Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Aug 27, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i had my 11th appt with dr. lerner yesterday.

    nothing much happened. i shared my RNase L results with him (it had dropped from 1885 before any antiviral treatment to 1265 from valcyte alone - under another doctor - to 74 under dr. lerner's valtrex+valcyte combo).

    he agreed that this was a dramatic drop and good news. he wrote it all down.

    i asked him about the LMW RNase L situtation but he did not really comment, except to say "that is interesting".

    I told him that there was not much in the way of clinical improvements for me, other than my noticing my recovery time after over-exertion (grocery shopping, etc) was decreased.

    i also said my knee pain was gone (i had minor right knee pain on and off throughout my CFS).

    he said i was on the right track and to stay on the same medical regimen (valtrex 1 g 4 times a day and valcyte 450 mg every other day). i am to go back in 1 month.

    he reminded me to drink the appropriate amounts of water (i had liver enzyme elevation a few weeks ago and was called by the office to re-test. upon re-testing, it was normal).

    he reminded me that it is important to not push myself and just "let it happen".

    we decided that i was a 2.75 on his recovery scale.

    i asked dr. lerner if i should be concerned about juice affecting the absorption of the drugs. he said "no".

    he said he had been asked to present his findings at a seminar in greece and will be going there soon. he seemed excited about this.


    overall, i am not noticing huge amounts of improvement. sometimes i will realize i have remembered something i would have forgotten a year ago. other than that, the improvement is so subtle and so slow it is always hard to be sure its happening.

    i am encouraged by the drop in RNase L so i will keep going with the antivirals as long as it takes.

    thanks for reading:)

    [This Message was Edited on 08/28/2008]
  2. chrissy12

    chrissy12 New Member

    It sounds like you are getting some improvement...I am getting a very small one,too.

    My mycoplasma went from 895 to 1360 and so he finally said I need to live in Michigan and get IV therapy. I found a nice apartment in a gated community for $65 a night. It is in West Bloomfield. I will be getting the picc line around Sept. 10th and then 3 times a day, I have to take IV's. I am somewhat on overload right now, trying to figure what all I need to live there that long.

    He was so kind and nice to me. He said I was to call him morning, noon, or even in the middle of the night if I have any kind of trouble. The more I am with him, the more I see his genuine care of his patients.

    I had to schedule 5 appts. out and yes, they said he will be leaving for Greece. I hope I am done with my treatment before he leaves. It's amazing how he has the energy to do all that he does..

    I hope your RNase L keeps going down and you continue to see results.

    Take care, Cindy
  3. Timaca

    Timaca New Member

    It does indeed seem to be a good sign that your RNase L results have dropped so dramatically.

    May you soon see dramatic improvements in your health!

  4. chrissy12

    chrissy12 New Member

    Hi Kelly,

    Thanks for your kind words. I am open to a visit, but I would like to wait and see how I respond to all of this medicine. My sister from Colorado is coming for a long while, and taking turns with my husband and son.

    How can I get your phone number or e-mail address? I will take it with me and get ahold of you. It would be nice to meet.

    Take care, Cindy
  5. SpecialK82

    SpecialK82 New Member

    That's great that he liked you RNase L numbers, you must be on the right track. And I think it's a good sign that your recovery time has decreased - that is really one of the key things for us.

    Does drinking water help the liver? I know that it's good for the kidneys, but haven't heard about improving liver enzymes.

    You said you are a 2.75 on his recovery scale - do you remember what you were when you started?

    He has got so much energy going to Greece, when is he supposed to be going? Do you know if he has new findings that he is presenting at the seminar?

    Keep going - you're doing great!

  6. SpecialK82

    SpecialK82 New Member

    Hey Cindy - glad to hear that you will be getting the help that you need. I know that must be very difficult to just uproot your life like that, but maybe you can think of it more as a relaxing getaway where you can just focus on you.

    How many weeks will you be getting treatment? Is it just Mon - Fri or is it Sat and Sun as well?

    I am so touched by his words to you - to call him anytime day or night. He is incredible.

    I hope you have a computer so that you can keep in touch with us. Wish you all the best in your journey.

  7. chrissy12

    chrissy12 New Member


    I have to be there 4-6 weeks. I believe I have to do the IV everyday.

    I am taking my laptop and hopefully I will be able to connect and keep you posted.

    I hope all is going well with you. I am glad you are able to see Dr. Lerner. I am 4 hours away, too.

    Take care, Cindy