Discussion in 'XMRV Testing, Treatment and Transmission' started by Stone, Oct 18, 2010.
awwww poor stone
ive been there...
We are with you either way. Just hoping.....and hoping for you...
Okay everybody, I'm back from the doctor and the test was POSITIVE!
I was instantly credible with my doctor. So credible in fact that he said, "You know I'm in charge of all the CME classes here (a health care machine that employs over 4000 people) and I would like to do some classes on Fibromyalgia and I would like to hear you talk on Chronic Fatigue Syndrome" I said, "Okay, that would be cool"
So basically he's going to refer me to an Infectious Disease doctor to sort out what to do next. I told him that no protocol exists yet for treatment of this thing but perhaps soon. There's more to tell but I'm on a borrowed computer right now. I'm not at home but will be later so, "Film at eleven
Take care and see y'all later. Thanks everyone for pulling for me, praying for me and sending positive thoughts my way! Finally a good break!
OMG, OMG, OMG!!!!!!! That's so awesome! You have your very own retrovirus and if you weren't alcohol intolerant (just guessing, big grins) I would say break out the champagne and party!!!!!!!! I am so happy for you and thanks for being one of the pioneers for the rest of us. !!!!
I'm new here but there are three of us at our house who are excited for you! I know it sounds a bit strange, but congratulations!
I have to admit the suspense was killing me too. How very cool to have the opportunity to do CME on CFS!
Wishing you the best on the journey you've begun.
Yes, it's very strange that we are excited for people who are infected with a retrovirus, but I can't help and feel excitement as well with each person that is found positive for XMRV. This thing can't grow large enough... the larger the better, bring on the funds and treatment!
Still doubting if I should get tested at this time... getting a positive result would certainly be of use the next time someone says to me: "Yes, I feel tired sometimes as well." Grr!
Also a bit scared... a positive result might mean I have been infecting people.
Congratulations Stone!!! I am also a culture negative awaiting for serology and you make me hopeful that I won't be left behind or worst, being associated to the CDC Wichita cohort
I am glad your doctor takes you seriously, I don't think we are there yet here in my area.
When you catch your breath, please tell all--like did it just say positive or did it have numbers.
I called VIP today to see if they had faxed my results yet (I sent my sample Aug 30th)--it is not in the computer yet, so maybe that will tell others the kind of time line they are on.
Stone - glad its the result you wanted, hope its not too long before treatment is available for everyone testing +tive.
weee congrats stone!
Stone, cool for you, please keep us posted, that is impessive your doc sending you to infectious disease specialist, i found out positive not too long ago and didnt get any impressive offers like that yet. would love to hear if the specialist takes it seriously and what they want to try!!?
Well it's after 11:30 and we just got home from a necessary trip to our friends' house over a hour away. Once there I spent most of the visit lying on their very comfortable couch, but they are a most understanding couple and really get that I'm not well at all. I know I promised 'Film at eleven' but I'm rather tired as you might expect so I'll have to defer giving the details of my doctor visit until tomorrow. My legs are killing me tonight. I have extremely painful femoral neuropathy and riding in a vehicle really aggravates it so I need to get horizontal and rest. I will make every effort to relate the details of the doctor visit tomorrow when the nerves in my legs are (hopefully) quieter and I'm better able to concentrate. But I will say that it's absolutely wonderful to suddenly become interesting to my doctor. I'm loving it. He commended me for finding what was causing my CFS and proving it to him. My reply was, "I'm bed-bound with a laptop. What would you be doing?" Anyway, the first thing I did when I had a minute was text my sisters and my daughter with the news. All of them have CFS so they're more than interested in my results. I informed my mother but she didn't respond. Also, it's really hard not to feel responsible for my daughter's CFS/fibromyalgia and my son's disabling adult Attention Defecit Disorder but it's there none the less. Maybe my mother is feeling similar things. I guess we have some things to work through as do so many others.
So I'm glad to have a positive result. I'm glad to become instantly important or more accuragely, "real" to my doctor and I'm enjoying my new found credibility, and who wouldn't? More detail tomorrow. Gotta rest.
May God and men treat you with ultimate favor.
At your service,
I have an appointment with De Meirleir in Belgium at the end of November and was tested 8 weeks ago today so sent them a mail during the week to see when i might get the results. They replied saying i should get them this week sometime. Fingers crossed!
Also, i just got my Culture results back a couple of weeks ago... i did both test on the same day. It tested Positive... thank God! Does anyone know if its possible to get a False Positive though from Culture? I fairly sure you cant but it would put my mind at rest if i new for sure.
Great you know now Stone
I think the chances of getting a false positive are pretty darn slim. False negatives are another story.
if you have a positive culture, im pretty sure you have the virus!
i just wish i could get a positive result already!
Yes, it's my understanding that if you have the antibodies in your serum you have the disease. When you get an HIV test they test you for antibodies in your serum, and nobody questions whether or not you're HIV positive if the test is positive. A retrovirus is permanent. Once infected it never goes away (with the technology available today).
Just because you get a negative on the culture does not mean you don't have the XMRV (XAND) virus(es) and it says so right on the report, too! It just means that the amount of actual virus circulating in your blood at the moment the culture was drawn was not enough to be detected by that method OR you are not (have never been) infected.
@ Daffodil, I'm sorry I can't remember exactly, but you had a negative culture, right? Have you had an antibody (serology) test and if not do you plan to have one? Are you awaiting serology results? Of course, you don't have to share that information if you would rather not. I just couldn't remember. Today I've got on 'The Big Brown Helmet' (my personal term for brain fog)
Congrats again! Just one quick question: did the result just say positive or did it give numbers as in titers?
Thanks, still waiting....,
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