Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Oct 1, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i saw dr. lerner yesterday and thought i'd share what happened.

    i told him i thought i had deteriorated a little due to some stress and that i was 2 on his scale.

    i asked him if i could increase valcyte and have the mycoplasma pnueomnaie re-chcked.

    he agreed to re-check it and said i could try 900 mg of valcyte every 48 hours along with the 4 g/day valtrex.

    because my liver ezymes are such an issue, he said he needed to see me in 10 days (he goes to greece from oct 15 - 20) to make sure i am safe.

    i told him it costs so much for me to go there...would it be possible to fax him my AST and ALT results? he said no...he needs to see other things.

    luckily, when i went to schedule the appt., none were available due to his leaving (there was one but it was not possible for me to be there at that time due train times, traffic, border crossing, etc).

    dr. lerner agreed to let me fax my results in but asked me to check my AST and ALT on oct 11 and 21.

    he asked me if i had seen the new video on his webiste and i told him i had. he asked me what i thought of it. i said i had known about most of what he said already except for the percentage of people who had to stay on antivirals forever or at least very long term. he made a comment but i was too zoned out to listen.

    i asked him what the average duration of illness was of the patients he studied for the 6-year study and he said he would have to check the exact number but it was somewhere between 3 and 5 years.

    he reassured me that he had many patients who got better after being sick longer than that.

    i mentioned something about the montoya study and he said there were some flaws to it. he said something about roche but it was unaudible to me.

    he talked some more (not about my case) but i couldn't make out what he said and i didn't ask him to repeat it. i was just too sick to process the info and didn't want to bother him (but i have a feeling it was important info).

    i asked if we could add tagamet and he said "maybe in the future..not now".

    i asked him about the strange crustiness i had been experiencing in my right ear canal but he looked and said it was fine.

    this trip was the most grueling yet, i had hoped to be a little better by this time. also, i don't know how many months my mother's money will last.

    i also took a letter from lerner for the border guards, which they had suggested i do. it backfired. after reading that i have an "epstein barr and HHV 6" infection, they gave me a lot of grief, asking if i was contagious. they had me (and the taxi driver) wait for a long time while they searched the car, interviewed me, and did a background check. UGH.

    ...so the new valcyte dose will cost me about $1300 / month unless i go back to part-time work. roche will not adopt a patient assistance program for CFS in canada and upon doing some more research, i realize it will be virtually impossible for me to obtain it through a gov't program.

    so my only hope is to improve enough to go to work and then perhaps try to move into a shared house near my work, in march.

    another factor is my boss' impending retirement and whether i will even have a job to go back to...i need at least 12 hrs a week of work to get the medical coverage.

    everything remains up the air for now. i dare say...its not looking good! lol

    thanks for reading....and sorry i missed some likely valuable info.


    [This Message was Edited on 10/02/2008]
    [This Message was Edited on 10/02/2008]
  2. chrissy12

    chrissy12 New Member

    Hi Sue,

    Wow! It sounds like you had a rough day.... The border crossing is amazing. Not only do you have to make a long trip, you have to go through all of that...I feel for you..

    Yesterday, Dr. Lerner did ask me if I saw the video. I told him yes, too. I did ask him if mycoplasma was part of Group B since it wasn't mentioned and he said yes, they are finding other infections that are part of this CFS condition.

    Again, he told me there was someone who was sicker than I am and had been sicker longer than me who had just turned the corner. So we have to keep hanging in there.

    If you have another infection going on, he will find it and start treating it as well. It is a long road, but I still feel we are in the right place.

    I am sorry to hear about the valcyte issue and you maybe having to go back to work. I am at a 2 and I can't imagine having to do it. Does Dr. Lerner give you any suggestions on how to get the valcyte?? (without working)

    I hope you have a great day!!!! Cindy

    [This Message was Edited on 10/02/2008]
  3. ladybugmandy

    ladybugmandy Member

    cindy..thank you for your reply!!!

    yes...i am also sure we are on the right track. it will just take time.

    i have not asked dr. lerner about valcyte. i am not sure what he could do to help, other than write a letter for me. the gov't people here said it would probably not help. i may have to try anyway.

    i will ask dr. lerner about it when the time comes. i'm still hoping to turn a corner sometime between now and february! lol

    i am so glad you were able to find a way to do the IV antibiotics. you will get well...i am sure of it!!!

    thanks for the support:0)
  4. ladybugmandy

    ladybugmandy Member

    thank you again for your support!

    it feels good to feel strongly that i am on the right track.

    i am trying not to worry (i have a touch of OCD lol). maybe things will work out by next year.

    perhaps i should seriously look into some relaxation techniques.

    you know. ..even though i have not improved a lot, i HAVE improved some. so that is a major thing in itself.

    hope you are doing well:)

  5. SpecialK82

    SpecialK82 New Member

    Poor Sue - what a nightmare at the border! That will be something that you can look back at later when you are better and laugh at. (OK, the laughing might be way later and you might need a little alcohol to get it going :)

    If you don't mind me asking, why is it that they wanted a letter from Dr. Lerner? Were you having any difficulties in crossing?

    Congratulations on the Valcyte dosage increase! That's something positive. I know that it's difficult to follow what he says sometimes. He doesn't always answer the question that's asked and he sometimes looks as if I'm interupting his thought process so I definitely don't ask for further clarification if I don't understand.

    Sue - you are a tough cookie, there is no doubt about it!

    I've had a thought on this whole improvement issue BTW.
    For myself, I have declined steadily over the last two years and am continuing to do so. I don't know if you would say the same or if you feel that you were steady before treatment.

    For me, if I just stabilized at the crappy level that I am at, that would be a very good start for me! So, if you had the same experience pre-treatment, then the treatment may actually be helping more than 10% or so if it has stopped the decline.

    In otherwords, without any treatment maybe you would be at a worse level than where you started out. If you are at about 10% improvement (give or take) then maybe you are really 15%-20% better than if you had no treatment??

    Am I making any sense?

    Hugs, Kristina

    [This Message was Edited on 10/02/2008]
  6. ladybugmandy

    ladybugmandy Member

    hi kristina!

    o you are totally right...in fact, i wonder if i wouldnt be literally dying right now if i hadn't started treatment. it probably did stop the decline and i am at least a little better than i was before, too.

    strangely, i only had trouble at the border once before. they usually let me through. a couple of guards did suggest that i bring a letter to make it easier. ...but i certainly will not be showing them one again!

    the letter i took was the same one i used for my income tax form....perhaps i should have asked for one that didn't have the names of the viruses. that seemed to freak the guards out lol

    thanks for the post....i hope you doing OK:)


    ps..thanks for calling me tough...it made me feel good hehe
  7. SpecialK82

    SpecialK82 New Member

    Yes, it might be good to just get some vague letter from Dr. Lerner, we wouldn't want to cause some international incident. lol!

    I told DH after I saw Dr. Lerner that I really didn't want to tell the neighbors about the virus because they would surely think that I was contagious! You know how gossip spreads around a neighborhood, and I can just picture the Mothers pulling their kids away from me when I'm outside, etc. etc.

    I am very careful who I tell - I would hate to start a mass hysteria! Kind of like Frankenstein when the villagers descended on the house with torches :)

    love, kristina

  8. ladybugmandy

    ladybugmandy Member

    yes! i was afraid to tell ppl at my work about the CFS being a "viral infection" but i did anyway. in fact, once i did, i couldnt shut up about it lol.

    i don't know if they think im contagious or a flake or what...but i dont care LMAO

  9. stschn

    stschn New Member

    and your updates are so important to the rest of us. I'm with you on telling the world about the Viral infection. I just feels so damn good to know what is going on and to no longer have to put up with people that try to tell me I'm depressed. I wasn't depressed just very angry that I was sick and the doctors were not listening to me. It's my body and I know what is going on with it. I knew that I couldn't exercise without a relaspe and guess what they now know that many of us can't. I do follow up with I'm not contagious and that most people have these viral infections it's just that my body is not able to keep them in check and they have over ridden my central nervous system. I had in my mind that we were to do a Valcye update when we changed the clocks but I've seen nothing here about it so I hope it o.k. that I just share it with you. I see Dr. Montoya at 11:15 on the 5th. All we have to do is drive 2 1/2 hours tomorrow to spend the night and see him the next day. After seeing what you had to go through I'll never again complain about the trip. I did the 6 months on Valcyte and felt terrible the whole time. I went off on Feb. 14 so it's been 7 months now and I've seen little improvement over that time. What I realized on the drug was some cognitive improvement in my math and directions, in fact a lot of improvement. What didn't improve was my spelling and word finding-of course you most likely noticed that. Very little improvement in my energy and I think most of that has come from my work with the Pacific Fatigue Lab that Dr. Montoya refered me to. Because of the work I did with them I have made many changes-a stairlift, a powerchair, and travel wheelchair, and a shower chair. The end result of all this is that I am no longer doing the push and crash thing. I just talk to CLO and we spoke about the likelyhood that he will suggest that I go back on the Valcyte. Your post has helped me to make up my mind and that is what I will do. I just wish I knew how long I was going to live. At 71 if it was only until 75 I'd say no way it's just to hard to go through again. But what if it's 91? It should be worth it then so I'll go with 91! I am so very fortunate to have a man at my side who takes such good and loveing care of me and some wonderful kids (?) Grandkids and now Greatgrands that it's worth trying to hang around for a while. Again thank you for the information that you bring to us. Joyce

  10. redhummingbird

    redhummingbird New Member


    Both you and Sue are special people. I have learned a lot from both of you and I'm grateful for that.

    There are so many questions about Valcyte. I'm in the midst of trying to make a decision about whether to take it. I get paralyzed by indecision mostly out of fear of the side effects. I can't swallow pills so I have to crush them.

    I remember the same agreement you do about the Valcyte Pioneers updating their progress each time the time changes. Maybe start a thread? I would love to see updates from people.

    The Pacific Fatigue Lab sounds wonderful.
  11. ladybugmandy

    ladybugmandy Member

    thank you so much for the kind compliments. this board is full of helpful, caring people. i do wish i had so many in my "real" life!

    its funny...my mother is mortified when she hears me tell everyone about my "brain infection". i tell everyone who talks to me: the janitor in our condo, the bus driver, everyone! LMAO

    i figure the more people i tell, the more word will get out and might help someone else.

    in fact, i went to a walk-in clinic for a prescription for ear drops the other day and saw a very young recent med-school graduate. i quickly told her about my condition and the EBV.

    she said "you know what? i had mono 2 years ago and have not been the same since either! i can sleep all day and find i do not remember things as well as i used to."

  12. stschn

    stschn New Member

    I seem to remember something about not crushing Valcyte pills please double check on that hopefully I'm wrong but better safe than not. I took them with V8 instead of water as they went down more easily. I saw Dr. Montoya Wed of last week and yes I think your right I'll do a post update and see if anyone chimes in. Thanks, Joyce