I wonder what that means Stone? Speculating big time here! Does the doctor know how much vested interest you have in these results therefore a 'negative' may devastate you or is this likely to mean a positive and he needs to tell you in person?? I guess you've looked at every permutation of what this may mean.
Well, the doctor wasn't in yesterday afternoon but I would still have to say that he's clueless as to how important this is to me because when VIPDx reported my culture test some weeks back, which was negative, he didn't bother to call me and tell me.
It just so happened that when I was in to see his PA for a follow-up from a hospitalization for septicemia, I was watching him flip through my chart for something and I caught a glimpse of a paper that had 'VIPDx" on it. I said,
"Hey turn back to that! Oh my God! How long has that lab report been in there? I've been anxiously awaiting those results and have been carrying my phone around with me even to the bath room in case you called with them!"
The date on the fax was about 10 days prior! I was furious, but it wasn't in my own best interest to go 'John Q' on them or anything but I did calmly make it quite plain how that affected me, ya know, instead of taking hostages as I was strongly inclined to do.
I'm hopeful for a positive result today for several reasons. First, the incidence of false negatives is lower with the serology test, or so I'm told.
Second, when I called VIPDx yesterday to ask if my results had been faxed to my doctor, the nice young lady I spoke with told me the results had just been faxed a few minutes prior and she sounded very happy, almost thrilled. Now it could be that someone had just sent her flowers or she's just a really,
really happy person. I don't know, but something in her tone was encouraging to me and with a previous negative culture, I hadn't been hoping too highly for a positive serology.
Thirdly, when I called my doctor's office to confirm they had received the report, I asked if they could please tell me if it was positive or negative. The nurse was on the fence about telling me so I explained to her that I had been waiting over 9 weeks for these results and that this test was for a retrovirus 'like HIV'. The nurse said, "This isn't an HIV test" I said, "Right, it's for XMRV, a retrovirus like HIV". The nurse again said, "No, this is not HIV!" and again I replied, "Yes, I know. It's a new retrovirus. The third human retrovirus, the other two being HTLV and HIV." She again said, "But this isn't an HIV test". I said, calmly, "I know. It's very new. Most doctors haven't heard of it yet, but it
is a retrovirus and HIV is
also a retrovirus and they think might cause chronic fatigue syndrome and prostate cancer, so the results are very important to me. I'm under a good deal of stress not knowing and I would really appreciate it if you could just tell me if it's positive or negative so I can relax about it and I can discuss it with the doctor tomorrow. I'm not a well person and stress doesn't help at all. Is there perhaps another doctor who is able to give you permission to give me the results?" She put me on hold for about a month and then came back on the line and said she wasn't going to ask one of the other doctors because I haven't seen any of the other doctors and they would want to know all about me, so I would just have to wait until my appointment "so the doctor can go over it" with me.
So,
and again I'm inferring an awful lot here, this doesn't sound like the behavior of a nurse in possession of a negative retrovirus report to me. I've been a physician's office nurse before and in this situation I would have told the patient it was negative if it was negative unless of course the office policy was unusually strict and I don't think it is because they were considering telling me the results in the beginning.
The nurse has NO IDEA that I'm actually hoping for a positive, which to her would not make any sense at all. Therefore, if I had to guess, and I do have to guess, I would guess that it's positive. That said, it's never a good idea to draw conclusions with insufficient facts and I really don't have enough facts. I'll know my results for sure within 5 hours from now. Oy.
If it's negative, I will simply wait for a test to be developed that has a lower incidence of false negatives. If I have that test and it's negative, then well and good. I will accept it and move on to the next thing whatever that might be. We have to continually keep in mind that now our disease has attracted the attention of some heavy-hitting scientists and XMRV or no XMRV,
things are never going to be the same for us and thats a VERY good thing, isn't it?
This is a time of great hope, the kind of hope we've never had before. This is a luxury for which millions of horribly sick people have waited for a long time, many have waited for decades.
That's saying something. Just a year ago, we had precious little to hang on to. Now we have much more, even for those who don't happen to test positive for this particular bug (and it's associates). All that means is that there's probably some other cause that will most likely be found soon, now that we are in the scientific spotlight. Hang in there everybody. The SOS call has been picked up and ships are on the way.
Best of the best to one and all,
Stone