my Progress on Valtrex

Discussion in 'Fibromyalgia Main Forum' started by 28years, Mar 15, 2009.

  1. 28years

    28years New Member

    Some of this may a repeat, but I figured I'd put it all up at the same time. Esp., since I start Vatcyte today.

    –Early in month started Valtrex 1 gram four times a day.

    – I can feel my legs for the first time in a year and a half. I had been unable to feel my legs from about the mid thigh down.
    – I can think more clearly, and I don’t get confused anymore. But I still have a lot of difficulty thinking, like my brain is too tired to think.

    – according to my brother, my diction has improved,
    – according to a number of my relatives, I appear more animated,
    – just in the last few weeks my walking has begun to improve, but still not great, but it’s defiantly better –I used to use my scooter inside all the time, now I frequently find that it seems like too much of a pain in the neck to use a scooter, and that it’s actually easier to walk (e.g. from the couch to the kitchen)

    – I used to use my scooter all the time in the house, now I find myself walking rather than using the scooter about 40 % of the time
    – for the first time in 10 years I have regained the reflex (that might not be the right word but I don’t know what else to use) that makes you automatically jerk your hand away from a hot stove (before regaining this reflex, I would burn myself frequently and only notice when I smelled my flesh burning, now for two months my hand jerks away by itself when it hits a hot stove)
    – my toes which used the point down when I lay down have just recently begun to point up, but they are far from the normal position and when I’m tired they still point down.
    – I find myself doing things I wouldn’t normally do, e.g.,
    – standing up to write a simple note instead of sitting down before doing for anything
    – typing short messages rather than using my voice-activated software.

    --I got stiff muscles for the first time in 15 years.
    I swept the downstairs floor (which I do about every 6 weeks) and got stiff muscles the next day. The muscles in my thighs and butt were stiff, but not my arms (except the one good muscle I have in my right forearm that often gets stiff when I work it). This is the first time in 15years I got stiff muscles even though I have always periodically swept the floor and shovel snow whenever it snows.


    – I spoke to my brother on the phone. He said I am speaking better and clearer than last time he spoke to me (about two months ago). Also, this was first thing in the morning when I’m usually least coherent.

    – I answered the phone, from insurence company, standing up and was able to speak coherently. Also, I did not feel the need for notes. This is the first time I remember in many years being able to speak on the phone while standing up. (It was a short conversation.)

    – when sitting my left heel no longer rises up by itself unless I am very tired. Even when I’m very tired it does not rise up as much. I used to rise up so much that just my toes would be touching the ground. I think this has been improving gradually and I’ve only just now noticed it.

    It must be noted that my energy level has not increased at all. In fact, it seems to have decreased. I sleep more than I did before I started. It seems that for me my improvements have mostly been neurological. Personally, I’m very glad about that because the neurological issues were the biggest problem for me.


    –start 900mg Valcyte per day.

  2. ladybugmandy

    ladybugmandy Member

    hello. so happy you are better. i am wondering why you are starting valcyte. did recent tests show HHV6/CMV antibody elevation?

    also..i wanted to point out that cognitive improvement almost always happens first and is a sign that you are on the "right track" (i have gotten this from a few reliable sources).

  3. 28years

    28years New Member

    I'm starting Valcyte because that was Dr. L's original treatment plan for me. I haven't have any new tests.

    But when I saw Dr. L to get the treatment plan I both EVB and HHV-6 were elevated. Since, the EBV was the worse of the two, he wanted me to start with Valtrex and then add Valcyte.
  4. ladybugmandy

    ladybugmandy Member

    ohhhh ok...thanks for explaining:)