Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Feb 25, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i wanted to tell you about my recent appt with dr. lerner but i have forgotten what number i am on lol

    i restarted valcyte 6 weeks ago after taking 2 months off the drug due to liver enzyme elevation. 2 weeks after stopping the drug, i became VERY VERY sick so i was desperate to get back on (i am also on valtrex).

    5 days after restarting it, i experienced a 45% improvement which lasted for 1 day. then, i gradually declined back to square one with severe brain fog, lymph node ache, fatigue, and headaches.

    over the last 5 days, i have been experiencing night sweats (waking up drenched) and slight fevers as well. i cannot believe i wake up at all!

    i saw dr. lerner yesterday and told him what was going on. i asked him to check for lymphoma. he said they wouldn't have gotten this far in their practice if they weren't thorough. he poked around a bit and checked my throat. he took a swab and ordered a throat culture (i did not have any throat symptoms but i assume he saw something).

    the odd crustiness in my ear (sometimes i think i feel some pus too) continues, so i finally made an ENT appt, which is in march. dr. lerner wants me to have a mammogram and pap smear which are also pending.

    dr. lerner says he thinks my body is fighting some infection which has nothing to do with the CFS treatment.

    i asked him for a new letter for disability, which i am about to apply for. i told him not to write that i will recover in a 1 - 1 1/2 year as he did a year ago. i told him that i had talked to some patients who took 6 years or more (i probably shouldnt have said that lol). he dictated a letter according to my specifications.

    he said this up-and-down in treatment is normal. my liver is now normal so i asked him if we could increase valcyte or add tagamet but he did not want to do it at this point for safety reasons and i was ok with that.

    lately, after all my reading, i have become plagued with worry over the possibilty of getting MS on top of the CFS. i asked him about the diseases that are linked with chronic EBV/HHV6 such as MS, lupus, lymphoma and asked if the meds could prevent them.

    he said there is no evidence that i will have anything other than CFS. i wanted to tell him that some of peterson's patients went on to get MS but it was clear i had worn out my welcome at that point with all my questions! lol

    looks like it's going to be a long, hard road. i keep ruminating on 'what if's' lately which is not helping. i have to somehow accept and make peace with the fact that i will be sick a long time yet. despite everything, i am still convinced that this is the right treatment.

    thanks for reading,

  2. Smurfette17

    Smurfette17 New Member

    It was so awesome to meet you-- I was in the middle of writing you an email :)

    Don't feel bad about all the questions you ask him because you travel really far to see him, and you deserve to have all your questions answered!
  3. Smurfette17

    Smurfette17 New Member

    Hi Chrissy-

    Have you read the testimonials on his page? When I am feeling discouraged, I read those, remembering that some people who wrote there have been with him for 2+ years.

    BUT, I do know one "real person" who has had much improvement with him. She is the person who told me about Dr. Lerner in the first place (she has known my family for a long time and I trust her). She consulted Lerner after 14 years of illness (and after many doctors) and said he was the only one who made a dent for her. After 1 year on antivirals (she has EBV and CMV, not HHV6), she went from a 2 to a 5. She emphasizes she's not cured but she can do more than she could do in years.

    I'm at a 2 now, so a 5 sounds amazing to me...
  4. ladybugmandy

    ladybugmandy Member

    smurfette...it was great to meet you too!

    chrissy...yes i think many do improve quickly. i have heard of people improving in a few months, in fact.

    aside from length of illness and co-infections, i have no idea what makes some improve slowly and some quickly. for me, i suspect my lack of antibody response is worrisome. maybe some of us just can't fight the infections as efficiently.

  5. SpecialK82

    SpecialK82 New Member

    Good to hear that you improve on some days, even though you decline again, i think it's a great sign. I suspect he won't find anything else on the tests, at least that's been my experience.

    It's good you are going to an ENT to check out your ear, you have been dealing with that for some time now. I actually had some of that too while on Valtrex, just in one ear. It may have gotten a little better now, but it's not gone. So I'll be interested to hear what you find out.

    I'm impressed that he wrote you another letter for disability, I thought that was not easy to get from him. I've wondered if you were still trying to go back to work.

    Take care,
    [This Message was Edited on 02/27/2009]
  6. shari1677

    shari1677 New Member

    My doctor told me once a while back that with FM, one treatment might work for a while, then stop - and then a new treatment would have to start, etc, etc, etc......almost like the meds would quit working and then you'd need a regimen change. I'm pretty stable now on Lyrica, Prozac, Vicodin, Zanaflex and Omeprazole. Stable, but still with very mild pain and EXTREME fatigue that my doc and I can't seem to find a treatment for, though I start CPAP this week. Keeping my fingers and toes crossed!