post-valcyte blues

Discussion in 'Fibromyalgia Main Forum' started by clo1, Aug 10, 2008.

  1. clo1

    clo1 New Member

    well i've been off of valcyte for over 8 months now and was a participant in the stanford clinical trial...i experienced some cognitive improvement (3 out of 10 at the beginning of the trial to 6 out of 10 at the end); my constant daily headaches are gone...but i feel like absolute cr*p...i am exceedingly weak and short of breath; i can barely have a phone conversation these days; it seems that physically i am where i was and even worse in some ways than before the trial...there have been fleeting days during the past 12 months where i felt that something resembling strength was starting to come back, but those were few and far between; now it is consistently bad...i told my S.O. that i feel "2/3 dead"!

    so of course i am grieving the loss of hope; because as hard as the valcyte was for this body to endure, i always maintained that it would be worth it if there was any hope of getting better or even well...last july, when the trial was starting, i actually imagined that by this july i would be hiking in the sierras and swimming in lake tahoe! no such luck...

    i think part of this ongoing demise is due to the fact that i recently had to be hospitalized twice for acute pancreatitis and then emergency surgery...those were h*llish experiences to say the least; life-threatening even...but they were "self-limited" - either you get better or you die...and general anesthesia, according to anecdotal reports, is definitely a trigger for worsening of CFS...anyway, CFS is the worst condition because of its unlimited nature, horrific symptoms and lack of understanding...and i believe that i read somewhere on this site that the longer one has had CFS, the less likely it is that improvement will result from valcyte (i have 22 years under "my belt"!)...have others of you experienced this?

    this is the only place where other people truly "get-it" and i so appreciate reading your posts and look forward to hearing from any of you...

    sorry for the "downer" report, but that's all i've got..i am ever vigilant about depression because i don't want to go there...it's horrible enough to be chronically ill but add depression to that and it's way more than anyone should have to bear...i guess i am just looking for that connection with you all...warmest regards, clo


    [This Message was Edited on 08/10/2008]
  2. clo1

    clo1 New Member

    dear kelly, you are always so kind and generous with your thoughts and your time...you've no idea how much it means...in my particular case the acute pancreatitis was first caused by an endoscopic procedure called ERCP, where they were looking at some abnormalities that had shown up in a CT scan; there is a 3-5% chance of getting A.P. from an ERCP, so i of course didn't think it would happen to me! that landed me in the hospital for about 5 days and caused some pretty serious short-term complications...the second time it was apparently caused by a gallstone, so i was in the hospital for about a week while they waited for the pancreatitis to stabilize, then they took out my gallbladder...so thank you for sharing what your doc said about general anesthesia; i had a feeling that was the case...

    i don't think germany is in the cards for me; i saw dr. montoya about 2 weeks ago to learn my trial results, which were very mixed...mostly not very good...he had some labs done while i was there (for babesia, mycoplasma and some other bacteria) and i should learn the results this week...i am not optimistic that what's going on with me is bacterial in nature; i have always known that it's viral...but we'll see...

    i'd love to read those papers you mentioned, so if you can find them please let me know...again, thanks as always for your genuine kindness and caring...clo

    p.s. how does one contact kristin loomis? i have never done so before...

    [This Message was Edited on 08/10/2008]
  3. ladybugmandy

    ladybugmandy Member

    bless your heart! you have been through a lot with the pancreatitis on top of CFS.

    i live with major depression too and you are right....with the CFS..it's just too much.

    when i get very down, i think about michael manson...and about the interview with nancy klimas where she said that the "data is not holding up" to support the theory that people who have had CFS for longer periods of time are less likely to improve. i also think about the people that dr. lerner says recovered after years on antivirals.

    i cling to anything to give me enough hope to make it through another day.

    with the fog gone about 8% or so, i am able to pray a little so that helps in moments when i am desperate.

    for now, take it one day at a time....i guess that's all we can do.

    hugs
    sue
  4. redhummingbird

    redhummingbird New Member

    I'm so glad you posted and shared your pain with us. Your body has been through so much with valcyte, pancreatitis and then having your gallbladder removed.

    It's not surprising that you are feeling so weak.

    I'm glad Dr. Montoya is testing you for babesia as well as other bacterial stuff just to rule that out.

    I agree that contacting K. Loomis at the HHV-6 Foundation is a good idea. I have her email address but am reluctant to post it here. You can probably find it at the HHV-6 Foundation website. She sometimes posts on the message board.

    I also have a bunch of articles she sent to me.

    If you're not able to find her email address let me know.

    Also, I had some recent testing done and found out that my body has a very difficult time getting rid of toxins so any treatment for me causes me to get worse because of that.

    So any treatment for me must be accompanied by ways to detox.

    I'm wondering if something like that might be going on for you, especially since your gall bladder gave out.

    There is a test done by LabCorp that can be done.

    If you want more info about any of the above let me know.

    Hang in there. I'll keep you in my thoughts.
  5. clo1

    clo1 New Member

    dear sue, you are another one who has always been there with the support and kindness...i so appreciate it...and i am glad to see that your brain fog has decreased by 8%; last time i checked it had gone down by 5%...we can only hope for more progress...it seems that your decision to start seeing dr. lerner was an excellent one, although i know that the trips back and forth must be extremely taxing...

    where can i find that info. from nancy klimas? i would love to read it...i need hope right now...thanks again, hugs to you as well, clo
  6. clo1

    clo1 New Member

    thanks so much for your support and feedback; tomorrow i will go to the HHV6 website and try to find out how to email kristin loomis; it sounds like she is one of the best resources around...what do you mean by detox? i know what the word means of course, but i am wondering how you would approach that...is it an herbal remedy? i have had very poor luck over the years with herbs, supplements and other alternative therapies...but i would like to know more detail about what type of detox you are referring to...my mind is very open now; not that it was ever really closed...but one does tend to become a bit cynical about all of the "snake oil" that is out there! i'm not at all saying that what you are referring to is "snake oil"!!

    again, thank you so much for your response; you are very kind...best regards, clo

  7. jasminetee

    jasminetee Member

    I'm so sorry to hear all you've been through. I had no idea. That's got to have been very hard on you to go through having acute pancreatitis and then emergency surgery. I'm saying prayers for you.

    I've had CFS for over 2 decades as well and after my 7 mopnths on Valcyte last year I'm feeling a lot like you are. I start to feel stronger but then I get sick and in major pain again within just a few hours. I also still get out of breath easily although it's better than when I was on Valcyte.

    I hope you start feeling better and that you heal quickly from your surgery.

    Hugs,
    tee
  8. Lichu3

    Lichu3 New Member

    agree with the other posters that some of what you are experiencing may also be due to the procedures/ surgery you had to go through.

    I received Cort Johnson's report on the June HHV-6 Conference today (it's in 2 parts and somewhat long) and would encourage you and everyone else to read it as it does give a lot of hope.

    http://phoenix-cfs.org/
  9. ladybugmandy

    ladybugmandy Member

    hi clo. there is the nancy klimas interview:

    http://www.immunesupport.com/library/showarticle.cfm?id=8646

    love
    sue
  10. SpecialK82

    SpecialK82 New Member

    I can feel your pain. We are all here for you and can relate to the sheer torture of this DD. You have suffered more than anyone person ever should. I agree with you that we can bare anything but the loss of hope. I would rather have any other self-limiting illness no matter the pain. Just know that I have lost hope a few times with this DD and something has always eventually come along that has re-kindled it.

    I thought to myself this morning - it's a new day, and that means we are one day closer to a cure. I know that we just have to keep surviving until that day. One day we will look back at all of this and tell people what a nightmare it was before there was a cure.

    We will all just take care of each other until then.

    Gentle hugs,
    Kristina
    [This Message was Edited on 08/11/2008]
  11. clo1

    clo1 New Member

    thanks for the links...i read the nancy klimas interview and it gave me some encouragement; and lichu, i went to that site and realized i will need to read it when i have a little more mental stamina! but thank you both so much...clo
  12. clo1

    clo1 New Member

    thanks so much for your kindness and support; you are very thoughtful and empathetic...i really appreciate it...clo
  13. clo1

    clo1 New Member

    dear tee, thanks so much for your post and i am so sorry to learn that you are in similar shape...this shortness of breath started while i was on the valcyte, then got somewhat better for awhile when i did regular deep breathing exercises and used an incentive spirometer to measure my progress...now it is worse than ever and i seem to be constantly hungry for air...i am in the process of making an appointment with a pulmonologist just to rule-out any other possibilities and to hopefully get an inhaler so that i can breathe more comfortably...

    i thank you for your prayers, and you certainly have mine! best regards, clo
  14. jasminetee

    jasminetee Member

    I hope the inhaler works for you. I've been thinking about you and hoping you are starting to feel a bit better. It's so hard being sick like this all the time and dealing with so much pain on top of it.

    Hugs,
    tee
  15. porchswinger

    porchswinger New Member

    Hi Clo,

    I am so sorry you are having such a hard time. Because you write so beautifully, your posts were the first posts I read when I first joined this message board last December, so I feel invested in your experiences.

    I have had CFS since 1986. I took valcyte from Jan 1 for 25 weeks, until Montoya spoke at the conference about the fact that there was no improvement from fatigue with the valcyte.

    My fatigue is definitely worse-- worse than before the valcyte. I need more sleep and have less hours in the day to enjoy. The good news is that I don't have the shortness of breath I experienced while on the valcyte. But I don't feel my cognitive function improved any.

    I sympathize with you. You got a triple whammy with the AP and emergency surgery on top of your CFS.

    Right now, I'm kind of turned off to doctors and "new" unproven treatments. Years ago, my husband gave me Kutapressin injections for 8 months before I gave up on it, only to read that they don't work. At least I didn't get any worse on the kutapressin.

    Someday, someone who tries and experimental CFS treatment will get better from the treatment (as opposed to the vagarieties on the illness). But before that happens, how many will take an experiemental treatment only to get worse? A lot, I think. So, I'm folding and leaving the table. I'm heading out to relax in the sunshine and read a good book.

    Porchswinger
  16. sascha

    sascha Member

    it's really a bummer it didn't help you more. getting improved mental function back is certainly something, and not getting headaches.

    presumably your viral counts went down. so there are other things going on. i took Barrowinnovations advice, and consulted with online doctor who does digestive analysis and makes recommendations for diet and supplements to build up immune system based on idea that @70-80% of our immune system resides in the gut. if you get that functioning properly, then you have best chance of overcoming health problems.

    with cfids, so many systems can go out of whack, and it takes a while to sort them out. i did get improvements after the rough ride on valcyte, but am very very weak, totally de-conditioned; muscles in state of atrophy. BUT i feel better in a number of ways. i really really wish that for you and hope you can find other beneficial ways to address what's going on.

    the website on the CDSA (Comprehensive Diagnostic Stool Analysis) testing and follow-up is, BecomeHealthyNow.com. Barrowinnovations/Karen has gotten miraculous help from it. you can find her posts on this web site.

    i hope you find answers- so sorry for hard things you've gone through- i can't imagine after enduring the valcyte to have the other crises thrown at you. best of luck! Sascha *keep posting
  17. Timaca

    Timaca New Member

    Big hugs to you, my online valcyte buddy. UGH. I am so sorry for all those who continue to suffer with this illness.

    All I can say (to myself and to others) is never, never give up. There is an answer out there.....

    Clo...are there other pathogens that you are battling? Have you had tissue taken from you recently? You can get that tested for various pathogens......

    Enterovirus is notoriously bad at showing up in the bloodstream (via antibodies) yet showing up in tissues....perhaps that is part of your problem too?

    It seems to me (based on my experience) that if we have something like HHV-6, then it is likely that other pathogens have reactivated as well...

    Here's some tests to consider running...again my hugs to you...Timaca

    If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.

    Focus Diagnostics Lab:
    http://www.focusdx.com/focus/1-reference_laboratory/index.asp

    40540 HHV-6
    2420 EBV Panel
    40543 HHV-7
    41380 Parvovirus
    41025 VZV
    2385 CMV
    40525 HSV 1/2 ELISA
    2075 Enterovirus Panel
    40735 Mycoplasma Pnumonia
    23000 Chlamydia Serologies

    40795 Q Fever
    40205 Brucella
    40881 Bartonella
    40678 Lyme C6 peptide
    2034 Lyme IgG and IgM western blot

    Tick borne disease tests (Q-Fever through Lyme tests) can also be run at
    Igenex: www.igenex.com and
    SUNY Stonybrook: http://www.path.sunysb.edu/labs/ticklab/TICKLAB.htm

    Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here’s some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.

    http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=26

    http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=134

    For info on
    Lyme disease: www.ILADS.org; www.lymediseaseassociation.org
    HHV-6 and EBV: www.hhv-6foundation.org
    Chlamydia Pneumonia: www.cpnhelp.org