Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Apr 8, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i had another appointment today with dr. lerner.

    i told him that over the last 4 days, my cognitive function has improved. he asked me for details and i said that it is easier for me to find words and remember things.

    i am ecsatatic about this. the brain fog has been my worse and most distressing symptom throughout my illness. it is like i am finally waking up from a long, long nightmare.

    unfortunately, my liver enzymes are again elevated so i have to decrease my valcyte to 450 mg every other day (instead of daily). this worries me a great deal because i know valcyte is crucial for me. i had to stop the drug once and things became unbearable. i cannot go through that hell again. i just pray that the decrease in dose will stabilize my liver and that i will still maintain the progress.

    i have to go back in 2 weeks :(

    i mentioned that i had read that 65% of patients have to stay on the same antiviral dose indefinitely to maintain improvements. i asked about staying on vaclyte. dr. lerner said he has patients who have been on valcyte for a very, very long time and bloodwork has to be followed meticulously.

    i asked if one can stay on valcyte forever and he said that he could not answer that question. "the treatment is fairly new," he said.

    dr. lerner told me that he and dr. montoya are going to work together and that there is a meeting involving 8 CFS researchers very soon, i think he said in NYC.

    i know that CFS patients in the UK are in dire straights and still being sent to psychiatrisits. i voiced my frustration regarding the general lack of appropriate treatment for CFS and that something should be done.

    he said the only thing that can be done is to continue to publish until the evidence is so overwhelming that it cannot be ignored.

    i told him that so many researchers and clinicians are still not advocating antivirals and that this is so unbelievable to me. dr. lerner said that it is a power struggle and that many wish he would just "go away".

    [This Message was Edited on 04/08/2009]
  2. viralfree

    viralfree New Member


    Have you considered taking high doses of milk thistle and/or other herbal supplements to support your liver during the Valcyte assault? I use a product called Liver Rescue that combines milk thistle and a couple of other herbs. For the 9 month duration of Valcyte my liver enzymes were always normal.

    My liver continues to be taxed with both high dose Valtrex and multiple anti-biotics so i continue with double doses of herbs. If you're not already taking some perhaps they would help you.

    Continued success and it's wonderful to hear you've made it to the "coming out of a coma" stage (at least that was the feeling for me! lol).
  3. heapsreal

    heapsreal New Member

    Good to hear your getting better. Are you still on valtrex as well as valcyte? I read awhile ago where valcyte lowers hhv6 titre levels and valtrex although doesnt lower titres can stop them from rising, if this is the case replacing valcyte with valtrex for a while can help maintain your gains while giving your liver a rest. It would be interesting to know what dr L thinks of this also.
  4. ladybugmandy

    ladybugmandy Member

    viral....thanks for your post. i really want to try something for my liver but dr. lerner is against my taking anything other than the vitamins he lists. despite this, i do sometimes take NAC which is supposed to help the liver. i actually stopped taking it for a few days - i wonder if that had something to do with my liver enzyme elevation.

    some people seem to have no liver problems while on these drugs. i've heard of someone taking 6 valcyte a day and still having no trouble...

    may i ask how long you were sick, which drugs you took, and the status of your illness now?

    glad to hear you are better!!


    heap....yes i am on both drugs and valtrex does have some activity against HHV6 but once i was off valcyte for 2 months and became so sick i could barely stand up!

    [This Message was Edited on 04/09/2009]
    [This Message was Edited on 04/09/2009]
  5. ladybugmandy

    ladybugmandy Member

    kelly!! i think about you often...great to hear from you! how are you doing these days?

    thank you for the suggestions....i can definitey do the juicing, if nothing else...

    yes....i am so glad about the lerner/montoya collaboration. stanford has a lot of clout.

    i am so thrilled with being able to use at least part of my higher cognition that i have spent most of the day playing scrabble online LMAO!

    it's soon as i start to feel better my family starts expecting me to immediately pick up where i left off....its frustrating!! thank you for reminding me to rest. dr. lerner did the same, telling me not to overdo it and to "just let it happen".