CFS; Lerner Advice Please

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Dec 10, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i have some advice to ask re: Dr. Lerner, for those who have seen him and anyone else who wants to chime in....

    i am sitting here at a sub-par Holiday Inn in MI. The beds are so soft i cant sleep. I get a Holter put on tomorrow AM.

    i had a UGI on Monday and they found nothing but some acid reflux. I know the Holter will reveal nothing.

    There are no words to describe how sick i feel from traveling. the trains, buses, cabs, lugging baggage...its too much. When i was going every month, i could take it...but coming every 1 - 2 weeks is proving much too difficult.

    i started to feel better the last couple of days after long naps but after today, i will need 2 weeks to recover. i really feel like i am pushing myself too hard. my body is telling me that this is too much. the traveling negates the positive effects of the treatment.

    after being up since 4 am, i got to the hotel at 5:30 pm and had to walk to the supermarket for frozen food to save money!! i feel feverish and awful.

    definitely too much!!!!

    the problem is, i am confused as to what to do. if i tell dr. lerner that i need to put a cap on my visits, he will tell me that he cannot treat me.

    if i stop coming here, my complicated condition will likely not improve under the care of a GP with no experience with antivirals - even if i am lucky enough to find someone to prescribe them w/out me being under a specialist's care.

    i still very strongly believe that antivirals are the answer for me.

    ideally, i would like to see dr. lerner only if a complication arises, but i know he does not work that way.

    any advice?

    thank you for reading

  2. 28years

    28years New Member

    Dear Sue,

    I’m sorry you are continuing to have to have such a difficult time.

    I agree that the physical, mental and emotional exhaustion of seeing Dr. Lerner so frequently is probably counteracting any positive effects you’re getting from the treatment.

    My only suggestion would be to try putting it on Dr. Lerner. For example you might try saying something like, “Dr. Lerner, I’m afraid that the exhausting effort of coming here so frequently is negating any benefits I am getting from your treatment. I really feel that treatment with you is my very best chance of getting improvement. But I feel that every time I start to improve, it’s time to come see you again and the exhaustion of the big trip here knocks me back down again. I don’t know what to do. Doctor, what do you think I should do?”

    I don’t know if that’ll work, but it’s all I can think of. I can’t imagine going to see him as frequently as you do. For me going to see my local GP once every three months is more exhausting than I can handle and takes me at least a week to recover from.

    Best of luck.
  3. joanierav

    joanierav Member

    i dont know how you have been doing it this far. i guess when we dig deep , we are stronger than we think. but it sounds like it is getting catching up with you. i think you answered your own question, when you said "the trip is negating any treatment that he has for me" i couldnt agree more. even when i was doing pt, it didnt help me because the commitment was negating any good results. doing anything with regularity is just too much for us. our body gets stressed not only physically, but emotionally and mentally.

    i had a very good doctor in nyc, but now that i am 3 hrs. away i had to stop going. i could not tolerate the trip. when i was one hr away, i could handle that. and i sure miss that doctor, but i had to stop going. sometimes we just have to listen to our bodies, for they do talk to us.

    this is what i would do if it were me. i believe you already know his protocol. you have been on his treatment. maybe you could find a good d.o.(osteopathic doc) i find they are always willing to do whatever we want and need. when i was on glutathion injections and i couldnt get to the city every wk. for them, the ny doctor gave me the script and i found a d.o. to give me the shots. maybe you could find one to do the valcyte and valtrex. or another idea is to find an alternative doc. to do the protocol. they are always willing to learn more about cfs and fibro. mine does, and he even writes me scripts for whatever i need.

    when we are on a treatment, and we have faith in it, it is a good opportunity to educate any new docs we may have to go to. its the same when we move, we have to find new docs to do our treatments. its no different.

    gosh ladybug, it is a hard call. we can only tell you what we would do, and you can listen, lbut in the end you have to make your own decision. i will pray that you make the right one.

    this is only my two cents worth. dont mean to tell you what to do. sorry so long, hope i helped a little.

    with lots of love and encouragement.

  4. wendysj

    wendysj New Member

    Hi Ladybugmandy,

    I was just thinking about you... I hope you are feeling a bit better today. Please let us know how you're doing.

    Best wishes,
  5. ladybugmandy

    ladybugmandy Member

    thanks all. i read all your posts when i was in MI and they touched me. i was too sick to reply.

    i made another thread whining again ....hope you all don't mind....

    28yrs...i am thinking of saying exactly that to lerner. asking HIM what i should do.

    i'm sure he will suggest just seeing someone else. he will not compromise..that's just how it is.

    i guess i'm foolish for expecting sympathy or special treatment from world famous doctors who deal with life and death everyday. i am not special to them..i am just another specimen.[This Message was Edited on 12/13/2008]
  6. misskoji

    misskoji Member

    Every time I read your posts, I just wish I could hug you. Sounds corny right? But I mean it. Seriously honey, you really need some rest and recovery.

    I have started to write a Dr. Lerner journal myself, but I have not finished it. In part because I am too tired, and also, I don't know if I can continue to see him either.

    This travelling, and I've only done it once so far, is VERY taxing on our health! If anyone should understand and appreciate that, it should be Dr. Lerner. When I went to my appointment, it literally took me 16 days to recover enough to get out of bed for more than just the bathroom.

    I will give you my opinion, but it's just that, only an opinion. I now know that when seeing Dr. Lerner, we don't have time to really talk to him. I would suggest writing him an email addressing all of your concerns. My email was answered by his staff, but I am just a new patient with a generalized question. You have been seeing him a very long time and deserve a personal honest response from him.

    I really believe none of us can give you the answer, I think it's purely your decision. One you should not be racking your brain over at this very moment. Please, please give yourself a little time. You mentioned you won't be going back for three weeks, and I think that is the best decision you could have made right now. Focus on you!

    I am going to finish my journal and post it soon. I think it's important to share all of our experiences with medical professionals and all that it entails. I very much like reading your posts and thank you once again for sharing your experiences with us.

    Sending you healing vibes.

  7. ladybugmandy

    ladybugmandy Member

    {{{{{{{{{{{missokji}}}}}}}}}}}}} thank you.

    i had forgotten you were seeing dr. lerner too.

    a journal is a wonderful idea.

    for me, there is no decision. i cannot afford ampligen so dr. lerner is the only option. my mom's savings might last another year or two....then we will see.

    i'm sorry to say - and i know i shouldnt type it here - but i think a lot about you-know-what. these are such dark times. its hard to believe that just 4 weeks ago i was on top of the world, so sure i was improving!

    please keep us posted...

  8. Forebearance

    Forebearance Member

    My heart goes out to you, Sue. It sounds so hard.

    I hate to think about that hotel you're staying at in MI. The toxic mold situation in SE Michigan is so bad, and it's probably not good for anyone who's sick to be exposed to it. Slaya found that Hampton Inn is the only toxin-free chain of hotels.

    I hope you find a way to keep on taking your anti-virals.

  9. ladybugmandy

    ladybugmandy Member

    thank you:)

    hampton inn? wow..interesting. i am not sure i've heard of that chain.

    i did get a refund for the holiday inn after complaining and stayed at the westin the 2nd night. so far, that is the only hotel i can sleep in..and at, you can get a great deal.

    i know this is major wishful thinking...but i wonder if the really bad phases i go through can be some sort of a die off reaction...?

    i really wish i had just stayed home and rested....but i guess i have to jump through whatever hoops dr. lerner wants me to! i am too desperate.

  10. Forebearance

    Forebearance Member

    Okay, I'll hope with you that your bad phases are die off reactions.

    It seems like the main tool we have in treating our CFS is following our gut instincts.