's daughter, My youngest daughter was diagnosed with CFS shortly after I was. She's been seeing the same Dr., and on the same protocol. She started Valcyte in March 07, ended it in December 07, with about a 90% improvement. She had EB approx 10-12 years ago, and had not been well since.

    erica741-- Almost at my 6-month mark, and though I have my ups and downs-- overall I am on the road to recovery. When he saw me in mid-Oct, I was doing really well, and he said I was on track for recovery. But I have crashed twice since then.

    gasalo-- a surgeon who was on valcyte 7 ½ months with no improvement until more than 3 months off of the drug. My recovery is at least 85% and improving weekly.

    piperlilly started posting week 7. after 7 months she said she was better. No more posts after 7 months—October.

    I'm sure there are more, but I hope this helps.


  3. sascha

    sascha Member

    i started valcyte the first of January and am currently experiencing all sorts of worsening symptoms- BUT- i did have 3-4 hours when i felt quite good yesterday.

    i don't mind the symptoms (well, that's not really true- i just think of it as the price to pay to see IF valcyte is going to make a dent in my cfids 8-year illness).

    i don't have anything besides anecdotal impressions of valcyte's effectiveness. i definitely would not have undergone the treatment if i hadn't heard that it had helped many people with cfids. we do get accounts of worsening symptoms on this board, but there is also occasional news of how much it has restored people's lives.

    it is definitely worth the journey to find out, is my take on it. so good luck! Sascha
  4. chrissy12

    chrissy12 New Member

    Thank you so much for gathering this information and sharing it with all of us. As I read this list, I get excited, maybe there is an end in sight. I feel encouraged when I see others are improving... Take care.. Cindy
  5. maps1

    maps1 Member

    I can't believe someone would go to all the trouble you have to bring us this information.

    Thank you sooo much seems too little to express my gratitude.

  6. porchswinger

    porchswinger New Member

    I forgot to mention cat0003. She is in Montoya's yet unpublished study and started Valcyte in July.

    Recently, she wrote: The last two weeks have been hell in terms of stress (MIL’s leukemia returned, legal drama with husband trying to prevent his ex-wife from moving out of state with his 14 year old) and I continue to strongly improve despite this. I am resting like crazy and trying to not physically exert myself, but it’s hard to dodge the drama right now. My nervous system problem has fully resolved itself, and I have felt very well for the past week. I have no pain, little if any fatigue, strong cognitive function, just low stamina because I’m so de-conditioned.

    Hope this cheers everyone up!

  7. stschn

    stschn New Member

    Gardendi who recovered in only a couple months.
  8. aftermath

    aftermath New Member

    Out of curiousity, do you guys know if all on the list who experienced substantial recovery had elevated titerrs to both HHV-6 and EBV?
  9. hensue

    hensue New Member

    Thnks for all info, my dr. did tell me because I had been to a md who is now an alternative dr. He had all these test taken, All my titers were high for just about all of the viruses. I have herpes on my lip now that goes in my eye. I remember all my life having lots of viruses. Mainy my immune system was down. I needed my tonsils removed when i was 24 when i could afford it. Thank God I have never had strep or the bad stuff again and I am 54. Drainage yeh, but I am talking all the white patches and stuff. I also dieted till i got this fibro I starved myself to stay a size 4 and 6 well I am not that now.
    The MD I go to now says everyone in the us has or 90% have high titers of most of the viruses. My husband also has hepatis c.
    I would like to keep on hearing the success stories about valcyte. I believe some of it lies in there.
    Then again I am not a DR.
  10. porchswinger

    porchswinger New Member

    80% of children 31 months and under, have HHV-6 antibodies. The question is what level of antibodies do you have?

    Your doctor is taking the old fashion view that high Igg antibodies don't mean you have an active or reactivated viral infection. There is enough recent evidence now to show that high Igg antibodies to these viruses, along with symptoms, does mean that the latent virus has reactivated and may be making you sick.

    In one study of HHV-6 in CFS patients, 89% of the patients with a high HHV-6 IgG antibody titer of 1:320 or above were found to have active infections by culture. “There is a consensus that a titer of 1:640 is indicative of active disease….” Moreover, HHV-6 can cause immune suppression and “has potent transactivating properties that cause it to stimulate other viruses, such as EBV and CMV [and others].”

    The same goes for EBV. While it is very common, it's the level of your antibodies that is important in determining whether or not you have reactivation of the virus. As you get older, your antibodies should drop. High antibodies in an adult is indicative of a reactivated infection. If your EBV Igg antibodies are at least 1:320 (esp if you have high HHV-6 Igg antibodies), you should look further-- say at the EBV EBNA and early antigen. Don't bother looking at the IgM antibodies. They won't tell you if the virus has reactivated. Also check out your antibodies to CMV.

    Different testing labs use different testing values. for eg. Quest sucks-- they use the wrong testing values. Focus Labs is the gold standard for testing these viruses. You can go to Quest, have them draw the blood and tell them to send your blood to Focus Labs in California for testing. Quest and focus have an agreement to do this. Maybe other labs do too.

    You can do some research on line at the HHV-6 Foundation and show your doctor. However, if he/she is uninterested or poo poos the research, you may need a new doctor.

    Good luck.

  11. waltz

    waltz New Member

    Your MD should become more familiar with Dr. Montoya's work. What they mean by "high" is not the same as a positive IgG titer. They mean more like off the charts.

    Most people have had HHV-6, EBV, and CMV, and may have positive IgG. But most people will not have the "high" titers that Dr. Montoya is talking about. Some of the titer levels he has seen are so high that they have been described as never having seen anything like it before. And I think that's saying a lot coming from an infectious disease specialist working in an academic setting where they deal with reactivation of these viruses all the time.

    Also if anyone knows how antibodies work and how antibody tests are done, antibodies do not actually identify viruses per se. They identify things like proteins, pieces of the viruses. So actually, positive tests for these antibodies doesn't necessarily mean it's HHV-6 or EBV. Antibodies can cross-react. Also think about "autoimmune" diseases which by definition are thought to be because of molecular mimicry.

    Anyway, any doctor should at least read Dr. Montoya's first published paper before offering comment.
  12. Timaca

    Timaca New Member

    Thanks for revisiting the rules of the board. You are right, I don't see anything prohibiting mention of other websites.

    So, for those interested, the website for the hhv-6 foundation is

    There is lots of good info there about viruses. The patients forum is helpful as well.

    I always thought it wouldn't make much sense to not be able to direct someone to another website, if that website could be of help to them....

  13. aftermath

    aftermath New Member

    Thanks for collecting all of the info from posts by those who have improved on Valcyte.

    I'm probably going to give it a go this summer after Dr. Montoya published his second study...

    Just one quick FYI...

    <blockquote>Quest sucks-- they use the wrong testing values. Focus Labs is the gold standard for testing these viruses. You can go to Quest, have them draw the blood and tell them to send your blood to Focus Labs in California for testing. Quest and focus have an agreement to do this. Maybe other labs do too.</blockquote>

    It's more than an agreement. They are actually the same company now--Quest owns Focus.

    Still, if you are having HHV-6 titers tested, you want to be sure that your doc insists that Quest send them to the Focus branch to insure numbers that can easily be compared.
  14. Lichu3

    Lichu3 New Member

    my impression has been that if the website is information-based and not selling something, it is OK.

    I've posted stuff from major news sources with .com in the address and haven't had any probs.
  15. stschn

    stschn New Member

    was not a very good one. last year when haveing the work done to send off to Stanford to see if i could be in the trial the gal as the desk of the quest lab told us they couldn't do it and this was after my husband had made what felt like to him 50,000 calls and and driven 40 miles to the lab. when he raised his voice the gal in the back doing the draws heard the conversation and came forward and was able to help us. i will be at my 6 months on 2/14 so we got the lab slips to go back to the quest lab again to have the work done and off to focus with a copy to montoya. i suggested to my fellow that given the problems of last february we should call ahead and this time we ran into even bigger problems. i would suggest that if you are going -check with them by phone and if you run into what we did ask for the number of the supervisor and save your self a lot of stress.

    LISALOO New Member

    So level of IGG is considered active? I had an HHV-6 of 160 three years ago, not tested since. Yet teh dr says I have it but never mentioned Valcyte.
    [This Message was Edited on 02/09/2008]
  17. Timaca

    Timaca New Member

    You may not have an infection of HHV-6 if your IgG antibody titer is 1:160. See:
    IgG Antibodies.
    These antibody levels indicate that a person has had an infection at some point in the past; at high levels they can suggest (but not prove) that the virus is active. Much more research is needed on this question but in one study of HHV-6 in CFS patients, 89% of the patients with HHV-6 IgG antibody titer of 1:320 and above were found to have active infections by culture (Wagner 1996). Results vary by laboratory, but at most commercial labs, healthy adults have titers of 1:40 to 1:160. Sometimes a different ELISA assay is used and the results are reported as an index. These index scores can also vary by laboratory depending on the manufacturer of the kit. Young adults may have unusually high antibodies due to reactivation during mononucleosis.

    The link is:

  18. hensue

    hensue New Member

    Hi! do you mind if I ask have you felt any different? Or is it to soon. You are on Valcyte right? Are you in Sanford Study?
    Thank you
    [This Message was Edited on 02/10/2008]
  19. Lichu3

    Lichu3 New Member

    I would keep an eye on the research, Lisa, as things are too preliminary to tell.

    Check the reference values for the results you have. Each lab has their own way of testing for titers and will have run their method through healthy folks during test development. At least this will give you a sense of how you compared to other healthy folks taking the same test.

    The value you have would not have strictly-by-the-study docs prescribing the medicine and you might want to wait for more results.

    Too many CFS things have been dismissed on the basis of one study, including HHV-6 by the CDC more than a decade ago. The thing about the 1:320 study is that it doesn't mean that if you have a lower titer that you don't have HHV-6 infection but the chances are lower than 90%.

    Many medical tests are continuous, such that we don't know from current data, if you have less than 1:320 titer, if you chance for active infection falls down to 80%, 70%, 50%, etc. I don't have access to the original study but would love to read it.

    Next, the people in the study with the low titers were two with non-viral onset. Those values were 1:40 and 1:80. Montoya says in the discussion that the whole clinical picture needs to be looked at other than just the titers.

    So, unfortch, it's all about waiting for more data to come in.
  20. stschn

    stschn New Member

    6 months on Valcyte should not be to soon to start feeling better but unfortunately I'm not. I am not in the trial but seeing Dr. Montoya and working with my local pcp.