The Waiting Game

[JAXintheCity]

Hi Everybody!

Well, I've bit the bullet and ordered my test from VIP. In addition, I have a doctor's sign off! So, as soon as I get the packet -- I just need to find a lab and off we go!

I thought I would start a thread for those of us in the process of garnering, or waiting for XMRV test results. We can lend mutual support and laughter in the 8+ weeks!

So, where are you at in the process and how are you feeling? Me -- nervous. I have lots of concerns about testing. If I test positive -- how will it affect my family, the decision to have children, my career, or the ability to be covered by future insurance (ie., is this a pre-existing condition)? If I test negative -- do I still have CFS? Will I just feel this horrible forever with no hope for treatment?

Lots going on in my brain...but what's that saying, "better the devil known..."

JAX

 

[FunkOdyssey]

I'm waiting for mine too. VIP received my blood samples on Wednesday (Sep 22) and told me it will take approximately six weeks for both the culture and serology tests. Why does it take so long? Do they have a huge backlog or does it really take that long for them to run the tests?

If the tests really take that long from start to finish, doesn't the blood spoil during the test? How is the sample still good after six weeks?

Hopefully someone can clear up this mystery for me.

 

[JAXintheCity]

I'm waiting for mine too. VIP received my blood samples on Wednesday (Sep 22) and told me it will take approximately six weeks for both the culture and serology tests. Why does it take so long? Do they have a huge backlog or does it really take that long for them to run the tests?

If the tests really take that long from start to finish, doesn't the blood spoil during the test? How is the sample still good after six weeks?

Hopefully someone can clear up this mystery for me.

I'm sorry ahead of time if this post makes no sense...bad day...again, again, again.

Anyways, I feel you! I think we all just want to make sure our test is done right, and those EXACT SAME thoughts have completely run through my mind! (IE., my blood is going to sit there for 8 WEEKS!!! But, don't you need the sample in 24 hours?!?) I'm sure they know how important each of these tests are to each ME/CFS patient...so I'm sure it's just us being nervous., and they are being SUPER cautious. But, after YEARS of tests coming back as "everything's fine" -- can anyone blame us!

I'm assuming its a huge backlog and a difficult test to do. I wonder how many requests and samples they receive/get. I know that when I tried to fax an information slip for a test kit yesterday -- I got a busy signal for several attempts. So, they must be busy!

What did someone say at the last XMRV conference -- there are 17,000,000 CFS patients in the world, and every single one of them has contacted Judy Mitkovitz! The numbers might be similar for VIP!

Welcome to the waiting game, btw! And...good luck?!?

 

[illsince1977]

I just got my results from a WPI study. Blood was drawn November 2009, but only recently processed. So they do have some way of preserving your sample properly, apparently.

I think they must infect LnCap cells and grow that in culture from something I read somewhere. I know nothing of these techniques, but maybe that means it is not your blood, per se that sits around in the culture.

I was positive by culture even though my tests, too, are always normal. So take heart!

 

[helen41]

my test kit is sitting in my living room, a huge presence in my life. It arrived 2 days ago. I don't have the order from the Dr yet, but certainly all the "what if's" are running through my mind. My biggest fear is of the negative- I think I'll celebrate if it's positive

 

[illsince1977]

my test kit is sitting in my living room, a huge presence in my life. It arrived 2 days ago. I don't have the order from the Dr yet, but certainly all the "what if's" are running through my mind. My biggest fear is of the negative- I think I'll celebrate if it's positive

I was sharing my thoughts about being positive on another thread, if you'dlike to read it.
http://www.forums.aboutmecfs.org/sh...t-no-results.-Shall-I-get-VIPdx-test-if-I-can

 

[Sushi]

Hey Everybody,

As Sergio posted on another thread, (http://www.forums.aboutmecfs.org/sh...ve-for-Spain-)&p=126109&viewfull=1#post126109) he got his results in 3 weeks. I had sent my test in at the same time, but no results yet. I called today and they said they faxed them to my doctor on Sept 19th--she says she didn't get them! :Retro mad:

VIP said they would fax them again at the end of their work day (short staffed!) which is a couple hours after my doc's office closes. :tear:

So I am still in the waiting game.

But the good news is they are churning out results--faster than reported. Course we sent our kits in before the Alter--Lo article, and that might have made it faster.

Sushi

 

[gbmannc]

Just had my doctor sign the form and sent out the kit this afternoon. I'm just so scared and conflicted on how to feel. I don't want an incurable retrovirus, but I desperately want to know what has destroyed my life.

 

[Tia]

I'm so lealous of you for being able to get tested NOW. I'm waiting for the test to get public so I can test myself at the local hospital and cheap to.

 

[JAXintheCity]

Well, got the blood drawn today. Actually, I was really nervous about having to "explain" to people what needed to be done, but I used Quest Diagnostics and they were fabulous! The nurse was SO NICE and actually packed the package for me and everything! (She actually said she draws blood for outside labs all the time.) They centrifuged the one red tube that needed to be done (she actually did it longer than 10 minutes because she said otherwise it doesn't separate right) and then I found a Fed Ex and they promised to have it delivered tomorrow. I am going to email VIP to double check they get it though.

It was a LOT of running around for someone with CFS, but thankfully, it's over...and now I just have to wait 3-8 weeks for results. Now, back to bed!

 

[Sushi]

Hey all you people out there "waiting"--

My doc has had my results since MONDAY and I only got them today--the office wouldn't pick up the phone--just left me a message that they had them.


POSITIVE! :victory: :Retro smile:by culture, serology pending .

But positive is positive. Since my friend who sent his sample the same day got the same results--positive by culture, serology pending, it makes me wonder if they are trying to tweak the serology test--maybe to pick up anti-bodies to the other MRL'S??

Our university lab where we had blood drawn also said they needed to spin the one vial more than 10 minutes. So maybe it is good to make sure and eyeball the vial to make sure it is properly separated.

So even though I know for sure that I am hosting a whole mess of creepy-crawlies who may be creeping and crawling into places I'd rather keep pristine, I am HAPPY! After decades of chasing ghost illnesses I may be honing into a target culprit--just maybe.

And now I can be a pariah when I choose to be. :tear:

Sushi

 

[gbmannc]

Hey all you people out there "waiting"--

My doc has had my results since MONDAY and I only got them today--the office wouldn't pick up the phone--just left me a message that they had them.


POSITIVE! :victory: :Retro smile:by culture, serology pending .

But positive is positive. Since my friend who sent his sample the same day got the same results--positive by culture, serology pending, it makes me wonder if they are trying to tweak the serology test--maybe to pick up anti-bodies to the other MRL'S??

Our university lab where we had blood drawn also said they needed to spin the one vial more than 10 minutes. So maybe it is good to make sure and eyeball the vial to make sure it is properly separated.

So even though I know for sure that I am hosting a whole mess of creepy-crawlies who may be creeping and crawling into places I'd rather keep pristine, I am HAPPY! After decades of chasing ghost illnesses I may be honing into a target culprit--just maybe.

And now I can be a pariah when I choose to be. :tear:

Sushi

So glad to here you have finally gotten somewhat conclusive results. God knows we have all been trying for years for something conclusively wrong with us . I still have a long few weeks before I receive my results.

If you don't mind me asking, what was you and your friends onset like and primary symptoms? Also how long ago did you send in your samples? Thanks in advance. Just trying to see if there is any pattern for positive people.

My onset was the seemingly less common gradual onset, although with plenty of endocrine and immune system abnormalities that are often seen with cfs patients . I'm just so worried if this isn't IT that my hope for finding something wrong dwindles dramatically. Its going to be a couple rough weeks of internal conflict for me... It does help to find people who are in the EXACT same situation I am. Misery loves company I guess. :Retro smile:

 

[Sushi]

If you don't mind me asking, what was you and your friends onset like and primary symptoms? Also how long ago did you send in your samples? Thanks in advance. Just trying to see if there is any pattern for positive people.

My onset was the seemingly less common gradual onset, although with plenty of endocrine and immune system abnormalities that are often seen with cfs patients . I'm just so worried if this isn't IT that my hope for finding something wrong dwindles dramatically. Its going to be a couple rough weeks of internal conflict for me... It does help to find people who are in the EXACT same situation I am. Misery loves company I guess. :Retro smile:

Hi,

We sent our samples on August 30th. Our docs got the results on the 19th (mine) & 20th (my friend).

I was gradual onset--really most of my life with lots of ups and downs--and a really bad period for the last 5 years after top of the scale personal stresses (death and destruction all around). I am not aware of it being a viral onset, though I am carrying a bunch of viruses. I did have a lot of toxic and also vaccine exposure though.

My friend is not aware of a viral onset either but can pinpoint very bad toxic exposure. His onset was sudden, however, and some "good" treatments like chelation tipped him over the edge into 5 years of being bedridden.

Our symptoms differ: his is mostly radical fatigue, terrible digestion, headaches, PEM. I have a lot of OI, fatigue and PEM, but I recover faster. I have also done a lot of well-considered detox--through alternate therapies. We have both worked with a lot with Rich's methylation protocol--with initial improvement and then plateau-ing.

We both have a lot of screwy lab result that show that something is seriously off-kilter.

Hope this helps a bit. :tongue:

One interesting thing (to us anyway) is that we are not of the sudden viral onset subset--yet we are both positive.

Where we got this critter is anyone's guess???? :worried:

Sushi

 

[JAXintheCity]

Congrats Sushi! Though, it's wierd to congratulate someone for having a retro-virus! LOL...but I think we all understand your relief.

I also had to have my blood spun longer for 10-minutes. (The phlebologist said that usually it takes about 20 minutes for the blood to separate). So, I agree people should check! Then again, maybe us CFS-ers have 'slow blood!' LOL...would it surprise you?!?

I'm also a gradual onset. I can't pinpoint one really bad flu that just got worse... I just started getting sick...and sicker...and sicker. The sign for me that something was wrong was I started falling asleep in class. And, I am NOT that student who falls asleep in class... In addition, I was having stomache pain, extreme weight loss, night sweats, swollen lymphs, hair falling out. I remember seeing a doctor's report on me later and it wrote that "the patient appeared dishevelled." :/ I wound up becoming a part-time student, and then eventually bed bound for several months. I also remember the horrible feeling of "sleepy eyes" constantly. Thank God, no more sleepy eyes -- just body fatigue.

For the last 10+ years, I have had reactivated EBV, HHV6-A, M. Pneumonia and Candida. When I was first diagnosed my HHV6A was 1:1280, which is about 8x the normal level. I'm hopinh XMRV will shed some light on all these 'opportunistic infections' I carry... but I guess I have to wait 8 weeks to find out. Did you test positive for any other reactivated viruses?

In addition to the XMRV test, I went ahead and got the immune profile / herpes profile / m. pneumonia and lyme tests. I figured I haven't had a good check up since 2007 and that it was worth "knowing" if my reactivated diseases have gotten any better (I doubt it) ... or if I have anything new. Also, I'm determined to get some proper care! Though, it's gonna cost me an arm & a leg!

 

[Sushi]

Hi JAX,

Yes, I have a bunch of reactivated viruses (very high EPB), P. Pneumonia, etc. Haven't had a full viral profile. Good idea to get the immune profile too--it looks like a good test. I was just counting $$ when I decided not to get it.

Yes, more $$ will have to be spent, but I need to be very selective and where to spend them.

Strange the different times it is taking to get results from VIP. I sent my blood on Aug 30th--maybe just got in with the last bunch they tested.

Waiting is no fun!

Sushi

 

[*GG*]

Hey all you people out there "waiting"--

My doc has had my results since MONDAY and I only got them today--the office wouldn't pick up the phone--just left me a message that they had them.


POSITIVE! :victory: :Retro smile:by culture, serology pending .

But positive is positive. Since my friend who sent his sample the same day got the same results--positive by culture, serology pending, it makes me wonder if they are trying to tweak the serology test--maybe to pick up anti-bodies to the other MRL'S??

Our university lab where we had blood drawn also said they needed to spin the one vial more than 10 minutes. So maybe it is good to make sure and eyeball the vial to make sure it is properly separated.

So even though I know for sure that I am hosting a whole mess of creepy-crawlies who may be creeping and crawling into places I'd rather keep pristine, I am HAPPY! After decades of chasing ghost illnesses I may be honing into a target culprit--just maybe.

And now I can be a pariah when I choose to be. :tear:

Sushi

Perhaps you do not have the answer for this, so anyone can jump in. What is the difference with Serology and Culture, seem the same to me, but obviously different.

So, Sushi, you tested positive for XMRV only? How about the MLVs?

Thanks!

GG

 

[gbmannc]

Perhaps you do not have the answer for this, so anyone can jump in. What is the difference with Serology and Culture, seem the same to me, but obviously different.

So, Sushi, you tested positive for XMRV only? How about the MLVs?

Thanks!

GG

Culture is taking your blood and growing the virus for detection. Serology is checking the blood for antibodies to the virus, not the virus itself. At the moment a positive serology result does not differentiate between XMRV or the other mlvs.

 

[Sushi]

So, Sushi, you tested positive for XMRV only? How about the MLVs?

Thanks!

GG

I see in their website that the tests will detect "all known human MLV viruses," but the results don't differentiate between them--they just says XMRV Viral Culture DNA detection, qual. Positive, and XMRV Serum Antibody detection Pending.

It is possible to be positive by culture but for them not to find antibodies. As I understand it, the culture test uses your lymphocytes to try to infect a cell line that is prone to XMRV infection. If your lymphocytes do that, you are positive by culture.

It will be interesting to see who is positive by serology and not by culture.

Sushi

 

[*GG*]

I see in their website that the tests will detect "all known human MLV viruses," but the results don't differentiate between them--they just says XMRV Viral Culture DNA detection, qual. Positive, and XMRV Serum Antibody detection Pending.

It is possible to be positive by culture but for them not to find antibodies. As I understand it, the culture test uses your lymphocytes to try to infect a cell line that is prone to XMRV infection. If your lymphocytes do that, you are positive by culture.

It will be interesting to see who is positive by serology and not by culture.

Sushi

I suppose, what will being Positve by Serology and not by Culture indicate?

 

[*GG*]

Culture is taking your blood and growing the virus for detection. Serology is checking the blood for antibodies to the virus, not the virus itself. At the moment a positive serology result does not differentiate between XMRV or the other mlvs.

Thanks, that seems to make sense, your blood is Serum, therefore Serology is testing of what is in your blood.