10 months post valcyte update

Discussion in 'Fibromyalgia Main Forum' started by clo1, Nov 19, 2008.

  1. clo1

    clo1 New Member

    hi friends and new members to the board;

    i'm sorry to have been remiss about posting; i was initially intimidated by the new format but now i see that it's not too difficult to navigate...

    i am doing EXTREMELY poorly; i was in the stanford clinical trial and have now been off the valcyte since january '08...i have not had a good day, a better day or any kind of a decent day in the last 2+ years; the valcyte took away my headaches, but other than that it didn't help, and in fact i have worsened in many ways...i don't necessarily attribute that to the medication, but for my system it was extremely toxic...throughout the course of the trial my white blood cell count was extremely low - it's always been lower than normal, but it was very low on the valcyte...

    i feel as though i am deteriorating and failing to thrive...it's so weird because it feels almost like a different manifestation of cfs than i have had in the past, although they have all been extremely debilitating...this time it feels like i will not get better, and that is not pessimism, it's just an internal sense of my body...

    since march i've been hospitalized 3 times for acute pancreatitis, but that was likely caused by gallstones and i have since had my gallbladder removed...although i was hospitalized again for 4 days in october, 2 months after the surgery, for yet another bout of acute pancreatitis, this time of unknown origin...i doubt that there is a relationship between the valcyte and the ensuing pancreatitis but i don't know for sure...

    suffice it to say that healthwise things couldn't be much worse...i do believe i am in the minority because i've read SO many posts here of people who have improved on the valcyte...also, as far as the clinical trial goes, i think it's about 70% who improved and 30% who didn't...

    i have an appt. with dr. montoya next week, and i promise i will post anything he says that he does not consider "confidential"...i will certainly ask him when the trial results will be available...all the best to you, i have missed the contact here...clo1
  2. SpecialK82

    SpecialK82 New Member

    Hi clo1, so sorry to hear that you are still not doing well. I know the feeling of hopelessness can be overwhelming at times, thank you for updating us.

    I was on Valtrex for 8 weeks and my stomach was so torn up that I stopped. I have been off for almost 4 weeks and the pain is worse, burning pain in stomach and esophagus and feeling of fullness. I have been taking Prevacid (acid reducer) twice daily and it's not helping. I am scheduled for a scope this Friday as it feels like I have an ulcer.

    I guess I'm not positive Valtrex caused this or if it would have happened anyway. Thought it was interesting you are also having abdominal problems.

    Please know you are in my prayers as is everyone on this board. I hope you will get something beneficial from your visist with Dr. Montoya.

  3. clo1

    clo1 New Member

    hi kristina,

    i am thinking of you today as you have your endoscopy; please let us know how you do...you are in my thoughts...yes, it's weird because i didn't start having the abdominal pain until months after starting the valcyte; maybe it was just coincidental as it may be in your case, or maybe not! who knows?? all the best to you, clo
  4. SpecialK82

    SpecialK82 New Member

    Thanks for thinking of me today clo. I don't know what to think right now. I had the scope and everything looked normal.

    I am so discouraged with having pains witht this DD and test after test coming back normal. He is now sending me for a CT scan of my abdomen and pelvis next Tuesday, and if that looks OK, he is going to do a colonoscopy.

    How did they diagnose your pancreatitis? Did they get that from a CT scan? Or did they run other tests as well? I just don't want them to stop looking until they find the problem.

    The antivirals as you say may or may not have contributed to our problems but it does give me considerable pause as to if I want to continue.

    Hopefully we will get some answers together - hang in there!
  5. ladybugmandy

    ladybugmandy Member

    i am also having quite a lot of digestive discomfort now! i am also wondering if its all these antivirals.

    i am going to continue on them anway. i have decided to continue on them no matter what.

    i hope you feel better soon.

  6. sascha

    sascha Member

    you are having, and have been through, tough times. i hope you will come across other treatments/approaches that will lift you back up. we are in early times with this condition- people are struggling to find answers. i get the impression, though, that there are a number of high-quality people searching for answers for us. it's a long long haul. we have to make lots of concessions in our lives to get by, and it's a misery not feeling better and losing hope from time to time.

    my case is following its own route. i was on the valcyte for 5+ months. my HHV6 went way way down (i'm due to be tested again next month just before i see Dr. Montoya). i did lose some cifds symptoms- mainly the feeling ill all the time ones. in exchange i became weaker and any exertion at all just floored me. also odd things happened: i have dystonia affecting my speech, and that has worsened to point i now have to write notes at times to sales clerks (when i do errands- my main activity was necessary getting of supplies- groceries, things like that), then return and recover. also, i have terrible pain walking- i don't know what that's about, but i basically can walk very little.

    the gains i have made are the feeling less sick, as such; and my head is definitely clearer and better able to function.

    i have great motivation to do all i can to recover- well, of course there are many reasons i have for myself; but also, i'm becoming a grandmother early next year- my daughter-in-law is having TWINS (fraternal; a girl and a boy). i really want to be able to help out and be involved, so i jumped into the next phase of my healing endeavor (thanks to barrowinnovations here on this site) and i am now working with online doctor to heal the gut- based on experts findings that 80% of our immune system is located in the gut.

    it costs and this scares me- i don't have much money- but i'm using a credit card i had paid off. this approach involves lots of testing (stool. saliva, urine, blood); questionnaires, phone consultations- then when enough information has been gathered, the treatment plan begins, which means dietary recommendations and prescribed supplements. at the moment i have an assortment of maybe nine powders and pills i take three times a day.

    i've been on this plan for a number of weeks now, and it has had effect of increasing my well-being functioning time. i've even started painting again (key sign- i hadn't been up to painting for almost a year).

    i have to be very very careful about where i go and what i do- noise, crowds, too much activity, lights being too bright- all can be very painful for me. but !! i am seeing progress. i don't know how far i will go with it- Dr. Farr says over time my blood tests and other tests could revert to normal (the findings- that have shown all sorts of things testing outside normal ranges). i am coming to maybe believe i can keep making progress.

    i bring this up in case it's something you'd like to explore for yourself. it's amazing the things that regular AMA doctors don't look for that Dr. Farr tests and finds are not within reference ranges. if you're interested in finding out more, look for past barrowinnovations posts on this site. she's had remarkable and amazing results, from having been bed-bound for 5 years, she is now out riding bicycle, going on vacation, living 'normally.' i've been corresponding with her. also, the website i am working through is becomehealthynow.com

    our lives- that's all we have to work with- i am so intent on getting mine back so i can enjoy it, be productive on my own terms, do what i want to do- i really really hope and wish that you find your way- very best wishes from Sascha
  7. stschn

    stschn New Member

    It is so good to have you back on the mb. We have missed you. I'm so very sorry for all you are going and have gone through. I as the dumbest person on the planet had two weeks where I felt so good that I was sure that I didn't need the wheelchair all the time so I walked just a short distance into have my eyes examined one day-a short distance to see a movie (yes the secret life of bees) the next day then a short distance to see the insurance agent the following day and then when my husband asked if I was up to going out to lunch I thought that I could walk the short distance in and the next day into the dentist office. Result? Back in bed sleeping most of the time at least I had sense enough to go to bed. I was sure I had stopped the push and crash cycle and then this. It's hard to believe that I can be so stupid I've done it over and over for almost 21 years. I hope this is my finale lesson. It's no ones fault by mine that I've shattered the vase again. O.K. enough of my kicking my butt but if I've been fortunate enough to have some inprovement It's hard to forgive the fact that I have thrown it away and have to start over. I hope that you are up to your appointment with Doctor Montoya and I will be think up you as always. Love Joyce
  8. clo1

    clo1 New Member

    that's so frustrating when nothing is clear on tests! my story with acute pancreatitis has been a total nightmare and the first episode was acutally CAUSED by an endoscopic procedure called ERCP; it goes farther down the digestive tract than an endoscopy; far enough to take pictures and shoot dyes around the pancreas and common bile duct; anyway there is a 3-5% chance of getting acute pancreatitis from it, and as luck would have it, it happened...but the pain of acute pancreatitis is so unbearable that it requires admission to the hospital and several days of no food/fluids; IV fluids only with lots of IV pain meds and anti-nausea meds...and all kinds of bloodwork constantly...but the reason in the first place for the ERCP was some abnormal findings that had shown up on both CT and MRI scans, which were done after multiple episodes of acute abdominal pain while i was on the valcyte...

    oh the whole saga is such a long and boring story that i won't go on...suffice it to say that when you feel like something is wrong, you're right, and they need to find out what it is!!

    it doesn't sound like pancreatitis that you are having to endure, but i certainly hope you are able to get to the bottom of it...it definitely sounds like gastritis or an ulcer or something along those lines, but clearly they ruled those out...so please let us know what, if anything, shows up on the CT scan...best regards, clo
    [This Message was Edited on 11/23/2008]
  9. clo1

    clo1 New Member

    it's so good to learn that you are making some progress and that you are possibly onto something with the gut issues; and that's SO exciting about your grandchildren and that they'll be twins!! that's so sweet and it must give you all of the motivation in the world!!

    i am currently feeling very discouraged by alternative practitioners...out of desperation about 2 months ago i started having acupuncture by a practitioner who does house calls; she also started me on herbs; quite frankly it was a total waste of money and i don't have much to spare...i have been that route before, but i was just feeling like i should try something again, since western medicine hasn't helped...over the last 22 years i have tried so many alternative therapies (acupuncture, herbs, homeopathy, nutritional changes, intravenous hydrogen peroxide and intravenous vitamin C, energetic healing...the list goes on) and have found that it has not helped at all...

    so i am jaded in that arena; but if this approach seems to be helping you, i think it's just great, and my cynicism does not apply!! all the best to you and congratulations on becoming a grandmother...clo
  10. clo1

    clo1 New Member

    hi joyce,

    please don't be too hard on yourself for trying to have some normalcy in your life! who wouldn't want to take a few extra steps after being ill for so long?? i admire that you keep on trying and looking for new ways to live with this "THING"!!

    i will post sometime after my appt. with dr. montoya; hopefully there will be some conclusive results from the trial; my biggest fear is that he'll say: "we couldn't really find anything definitive"!! oh my god; wouldn't that be a bummer?? with blood in labs all over the world; hopefully that's just a fear, but i'll let you all know as soon as i can...love, clo
  11. ladybugmandy

    ladybugmandy Member

    ablashi feels that the valcyte trial did not use the correct markers to measure improvement....

    i wish they would finally publish the results! geez!
  12. stschn

    stschn New Member

    I know Dr. Montoya told us that the hardest thing in all of this was that the answers from the people in the trial about how they were feeling was of course subjective and often when they could not see any improvement the staff working with them could. I know that was true in my case because my husband pointed it out to me and after giving it some thought I realized he was right.
  13. ladybugmandy

    ladybugmandy Member

    st...you are so right. its like living with someone and noticing aging...the improvement in CFS is SO incredibly slow. i know its happening but it's like sometimes i am not 100% sure. i should make a graph of some sort.
  14. Slayadragon

    Slayadragon New Member

    Hi Clo,

    Thanks much for posting your update. I'm truly sorry to hear that you're not doing better.

    I have been watching the Stanford study for almost two years now (since it was first announced) and, like everyone, have been disappointed that gains have not been more consistent.

    Last year, during an time overlapping with the study, I took a mild antiviral (Famvir). I found that even at a low dose, I had the same sorts of disastrous effects that people taking the Valcyte had.

    My doctor insisted that I not take a dose high enough to make me really sick and that I not move to Valcyte. Nonetheless, my condition went down and stayed there after I discontinued the drug.

    Some time later, I found that I had a toxic mold problem in my house. (This was hidden in the walls, meaning that the mold couldn't be seen or smelled. I never would have tolerated it in my home if I'd had any idea it could be there!!!)

    Since moving out and avoiding mold attentively starting a year ago, my health has moved from mostly bedridden to essentially well.

    Especially relevant to your case, my ability to tolerate both antivirals and antibiotics has gone up tremendously. I was unable to tolerate doxycyline at all in the past; now I am able to tolerate a large dose (400 mg) without problem. I experimented briefly with Famvir and found that I'm able to tolerate it without effect now too.

    I'm not sure whether I should continue on antibiotics or antivirals at this point. I am wondering if doing so might allow me to remain healthy even with small mold exposures (I have to be scrupulous about it now). It will be interesting to give it a try to find out.

    Anyway, my current thought with the Valcyte study is that perhaps insofar as study participants were living in environments with a lot of toxic mold, their immune systems were unable to keep up with the action of the drug. (Toxic molds like stachybotrys have a major effect on the immune system.)

    On the other hand, if some patients were not in environments with a lot of toxic mold (either because that was not an illness trigger for them or because they had moved away from it after the illness was triggered), perhaps their bodies were better able to keep up with the Valcyte and thus able to obtain benefit from it.

    One thing that I think might have happened to me during the time that I took the antiviral is that my endocrine system was severely compromised. I know that it had an effect on my adrenal hormones and Human Growth Hormone level, but I now think that it may have decreased the level of a hormone called MSH as well. MSH is a hormone that, amongst other things, helps to keep direct effects from toxic mold from getting too bad. If indeed my MSH decreased as a result of the antiviral, that would have explained why I stayed sicker after the drug was discontinued. (Unfortunately I don't have before-and-after levels.)

    I'd really like to know if toxic mold might be an issue for you.

    Would you be willing to take a screening test to see if it might? It just involves looking at pictures on your computer screen, and it takes about 15 minutes.

    The cost is $15. I will be more than happy to reimburse you for the cost; you can contact me at the same name on Y! and we can set up the online account.

    The web address for the test is:


    This is the test of Dr. Ritchie Shoemaker, author of "Mold Warriors." He's becoming increasingly well-known amongst CFS doctors and is a member of the Sonoma Working Group (I think that's the name!), of which Dr. Montoya also is a member.

    I'm sure that this all sounds like gobbledygook. The toxic mold stuff is extremely complex, and nothing has been written about it with regards to its effects in CFS. I'm hoping to change that shortly, however.

    Please let me know if I can try to make it more clear. Thanks much for participating in the study.

    Best regards,

    [This Message was Edited on 11/27/2008]
  15. carol2354

    carol2354 New Member

    I am sorry to hear about the valycte not working. I am seeing dr.lerner and his approach is very different from dr. M. I have mycoplamsa which needs to be treated prior to the viral infections or the viral infections will get worse. he calls them co-infections, lyme, etc.

    He does so many tests..

    I really understand how you feel. I have never been this ill before. I start treatment in a few weeks.

    Please do not give up. I met a women from CA that was in dr. M study and at the last min, she went to lerner and it ends up she also has lyme disease! so she would not have gotten better with the antiviral. I have been to soooooooo many doctors, dr. lerner is in a league of his own.