CFS: Staying in MI to see Dr. Lerner

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jan 3, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. just wanted to say 'hi' to the board and give an update.

    i saw dr. lerner yesterday and he said i have to stay off valcyte because my liver enzymes are still a little elevated.

    he showed me my recent Holter results, which showed a heart rate that is too high at some periods. he prescribed 12.5 mg atenolol twice a day.

    i am desperate to get back on valcyte. i think it was helping. since i have stopped, i have been experiening intense muscle aches in my shoulders and upper arms which i think is the beginning of FM. fortunately, this is only off and on. it worries me.

    sadly, my antibodies have never been high despite my being so ill, so i am not sure what's going on. i am thinking my body just isn't mounting a defense.

    i gave dr. lerner some literature about atenusate, which was reported at the HHV6 conference to have activity against HHV6 and be less toxic than the alternatives. it is approved in europe as an anti-malarial.

    dr. lerner wanted another echo, holter, and chest CT. i am to see him a few days later. he also wanted a mammogram and pap test, which i will do in canada.

    i am staying at a hotel in MI and the cost (i pay for everything out-of-pocket) is becoming ridiculous. i am not sure how long i can go on seeing dr. lerner and i am still VERY sick:(

    he also ordered approx $3000 worth of tests from labcorp again. i guess he is trying to figure out why i made so many gains and then declined to zero. i have no idea how i will pay for that.

    at times, i think of giving up but then try to focus on the albeit few positive stories out there.

    i met a patient here who moved from fla to see dr. lerner. he is very nice and has done a lot of research but does not like dr. lerner or his staff at all and is planning on leaving. he networks a lot and told me about one patient who has not improved after 2 yrs and one who has improved after 1 yr. the person who did not improve developed FM after taking famvir (i believe he stopped antivirals).

    i planned to move to windsor (being canadian) for a few months but the room i planned to rent didn't feel safe so i am lugging all my luggage with me wherever i go and taking cabs. what a mess!

    i am feeling very scared, exhausted, and overwhelmed but still holding out hope....

    thanks for reading.


  2. Debra49659

    Debra49659 New Member

    I do not see Dr. Lerner and can't help you there but I just wanted to send a gentle (((((hug))))) your way.

    I can't imagine how you are getting along with all those expenses! Not to mention all your worries.

    If seeing Dr. Lerner is not feeling right to you....stop and rethink if this is the best course of treatment.

    Hugs and prayers!
  3. LindaJones

    LindaJones New Member

    Have you heard of Dr. Lapp in North Carolina?
    Here is his website
    He specializes in CFS.
  4. deliarose

    deliarose New Member

    Sue, do not waste your money on Lapp!
    He may help with tests to document disability for SSDI.. but otherwise I dont' think he has very much in his arsenal.

    To be fair, I only saw him once in 2004... but it was a huge disappointment and waste of time and money.

  5. deliarose

    deliarose New Member

    Maybe your body isn't mounting much of an immune defense cos your methylation system is screwed up ... and hence your T cell response.

    I think that's the way Amy Yasko explains it.
  6. SpecialK82

    SpecialK82 New Member

    Hi Sue :)

    I haven't been on the board for awhile and just saw your post. I'm sorry to hear of your on-going troubles with valcyte. I think if Dr. Lerner is saying that you shouldn't be on it right now, then it is good you are taking a break.

    I can understand your frustration with your lack of sustained improvement and the mounting financial cost. I guess I am wondering what he is trying to determine with the $3000 worth of tests. What is that he will see this time that hasn't shown up in the past??

    I am currently off valtrex becuase of stomach problems, and am really debating my next move. I know that the valtrex kicked off yeast issues and only want to take it again if my doctor will prescibe something for the yeast. I know that Dr. Lerner will not listen to me on this issue (and I'm afraid on any other problems that don't fit his theory). I also feel that he does not understand the financial pressures that we are under - so I'm a bit frustrated!!

    I don't really have any answers for you, I just want to tell you that I feel your pain. I am starting to wonder if a lower dose AV may be right for us in the long run and not have such a toxic effect on our bodies. Are you having any problems tolerating the valrex 4 x daily? I wonder if starting the valtrex caused a herx-like effect even though you had been on valcyte? It would seem to me that it could.

    God Bless - you will continue to be in my prayers.

  7. Smurfette17

    Smurfette17 New Member

    Hi Sue,

    I'm new here and also a patient of Dr. Lerner. I've been under his care for 4 months, taking Valtrex for the last 2 months. I know I have to stick with him longer to see improvement.

    A good friend of mine has had CFS for 15 years. She went from doctor to doctor and nothing. After 1 year under Lerner's care, she finally started to see improvement (she takes Valtrex and Valcyte for EBV and CMV). But it took her 1 year to see improvement. She's still under his care (total of 1.5 years now). She travels 5 hrs each way to see him.

    I live in Ann Arbor, so I travel just 1 hr to see him. If you ever need any assistance and I'm able to help, let me know!
  8. Smurfette17

    Smurfette17 New Member

    I also forgot to mention that he put me on 12.5 mg Atenolol twice a day also (even before the Valtrex). I have to say that that has really helped with my heart issues, so hopefully you'll see an improvement.
  9. Forebearance

    Forebearance Member

    Oh Sue, I feel for you.

    I spent some time this year carrying all my possessions around with me, and it sucks. I hope things will get better for you.

    If you are looking for some kind of antiviral to tide you over until you can go on a prescription drug again, you could try some Virastop. It's a gentle, over the counter antiviral sold at health food stores.

    (Of course, I suppose Dr. Lerner wouldn't approve of it.) I've been taking Virastop for about two years, and I really like it. Viruses can't become resistant to it, so you can stop, start, and adjust the dosage to suit you.