To test or not to test?

[Dainty]

I'm sorry if there's already a thread on this; searched a bit with no results.

What are all of your thoughts on your decision to get tested now, or to wait until testing is possibly more accurate, or possibly to do both? What has been your line of reasoning in your decision, or are you still deciding?

 

[HopingSince88]

Hello Dainty,

I am waiting for the antibody test to be released. My decision is based on the fact that I don't have concern for infecting anyone as I live alone and am not presently in a relationship. Also, I don't want to pay for the serum test, and be found negative, and then pay for the antibody test later, which I think most folks who test negative now will likely do. However, if the antibody test is not available sometime mid-year or so, I may re-think this decision.

Because I am 60 on Bell's scale, I think that my infection may not be active enough to pick up in the current test.

As folks here begin to report as positive, and they share with us information about their current symptoms and their initial onset, and if they also include their Bell#, it will be easier to consider spending the money for testing. If I see folks reporting that they are 50 or 60 on the scale and are testing positive, I may go for it sooner.

Hoping

 

[Katie]

Check out my blog, you'll find a late night ramble as I go over my decision. As I went yesterday for testing I'll spoil the ending for you

For me this is preliminary and I understand that fact. Hopefully it'll help sort out what XMRV is and help us get on to studies if my results come back positive. It's not an easy clear cut decision because so much is unknown but if you go into it with your eyes wide open that this could all be a complete bust or completely life changing and can deal with that paradox, then you'll be ok.

If you click on the number '5' next to blog entries on the left you can find my blog and my reasoning and how it went yesterday. I'll be posting my results (culture only) when they arrive. I won't be disappointed if they come back negative because I recon that I could fit one of Dr Kerr's subgroups for gene expression quite nicely so there's hope through that avenue also.

Katie

 

[fds66]

I'm going to wait until things are a bit more settled before testing. I want to see the results of some replication studies and to see the testing standardised more. I don't think that I could stand getting false negative result and having to wait for more testing to become avaialable to see if it's a real negative. I'd rather wait until the answer is more sure. Also, it doesn't make any difference to anything at the moment until someone can tell me what a positive result means. There is no treatment at the moment. It won't change anything I do at the moment even if I had a positive result today.

I have to say though that as the results are starting to come through I'm very impatient for all of this uncertainty to be cleared up so I can know for sure whether I have this thing or not and what that means for me. My logic tells me that I need to be patient and wait, my heart wants to know now.

 

[flybro]

I f I had loadsa money, I would get tested, if it was positive I would get my family tested, they I would buy the best treatments available.

If I didn't have family to consider, I would steal the money to get testedRetro wink , because I just want to know, and it benefits the community here to have more results coming in, the results are equally imortant wether negative or positive.

As it is I am depending on those that are getting tested and publishing there data here, to learn what may be relevant to my circumstances.

 

[CJB]

IMO:

1. Work that's being done on the blood supply should produce a reliable, FDA-approved (hopefully paid for by insurance) test in time.

2. It hasn't been proven that XMRV causes CFS.

3. No treatments have been developed.

I'm waiting.

 

[starryeyes]

I'm waiting because insurance might cover this test in the future. Also, I want the test to be standardized and to include the Antibody Test. I'll probably wait until they come up with treatments as well.

 

[sleepwalking]

I made the decision to get tested because I need to know if I'm contagious and because I am fighting my LTD Insurance company for denying my claim after 2 yrs. Also, [U]I want to know![/U] - don't you?

I put it on my credit card and I'll pay it off little by little.

Waiting for the results is just about killing me as it's making me so anxious. If I were positive it would explain so much. I also have this private fantasy of testing positive and taking the results and shoving it in the face of many doctors who I've gone to for help over the years......I'm sure many of you know what I'm talking about and can relate......

 

[Kati]

Sleepwalking, I am with you, I got tested last Thursday, awaiting for results now.

I did it knowing that it would not bring me treatments, answers and also knowing that Dr Bell, Klimas, Bateman were not recommending getting tested.

But I wanted to know.

And also I will put the results (hopefully positive) under my dr's nose, and asked for treatment when time comes.

So far I have heard:" You have post viral syndrome, there is no treatment"

Bulls**t I say, do your research and see what Dr Lerner, Montoya, Peterson, Klimas are doing.