Recent LERNER Visit + news

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Apr 22, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i just got back from another visit with dr. lerner. i just saw him 2 weeks ago but because my liver enzymes were high (ALT was over 60 with normal being < 41). he decreased my valcyte dose from 450 mg daily to 450 mg every 48 hrs.

    today, my ALT was 48 but since it wasn't exactly normal, i cannot go back to the original dose yet. i think dr. lerner wanted to see me sooner but i begged him not to make me come so often for financial reasons so he agreed to let me come back in a month.

    on 450 mg of valcyte daily (in addition to 4 g/day of valtrex) i finally started to do well, with major improvement in brain fog for 4 days in a row (i had improved before but this was different: for the first time in 17 years, the fog was all but gone!!!). i was so ecstatic that i told everyone i was on my way to recovery, which i now regret.

    i am not doing too well at the moment. i think it is partly the regular up-and-down of the CFS and partly the decrease in the valcyte dose. i really need at least 450 mg a day of the drug!!

    it's odd because the doctor i saw before dr. lerner didn't mind my ALT going a little high. this makes me wonder: was he negligent or is dr. lerner too careful?? dr. lerner told me there have been documented cases of valcyte causing liver i guess he knows what he is doing. he has been using the drug for years.

    still, it is very frustrating for me, since i come so close to feeling better, only to be back in the CFS nightmare again.

    i have to wonder about the wisdom of fluctuating the dose so much - can't that create resistance??


    i asked dr. lerner how his meeting with dr. montoya went. he said it went very well. they spent the day together and have decided to work closely together. they may publish their papers together as well, in an effort to make a greater impact (i think this might apply to the valcyte study too!)

    dr. montoya will be adopting all of dr. lerner's methods in his practice!

    apparently, dr. montoya's mentor at stanford is a long-time, close friend of dr. lerner's.

    dr. lerner will not be moving to california. i asked him this because i was worried lol

    thanks for reading!

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  2. Debra49659

    Debra49659 New Member

    I am so happy to hear that you have been making some progress...sounds as if this decrease in the Valcyte dosage is a short term one.

    Being free of the brain fog must have been so wonderful:)

    Good Luck,
  3. consuegra

    consuegra New Member

    Dr. Lerner was going to make a treatment DVD of his protocols for other physicians. I wonder what the stage of this project is?

  4. ladybugmandy

    ladybugmandy Member

    i asked him about that. it is on hold.
  5. mezombie

    mezombie Member

    Wow, that is great news! Too often doctors won't work with each other.

    Sue, I'm sorry you're having such a difficult time. I do think you have an excellent doctor, though.

    Hang in there, and thanks for posting this.

  6. consuegra

    consuegra New Member

    I wish you continued good luck with Lerner and hope that things pick up with you again. I have seen him talk several times and he projects such a strong conviction along with his immense experience. I have been hoping for this treatment sharing with other physicians, so that I could get ahold of it. There is of course a tremendous amount of information on the internet, what with his trials and patents, but I want to know more.

    Remind me of your titers for EBV IgG, IgM and HHV6 that led to his treatment of you.

  7. ladybugmandy

    ladybugmandy Member

    chirs.....that was the frustrating part. i started getting tested 15 years after i got sick. when my old doctor sent my blood to specialty labs, the EBV subclasses were all normal (my illness started with an EBV infection). the HHV6 IgG was only slightly elevated at 1:320. because of this, the former doctors were never sure how to treat me.

    dr. lerner's lab came up with a slightly positive EBV early antigen antibody, at around 25, with normal being <20. sometimes it was normal.

    i don't think antibodies are that usefull unless you test them regularly as dr. lerner does and look at the values in relation to the previous values of each person, along with the symptoms and history.

  8. jasminetee

    jasminetee Member

    Sorry to hear you relapsed, but 4 good days is promising.

    At least Lerner is staying where you can still see him. I hope you make progress again. Thanks for the update.

  9. ladybugmandy

    ladybugmandy Member

    thanks for the well wishes, everyone....looks like there are steps being taken, however small, to finally help the CFS community:)