LERNER Visit 2

Discussion in 'Fibromyalgia Main Forum' started by SpecialK82, Aug 26, 2008.

  1. SpecialK82

    SpecialK82 New Member

    Hello everyone,

    Thought I would update you on my second visit to Dr. Lerner. Just to recap - I have had FM/CFS for about 11 years, the last two years have been the most difficult, the fatigue is worsening by the day and I started with Dr. Lerner on Aug 1.

    The first visit we went over my history and he took blood tests (I've posted on this visit previously). This second visit was for addtional tests only. I was scheduled for an echocardiogram and for a 24 hour holter monitor.

    After my 1st appt, I started having this odd sensation. It felt like I had blisters coming out on the palms of my hands and on my tongue and throat, but when I would look I couldn't see any. It's an odd feeling, my fingertips feel like they have been burned, they are very sensitive.

    Anyway, I called Dr. Lerner's office a few days before my appt for the tests and told them what I was feeling, and they said that Dr. Lerner wanted to see me when I came in to look at my hands. So they set up an appt with him (which I very much appreciated) even though it is not typical to see him on the second visit.

    So I arrived Mon morning and had the echo done and was told that the holter monitor was not available as it was sent out for service. Needless to say, I was very disappointed! It's difficult to re-schedule these visits as it's a huge inconvienence when you live 4 hours away and have to incur hotel charges. However, the office staff was very apologetic and worked to get me back in according to when it was most convienient for me.

    Anyway - the day did get better. I was able to to see Dr. Lerner, and surprising, he had my blood tests results back and he went ahead and shared them with me. (This was not supposed to happen until my third visit when he would have had all the test results back.)

    I do have EBV, on his test I scored a 98, I was not told the normal range. I do not have CMV, HHV-6,or any bacterial infections. He looked at my hands and in my mouth for 2 seconds, didn't see anything, he didn't seem to think anything of the blister-type feelings that I was having and just said it was part of the whole EBV. I told him that I had had Hand, Foot, Mouth about 14 years ago which he quickly dismissed with a wave of his hand, and said that it had nothing to do with any of my symptoms now.

    SO - he said that even though he did not have the read out from the echo or the holter yet, he saw no reason why I couldn't start the treatment now! I was ecstatic!

    He prescribed 1 gram Valtrex 4 times a day. He said the dosage given is in accordance to your weight. I weigh 170 lbs, and that dosage is good up to 175 lbs. However, because I am close to the top of the range, he wanted to give me a "pusher" as well. So he prescribed Tagament for me to take on the 1st dose and 3rd dose of each day. Apparently it helps the Valtrex to be more effective (I think it's absorbed better). Also,he stressed the importance of drinking at least 6 8oz glasses of water each day to prevent kidney stones.

    He said that I will feel worse for the first 2 - 6 weeks. I asked "in what way will I feel worse", and he said in every symptom that I have. I am nervous about this and also about the side effects themselves but am praying to God that I can handle it.

    I am scheduled for a follow up with him in a month and we will try to do the holter at that time as well.

    So I came home today and went directly to the pharmacy - and to my surpise my insurance is allowing 4 Valtrex a day without an additional charge. I was not sure how they would handle it as I've heard others on here have problems with insurance coverage. Of course, I don't know how long they will continue to cover 4 grams per day - it may only be for a certain length of time and then I may have problems.

    So I just had my first dose with dinner and I don't feel any better yet. just kidding!! :)


  2. znewby

    znewby Member

    Thanks for posting. I am always interested to hear what Dr. Lerner has to say. That is interesting about the Tagament.
  3. ladybugmandy

    ladybugmandy Member

    hi kristina! great to see your post. i am sitting here packing for my trip to Michigan tomorrow morning!

    yes...very interesting about Tagament!

    when he said your EBV was 98, did he mean the early antigen antibody titre? if so, the normal is 20 in his lab....so 98 is pretty high i think!

    i had very few side effects from valtrex (a little dizziness) and i didn't really have any worsening of symptoms as i did on the valcyte.

    i am so excited for you!!!

    remember to drink lots of water and be very, very patient!


  4. SpecialK82

    SpecialK82 New Member

    great to hear from you all!

    Sue - thanks for your well wishes and good luck on your visit with Dr. Lerner!

    Thanks so much for jumping in on the labs Kelly, I don't have anything written down yet. He dictated my results into his recorder and said that I would get a copy of of it soon. I only actually heard the 98 when he was dictating.

    That's a good question about re-doing the blood tests for CMV or HHV-6 anchors. Kelly, do you think he would ever test me again if I was negative the first time? I guess he does believe that they can alternate between positive and negative at different times if he is continually retesting you for EBV?

    Kelly, can you explain what SGOT and SGPT is?


  5. SpecialK82

    SpecialK82 New Member

    thanks for the info on the Tagament, I'll have to research that.

    Can you tell me what type of urinary problems that you had with the Valtrex if you don't mind?

  6. SpecialK82

    SpecialK82 New Member

    Kelly - I guess that makes sense then that he does keep testing for the other viruses, that's good that he does that but it's also kind of a downer that a negative test isn't really conclusive..

    Kelly - congratulations that your CMV is down from April - how exciting is that!! :) What is the normal range for the CMV? It sounds like 210 to 123 is a good drop!

    Anchors - thanks for being so candid! I know that must be so annoying, I've had my own issues with UTI's and it's no fun.

  7. netransplant

    netransplant New Member

    Hello Kristina:

    You are so great to provide us with updates. I feel like you and I are living parallel lives. I was almost giddy when I read your sentence about the Valtrex causing the worsening of symptoms for 2-6 weeks. That was comforting because I feel worse than ever. I have been on and off Valtrex for 8 weeks. I had to stop because I developed lesions but since my HSV-1 was creeping up and my EBV IgG titer was >10,240, I restarted it. I sincerely hope with all of my heart that we get better from this hideous and mysterious illness. If you prefer to email individually, my email address is: netransplant33@hotmail.com. I look forward to reading more about your progress. I do hope you are doing okay.