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XMRV results
- Thread starter Patient 2
- Start date
C
cold_taste_of_tears
Guest
Hi, thanks for the results are you dissapointed or pleased?
Where did you get tested?
Where did you get tested?
C
cmam
Guest
How long did it take to get your results? It was supposed to be 2 weeks (by last Friday). I talked to the lab on Tues and they said no later than this Monday. They said they would fax to my drs office. I called today and they haven't gotten anything.
I'm really curious.
I'm really curious.
Thanks
Thanks for letting us know.
I also think XMRV makes sense to me, I can see where it fits into mine and my family history. So I find it hard to imagine that I will be negative, but I hope I am.
I have no idea how long it will take before I get tested.
I'm in the UK and will prob have to wait for the NHS to run or at least fund these tests.
Anyone any ideas on how long this might be?
Thanks for letting us know.
I also think XMRV makes sense to me, I can see where it fits into mine and my family history. So I find it hard to imagine that I will be negative, but I hope I am.
I have no idea how long it will take before I get tested.
I'm in the UK and will prob have to wait for the NHS to run or at least fund these tests.
Anyone any ideas on how long this might be?
I
imready
Guest
Test results
Would you consider yourself a pure CFS/ME patient or do you additional problems with fibromyalgia, lyme, or had a severe trauma etc... I'm just curious because I'm waiting for my results to come back from VIPDX and I strongly believe that if I test negative then XMRV cannot be the cause of CFS/ME. My reasoning behind this is that I consider myself to have the classic symptoms of CFS/ME. I don't have fibromyalgia, lyme etc...
I didn't see a negative vote in the XMRV poll, are you going to add your results to the poll?
Would you consider yourself a pure CFS/ME patient or do you additional problems with fibromyalgia, lyme, or had a severe trauma etc... I'm just curious because I'm waiting for my results to come back from VIPDX and I strongly believe that if I test negative then XMRV cannot be the cause of CFS/ME. My reasoning behind this is that I consider myself to have the classic symptoms of CFS/ME. I don't have fibromyalgia, lyme etc...
I didn't see a negative vote in the XMRV poll, are you going to add your results to the poll?
dipic
Senior Member
- Messages
- 215
Just curious, if it isn't rude to ask, why a lot of you are expressing that you would prefer a negative result. Personally, if the XMRV thing pans out and turns out to be the caustive agent of 90-something percent (or whatever) of ME/CFS cases, I would be crushed if I found out that I was negative for the virus.
I've already gone through so much pain and suffering and am stuck in such a bad place that finding out a retrovirus is the cause of it all could only be a relief. I can't imagine being stuck in the (presumed) minority where there is no answer.
I've already gone through so much pain and suffering and am stuck in such a bad place that finding out a retrovirus is the cause of it all could only be a relief. I can't imagine being stuck in the (presumed) minority where there is no answer.
Sushi
Moderation Resource Albuquerque
- Messages
- 19,920
- Location
- Albuquerque
I was tested with autonomic response testing and direct resonance testing against a vial of the stuff. I tested very positive for an active infection.
I know this result isn't suitable for the poll, but I have had very good results with this doc and he is prepared to treat it with natural anti-retrovirals, so I am going for it. Don't see that there is anything to lose, and it will be quite a while before other options are available.
Sushi
I know this result isn't suitable for the poll, but I have had very good results with this doc and he is prepared to treat it with natural anti-retrovirals, so I am going for it. Don't see that there is anything to lose, and it will be quite a while before other options are available.
Sushi
mojoey
Senior Member
- Messages
- 1,213
Personally
after much deliberation I would also prefer to be negative because of the implications for treatment and possibly having to take a cocktail of drugs for life. However, my situation is different from many because I believe my current treatment can lead to a recovery with a nagging retrovirus being a possible snag in that equation. Like imready, I also believe that if I were negative, this can't be the cause because of the classic presentation of symptoms.
If I didn't believe my current treatment could resolve a retrovirus-free disease and lead to remission in the ampligen sense from a retrovirus-involved disease, I would probably want to be positive.
Emotions will run high due to polar-opposite reactions to these testing results and other XMRV-related developments. I hope we'll continue to be open-minded about this and not take others' reactions personally.
after much deliberation I would also prefer to be negative because of the implications for treatment and possibly having to take a cocktail of drugs for life. However, my situation is different from many because I believe my current treatment can lead to a recovery with a nagging retrovirus being a possible snag in that equation. Like imready, I also believe that if I were negative, this can't be the cause because of the classic presentation of symptoms.
If I didn't believe my current treatment could resolve a retrovirus-free disease and lead to remission in the ampligen sense from a retrovirus-involved disease, I would probably want to be positive.
Emotions will run high due to polar-opposite reactions to these testing results and other XMRV-related developments. I hope we'll continue to be open-minded about this and not take others' reactions personally.
dipic
Senior Member
- Messages
- 215
That makes a lot of sense. Thanks for the explanation.
I'm about 3 years into this illness and I've only gotten worse to the point of being bedridden with nothing I've tried helping even marginally, so honestly, I feel any answer would be positive, personally.
Er, yes, I do.
Sorry if I came off as insensitive. I was genuinely curious, and the answers I've got so far make a lot of sense. Just trying to see understand others' perspective is all.
G
George
Guest
Patient 2
Did you do the PCR and the antibody test or just the one or other??
You can test negative for live active virus and still have the antibodies which would represent a latent but not currently active virus.
I figure if all things go well doing what I'm doing I'll be relatively healthy right about the time they come out with a treatment program for the masses. (grin)
Did you do the PCR and the antibody test or just the one or other??
You can test negative for live active virus and still have the antibodies which would represent a latent but not currently active virus.
I figure if all things go well doing what I'm doing I'll be relatively healthy right about the time they come out with a treatment program for the masses. (grin)
Here's a slightly modified version of a post I made on a recent NYT blog:
I suspect that the next several months are going to be interesting ...
I hear in Dr. Klimas comments (and in the comments of many other researchers over the years) that one of the real problems with a CFS diagnosis and research is that of statistical noise, much of which is caused by competing diagnostic criteria.
I know for myself, there is some anxiety that an XMRV (or other) link will be found, a test and treatment will be developed and that I will test negative even though my health issues began with a severe infectious episode (enlarged nodes, sever fever, etc.), and I have numerous classic co-infections (as well as a litany of other classic CFS findings).
Being involved in research, I know that regardless of whether or not I eventually fit into the first large group of patients to be diagnosed with a blood test, a finding such as a causal link to CFS helps everyone by getting rid of at least some substantial portion of the noise in the CFS data. When this happens, those left out of the newly defined group will start to look a bit more homogeneous and they will therefore be relatively easier to study, understand and to help.
I think of myself as being insufficiently diagnosed more than I do a CFS patient. I have more than enough documented health problems but still no global explanation for everything and I hate perpetuating the CDC's notion of 'CFS.' This so much more than fatigue.
Regardless of whether I am found to be with those lucky enough to finally have an answer, I will have mixed feelings because I know that there will be some who (I?) must continue without knowing. How will I react if, on that day, all that I am left with is the knowledge that the path to my answer is still unknown but now a bit less obscure?
Above all, I would hope that CFS patients, more than most, can appreciate how difficult it is to not know and to be civil towards each other along the way.
I suspect that the next several months are going to be interesting ...
I hear in Dr. Klimas comments (and in the comments of many other researchers over the years) that one of the real problems with a CFS diagnosis and research is that of statistical noise, much of which is caused by competing diagnostic criteria.
I know for myself, there is some anxiety that an XMRV (or other) link will be found, a test and treatment will be developed and that I will test negative even though my health issues began with a severe infectious episode (enlarged nodes, sever fever, etc.), and I have numerous classic co-infections (as well as a litany of other classic CFS findings).
Being involved in research, I know that regardless of whether or not I eventually fit into the first large group of patients to be diagnosed with a blood test, a finding such as a causal link to CFS helps everyone by getting rid of at least some substantial portion of the noise in the CFS data. When this happens, those left out of the newly defined group will start to look a bit more homogeneous and they will therefore be relatively easier to study, understand and to help.
I think of myself as being insufficiently diagnosed more than I do a CFS patient. I have more than enough documented health problems but still no global explanation for everything and I hate perpetuating the CDC's notion of 'CFS.' This so much more than fatigue.
Regardless of whether I am found to be with those lucky enough to finally have an answer, I will have mixed feelings because I know that there will be some who (I?) must continue without knowing. How will I react if, on that day, all that I am left with is the knowledge that the path to my answer is still unknown but now a bit less obscure?
Above all, I would hope that CFS patients, more than most, can appreciate how difficult it is to not know and to be civil towards each other along the way.
I want to be negative
I want a nicer explanation, I don't want to tell my kids they may have this.
1 autistic daughter, 1 daughter with CFS symptoms and her own daughter.
I want something easy, a quick fix, and XMRV dose'nt look like it fits the bill for either of those hopes.
I want a nicer explanation, I don't want to tell my kids they may have this.
1 autistic daughter, 1 daughter with CFS symptoms and her own daughter.
I want something easy, a quick fix, and XMRV dose'nt look like it fits the bill for either of those hopes.
rebecca1995
Apple, anyone?
- Messages
- 380
- Location
- Northeastern US
me too...
dipic...I share your sentiments. I've gotten gradually worse over the 15.5 years of illness and am now essentially bedbound. Two years of aggressive antibiotic treatment for Lyme failed. I would much prefer to be positive for XMRV because it would open up new treatment options for me. But I'm trying to prepare myself mentally for a negative result so I'm not utterly devastated.
As Joey said, I think it's important to be supportive of one another as the results come in. Honestly, I've never seen such solidarity/togetherness in the ME/CFS community as I have in the nearly 8 weeks since the Science article came out. I hope we can maintain this sense of group identity and support no matter how our XMRV tests fall.
dipic...I share your sentiments. I've gotten gradually worse over the 15.5 years of illness and am now essentially bedbound. Two years of aggressive antibiotic treatment for Lyme failed. I would much prefer to be positive for XMRV because it would open up new treatment options for me. But I'm trying to prepare myself mentally for a negative result so I'm not utterly devastated.
As Joey said, I think it's important to be supportive of one another as the results come in. Honestly, I've never seen such solidarity/togetherness in the ME/CFS community as I have in the nearly 8 weeks since the Science article came out. I hope we can maintain this sense of group identity and support no matter how our XMRV tests fall.
dipic
Senior Member
- Messages
- 215
I guess I've just already prepared myself for the worst, and figure that (whatever it is) is what it is.
I'd rather find out that the cause is a retrovirus that could be possibly treated successfully then be stuck with bad science, and continue to be neglected by the medical community and treated apathy or disdain from everyone else as years of my life slip away...
I, however, do not have the fear of having possibly passed this off to loved ones or having a treatment regimen that is working for me I can't relate but can sympathize and (now) understand why others might feel differently.
Again, I apologize if I initially came off as insensitive. =/
Thanks, Levi.
I'd rather find out that the cause is a retrovirus that could be possibly treated successfully then be stuck with bad science, and continue to be neglected by the medical community and treated apathy or disdain from everyone else as years of my life slip away...
I, however, do not have the fear of having possibly passed this off to loved ones or having a treatment regimen that is working for me I can't relate but can sympathize and (now) understand why others might feel differently.
Again, I apologize if I initially came off as insensitive. =/
Thanks, Levi.
imready
I don't have fibro or lyme. But I don't know if I am pure CFS/ME patient either. I do have a lot of symptoms on a pretty severe scale. If you are interested in reading my background history, I have it in the New Day group. I am currently undergoing neural therapy with Mike's doc.
I just voted on a poll
I don't have fibro or lyme. But I don't know if I am pure CFS/ME patient either. I do have a lot of symptoms on a pretty severe scale. If you are interested in reading my background history, I have it in the New Day group. I am currently undergoing neural therapy with Mike's doc.
I just voted on a poll
I
imready
Guest
Patient 2
What is the new day group?
What is the new day group?
K
_Kim_
Guest
There is a sub-forum here that can be accessed via the Community tab>Social Groups>New Day Group