Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jul 23, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi everyone. just wanted to tell you about yesterday's appt. with dr. lerner.

    i let him know that i am still between 2 and 3 on his scale. (maybe an average of 8% improved by my estimates)

    i had been experiencing severe breast pain for weeks, which lessened after menstruation 1 1/2 weeks ago but was still there to some extent. i was especially concerned about the tenderness in the area near the armpits because i know CFS patients are at a higher risk for lymphoma.

    he examined the area and said he found no masses and that he thinks i am fine.

    i also told him that my index finger had been twitching on and off for a while but he said these transient symptoms, although important for me to tell him about, are likely nothing to worry about.

    i told him that i was continuing to have severe insomnia on the valtrex and no matter when i took my sleeping pill, i could sleep only during the day and not at night. i said that my sleep cycle was totally reversed.

    i assumed that many patients must have this symtpom but he seemed a little surprised by it. he didn't really address the issue because i told him i am still able to handle the problem by sleeping during the day.

    he said my liver functions are almost normal now so he wants me to re-start valcyte at 450 mg every 48 hours and continue with the valtrex.

    my HHV6 titre, when checked at my last visit a month ago, was 1:320. in january, when i first saw dr. lerner, it was 1:640.

    blood taken a month ago also showed EBV still active with EA antibody titres at the same levels as before (25 with normal being 0-20).

    he said that the most important thing is that i stay with the treatment. he said i am young and otherwise healthy so i should do well.

    i asked him if it would be worthwhile to re-test the RNase L but he said it would have no affect on his treatment plan.

    i have to see him again in 1 month.


    in order to afford valcyte, i will have to go back to work next march at 20 hrs. a week to keep my insurance. this is worrying me quite a bit, since i am very sure i will not get significantly well in the next 7 months. i have a gut feeling that it will take about 4-5 years, given the fact that i have been sick 15 years and was untreated until recently.

    roche does not have an assistance program for canadians. i am doubtful that the health plan for people on disability will cover vaclyte for experimental usage (if i am even able to eventually get disability).

    thank you all for reading. it's back to bed...i am 1/2 dead for days after the michigan trips!


    [This Message was Edited on 07/24/2008]
  2. hubcap_halo

    hubcap_halo New Member

    You'd be one of the healthiest on the board.

    I'm so impressed with how you document and report all your doctor dealings. And with how supportive you are with other PWCs.

    I'm glad to hear you are improved and I hope you keep improving.

    I've often had some twitching, nervous system stuff that goes on just for a little while.

    I know another guy whose sleep cycle is completely reversed. I hope yours falls back into line with day/night soon.

    Lowered HHV6 titers: good news!

    Try not to think about work now. That's next March. Deal with today. Try to find some peace and joy in today and know you are DOING EVERYTHING YOU CAN TO HEAL.

    and blessings
  3. sascha

    sascha Member

    i am most interested in your progress. the outlook sounds promising. that is tough, having to go back to work. i wouldn't be able to manage it at this point. wow- you'll be taking valtrex + valcyte. i thought valcyte was rough, but don't seem to have any side-effects from valtrex.

    and i almost don't dare say it again- seems like every time i do- down i go for days of not being up to anything; BUT i seem better; still terribly weak and rickety; but out in the world more and more; being able to enjoy things, be happy, see people. but it's a very uncertain state of being and i can go down at any moment.

    i wish you continued progress- Sascha
  4. chrissy12

    chrissy12 New Member

    It sounds like you had a good appointment with Dr. Lerner.
    I had the finger twitching going on a few months back and never knew it is part of the treatment. It was the strangest feeling. I had accupuncture and he tried to help it.

    Also, I have had the breast tenderness, too. Interesting.

    I really hope you don't have to go back to work. It seems like you have been getting better since you stopped working.

    I see Dr. Lerner next week. I am anxious to see what he will do next. He took me off one valcyte because of liver.
    I was feeling somewhat better, but it didn't last. I don't know if it's because of valcyte or the mycoplasma problem. I am praying I don't have to stay in Michigan for 6 weeks.

    Thanks for keeping us posted...Wishing you well. Cindy
  5. SpecialK82

    SpecialK82 New Member

    for continuing to post your progress reports - I know it even takes energy to read and write on this board.

    I hate it when we have to make decisions about our health based on how much money it costs. I am sorry that the cost of the medical care could cause you to have to work again. I know March is a while off and at some point I think Dr. Lerner had told you that he expected you would be improved in a year (or year & 1/2). So, alot could still happen between now and then.

    As for the sleep issue - I don't know if you've tried melatonin? I haven't (so I'm not promoting it) but I am thinking about trying it. It sounds promising from the reading I've done about it, it may be worth a shot.

    Hang in there - we are all behind you!!

    [This Message was Edited on 07/25/2008]
  6. 28years

    28years New Member

    I was wondering about your sleeping problems. You haven't mentioned if you have been taking any vitamins, so I don't know if this applies to you, but I was wondering if you take vitamin B6. I know it's one of the vitamins that Dr. Lerner recommends.

    If you do take vitamin B6, do you take in the evenings?

    Vitamin B6 can greatly interfere with sleep. Some people can't sleep at all when taking vitamin B6. Other people can sleep if they take B6 first thing in the morning.

    just a thought.

    Hang in there were all behind you.
  7. SpecialK82

    SpecialK82 New Member

    That's interesting about the Vitamin B6, because I just bought some melatonin for sleep for the first time yesterday, and it says that B6 is added to the pill to help metabolize the melatonin....
    [This Message was Edited on 07/26/2008]
  8. Rafiki

    Rafiki New Member

    Also often causes very vivid dreams and vivid recall which can interfere with sleep.

    Ladybug ~ I doubt if ODSP would pay for your med.s but they may. Perhaps you could find out anonymously, somehow. ME is recognized as disabling in Canada so getting approved is not the horror show it can be elsewhere.

    ETA ODSP drug plan doesn't cover my Doxy and does not allow a special case script -- which is not called that but my brain is on standby today. So, if you want to continue this treatment it would be wise to find out what their position is on this.

    Peace out,

    [This Message was Edited on 07/27/2008]
  9. 28years

    28years New Member

    I always take vit B-1 when I take Vit B-6. For some reason it makes the dreams much less vivid.
  10. ladybugmandy

    ladybugmandy Member

    hi everyone! thank you so much for posting. i haven't had internet access for days (changing service providers, etc) so i am out of the loop!

    i have to say....not having internet is hard when you're practically a shut-in! i didn't even have TV for a while...thought i would go insane lol

    i think someone asked a water question...you have to drink 6-8 glasses i think while on valtrex.

    i am now sicker since starting the valcyte...hope its a good sign....

    i am awaiting my new RNase L test results which should be here monday. i do hope its lower than 1000...ugh!

    hope you are all doing well.....i am gonna go try to catch up on all the posts till my fog gets even worse!

    love you
  11. SpecialK82

    SpecialK82 New Member

    So happy to see you back and that you are doing OK!

    We missed you

    Hugs Kristina
  12. ladybugmandy

    ladybugmandy Member

    thank you:) i am glad to be back!

    there were one or two days when i thought i had gone beyond 10% improvement..to maybe 11 or 12%...but i am back down again since restarting valcyte.

    all the best

  13. SpecialK82

    SpecialK82 New Member

    that you may have gone to 11% or 12% Wowie!!

    It sounds like the valcyte could be the reason you aren't doing as well now but definitely could mean that it's working.

    It's difficult to go up and down all the time and not know which variable is causing which effect.

    I am pulling for you so hard, hang in there you are doing great!

  14. erica741

    erica741 New Member

    I've been too sick to read your entire posts, but I see that now you are on both Valcyte and Valtrex? If so, then feeling worse for awhile is probably to be expected. Hopefully the Valtrex lowered your EBV enough that the Valcyte herx will be milder.

    Thanks for keeping us posted! I truly hope you feel better soon.

  15. ladybugmandy

    ladybugmandy Member

    thanks all! i am taking 4 g of valtrex and day and 450 mg of valcyte every 48 hrs. i think dr. lerner wants to put me on more valcyte but my liver enzymes are a problem.

    rafiki...thank you for telling me that ODSP wouldnt pay for your doxy! that SUX! i am sure they wouldn't pay for my valcyte either....it looks like this is all still too experimental.

    i hope dr. lerner gives me the OK to go back to part time work in march. i dont think he will, but i will have to anyway. its about 20 hrs a week.

    i have talked to my mother about renting a room in a house near my work so i can at least shave off the 3 hrs a day traveling time. perhaps i can manage it.

    in toronto, a little bedroom in a house with shared kitchen and bath downtown would probably be around $600...but the valcyte would probably be more than that, depending on how much i'm taking. also, with insurance, i would be able to stay on brand name valtrex.

    love you guys:) thanks for caring...it means a lot.
  16. ladybugmandy

    ladybugmandy Member

    jam thank you! i will look into the presentation.

    anchor....i am sure that dr. lerner would have suggested a liver medicine if he liked using it....i am too chicken to ask! lol

    i am very glad that it worked for you, though!

  17. ladybugmandy

    ladybugmandy Member

    lol believe me.. i am the queen of questions. when doctors see me take my notebook out, i can feel them bracing themselves !

    but by the time i saw dr. lerner, i felt like i was dying...i felt that this was literally my last chance. i was close to ending my life. so if he had asked me to shut up, stand on my head and cluck like a chicken, i would have done it.

    he makes the rules and i had to accept that if i wanted help. simple as that.

    i think we have to understand that dr. lerner has spent so much time and energy in the last 20 years dealing with skepticism and ridicule for his opinions...he is just fed up and has little patience left. as time goes on, he loosens up a little.

    i don't mind his manner....he gives me hope without the feel-good-new-age-buy-my-supplements crap!