Valtrex update

Discussion in 'Fibromyalgia Main Forum' started by 28years, Oct 10, 2008.

  1. 28years

    28years New Member

    I’m terrified even write this, because I’m afraid I will jinx it. But I’m so excited I will burst if I don’t tell someone. And you all are the best people to tell.

    A little history:
    I’ve had CFIDS for 28 years. I’ve been housebound for at least 15 years. I have severe walking and other neurological and cognitive problems. I saw Dr. Lerner and he gave me a protocol to follow, and my local doctor is following it.

    In the first week of August I started Valtrex 1 gram four times a day. Depending on the results of the Valtrex, I am to add Valcyte around January.

    The reason I’m so excited, is that after several weeks of feeling awful and having to be absolutely horizontal, I’ve had some improvements!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    For the first time in over nine months, I can feel my legs. It had been that every morning I would wake up and be unable to feel my legs from about the mid thigh down. Sometimes this would last all day, sometimes it would go on and off during the day. For about the last10 days, everyday, I wake up and I can feel my legs!!!!!!!!!!!!!!!!!!!!! It lasts all day.

    Also, all week I’ve been working on straightening out some very confusing financial matters. As I was working through it, a little bit each day, I found that although it often didn’t understand the material, I didn’t have that sense of absolute confusion. CFIDS fog doesn’t even begin to cover what the confusion usually feels like – instead of fog it is more like trying to dig thoughts out of a morass of quicksand.

    But this week, I could think. I definitely still had some confusion, but it was different. It felt different. I’m not sure how else to describe it. But it felt great.

    I know I’m still in for a long difficult road, but I’m really encouraged by this initial bit of improvement. I feel like for the first time I really have a chance.
  2. ladybugmandy

    ladybugmandy Member

    i have often wondered how you were doing and hoped things were improving for you...i know you have had a long, hard road.

    this makes me so happy!!!!!!!!!!!!!!!!!

    i am also improving on dr. lerner's is very slow but i can now say that its definitely happening.

    hopefully, this will encourage others to consider following his protocol with local doctors even though they cannot travel to see dr. lerner every 6 weeks.

    again.....congratulations!!!!!!!!!! i could not be happier

  3. JaneInMelbourne

    JaneInMelbourne New Member

    I'm so pleased to hear of your improvement. That's so exciting. I look forward to reading more posts from you with news of more improvement.
  4. znewby

    znewby Member

    That is the best news I have heard all week. That is wonderful! Promising results for such a short time.
  5. redhummingbird

    redhummingbird New Member

    28 years-

    Congratulations on having improvement!!! That is such good news. This is such a frightening illness and it sounds like you've been through so much with it.

    Wishing you continued improvement.
  6. 28years

    28years New Member

    thanks so much for all your support and good wishes!

    I'm sorry I'm not more consistent about posting, but I spend most of my energy on essentials -- eating, feeding my cat, going to the bathroom and cleaning the kitty litter. Many days that takes up all my energy.

    I'm very encouraged by my improvement, but I've had this illness long enough to know that even if the Valtrex is working, I will have a lot of ups and downs ahead of me.

    But for today, I am enjoying excitement and hope that this bit of improvement has given me.
  7. ladybugmandy

    ladybugmandy Member

    hi jam....i am curious about when you will treat the lyme.

    i could be wrong..but doesn't dr. lerner treat the lyme at the same time as the viruses?

  8. SpecialK82

    SpecialK82 New Member

    28 years - I am so excited for you!! It is so encouraging to hear of improvement. Can I ask what infections you are being treated for and what you test results were initially and what they are now?

    Yay for your legs and for increased cognitive function, how wonderful! Do you also have more energy?

    jam338 - hi there :) Sorry if you've posted this a thousand times already but can you tell me if you've been on Valcyte before? If not, I thought with the viral co infections it might be better than Valtrex alone...

  9. 28years

    28years New Member

    I have not as yet retested my viral titers. I think it'll be some months before its time to do that.

    When I was tested before the start of Valtrex, I had very high EBV titers, and elevated HHV-6. But I had no other co-infections.

    No I don't have any more energy, yet. In fact I have less energy and have to spend more time in bed. But I think this is to be expected at this early stage of the treatment.
  10. SpecialK82

    SpecialK82 New Member

    Hey jam - we definitely need our own prohealth apt in MI, how funny :)

    Sorry to hear that you've had problems getting to a good doctor. I don't really understnd why Montoya has such a long waiting list and Lerner is taking new patients - seems odd to me.

    Personally, if I was in your position, I would go ahead and do Valcyte if I could find a competent doc in CA. It would still be using Lerner's method of treating viral coinfections with Valcyte. And as long as they monitor you closely as Lerner does. UCSF sounds promising!

    Unfortunately, it sounds like it will take years for Montoya to open up for you. Are there any other physicians that Montoya has trained?

    I will pray for you that you find the right doctor soon.

    Your question about Lyme - I don't know Lerner's treatment for it, but I'm sure someone else on here does.

    Hang in there,
  11. frostymocha

    frostymocha New Member

    I am also taking Valtrex and I have been trying to find what dose other patients are taking. I went up to a max dose of 2,000 mg/day and am now reducing it to 500 / day ... if I can. So far I have not been able to go below 1000 a day or the symptoms return.
  12. ladybugmandy

    ladybugmandy Member

    hi jam. i think dr. lerner treats lyme with oral antibiotics and if they dont work...IV.

    valcyte will not do anything for lyme but some doctors might feel that getting rid of the "main" infection(s) willl enable your body to deal with the other infections.

    i could be wrong, but i think lyme needs to be treated (maybe the antibody levels are the determining factor?)

    i don't think dr. lerner tests for parvo. i got tested for parvo in toronto but was never exposed.

    i have a feeling you are gonna do are determined and don't give up. you research voraciously. you will beat this.

    [This Message was Edited on 10/12/2008]
  13. ladybugmandy

    ladybugmandy Member

    frosty...i am on 4 g of valtrex a day along with a small dose of valcyte for the HHV6.

  14. Shalome1990

    Shalome1990 New Member

    I love hearing that someone is doing better!! I am going to mention this to my doctor tomorrow!!