Need a vote of Confidence on Valcytefrom PGWS

Discussion in 'Fibromyalgia Main Forum' started by PGWS, Feb 4, 2007.

  1. PGWS

    PGWS New Member

    I am at week 11 and silly me thought I could go out for the day and get some things done/attend to responsibilities (remember I have no choice-I have no support). Anyway I forced myself to get up early 7:30 on Saturday, (I usually sleep until 9:30-10:30, 10 to 12 hours)and had a full day (not like what I would consider a full day prior to CFS), came home exhausted and today I look a feel like a disaster, of course swollen glands too. I really feel that unless you are in a nurturing environment and can rely on others to take on tasks and responsibilities that you would normally need to do in a normal functioning life, that you will never get well, no matter what you take.
    Please convince me otherwise, because I have no alternatives.
    As some background on myself, this illness started(5.5 years ago at 41) and this is what I was like before the illness:
    My entire life I have been a high energy, highly motivated, spontaneous, driven, athletic, ambitious, spirited person who craved energy, ideas, problem solving, and most of all getting up early in the morning to start the day. Professionally, I was an over achiever and I always love to work long and hard, great at multi-tasking and was very successful in the work environment (a bit of a workaholic). I am educated with an MBA and I have achieved because of my innate energy, enthusiasm and an inner voice that told me I could accomplish almost anything I put my mind to. Physically I looked very good, fit and felt very strong and healthy. I did many athletics such as run, bike, tennis, ski, equestrian riding, work out at the gym, always kept fit, enjoyed meeting new people, going out socially and always cared for and extended myself to others in all aspects of my life. In order to do such things my day usually started at 6:30/7:00am and ended at 11:00pm and I felt great and could not wait to wake up again the next day and start all over. My family and personal relationships have never been at par with the other aspects of my life but I never allowed that to drag me down. I have encountered many difficulties in my life prior to my illness such as a terminally ill father, who died when I was in my twenties, in my late thirties I was married and divorced in a short period of time (never had children. Professionally, (although I was successful at the many careers/positions I held), I did attended the school of hard knocks to get there. My point is, prior to my illness, because of my energy and attitude; I always endured these difficult times. Therefore, stress alone is not the culprit for CFS, stress over a long period of time, definitely helps foster CFS.
    Now I will tell you what has happened to me beginning in September 2001. I feel it began as a result of finally getting very worn out from no down time, frequent job travel, ongoing stress from job, family and personal relationships, helping everyone else, with no one to look after me at the end of the day, care for me and encourage me to take it easy. I began getting sick all of the time with strep throat, swollen glands, fever, bronchitis, and colds but still did not take time off to rest. As time went on, this became chronic. I went to the doctor and was diagnosed with MONO/Epstein Barr Virus and was told to rest, but I did not because my position/job did not foster my taking care of myself and everyone saw me as invincible. In December 2001, I did a very stupid thing and got a flue shot. As months went on, I started to feel very physically tired, my entire being was fatigued and I had to sleep at least 10 to 12 hours a day and still force myself to get up. I felt like I was in a Coma and even after waking up I was still so mentally and physically fatigued. When I tried to exert myself physically, my body felt so heavy I could not exercise. Although I started to sleep more, people at work and family were always telling me how tired I looked and that I looked very unhealthy/sickly. Every night when I went to sleep I believed I would be back to feeling normal the next day. Since this was not the case, throughout the year 2002, I proceeded to go to more doctors and had all kinds of blood tests done but they could not find anything wrong in the blood tests. By January 2003, I stopped working/left my job, but I felt this was a good thing because it would allow me to take as much time as I needed to take care of myself to get better. I was convinced that at the most I would be back to normal in a year and this would just be another episode in my life that I would endure and get through. As time went on I got worse (more mentally and physically fatigued) even though I had stopped working. I was still sleeping 10 to 12 hours a day, did very little exercise (now I do none), did not exert or push myself to do anything that I was not up to, could not at all make decisions. I was always in a mental fog especially if I needed to think something through, read or make a choice/decision about something. I barely had the energy to take a shower, dry my hair, get dressed, make coffee or cook, go to the supermarket, talk, lift my arms, move my legs, read, drive, and I lost my cognitive aptitude (now count on my fingers most of the time and can't spell, drop things all the time, bang into things, mix things up, can't logically organize, lose items etc.). All of the things that use to make me feel good or gave me energy or an adrenaline rush now did the opposite. The only thing I felt I could do was to sit on the couch and watch TV.
    Over these years, I have been to every type of doctor(s) in hopes of some type of resolve such as Internist, Infectious Disease, Rheumatologist, Endocrinologist, Neurologists, Hematologist, Acupuncture, Chiropractor, Naturopath, Nutritionist and I have been on every supplement, herb, remedy, diet, thyroid hormone, (now female hormones) most antidepressants, took tons of tests and received no hope or resolve. I just seem to get worse with less intermittent periods of feeling good and/or none of these practitioners seem to care or believe that Chronic Fatigue Syndrome/Chronic Epstein Barr Virus is a real illness. They made you feel worse by either giving you false hopes in an effort to selling you all sorts of stuff until they have sucked up your money, or they push you off to the next doctor because they don’t want to deal with it, but most often they tell you that your are chronically depressed and you need to take high levels or multiple antidepressants, which for me is the most insulting of all. Yet when you provide them with research, studies or information on this subject with treatment protocols that have been used, whereby results have been noted, they will not even read the data or research and insist that it is not credible.
    During these past 5+ years, everything I described myself as above is the complete opposite of what I am now. I have completely lost my authentic self as a result of this illness, especially since I don’t have the cognitive aptitude or energy that I once had to help myself. Over the years, I felt better for a week or so and I was so excited because I thought I had beat this horrible illness and then it is as if the energy you exerted because you were happy is enough energy to destroy you again. It does not matter what type of energy you exert, positive, negative, talking, thinking, physical or mental; any energy or output, stress or decision-making is toxic to someone suffering from this illness. The other irony of this illness, because of its vagueness, lack of medical acceptance and overall understanding and awareness, is when you do make yourself do things, people think you are not ill and feel you are making it up and yet when you don’t do anything they think you are just not trying hard enough to get better. Also, since I do not look as tired as I use to since I sleep and rest as much as I need, people think you are fine. Yet, if I dare to get out of bed before 9:00am or perform more than one task in a day, I will be non functional for the next week or two or I will get sick. No one cares or understands because outwardly you are not dying, but internally you really are because you are so limited physically, mentally and emotionally, in every aspect of your life.
    My life has completely changed since stricken with Chronic Fatigue Syndrome and I have a hard time remembering the person I use to be and whom I so admired. I have never been able to go back to work and have been living off of my hard earned savings/net egg. Terrifying, that is why I must get better. I can't imagine hope for another male relationship. No one wants to hear about my illness or feelings, they just want me back to the person I was. Since, I have no real support system (except my animals?) I am very lonely and of course depressed as a result of this and the way my life has now turned out. What has kept and keeps me going is that I have the horses, which for the first few years of this illness, I still try to ride as much as possible or just spend time with them. But as of mid 2006 (as with everything else, this disease has now negatively affected the last thing (riding) which I managed to receive limited enjoyment from and utilize as a temporary escape from my illness. I am struggling to keep and maintain them since it is financially draining me in the long run, and now I have been unable to ride due to the severe fatigue. I also have a beautiful dog that gives me love in spite of my illness. I fight to prevent this illness of striping me of everything. This all takes energy, but they are my responsibility and I cherish what they have given back to me at the expense of this illness. They give me a reason to keep trying and a reminder of what I was once capable of.
    Anyway I did not mean to bore you with my story. I just wanted you to know what I was like (before versus after CFS)so as I hopefully continue on with my Valcyte treatment, you can anticipate the range of where I hope to be with respect to recovery or how I will measure my recovery. Right now at week 11, I am nowhere close, although others who are completely bedridden may think I am far. It is all relative to your life and day to day survival.

  2. Slayadragon

    Slayadragon New Member


    PGWS: I think you're doing fine. More later.....
  3. lilbabe

    lilbabe New Member

    Dear PGWS

    I have pretty much suffered with this illness for 35 years. It has ruined my life. I was an opera major. Now I can barely sing. Like you I am forced to do things. I have no support system. ON top of that i have a husband who has been critically ill for two years. I am hoping that the Valcyte will help me. I like you , my animals give me support. No one knows how bad I feel every day. I can't plan anything ahead, not lunch dates or anything. All I do is pray for a miracle. I feel for you. You are not alone
  4. SBulldog

    SBulldog New Member

    I feel your pain, I could have written your story except I have a wonderful, understanding husband and no pets. Do you feel you are better, worse, same, or detoxing on Valcyte? I am probably starting it soon, but was told to expect to be bedridden for 3-4 weeks. What expectations did your doctor give you?
  5. PGWS

    PGWS New Member

    Lucky us with CFS. Sbulldog, I see you understand how fortunate you are to have a wonderful supportive Husband, that will definitely help with your recovery. I am certain of that. Lilbabe, I also play an intermittent support role for the past 9 months to my x-husband who is dying of a stage 4 malignant brain tumor (GBM), even though he never understood or cared about my illness. At times it actually helps get my mind off of my issues seeing his suffering, but unfortunately it is also very toxic for us with CFS.
    Anyway, here is how it goes for me on Valcyte so far.
    Week one and two I felt no change at all on Valcyte/no side effects, week 3 and 4 actually felt better & looked better/no side effects, week 5-10 extreme side effects (major swollen glands, blurred vision/redness in eyes, dizzy, can't sleep at all, extra sensitive teeth to hot/cold or touch, more than normal depression/crying all the time, my feet were killing me if I stood and walked around for a short time regardless of shoes, sneakers or slippers or barefoot, my head felt heavy so I was only comfortable laying down, more than extreme headaches, fevers/chills on and off, cold/hot while trying to sleep, major ringing in ears (I did not have nausea or diah). No blood test issues yet except my red blood cell count is bordering the low range. Had my eyes checked and they are fine. Upon week 11, the side effects are subsiding to almost gone, but I do not feel or look better at all and have lingering swollen glands/sore throat/redness in eyes and I look sick. Therefore, do I feel worse, definitely. Do I think it is because of the Valcyte, yes. Do I think I am making matters worse by being on the drug which is taxing my system and also having to deal with so many things by myself, yes and this could destroy my treatment in the long term, but I have no options. Had I hoped I would feel a little better by now, yes it is a bit discouraging and I hope the Valcyte treatment is realistic. I have been told to expect these bad symptoms, especially since my viral blood test readings for EBV & HHV6 have become even more elevated (which is what they anticipate according to my doctor)since I have been on Valcyte, as of blood tests done around week 4. Bedridden at least 3 to 4 weeks, I think it will be more for me, since I have to get out of bed. I hope I can share a success story with you all, thinking about starting Valcyte to give you hope. All the stories are so sad and we only really understand how we each REALLY feel.
    [This Message was Edited on 02/04/2007]
  6. Slayadragon

    Slayadragon New Member

    That's interesting that your EBV and HHV6 measures are expected to go up partially through treatment. I wonder what would cause that to happen.

    The only thing that I keep thinking is that if I'm this sick from taking AV's, there must be an awfully lot of viruses in my body. And that can't possibly be a good thing.

    If none of that other stuff worked, then it seems reasonable to think that the vast majority of your problems may be viral. That's not the kind of thing that's going to get better on its own.

    For some people, living with CFS at the level they're at (whatever that is) is tolerable. But if it's not tolerable, I don't think we have any choice but to try.

    I'm really, really exasparated with feeling this ill. It's been dragging on for a long time (about the same amount of time for me as it has been for you). At some point there has to be an end, but it certainly does take a lot of determination to get there.

    Hopefully just getting your frustrations out is useful.

    If you want, I'd really like to read how you're doing on a daily basis. I am going to be switching to Valcyte soon, and I'd like to know what I might expect. Other people would too, I think.

    Best, Lisa
  7. foxglove9922

    foxglove9922 New Member

    Hi PGWS,

    Count me in,,,,,,,,I'm giving you my vote of confidence!

    Like lisa said, I too am surprised your viral counts went up on Valcyte. Do you know if that is normal?

    Like you, we all have stories of our previous lives and subsequent life with CFS. I do feel your pain for I'm a single mom of a CFS teenager. My support system is almost non-existent.

    Take this weekend for example, I've been on 500 mg of Valtrex (similiar to lisa's story with Famvir) to try and rid some of the critters before bringing in the Valcyte. I upped the dose to 1000 mg on Friday and have managed to move from bed to the couch and back to bed at night. I've had a couple cups of tea, water, a banana, warmed up stew and that was the highlight of my weekend. I am a little better today but for the third day in a row I will not be leaving the house.

    I too am very, very lonely except for my 2 cats. I was also high energy working 10 plus hours a day at a job I loved,,,,,my life was go, go, go. Due to my daughter's illness and need for education of a disabled child, we had to move from my support system (mostly family and friends) to accomodate her needs.

    To me,,,,,you are a very, very valuable person. I look forward to all of your posts as you are paving the way for some of us heading down the Valcyte road. Just having an idea what to expect is helping me to prepare for what's ahead.

    So, please hang in there and know that in a huge way you are helping some of us here who look forward to your informative posts.


  8. shar6710

    shar6710 New Member

    I don't have anything new to add, I think Lisa and Dncnfngrs covered it well.

    I thought the same thing as Dncnfngrs did about your X too. I won't add anything to what she said except that perhaps its something you could think about.

    I personally think all of you "guinea pigs" are rather brave. I talked to my husband about valcyte and the possibility of seeing Dr.Lerner as he is only a few hours away. He and I both agree that for now, since I have come out of my terrible crash from last summer, that we will wait for news coming out of the trial. I'm going to continue with my current plan for now.

    I think you should continue on your current plan too. Of course that's easy for me to say, but I think you have come too far to stop now when you have already invested so much.

    Good luck and please keep us posted,


    BTW if you ever want to talk horses go over to the Chit Chat board and start a post and I'll join in. You can see a picture of my mare in my profile.[This Message was Edited on 02/05/2007]
  9. PGWS

    PGWS New Member

    Thank you-Your input is well received and as hard as it was I did put closure to helping my x husband with his terminal situation (its called blocking out). I am also considering the other stuff you mentioned, it is not that I am not willing to pay for extra stuff, I don't even know how to plan for things anymore, coordinate, make phone calls or I am never sure if I want someone in the house, then people expect you to talk to them/listen to their problems and they don't get that talking is so exhausting, not sure if I will be asleep, with doctors-if I can make the appointment, if I want to take a shower and all the people who have known me so long before I got sick, still don't get that I CANNOT DO IT ANYMORE, even when I spell it out like that and ask for help (including my immediate family). As far as my animals (the horses), I eve pay for extra services for their care and I have one barn/riding friend who checks up on them, but it is like (for me at least) sending your kids to boarding school/babysitter and expecting that they get the care they need, like they would from me. Then if they get injured, it becomes a whole new problem for me. So I feel like a dead beat Mom, since they are my responsibility. Just the mere fact that I have been there so little in the past months, shows how bad I am feeling. It is hard to explain. I also need to sell my house and move to another area because I cannot afford to live where I live anymore it is too expensive to maintain, even if I get better and go back to work I have now depleted 3/4 of my savings, so I have to relocate. Don't ask me how I am going to swing this. Anyway enough of my problems, there must be a reason for all of this, right? Pray for Valcyte to do its job!

  10. mezombie

    mezombie Member

    PGWS, you certainly have my vote of confidence that Valcyte will help you fulfill your dream of returning to your former self.

    Frankly, I admire you for being such a trailblazer! I hope someday to consider Valcyte, but would prefer to wait until there is more data on the drug. And without people like you, there wouldn't be that data. So know that you are helping me and lots of other people.

    It sounds like you are feeling particularly bad because of all you did on Saturday, as well as the expected Valcyte herx. All the posts I've read from others on Valcyte make it pretty clear this is an awful period to go through. But remember, it is temporary.

    Maybe this would be a good time to reread the article which mentions the dramatic difference Valcyte had on one of the Petsmart co-owners. You'll get there!

    In the meantime, I, like others who've responded to this post, would urge you to try to think of ways to get some practical support.

    I have a two women come in to clean my apartment every two weeks. They're fast, they're good, and they definitely are worth it. The disruption is minor; usually I just move from the couch to the bed or vice versa.

    I also have hired someone to take a load of laundry home and bring it back, clean and folded, the next week. She also sets aside and freezes a portion of meals she cooks for her family if I ask her to (for a very reasonable fee).

    I found her through an elderly neighbor who needed assistance and had hired her.

    Until she moved, one of my neighbors offered to pick up groceries when she did her shopping. Might there be someone near you who would do that?

    The other day I ordered groceries online which were delivered the next day. What a big help!

    I know it's difficult right now for you to organize any of this, but maybe a friend could help get you connected to services like this.

    In the meantime, please hang in there! I'm rooting for you!
  11. PGWS

    PGWS New Member

    Never heard of Burber? (just Bourbon). I will look into that.
    Just last week I switched Doctors to continue my treatment on Valcyte from a Bozo that only prescribed Valcyte to me at my request so he could sell me everything in his inventory to DR Susan Levine who I so far like very much. She encourages you to send her emails if you have questions as respond very fast and has phone calls with you to discuss labs so you don't have to go to the office.
    I have a call with her this Friday so I shall see. I actually feel a little better today. Very rare for me to be able to be on the Internet writing so much, but EVERYTIME I say I feel a little better, the big bad CFS devil surprises you with another sick trick. I assume you know what I mean. My feelings on being an over achiever (I competed with myself) is that it's OK, but while you are expelling all this energy etc., just make sure there are loving people to support you and a solid, mentally healthy, appreciative home environment to come home to. My support system was Me, Myself and I, that does not work and that was one of the many lessons I learned from this illness. The second lesson was how to say "NO" and many people do not like that change.
    I am there for you all too, otherwise I would not spend my energy writing this stuff.

    Thank you so much
  12. roge

    roge Member

    Not a bore in the least although it took me a while to read due to the fog but I am glad I did and thank you for sharing your story. Much of what you wrote I could relate and see in myself as no doubt many others who read it. I have an MBA too and that stood out, just to name one thing.

    I will never judge anything you or anyone else says on this board so please don't take this the wrong way but you said you have completely lost your authentic self, I say no, knowing you just in our brief time here I feel like with so many of us, yes were are different people now with much more limitations but I think underneath it all we are still the same and that is what makes us strong , it is in fact our authentic self and our spirit that can never be taken from us no matter how ill we are.

    Functionally and on the outside you are not the same person but your deep inner self is the same and that is what has gotten you and many others through this illness to this point and what has kept you and others fighting and will indeed keep you and others fighting to try and get better.

    That is wonderful you have your horses and other animals to help you cope. I love animals even though I don't have any although I am thinking about getting either a dog or a cat.

    As for you not having much support, I know it will be harder for you to recover with less support but I still believe you can do it!

    Wishing you strength and improvement during your valcyte treatment.

    We are all peaceful warriors in this battle.
  13. Slayadragon

    Slayadragon New Member

    I hate to say this, but generally speaking I tend to find having people in my life to be more draining than helpful when I'm feeling really bad.

    I am lucky to have my husband, who has for the most part let me be since I've been using the AV's. I will say in theory that it's nice that he's there in case I need him, even though I've yet to ask him for much.

    I've temporarily put pretty much everyone else out of my life for the most part, though. It's a lot less stressful that way. They can come back when I feel better.

    Sometimes me, myself and I is the best support system you can have.

    Best, Lisa

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