ON valtrex post valcyte TIredness has overcome me for a month

Discussion in 'Fibromyalgia Main Forum' started by deserella, Jan 27, 2009.

  1. deserella

    deserella Member

    I was on valcyte for 1 year and stopped it in June. I started valtrex 3 and a half weeks ago. I had a really good month in December. I had grate stamina. I don't believe I over did it. New Years Eve I was so tired I did not go out and had plans to go to a dance. Even If I would have gone out I think I would have gone to the dance for an hour. Long enough to do the count down and then go home. Didn't happen though. I have been really exhausted since then. That's almost a month. It's strange because I thought I was on the uphill to recovery. I was use to having a mixed week of good days with some tired days. But now they are all tired. I also just got my latest titers back and they have not changed since June. My doctor just orders them through our lab here in Salt Lake City. I don't do Focus labs. I was really disappointed and got bummed and started thinking that maybe I've spent the last 2 years of my life on something pointless. But then I thought that the focus labs might be different in the way they test and show more of a decrease or increase, more accurate maybe? There has to be a reason why Montoya insists on using them.

    I am trying to think of reasons that I am so tired. I have been having stomach problems. Today I ate 2 small pieces of pizza and a banana and I felt like my stomach was going to pop! I felt so sick for the rest of the day. I've been having this problem lately. I can only eat very small amounts of food. Maybe I am not digesting and absorbing my food properly and that is effecting my energy.

    My other thought is winter I live in Utah. Not seeing a lot of sun. I tend to be on the lower end of normal with vitamin d as it is. I have to take supplements. I have not been tested for awhile. A friend of mine with fibro swears that she suffers from SAD and she did a lot of research on it and has started going to the tanning bed with UVVB rays. She only goes 1 or 2 times a week for 3 minutes, but she says it has helped her.

    I know a lot of people who have been on valcyte have been treating other things too such as entro viruses and lyme. My dad thinks I have lyme because when I first got sick I was at girls camp in the lake Tahoe area. He thinks I got bit by a tick up there.

    I should add that I've been having female issues too. I'll go a few months with a period and when I do have one it's painful. Maybe I have a hormone issue that's making me tired???

    If anyone has any other ideas or suggestions to throw at me send them my way. They'd be very much appreciated. -Deserella
  2. ladybugmandy

    ladybugmandy Member

    this is very interesting because i, too, am experiencing digestive issues. i am always full and do not feel like anything is digesting efficiently.

    i am now really wondering whether treating herpes viruses alone is enough....
  3. SpecialK82

    SpecialK82 New Member


    You may also be tired because of the valtrex itself. I know I was very tired for about 7 weeks after starting it. I had not taken valcyte before it, but I have read on here that someone else did feel herx-like effects with valtrex even after being on valcyte beforehand.

    My doctor told me when I started that I would feel worse for 2 - 6 weeks. I also was having digestive problems and even stopped taking the valtrex after 8 weeks because of the stomach pain. I also was having yeast problems as empty2void mentioned, and it cleared up when I stopped valtrex.

    I'm now trying to figure out what to do next. I may ask my doc if I can take a lower dose of the valtrex and see if I can tolerate it. I'm not sure if he will let me as he says I need this dose in order for it to be effective on EBV.

    Good luck to you, I hope you start getting your energy back soon.


  4. SpecialK82

    SpecialK82 New Member

    Hi There Kelly :)

    Great to see you too! My stomach problems are about 80% better since I stopped the valtrex but it's not really clearing up completely. I still have not made a decision which doc to go to next - I keep changing my mind and re-thinking. I wish I could see your doc!

    I am contemplating going back to the FFC or to Dr. Guyer in Indy, but I am worried about all the money they charge, not to mention the traveling. I spent the day calling doctors in my area that take my insurance and I haven't had any luck finding someone that treats CFS.

    I may end up going back to Dr. L but I know I won't get any support on the yeast if that starts back again.

    Does anyone know if Dr. Cheney is still seeing patients? I know he was taking patients on a limited basis after his heart transplant, but don't know if he is seeing new patients..

  5. romalaw

    romalaw Member

    I believe Cheney's office will put you on a waiting list
  6. SpecialK82

    SpecialK82 New Member

    thanks romalaw, I'm going to give them a call
  7. hopabout

    hopabout New Member

    I have been sick for many many years. My constant research teaches me that if you kill these tiny terrorist, they fight back. Now think about it. You have some big army of chicken pox virus in you, maybe some herpes 1 or worse, and they are all living happily every after in your fat cells. You go and throw in a few handfulls of anti viral medicine and they start to die off.
    Of course, you are going to herx.... there's a big war going on inside.

    I fight that war with Kefir food, search it and 2 acidolphilus. Check on line here for products.
    I use goat milk because I am allergic to milk and make my own drink. I do it 1 cup in a.m., 1 at noon, 1 at night. I add the acidolphilus at noon by opening the capsules and blending it in the kefir. I am very tired..... there's a war... but I feel so good and much better.

    These things are a MUST for Anti biotics and I think a must all the time for us. It is easy for the wrong bacteria to eat eaten away or swept away or even killed with anti biotics.

    I swear by this treatment. In the long run, unless reinfected, your life will change.

  8. deserella

    deserella Member

    I didn't take valtrex all last week and I was still very tired. I wonder if one week was enough because it could still be in my system?
  9. deserella

    deserella Member

    Thanks for the tips. I'm going to check out those products :)
  10. deserella

    deserella Member

    What exactly is enterovirus? Would the valtrex be killing it? I know of someone who was on valcyte and then treated for enterovirus and made her so much better.

    I really hope I do not have parasites but hey it could be a possibility and I'm glad you threw that out there. Thanks for the advice :)
  11. SpecialK82

    SpecialK82 New Member

    cat003 - may I ask what dose of Valtrex you were taking?

    I'm surprised that you felt better on Acyclovir as it's very similar to Valtrex (same except Valtrex lasts longer in your system as I understand).

    I'm interested since I did not feel well on Valtrex and wondering if Acyclovir is worth a shot, I had automatically written it off.

    Could you tell me your problems with Valtrex? I had horrible stomach problems and candida issues.