CFS: As sick or sicker than before treatment

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Dec 12, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. just wanted to say that the recent 2-night trip to MI for the Holter was so incredibly grueling, i am now worse than ever. the fog is so bad i cannot even describe it.

    before i took the trip, i could feel myself improving a little. now, i am in an unbearable state.

    i asked the nurse who was putting on the Holter whether we could do blood work today while i was there, i could fax them my UGI results, and dr. lerner could tell me next week over the phone whether i could re-start vaclyte. the nurse said no, he would have to see me.

    then i saw dr. lerner in the hallway and approached him. i asked him the same question but he said "no. you will have to make an appointment..i do not practice medicine that way. " the nurse really let me have it for even asking him.

    i know he is in his late 70's so perhaps he has to do it this way to keep on top of things....but i am not sure i can continue. i feel like death.

    he wanted me to go back a few days after the Holter but i am not going back for 3 weeks. i can't do it.

    since i have relapsed completely, i am really starting to lose hope. and my condition now is absolutely unbearable. i cannot afford to live in MI. i pay for everything out of pocket. this is getting ridiculous.

    i am considering asking dr. lerner for a treatment plan and trying to find a local doctor to implement it....but who?

    also, the drugs are pretty toxic and can result in a plethura of complications including infections that need to be treated aggressively. i certainly will not be able to find an infectious disease doctor who would help me. the AIDS doctors here laugh at CFS.

    another option is to start seeing dr. leo galland in NYC. he was always good about my faxing him blood work and doing phone consults ($250 for 15 min!). he may make me pay another $1000 for re-assessment thousands for more blood work in NYC - who knows. i got the impression he was not pleased with my changing doctors so abruptly.

    i wonder what it means that i progressed to a '4' and then declined so rapidly and completely. does it mean that i cannot improve again? does it mean the viruses are now resistant? does it mean my immune system is too damaged that it cannot sustain the fight?

    thanks for reading

  2. GKTLA

    GKTLA New Member


    I am worried about you. We all have different opinions here so I usually bite my tongue but I'm going to give you my opinion as a concerned fellow sufferer.

    I understand that we often have to feel worse on a treatment before we may feel better, but the line has to be drawn somewhere. I have been in your shoes in regards to Valcyte taking me to the brink of death feelings beyond what I had ever experienced with this disease. I was on Valcyte for about 5-6 months and felt terrible. I often could not even make it to a lab to have my blood drawn for the weekly count.

    Once I stopped the Valcyte, I was back to where I was before I started it relatively quickly. Then, I began to live in the my usual cycles of good days/bad days. They were way preferable to how I felt on Valcyte. If I had to continue on that drug, I would have rather been dead...that's how awful it made me feel. It is NOT normal to feel this bad on a drug for this long. In my opinion, our poor, beaten and battered bodies cannot handle being on such toxic drugs for extended periods. If you didn't feel so bad, I wouldn't feel so concerned about you being on them for this long. But, when is enough enough??

    My doctor said I should have told him how much worse I felt on Valcyte even after a few months. He would have told me to stop taking it. I don't like how Dr. Lerner has this one trick up his sleeve and nothing else to offer. And I also don't like how he doesn't seem to comprehend or empathize with how terrible you are feeling.

    I forget how long you've been on Valcyte. But, I think you should stop taking it and regroup for a few weeks and see how you feel. Maybe find a doctor that has more to offer and doesn't seem to practice medicine with blinders on.

    I see Dr. Holtorf and I know he is not popular on this board, as well. But, he listens to what I say, truly asks about how I am feeling, does not want me to take things that make me worse (within reason), and answers all my questions/emails about treatments. He is open for discussion.

    I know you don't want to get off the Valcyte wagon and think that you've already come this far...I thought the same things myself. In hindsight, though, I am glad to be off of it.

    My main thoughts are about you. When will you really considering stopping it? Do you have a timeframe you are trying to make it to??

    I'm sure the drug has helped some people. But, it's not for all of us and may be doing way more harm than good. Who knows? Maybe if you stop it you can resume some sort of normal life and try some other options??
  3. ladybugmandy

    ladybugmandy Member

    hello and thank you. i am glad you are with a doctor you like. that can mean everything.

    my timeframe for stopping antivirals is 6 years LMAO

    this is partly because of a post i found long ago on the net:

    i have no idea who this person is or if they were even telling the truth lol

    ampligen has been approved in canada under emergency drug release since 1996 but no one seems to be taking it here. i think we still have to pay like $20 000 a year or something. i would need it for like 5 years and then again and again.

    i have heard of only one doctor in canada using it - in montreal - for an AIDS patient who travels there from NYC.

    problem with stopping valcyte for too long is possible emergence of resistant virus.
    thank you
    [This Message was Edited on 12/13/2008]
    [This Message was Edited on 12/13/2008]
  4. mindblower

    mindblower New Member

    GKTLA said, "But, when is enough enough??".

    Seems to be the key question for you regarding valcyte treatment through Dr Lerner.
    Only you can answer it for yourself obviously, but when I hear endless struggle and effort, endless straining and striving, this is a hint to me that I'm not on the right track or that at least something serious needs to be adjusted so I can sustain my equalibrium while going through the ordeal.

    Then to remind, there are other options for treating ME/CFS and only you can say if your case is a lost cause or not, IMO. I happen to think none of us are and that often there are alternate routes to our intended health goals, whether we can recognize them at every particular point in time is another question.


  5. ladybugmandy

    ladybugmandy Member

    MB...its been suggested to me more than once that ampligen may well be my only hope. but i cannot afford it.

    i just dont know. i am so foggy i cant even think.

    how much suffering is enough?
  6. mindblower

    mindblower New Member

    "...its been suggested to me more than once that ampligen may well be my only hope. but i cannot afford it."

    Yeah, ampligen is extremely pricey. It's not "all that" as far as efficacy, there are other-far less expensive treatment options that I've mentioned that produces a similar result to it from my experience.

    But if you feel you must pursue it against all warning, Dr Peterson in Incline, NV is probably the best one to be treated with it through. If you call his office, they might even know of a study still being done or are conducting themselves(don't quote me on this) using ampligen to treat ME/CFS.

    A study like this would mean you don't have to pay for the drug.


    [This Message was Edited on 12/15/2008]
  7. ladybugmandy

    ladybugmandy Member

    mb...thanks for the post. unfortunately, the studies being done are all in the states and i am not eligible and couldn't afford to live somewhere for a year anyway. also, i think i would have to take ampligen for over 4 yrs since i have been sick so long.

    the drug has been available in canada since 1996 under emergency drug release but for some odd reason, you still have to pay for it!

    i could be wrong, but i think there is only one patient in canada being treated with ampligen. he travels to montreal from NYC and has AIDS.

  8. wendysj

    wendysj New Member


    I'm sorry to hear you are doing so badly right now. I know there are lots of theories and specialists out there but you have to listen to your own body 1st. I'm sure you've talked to your and found a Rheumatologist before but maybe you can just try that approach again.

    My doctor (my 3rd Rheumy) has convinced me to let her try. She really cares and wants to help me. She knows I struggle to keep working and encourages me to keep fighting. She's been a Rheumy for 25 years and says she has FM/CFS patients that have gotten much, much better. This is her plan: better sleep quality and excercise.

    After reading all the other specialist's ways of treating this, that sounds stupid....but she conviced me to try it. So I've been excercising a little everyday. I'm also taking Flexeril 2 hours before bed. She said that helps you get the better quality sleep (3rd and 4th cycle).

    I am growing stronger everyday with the excercise. I still hurt like crazy right now and the fatigue is kicking my backside. I'm giving this a "college try" for 6-9 months. I figure, why not?

    I really hope you start feeling better soon... Keep you options open but most importantly listen to your body.

    Good luck,
  9. romalaw

    romalaw Member

    Sue, your bravery and determination has touched many of us on this board. I have hesitated to be too critical of Dr. Lerner knowing your faith in him. Trust and belief are so important in healing. However, your latest trials with coming for treatment clearly illustrate, to me, his total insensitivity and disregard for his CFS patients. He is so maniacally driven by his research that he seems to only regard his patients as research subjects. He insiststhat his patients follow his dictatorial protocol to the letter, with no concern for the emotional, physical and financial hardship it places on people who are already extremely ill with a disease that is excaserbated by stress; So actually, and from my own experience, the stress of working with him in itself can hamper improvement or cause relapse.

    It's almost sadistic to insist chronically ill patients with a condition that renders them almost helpless to travel to see him so often. Has he never considered the cost, the trauma of travelling and trying to negotiate a strange city when one can barely get out of bed? It would be possible for patients to get tests locally or do phone consults, but he is so controlling and dictatorial he won't allow it. I don't care if he is the most brilliant cfs researcher ever, what he puts his patients through in the name of his "research" should never be allowed to happen.

    Sue, there are many paths to wellness and even though you are exhausted and low right now, I've seen your fighting spirit on this board and I know you will continue to push forward for answers. Your courage, intelligence and spirit will lead to you ways of healing,
  10. ladybugmandy

    ladybugmandy Member

    thank you for the wonderful posts.

    romalaw....right now, i am in agreement with you.

    the mountain just seems to be getting bigger and bigger and i seem to be getting weaker and weaker.

    it would be nice if dr. lerner allowed some medications to make living with the illness a little more tolerable day-to-day during the antiviral treatment - maybe things such as cortisol or something.

    i really feel like i have no choice but to continue on this path. my fog is so bad now i cant even research anymore.

    i wonder why i cannot handle the usual valcyte dose now. many years ago, i was on high dose mood stabilizers and antidepressants with almost no blood tests. the doctor was very careless. i wonder if i have some liver damage...?

    thanks for caring


    [This Message was Edited on 12/15/2008]
  11. romalaw

    romalaw Member

    I live about an hour from Dr. Lerner's office and if I can ever help you while you're in town, let me know.

    I know I've mentioned to you before that cortisol has helped me more than anything. I wish you could find a doctor to prescribe it for you. Because the onset and progression of your illness is so similar to mine, somehow I think they might help you.

    I don't mean to tell you to go against doctor's orders, but I've learned to just keep quiet with doctors about what I'm taking and what other treatments I'm getting, so many of them have such egos and none of them knows my body like I do.

    You might also really benefit from seeing a therapist. Because this illness is so hard on our total system and any stress, even emotional, makes it worse, I found working with a good therapist very healing. Having a safe place to deal with my emotions helps them from becoming so toxic to my body.

  12. ladybugmandy

    ladybugmandy Member

    thank you so much for the offer of help. that is very kind.

    yes....its hard enough without having to deal with doctors interested primarily in their own research.

    how have you been feeling?

    you are so lucky to be living so close to dr. lerner! (but i dont think you see him, do you? sorry ..fog)
  13. romalaw

    romalaw Member

    Sue, how are you feeling today. Thank you for asking about my health. I recently caught a very bad stomach bug and had to go to the ER because I couldn't stop throwing up and got dehydrated. Funny thing is, since I've had cfs, I hadn't thrown up in 11 years. So this was a shock. Then I had an severe allergic reaction to something they put in my IV. ended up back in ER twice while they tried to find the right steroid combination to stop the reaction. Anyway, I'm telling you all of this because they have me doped up on a steroid pack, starting with 40 mg and tapering down over two weeks. Well, I have so much energy ( a little edgy too)on these steroids that I almost feel well!! Too bad I can't stay on them forever, it sure has been nice to spend some time with my old self again. It just confirms for me the importance of cortisteroids in my treatment.

    No, I don't see Lerner anymore. But I really am sincere when I say that you can contact me if you need to when you are in town seeing Lerner. I don't know how we exchange email addresses, do you?
  14. ladybugmandy

    ladybugmandy Member

    wow! you have been going through a lot! i am sorry to hear it. being sick on top of CFS is too much.

    how is your CFS? may i ask which dr. you see?

    i am slowly recovering from the trip, finally.

    you can email me at:

    thank you so much for listening and i hope you are better today.