Thanks to Ladybugmandy

Discussion in 'Fibromyalgia Main Forum' started by lgrass, Nov 26, 2009.

  1. lgrass

    lgrass Member

    Hi Sue:

    Glad the news of xmrv has pumped you back up again. I REALLY appreciate all the great new info you have posted to the site over the past few days....especially Tim Luckett's blog.

    i too am eager to see what new treatment options will come available to us...i'm also a willing guinea pig to try anything, quick : )

    i'm sick of being sick and in bed everyday. i want to start to LIVE again : )

    i did iv abx for 2 years, after being given what a now believe to be in an inappropriate lyme toxic drugs don't frighten long as they give me some quality of life back.

    let's keep the faith, energy and belief in our new, improved healthy selves alive and pumping.

    i'm right by your side!!!!

    thank you.

    warmest regards, lisa
  2. ladybugmandy

    ladybugmandy Member

    aww you guys are making me blush. thank you. i needed to hear all this tonight! tonight is baaaad. you guys are wonderful:) and if i have helped anyone here, i am so glad.

    i had a very tiring day but something good happened. a top Toronto virologist agreed to help me try an HIV med if i test positive to XMRV (which i will). that is a small miracle for Canada. the doctors here are notorious for not helping with CFS. he even said he will order and read the Science article. so i wont have to rely on a GP to follow my blood work. he seems to know a lot about HIV drugs. the HIV/AIDS docs here won't help CFS people at all.

    looks like the Science article will be taken seriously everywhere. it is what we have been waiting for.

    the virologist didn't seem too shocked that i wanted to possibly try AZT! he said it could be somewhat toxic but he didn't seem too concerned. hope that is a good sign. i know it can cause lactic acidosis and mitochondrial depletion (or something)...but i will pop it like candy lol

  3. denis321

    denis321 New Member

    I think if AZT works, it will just be a stepping stone until they find a better drug.

    It's good the virologist wasn't too shocked. It really makes a difference when you have a doc who has experience giving the drugs. Yes, you have to be aware of side effects but having a doc who can tell you the ins and outs of a drug really helps. My primary has lots of HIV experience. When I've brought up the issue of Valcyte in the past and HIV drugs this time, she was her usual calm self and, while stressing the need for monitoring, allayed many of my concerns about side effects as she had used them many times in the past.
  4. ladybugmandy

    ladybugmandy Member

    denis..i totally agree. AZT will not be used for very long. i just worry about being able to get the other drugs because of expense.

    i really do feel somewhat relieved that a knowledgeable doctor has agreed to follow my bloodwork...i guess those docs would pick up on complications sooner.

  5. spacee

    spacee Member

    To find a knowledgeable, supportive doc is miraculous for us (usually). I do pray that his experience with side effects will help guide in these uncharted but exciting times.

  6. slammed

    slammed Member

    hi sue,

    i know you and i want to do the right thing , and that we both have expressed interest in AZT at maybe 300 mg. you are considering Switzerland as a source,etc.

    very importantly for everyone in our situation, i have direct info from Dr Mikovits that this is not a drug for use against xmrv.

    it not only is ineffective against the virus in the infected part of the dna, but also can damage the healthy uninfected dna. i am happy to have have learned this prior to your trying it, or my trying it, or anyone else too. she thinks that there will be a (relatively fast progress), counted in a few months, until something useful is developed. begin the time clock after the Holidays, meaning about Jan 1. we have to hang in a while longer after January.

    we have to do this. we can do it.

    i'll check back here in a day or two to make certain you have received this info.

    more Maintenance ahead for us... but i assure you, she is definitely dialed into the work and is well aware that we are in need. those in WPI group are behaving heroically.

  7. ladybugmandy

    ladybugmandy Member


    thank you for your post.

    i wasn't going to switzerland for AZT... i was going to go for assisted suicide :-/

    i knew that AZT can damage normal DNA but i have heard that AZT is the only drug shown in the lab to inhibit XMRV so far. dr. john coffin, an XMRV expert, told me this.

    if dr. mikovits is right and AZT is not effective, i am very very glad that she gave a timeline of a few months! this could be great news...BUT if they are developing a new drug for XMRV, it will be very expensive.

    i hope there is a way to obtain it...or i'm dead :(

  8. slammed

    slammed Member

    what the? i just spent two hours hunting & pecking a post to you (sue), and hit submit, and it disappeared and didn't post.

    i can't type and now i'm worn out.

    more later
  9. ladybugmandy

    ladybugmandy Member

    slammed that happens to me a lot and i cannot stand it. it infuriates me. my brain is so fried it takes a lot to type a post!

    i have also been trying to post on the pheonix rising board and it wont let me log on..ugh.

    jam ty again for the compliment:)

  10. richvank

    richvank New Member

    Hi, slammed.

    That has happened to me a lot, too. The board times out if I take a long time to type my post. However, I have found that if I then hit the reverse arrow, it will go back a page and my typed message is still there. I can copy it, and then log in again to the board, and then paste it in a new message form, and it works. Maybe that will work for you, too.

  11. richvank

    richvank New Member

    Hi, Sue.

    I just want you to know that I've been praying specifically that you would get connected with the right person in your area to help you. Maybe this virologist is that person.

  12. hensue

    hensue New Member

    Keep me posted if you get the test. You are in the fight with us again! You are very smart and I read everything you post. So please do not stop posting.

    Rich is right this kind of doc would be awesome.

  13. slammed

    slammed Member

    I spoke with the Tech Support people at Prohealth, and am happy to report they have increased the session time-out period from 40 minutes , to 2 hours and 40 minutes. this should be a really big help for us slow typists and general slow movers.