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VIPDx Serology (Antibody) Test Results Yet?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Stone, Oct 18, 2010.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    this was like a suspense novel. I was on the edge of my seat since I had not read this thread before now. I was reading through all of the posts, one right after another. "How will it come out?" I wondered. It was like a soap opera.

    The ending was a twist. Not only were you positive, but the doc then said, "Hey, would you teach the rest of us about your illness?" How cool is that?

    The times, they are a changin'.

    Tina
  2. Lynn

    Lynn Senior Member

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    Hi Sushi, i just got my test back as well. There are no numbers on it. It just says positive. I hope that helps.

    Lynn
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks Lynn,

    I was hoping for numbers but I guess it isn't that fine-tuned yet. We might be able to correlate titer numbers with something. There are still a lot of mysteries.

    I can't remember--did you do culture as well? And if so, was it also positive?

    Sushi
  4. AliceZ

    AliceZ

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    I submitted my blood sample in July and the first test (pcr?) came out negative. I'm looking forward to getting these serology results soon. My doctor was out all last week so I guess I'll have to wait a little while longer.
  5. Daffodil

    Daffodil Senior Member

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    stone...i am still waiting for serology results. i was negative by PCR, culture, and the old serology too. but the HIV meds are helping, so i must have XMRV or something like it.

    dr. mikovits once told me that she was sure i had it but that it was deep in my tissues.
  6. aruschima

    aruschima I know nothing

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    Daffodil,
    I just tried sending you a private message, and it says you exeeded your storage limit. Please delete some of your old mail, so i can mail you.

    Hi Daffodil,

    I read with interest that you also tested negative for XMRV , but you are on retro virals and they are helping ?
    Would you mind sharing ?

    I also tested XMRV negative culture at the REDlabs in Brussels, but something went wrong at Meirleiers office and they did not do the MLV-related viruses.

    But i really would like to know how much better your feeling and if you experienced any side effects?
  7. Lynn

    Lynn Senior Member

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    Hi Sushi,

    No, I took the inexpensive route and just did the serology test. Of course, since it was positive, I am now glad I saved the money on the additional test. If it had come out negative, I may have been upset that I didn't get both.

    Lynn
  8. Stone

    Stone Senior Member

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    The report didn't give numbers. It has under the heading Test Code, XNDS

    Then under the heading Test Description, XMRV Serum Antibody detection

    Then under the heading Normal, it's blank

    Then under the heading Abnormal, Positive (surrounded by rectangular box)

    Then under the heading Normal Range, None Detected


    For the culture results, under those same headings it says: XAND, XMRV Blood DNA detection qualitative, None Detected, (blank), None Detected
  9. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    I thought I heard or read that the newer versions of the test included all the gamma retroviruses they've identified, not just XMRV. Did I make that up on a foggy day? :rolleyes: From Stone's report, it sounds like the serology is only for XMRV.
  10. Stone

    Stone Senior Member

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    I read/heard that the serology covers all the variations published so far. I suspect that the report is on a form that was printed prior to the test being tweaked to cover all the bugs in question, or some such scenario. I'm pretty sure the VIPDx website clearly states that their antibody test looks for all of the variants.
  11. Stone

    Stone Senior Member

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    When I Got My Results

    I've been trying to determine how I was going to describe my office visit on Friday when I got my positive serology results and not a lot is coming together, so forgive me if I'm not able to put this in writing with much aplomb.

    There's a lot of background about my dealings with this PCP that may or may not be relevant but it's rather long so I'm going to try to leave out as much of it as I can in the interest of everyone's energy.

    My doctor is rather new to me. I came to him after firing my previous PCP for failing to take anything I had wrong with me seriously and blaming everything, no matter what, on fibromyalgia.

    I wasn't ecstatic about this new doctor either but he was better than the last one although that's not saying much. He would at least examine me and he did seem very receptive on the CFS front and seemed intrigued by the whole XMRV thing and genuinely welcomed the material I brought him on my first visit which included a copy of the Canadian Consensus document, the Science paper, the Light's paper in Pain, the CFS overview article from The Pain Practitioner and a few other things. He said he read them all and found them very interesting, even personally calling me to ask a few questions.

    In spite of this, he still didn't seem to take me seriously during office visits at all. But then again, how many people with our disease are truly taken seriously by the typical PCP? That's just a pipe dream for the majority of us, I tend to think, and perhaps all the more so for us peri-menopausal females, even those who don't have our disease.

    This doctor didn't take my agonizing femoral neuralgia seriously, refusing to give me anything AT ALL for the pain for 19 horrible weeks until he got me in to a pain clinic and that was only after my psychologist called him and asked him why he wasn't responding to my emergency.

    On one follow-up visit the morning after I had been in the emergency room all night for a gallbladder attack, he commented that since my husband wasn't with me this time he must not be too worried about me so I must not be too bad off. I thought he was joking until he said, "No. Seriously, he usually comes with you so his absence tells me he's not as worried as he was." (Huh? I'd just left the emergency room! So the severity of my condition is determined by the presence or absence of my husband? Whiskey-Tango-Foxtrot??) I had to explain that he works nights and came straight from work to the hospital and was so sleepy I forced him to go home, being in no shape to drive anywhere else!

    He didn't take me seriously when I called his office with concerns about upcoming gallbladder surgery having (very good) reason to think my immune system was not functioning well. His response was that after my gallbladder is out, my immune system will be better. (puh-LEEZE!) I ended up with post-operative sepsis that required a 7 day hospital stay on mega-antibiotics.

    With this kind of history with him, I wasn't sure what was going to take place at the visit. He came into the exam room and in a roundabout way asked what the reason was for the visit. I reminded him that this was a routine follow-up from months ago. Then I said that what I was really interested in though was my results for my XMRV test, and that I knew that he had them. He said I could have called and gotten them and I didn't have to wait to get them in person.

    I didn't know whether to laugh to cry. He said he was of the opinion that patients are entitled to know what's going on with their own bodies and doesn't prohibit his nurses from reporting results to his patients. Yes. He said that.

    I told him that he should tell that to the nurses because I tried as hard as I could to get the results over the phone the previous day but they said I would have to wait until today. He said, "Well, here it is. It's positive." and handed me the paper. My husband and I smiled at each other ear to ear.

    The doctor said, "This is really interesting." I said, "Yes it is. It's more than interesting, Doctor." I started crying a little and said, "This means that I finally know the name of this thing that has robbed me of 15 of the best years of my life!" He said, "Yeah. You're to be commended though. You did the research and figured out this thing. You proved to me that you have this retrovirus. That's really big."

    I said, "I'm bed-bound with a lap top. What would you be doing?" He nodded. I said, "It wasn't that difficult, really. There are a lot of very sick people just like me. They're all trying to find the answer to what's making them so sick, and they're some very smart people! There are also doctors, too, who are sick with this."

    He said, "Well, I'm going to call Dr. X [Infectious Disease} and get you in to see him" I said, "Okay, but he's probably going to tell you that there's no protocol for treating this yet, and that's true, there isn't. But that doesn't mean that there's no information that's potentially helpful in figuring out what the options are at this point. I have access to some good published studies and other material that he may not even know about yet, so please let him know that I can get him a lot more information."

    He said, "Well you know some of the medications for these things are pretty rough." I said that I knew that and that there are some very gravely ill people who have started on antiretrovirals, having really no choice, and there's detailed information on that, too.

    At this point my husband chimed in and said, "Yes, what did you say was the average life expectancy for people with this?" I knew he was not necessarily talking about XMRV statistics (but who knows what the XMRV status of those who have passed might have been?). He was talking about that familiar article/study on the average age of death of a group of CFS patients. I couldn't remember the age in the article (since this disease wiped out my ability to remember numbers) so I ball parked it and said, "about 58 or something", which made the doctor's eyebrows jump up to his hairline!

    He said, "You know, I'm in charge of all the CME for [this Mega-Medical-Machine]" I said, "Oh, I didn't know that." He said, "Yeah, want to do some lectures on fibromyalgia and I would like you to do the lectures on Chronic Fatigue Syndrome." I wasn't sure if he was kidding or not, and I didn't want to presume too much and really embarrass myself, so I just said, "Okay cool. I'll do it." or something like that. I was too shocked to say much else. Then he said he would let me know when the lectures would be. Then he said something about my having a lot of knowledge about medicine or something, but oh dear, if he only know how much time people with this disease spend over the years researching anything and everything they can find in an effort to feel just one iota better, or in some cases to survive just another day.

    I then moved on to a problem I'm having with all my joints giving me ridiculous pain lately, especially my hands and hips and I noticed he had a completely different attitude about my complaint! He looked at my hands, listened intently to what I was saying instead of just waiting for me to stop talking so he could tell me it's fibromyalgia or something. He agreed that it sounded like a real problem and ordered X-rays of my hands and hips.

    He said he was going to call Dr. X right then, before he sees his next patient and he said he would call me with the X-ray results. I kid you not. I'm not used to that I tell you. His whole countenance was transformed with one little word, "Positive". Of course, he did understand that it's a retrovirus, and he knows what a retrovirus is and he's read both the Mikovits paper and the Lo/Alter paper and a few other things, so he was 'primed' so to speak, but still, it's pretty cool to have cred with my doctor. I hope it lasts.

    There was a little more conversation about how interesting this is, and how significant it is to have something this new, blah blah blah, like I don't know that already, but it was more like he was excited and marveling to himself about the whole thing. Then he left and went into his office where, I assume, he picked up the phone. We'll see.

    When we left the office, I was pondering the change in the doctor's attitude and wondering if other doctors would also [finally] start treating me like a human being...a sick human being, not a hysterical whiner who was keeping them from seeing their real patients...and I realized that I had a song in my head that kept growing louder and louder until I finally had to start singing it.

    Of all the songs in the world that could have popped into my head right then, I have the one from the movie Pinocchio, when the fairy granted his wish and he got to become "A real boy" and Pinocchio sang, "Oh, I got no strings to hold me down, to make me fret, to make me frown. I had strings, but now I'm free, there are no strings on me!"

    I'm sure the battle isn't over yet, but at least something, anything is happening. For so LONG, day after day, week after week, month after month, year after year, precious little has happened in the world of CFS research. I have the highest hopes for the research to prove it all true, but even if this retrovirus turns out to be nothing or not THE thing, at least I had this moment, when for a little while, I got to be real.

    In peace,
    Stone
  12. Kati

    Kati Patient in training

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    Stone, thank you so much for writing this. This post deserves to be shared- with your consent- to Hillary and Mindy- and I wonder if you would mind if I passed it on to my own doctor for her to read, there are one or 2 lessons for her to learn in there. Let me know!!!
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks so much Stone! This is a hopeful story. I am so glad for you...and thank you for sharing it. So now we need to share all the treatment possibilities we can unearth. I am probably going to go to Belgium to see Dr. Kenny De Meirleirs. At least that is my plan now. I have an appointment at the end of January. He has had (I believe!) pretty good success treating XMRV + patients. He may informally publish his results soon.

    Meanwhile, anything you learn from your infectious disease doc, we'd love to hear. You could put him in touch with Dr. Jamie Dekhoff-Jones's doc so he wouldn't be inventing the wheel.

    Best,
    Sushi
  14. citybug

    citybug Senior Member

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    I was waiting and waiting for the serology test, then had to take some antibiotics. Waited the 3 weeks and now have to do dental work. Did anyone come out positive on serology that had taken anything within 3 weeks?
  15. Jemal

    Jemal Senior Member

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    Thanks for sharing your story Stone. It gives us all hope :D
  16. Francelle

    Francelle Senior Member

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    What a moving and articulate piece of writing Stone!

    Don't we all dream of such a response from our otherwise 'arms length' doctors.
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Reminder, when you go to do the lectures, tell them you must do it sitting down.

    Tina
  18. Stone

    Stone Senior Member

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    Oh heavens! Thank you so much for reminding me to tell him that! Holy cow, what if I had forgotten (as I'm so prone to do)? You saved my cheese, Tina!

    Now that I think about it, I might actually need my wheelchair since it's probably a considerable distance from the parking lot to where ever this will be done, probably in one of the smaller auditoriums at the hospital (the 'Mother Ship'), at least that's where things like this used to be held when I worked there B.C.(Before CFS)

    Funny, I worked at that hospital for almost 9 years, and that's where I was when this thing mowed me down on September the 14th 1995 at about 2:10 PM. I haven't worked a day since.

    In fact, I think I might open my remarks with something like the above statement. That ought to get their attention, opening with something that informs them that I used to sit where they are sitting and attended CME lectures in (probably) that very same room, just like them...until a tidal wave hit me one day as I stood up from my desk and I simply collapsed to the floor. End of normal life.

    [And what a day that was; a coworker had to drive me home and on the way I found, to my horror and dismay, that I couldn't tell her how to get to my house and she had to stop and call someone for directions.]

    Anyway, thanks, Tina. Any other suggestions or reminders are most welcome and greatly appreciated. What would you say if you had this opportunity? Anyone?
  19. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    I wrote two "Introduce yourself" posts last week and my computer ate both of them before I got to submit them. I didn't have the mental or physical "oomph" to write it again. My story has some strange twists and turns not typical of CFS. Maybe I will be able to put it together again, but for right now, I had to turn to you guys and tell you my news before I've told anyone else except my husband (who also has CFS). Not expecting my XMRV/GRV test results for some time, I opened what I thought was a routine e-mail from the nurse at my doctor's office a few minutes ago. She gave me the result of another recent lab test and the result of my serology test---positive! At this moment, I am not quite sure how I feel :confused: It is completely amazing to think that my 19 year old daughter who has been sick for 7 years, my husband (sick 8 years) and I (sick 10 years) have hope of getting better. But it is sobering to think that my son and his wife and our other daughter, her husband and three toddlers may have a lifelong retrovirus that no one yet knows how to treat. It's a lot to think about. Because of the expense, I was tested first, so tomorrow we will be ordering more serology kits. My PCR-culture is still pending, but I don't see a need for everyone in the family to have that done. Antibodies aren't "contaminated", right?;)

    Thanks for being there everyone:thumbsup:
  20. Stone

    Stone Senior Member

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    Glad you know now :)

    :victory: Wow! What exciting news that you now have reason to hope for treatment, not just for yourself but for your family. This is wonderful. Let me be the first on the forums to congratulate you on your new hope for a bright future. May our hope not be for naught, and may reasonable and effective treatment become available soon.
    Be blessed and be whole,
    Stone

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