XMRV virus Had blood drawn for VIP test

Discussion in 'Fibromyalgia Main Forum' started by hensue, Nov 9, 2009.

  1. hensue

    hensue New Member

    Hope the lab girl did everything right. My doctor signed off on it and they will fed-ex it to Reno overnight.

    Wanted to keep you updated.

    I am going to ask how long it takes to get the results when the test gets there tomorrow.

    Take care
  2. mbofov

    mbofov Active Member

    Keep us posted!

    Has this test been vetted by the WPI?

  3. hensue

    hensue New Member

    The Lombardi guy that was part of the research paper in Science for xmrv. He is also part of this lab. He might be head of it I am not sure.

    I will keep you posted.

  4. FibroFay

    FibroFay New Member

    I will be eagerly watching for news of your results!

  5. swedeboy

    swedeboy Member

    That's awesome! Please keep us updated. Dr. Montoya is gonna email me as soon as he is able to have his patients tested. I am anxiously awaiting for Montoya to call or email and say come in and get tested. My next appt. isn't scheduled until April cuz Montoya is soooo backed up!! I hope I get tested before then. The first thing Montoya said when he walked in the exam room was "Did you hear the good news?" and I said "about XMRV?" and he smiled really big and said "Yeah!"

    Peace and Joy,
  6. hensue

    hensue New Member

    My husband works in different states, He never works in Nevada in 36 years of marriage.
    He knows nothing about the lab test. When I talked to him the other day, he said I might go on a job in Nevada about March or April of next year.

    I thought that was weird.

    There is another one on the board I cannot remember her board name Mojjisi??
    She was suppose to have her blood drawn yesterday.

    [This Message was Edited on 11/10/2009]
  7. quanked

    quanked Member

    You say your husband is going to be working in Nevada? If you do not mind answering, what kind of work does your husband do?

    I am curious because my husband works in the building trades and he travels. He was in Nevada a couple of years ago. He was heading up to Edmonton, Alberta until things were put on hold until spring.

    I told him a couple of weeks ago that I would like to move to Reno because of the intstitute. At our age I am not sure how wise this would be. If I believed that the move would lead to me to some kind of recovery I would do what ever I could to make the move.


  8. hensue

    hensue New Member

    Has been for 40 years so he has been overseas and all over the states. We both worked on the pipeline in Fairbanks Alaska. I worked for Fluor and he for the pipeliners 798.

    What does your husband do?

    I have not been to Nevada, he has visited I would like to vist and see what it is like out there.


    I must brag he is an expert in his field. I am very proud of him and People he works with.
  9. hensue

    hensue New Member

    He has two different places to go. With results of one on one result and results of two at 50%
    at the other.

    Would you please help me understand that poll

    [This Message was Edited on 11/10/2009]
  10. quanked

    quanked Member

    is out of local 290 in Portland, Oregon--he is a journeyman plumber--has been for nearly 40 years. He has worked as pipefitter quite bit too.

    He has worked overseas and mostly in the western states. I am proud of my hubby too. He has worked very hard for a long time.

    Reno, Nevada is not too far from where we live but i cannot see myself driving 5 hours or so one way on a regular basis. I just do not have that kind of energy.

    Do you know what work is coming up in Nevada in the spring and where?

    Nevada is pretty hard hit by unemployement right now. It is over 14%!

    I am impressed with you! You worked on the pipeline! Incredible! My daughter is a journeyman carpenter. The thought of doing such physically demanding work just taxes my brain beyond its capabilities. It takes me days, if not weeks, to get done what I once could do in a day.

    I am having a crash of sorts. I am going out to do my couple of hours a volunteer work I do each week in a few minutes. I was thinking about not going. It is the one thing I do truly do for myself each week so I do not want to let it go.

    Thanks for sharing.
  11. hensue

    hensue New Member

    It is really getting hard since I quit work. He is gone and I want to be with him. Both my sons do not live close.

    As far as the Alaska Pipeline that was in the 70's you understand and I am a girly girl. I worked for Fluor and was in the teamsters in Fairbanks Alaska. I worked for the Engineers and was responsible for getting the blueprints to the right pumping stations on the slope.

    I will say that was the time of our lives and the prettiest place I have ever been.

    As far as the work in Nevada?? All I know is it a remote area and that is all I know right now.
    I dont look to far ahead. He could be saying he is going here and then end up somewhere esle.
    What state do you live in? Is it Nevada or I cannot think of what is around.

    I have worked in a retail business and raised the kids since they started to school.
    We tried going with him when they were young. It was too hard on the kids to change schools.
    I wish I was able to volunteer just do not have it in me. I need to be motivated and try.

    [This Message was Edited on 11/12/2009]
  12. quanked

    quanked Member

    I live in southern Oregon. I like the climate here but I have grown intolerant to the cold. No, it does not rain a lot here. It is only a small portion of Oregon that is gray, cloudy and rainy a good deal of the year and that it is up north and west. We are almost a mile high--not quite as high as Lakeview but it is considered high desert here.

    I moved to Portland to finish school and though there are many things I like/d about the area (it is lush and green and gorgeous well into the summer) I never adjusted to the endless time in traffic.

    My husband has not worked in our area much for a number of decades. I love Oregon but I could handle moving to Reno or somewhere near for the possibility of some effective treatment. He is looking at retiring and finding other work. Who knows. In the trades anything can happen. It does get old (and is much harder with this disease) having to do be my own so much.

    It was a fluke that I ended up volunteering. I wanted to observe a class that a relative was court ordered to take because she had lost her children to the state. I was curious about it--it is class that is for non-offending parents. Their children have been abused by someone other than the one attending class but the parent failed to protect their child/children. Before I had to stop working I was a social worker--I have a master's degree. I had done field work at the state child welfare agency in graduate school. This type of class for parent's was new to me. I had often thought that parents needed to be armed with knowledge on how to protect their children from predators but nothing existed of this sort. I wanted to find out what was being taught on the subject.

    I spoke with the therapist facilitating and teaching the class. It began with the idea that I would need to pay for the class and somehow it turned into helping her with the class. When my relative finished the class I stayed on. When I started out I was not sure I would be able to stick with it. I have missed a couple of classes but so far it has been doable. I do not schedule or do anything on class day--before or after. Many weeks go by and the class is the only thing I have done that seems productive. But come on--it is only a couple of hours! This is mind boggling to me. I can remember dealing with suicidal clients in the hospital til midnight--it made for a 16 hour day. Then I had to be back in the office at 8 am. What a huge disparity!

    My husband and adult son fix their own meal on Thursdays so I do not have do anything but shower, get dressed and get there. It sounds so simple as I write this but some days I have to really push myself. I am never sorry though. I am always glad that I pushed myself for this. My education has seemed like such a waste since I got sick. Now, at least I am giving something back. And it takes me out of myself and in odd ways it helps me learn more about myself and about this darned disease. I love helping. I long to help others find their way through life in less self-damaging ways. At least that is what I use to focus on. You know what the focus is now.

    Now that you are free to go with your husband to his work locations you are not healthy enough to go. I am sorry that this is the case for you. Me too. I really wanted to go with husband when he was working in the state of Washington.

    XMRV--I wonder where this will lead us. I woke up this morning thinking about the Whittmores' daughter and Ampligen. I thought of how she found some relief with this drug but then had to stop and is doing poorly. I wondered what this means to those of us looking on.

    Regardless of all the politics, greed, and egos--will the discovery of XMRV and then the approval of Ampligen bring about any significant relief for most of us or any of us? I have read over and over that Ampligen is relatively safe but I cannot help but wonder why Whittmores' daughter stopped taking it. This thought caused me to take a step back and reevaluate my possibly too hopeful thoughts about escaping this disease. I am just thinking out loud here. quanked

    [This Message was Edited on 11/12/2009]
  13. waltz

    waltz New Member

    Thanks for the update. I was wondering what Dr. Montoya's response was. Did he know about this research before or was it a surprise to him as well? Has it changed anything in his treatment use of anti-herpetic antivirals?
  14. swedeboy

    swedeboy Member

    Montoya knew about the research and said "did you hear the good news?" However, I think Montoya wants to do his own research study on XMRV and ME/CFS.
    I don't know about his treatments right now, but I think he still prescribes Valcyte cuz he offered it to me after my stomach biopsy tested positive for HHV-7 even though my pcr for HHV-7 was negative.

  15. ladybugmandy

    ladybugmandy Member

    i heard montoya is using lower dose antivirals now...but not 100% sure.

    i wonder if he will add AZT and how much he will add - if his patients are XMRV +

    hope his patients keep us posted!!

  16. waltz

    waltz New Member

    I see.. so I guess he couldn't talk about the research before.

    Do you know if insurance will cover the test if we get it through Stanford?
  17. swedeboy

    swedeboy Member

    I'm not sure what you mean about Montoya not being able to talk about research before? During our appointment Montoya was simply excited about the discovery of XMRV and he had me give him my email so in case he wants me tested for XMRV before my next appointment in a few months. At the time of our appointment VIP labs was not currently testing commercially for XMRV so Montoya couldn't have me tested. Now that VIP labs is testing for XMRV I am anxiously awaiting an email from Montoya to say come down to Stanford and get tested, but until then I'll just wait till my next appointment.
    A far as medical insurance goes.....I'm not sure if your medical insurance will pay for it....I have Medicare and Medi-Cal and so I am covered at Stanford and fortunately I have never received a bill from stanford or medicare.

    Peace and Joy,
  18. waltz

    waltz New Member

    Maybe I didn't make my earlier question clearly. I was wondering if Dr. Montoya knew about the XMRV research before it was published in Science Express, or if he found out about it as we did from the public news.
  19. ladybugmandy

    ladybugmandy Member

    i am sure they all have inside info before its released.
  20. denis321

    denis321 New Member

    You need to call your insurance company to see if they cover the test. Generally, even if a doctor orders the test, it is not guaranteed that insurance will pay for it. Many of the tests I've had for CFS have been paid for out of pocket, although I have been able to negotiate discounts with labs sometimes.

    As of right now, I don't think the XMRV test is covered by insurance (if anyone finds they do, please tell us!) since it has not been validated yet althought I know the WPI and other groups are trying to come out with a test that at least Medicare will cover. If Medicare covers it, other insurance companies will be more compelled to cover it.

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