CFS: Moving to be closer to Dr. Lerner

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ladybugmandy, Dec 31, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. thought i'd quicky share some info.

    its been about a month off valcyte for me now and i have deteriorated to almost zero. i am also experiencing some upper arm pain which i am sure is the beginning of FM.

    i paged dr. lerner, who explained that he cannot put me back on valcyte due to liver issues (enzymes still mildly elevated). he said the drug can cause liver cancer.

    if i still want the drug, he said i would have to sign some papers saying i understood the risk.

    i said i was much too sick to travel (the trips are grueling beyond description) and he once again said he would have to see me for testing and that he was trying his best to help me.

    i asked about the upcoming drug maribavir but he said it would effective against CMV only (contrary to reports by antiviral expert, Dr. Mark Prichard, who feels that it is also effective against HHV-6).

    I asked about the anti-malarial drug Artesunate, which was reported to be good against HHV 6 (early in the reproductive cycle, too) and be much less toxic. Dr. Lerner said he had never heard of the drug and said I was welcome to bring him literature.

    Artesunate is available only in Europe so it is highly unlikely i will be able to try it under Dr. Lerner's care.

    Perhaps artemisinin would be an option. this is the herb that the drug is derived from.

    i will ask about intravenous cedofovir (favored by dr. peterson) but since i am paying out of pocket, intravenous infusions would probably be out of the question.

    after weighing my options, i have decided to relocate to windsor ontario (i am canadian). i will be living in a rooming house by myself. this way, it will be easier to get to dr. lerner (though hard because i will have to shop, cook, and clean by myself). i am expecting that dr. lerner will require frequent visits for the next 2 months or so.

    i am a little nervous, never having lived alone before (ever!)....but i have to keep fighting as long as i can (and as long as finances allow).

    will keep you all posted.

    thank you for listening and caring.

    Love
    Sue


  2. quilp

    quilp New Member

    Hello Sue I wish you all the best. It shows the depths you are prepared to go in order to recover. I wish you well.
    I hope antivirals do work, but can I ask, have you tried looking at other areas such as the endocrine system, the digestive system ?
    I think Monyoya's full report is due this month or next and that should make interesting reading.
    Do you regards antivirals as a last resort ?

    Kind regards Mark
  3. romalaw

    romalaw Member

    Sue, I so admire your courage and determination. You are such a brave soul, moving to a strange city alone and ill. I hope you will get some support from your friend who just moved to Detroit. I am always impressed by the breadth of your knowledge and research of the latest CFS treatments.

    I truly wish for you that 2009 is the year that you find the key to healing. You have worked so very hard, it's time for the universe to open the way for you.

    Warm regards.
  4. Nanie46

    Nanie46 Moderator

    Hi Sue,

    I think it is very brave of you to make this move. I commend you for forging on and not giving up. All the best to you.
  5. redhummingbird

    redhummingbird New Member

    Sue-

    Your dedication to getting well and not giving up is moving (no pun intended). I admire your perseverence and strength in all of this.

    I was rereading some information from K. Loomis last night. She mentioned that some people relapse after being on Valcyte if they have either Parvovirus or enterovirus (I can't remember which one now).

    I can't remember does Dr. Lerner test for those?

    I agree that the travel to see Dr. Lerner is mitigating any progress you are making on the antivirals.

    I hope you have people who can help with the move. I recently moved and am crashing badly from it.

    I wish you health in this New Year...
  6. Forebearance

    Forebearance Member

    Best wishes, Sue!

    I hope that you find a treatment that works for you. I think you're very brave and determined.

    I would caution people with CFS about moving to the actual city of Detroit, because southeastern Michigan seems to have a unique kind of toxic mold that really bugs the heck out of me. I am glad that you won't have to stay in any more Detroit hotels, Sue. That alone might help.

    Love,
    Forebearance
  7. maps1

    maps1 Member

    to hear that you are having this setback, I could never do what you are doing. I hope you find a really nice place to stay and with good luck some good people to help.

    Maybe look into the home care, can't remember what it is called but i have spoken to them here in toronto and they will come and help you bath and they also have the meals on wheels program, if i remember the name i will let you know. I know how difficult getting food is i have been so sick that i spent 10 day before xmas with only bread and cerial but no milk, called around for take out that also sent milk.

    Being alone is very, very hard and I wish you all the very best.

    have not been on here for months have been in a major crash. as you may remember i did the physc route at st josephs and they encouraged me to become a patient at the family medicine center. it has been a total disaster have called my old doctor who is willing to take me back.

    I decided in june to end all the physco stuff and get off all the pills as they had never really solved anything. i did ok for a couple of months until the pain started.


    I am now going the naturapathic route and am going to see Dr. Kerr who I think will be willing to work with the naturapth on some tests.

    all the very best

    regards
    margery
  8. mindblower

    mindblower New Member

    Good luck with this move, Sue. Set things up to be as safe and easy on you as possible as you're doing(including the move prep.., the move itself, etc.).

    I made a similar move last year and sort stunned myself with having the assistance of eight people on move day when just the day prior I thought I might only end up with one person helping and TONS OF STRESS as a result of too little support. Anyway, the key to making it work was twofold:

    One, "keeping my eyes on the prize", the goal of a healthy great life beyond ME/CFS(I once collaged or vision boarded this for myself and kept it on display in my apartment to support greater details of such a future remaining vivid in my imagination). Two, "ask and you shall receive", literally asking everyone I came into contact with for support(starting no doubt with the few specific friends and family whom I sense supported me the most and most authentically).

    MB[This Message was Edited on 01/02/2009]
  9. southflorida

    southflorida New Member

    My husband has been sick about seven years now and in bad shape for the last two. Do you know anyone that has taken and improved long-term from artesunate? How about zadaxin? We are just about ready to take the zadaxin,but still have not heard from anyone that has taken this. We were hoping Ampligen would come thru. He has a persistent CMV infection. Pain in eyes, insomnia, pain in legs, spine and head. He is hoping to find someone that will give him the valcyte intravenously as it has helped his other symptoms except the head and spine.
    We are constantly looking for answers, too. I really hope something comes thru for you.

    Kindest regards,
    Michelle
  10. quamijay

    quamijay New Member

    hi southflorida

    go to the zadaxin website and email the north american distributor, he has some information on it.

    also, HHV6 foundation says isoprinosine, undenatured whey, avemar has produced better results in zadaxin in the few patients who have tried.

    please let us know how you get on, thanks
  11. ladybugmandy

    ladybugmandy Member

    would it be possible for yous husband to stay elsewhere to get IV antivirals (peterson in NV or montoya in CA)?

    perhaps contacting dr. manfred marschall, who studies the antiviral properties of artesunate, might be helpful: manfred.marschall@viro.med.uni-erlangen.de

    or

    Tel.: +49-9131-8522100; fax: +49-9131-8526493; email: mdmarsch@viro.med.uni-erlangen.de

    has your husband had his RNase L tested?

    ampligen should be approved in 3 months.

    by the way..tell paul to get back on antivirals. he is a fool if he doesn't.
    [This Message was Edited on 03/14/2009]
  12. 28years

    28years New Member

    You are so brave and so determined to get better. I really hope the move works out for you.

    I think your chances for improvement will be greatly increased if this move helps you see Dr. Lerner without such a hugh energy drain.

    there is a great thread on this site about getting help getting groceries. I'll try to bump it up for you.

    Today I start Valcyte 900mg per day.

    I will be posting an update on my progress so far.
  13. ladybugmandy

    ladybugmandy Member

    i am not moving to MI...this was an old post. i tried to move to windsor a few months ago but couldnt do it. the place was a dive...

    sue:)
  14. 28years

    28years New Member

    I remember you saying you tried moving in the past. I thought you had decided to try again.

    I guess I better check the date on the posts before I respond :)
  15. ulala

    ulala New Member

    Except for the price and the fact that it needs to be shipped refrigerated, and it's not available in the U.S.

    My doctor is Hungarian. I'll have to ask her about it because Avemar is supposedly available in Hungary at a reduced price.

    I haven't been able to find zadaxin available in the U.S. Has anyone been able to get it in the U.S.?
  16. quamijay

    quamijay New Member

    whats the news on artesunate???
  17. heapsreal

    heapsreal New Member

    Saw your post on hhv6 foundation. Your doing well with valcyte and valtrex still? Wondering if your on any other treatments that are helping. I've added doxycycline to my famvir treatment and have found its helping decrease pain. In the past have had some positive response to antibiotics so thought I would add them in and see what happens so far so good, but like most treatments still have a bit to go. I would say Im at 70-80%, feel like Im moving forward, atlast.

    Keep us informed, your success keeps us all positive.
  18. ladybugmandy

    ladybugmandy Member

    thank you...i am glad the doxy is helping. i guess you have some bacterial issues..?

    i tried doxy for a while 2 yrs ago but it had no effect.

    thats awesome that you are at 70-80%! i am barely at 35% but its much better than how i was when i started. i am guessing that at this rate, it's gonna be like 6 yrs before i can work full time (as long as it happens, i'll take it). i just went too many yrs without the proper meds.

    i saw a post from someone on this old message board i found....he was sick about as long as i was when he started antivirals. he had improved to about 60% but it took him 5 yrs.

    this is INSANELY slow. i have NO idea how michael manson recovered in 6 months!