If you test XMRV-, but have M.E. with immune dysfunction.......what then?

TheMoonIsBlue

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I think this is just me worrying!

For those of us who have classic M.E./CFS (I fit Canadian Criteria)

And have obvious problems with our immune systems because of chronic infections we can't eradicate

Me: EBV EA positive 6+ years even after over a year of antiviral treatment, IGG's through the roof
HHV-6a positive (I think I went negative once over the course of treatment, haven't had it checked recently)
Coxsackie B4 positive

Severe PEM, Severe sleep problems, No stage 3/4 sleep, concentration memory impairment, moderate-to severe exhaustion (depends on the day and many factors) low growth hormone, trouble standing for long or walking very far, etc.,

Do you think the WPI is going to have anything to offer us?

I hope I have a retrovirus, I hope I have a retrovirus, I hope I have a retrovirus (Dorothy in "OZ" only had to repeat "there's no place like home" 3 times and wish granted...!)

If this wish isn't granted, will there still be someone at WPI to figure out what is happening to my immune system and my brain to be causing everything?

P.S.I haven't been tested yet, I will in the future

Actually, I really don't Care WHAT I HAVE.........as long as it can be treated and I can have a better quality of life. Like everyone, I just want a better quality of life.....whatever I have, I have........
 

leaves

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I hope I have a retrovirus, I hope I have a retrovirus, I hope I have a retrovirus (Dorothy in "OZ" only had to repeat there's no place like hope 3 times a wish granted...!)
heheh you can have mine if you insist :)
 

TheMoonIsBlue

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Hey Leaves!

Well, If I already feel THIS HORRIBLE all the time without a retrovirus..........then no thanks! I don't think piling on a retrovirus on top of my other infections and whatever the H is going on is gonna help me too much.

But you're very sweet to offer :)

Seriously though....maybe it will take multiple blood tests, tissue tests, etc to find out what retorviruses and other viruses we have. I'm still amazed by that story about the woman (and I think a man too?) who completely recovered on Vistide.

I hope WPI will accept us one and all, XMRV+ or not........and then again many of us may think we are XMRV/MLV- walking in the door and through more testing, find out we have them afterall.

Ughhhhh..........It's been almost ONE YEAR since SCIENCE broke the XMRV news. Something good happen nowwwwwwwww!
 
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Ughhhhh..........It's been almost ONE YEAR since SCIENCE broke the XMRV news. Something good happen nowwwwwwwww!
I agree with this. I am tired and need something to happen now. I don't know how I can continue on with this unless I can start treatment. It has been too long.
 

Kati

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Hi Moon, I am also negative, and keep hoping to turn out positive as like you don't want to be left behind.

I think it is still early in the game of the testings, the scientists haven't figured out the reservoirs, or even a reliable test yet. Remember that Judy M and all. tested patients 4 different ways- VIP tested one way, now 2.

It's hard to say we have to be patient. I just sent out my consent to test for serology- I don't know how long it will be but say, 1 month and will phone them?

If it's still negative, I will retest, and perhaps even (gasp) give the virus a little help with hormones (morning after pill?, hydrocortisone, if available?)

If any doctor is reading this, just skip to the next post :D

I also fit the canadian consensus definition, just tested positive for Coxsackie B2 and B6 and Parvovirus, EBV and HHV-6 (low titers for both), diagnosed with POTS and spend a solid 20-22 hours reclining. The January culture test was negative.

I also have hopes that Judy M will take on a study on XMRV negative- and ART trial, perhaps Ampligen.


Take good care and don't give up. You are not alone.
 

TheMoonIsBlue

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Hello!

I'm just really worried. If XMRV/MLV's become "IT" for CFS......what the heck will happen to me? I also fit the CCC and have all these viruses....seen CFS specialist.....UGH. I know that if I test negative, I WILL test again. I just don't want to get negative test and have some doctor be like "Well, we tried, what do you want to do next?" I feel like..........I won't be able to handle a doctor treating this so lightly when my emotions are so overwrought like everyone elses. This isn't a small thing for me or anyone........I also want all the comprehensive immune system tests they have. Something is wrong with me. I really want to go to the WPI (who doesn't?).

I think I would be Ok If I got negative test and the doctor understand, negative doesn't necessarily mean negative...you know? And there are other MLV's....and maybe tissue testing is even needed.

I just don't want to be dismissed.

I also worry about the lab I use to have my blood drawn doing something wrong.....not having it sent overnight......etc........Yeah, I'm freaking out about everything and every possibility I know.

I feel overwrought after having hopes raised and dashed again and again over and over again and being at the mercy of.........LIFE, SCIENCE, DOCTORS,BIOLOGY, EGOS,MONEY, and CHANCE.
 

Sushi

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Hey, TheMoonIsBlue,

I had some of the same worries about the lab that draws the blood screwing up (they do sometimes), it not REALLY getting sent overnight etc. Here is what a friend and I did when we had our blood drawn: we waited at the lab and had them show us the kit with the blood properly processed (you can see that the one vial is spun), and then we took our kits and hightailed it to the central FedEx facility in our city and made sure it was all sent properly.

Then (we patients probably try the great patience of VIPdx) we emailed VIP and asked for a confirmation that our blood had arrived safely--it had. And now we wait....!!

Sushi
 

LJS

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I also wonder what external factors may affect the test. For example tempature range samples go through in shipment, length of time in transit, etc. I had a PICC line in when I did the test so I drew my own blood then drove it over to the main fedex hub a few hours before the plane left. My test came back positive.

I feel science has a long way to go on figuring out the basics of XMRV including how to properly test for it and what role it plays in CFS. So for those who are XMRV- I would not worry now.
 

TheMoonIsBlue

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SUSHI-
You mean you can actually leave with your own test kit, with the blood drawn and in vials? I thought blood was considered hazardous material and could not be taken out of the lab except by a lab technician, or the people who pick up the samples to take to be tested? You just had your blood drawn and packed the kit up and left the lab?

I don't know what to do- I really don't trust the lab to call fedex and have my samples picked up and sent overnight 100%. I'd rather call FedEx myself and sit there and wait for them to show up just to be sure.

Also, was there a tracking number on the lable? I thought someone said there was. You could write that # down and see if it was sent overnight.
 

heapsreal

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Maybe fit a sub set of cfs mono group like the ones that dr lerner has had some success treating.
I think this is just me worrying!

For those of us who have classic M.E./CFS (I fit Canadian Criteria)

And have obvious problems with our immune systems because of chronic infections we can't eradicate

Me: EBV EA positive 6+ years even after over a year of antiviral treatment, IGG's through the roof
HHV-6a positive (I think I went negative once over the course of treatment, haven't had it checked recently)
Coxsackie B4 positive

Severe PEM, Severe sleep problems, No stage 3/4 sleep, concentration memory impairment, moderate-to severe exhaustion (depends on the day and many factors) low growth hormone, trouble standing for long or walking very far, etc.,

Do you think the WPI is going to have anything to offer us?

I hope I have a retrovirus, I hope I have a retrovirus, I hope I have a retrovirus (Dorothy in "OZ" only had to repeat "there's no place like home" 3 times and wish granted...!)

If this wish isn't granted, will there still be someone at WPI to figure out what is happening to my immune system and my brain to be causing everything?

P.S.I haven't been tested yet, I will in the future

Actually, I really don't Care WHAT I HAVE.........as long as it can be treated and I can have a better quality of life. Like everyone, I just want a better quality of life.....whatever I have, I have........
 

bakercape

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Maybe there is another

undiscovered virus/retrovirus

I really think someone/ researchers need to go back and look into elaine Defreitas's research again.
Why is no one doing this?

I mean she was in the same situation as the WPI is right now except without the support of some others like the NCI and CC.

What if the virus she fealt she found is making the resto of us sick who are XMRV/MLV neg?

If we can find one new retrovirus in CFS/ME patients why not look for more?
 

Stone

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When I sent my blood in for my XMRV/MLV test at VIPDx, I first had to request a blood collection kit which includes the requisition and paperwork you fill out for billing. I took it to my doctor's office, had the doctor sign the requisition and his office supplied the ICD-9 diagnosis code for CFS (but you can Google that yourself if you need to). I took the signed requisition, billing paperwork, blood collection kit (with tubes) and the FEDEX shipping bag and airbill to the lab (all of these supplied by VIPDx). The lab at my doctor's office drew my blood in the serum separator tube (SST) which is then allowed to clot for about 10 minutes and then they centrifuged the tube for 10 minutes according to instructions which also happens to be standard procedure for this kind of blood collection tube anyway so they are very familiar with this procedure since they do this all day. They put the tube in the styrofoam box from VIPDx, gave it to me and I put the styrofoam box containing the tube into the cardboard outer box, included the necessary requisition and billing paperwork, and placed the whole works into the shipping bag specially designed for biological specimens by FEDEX (again, all of this was supplied in the collection kit from VIPDx). I took it to the nearest FEDEX office where I had the clerk properly affix the airbill label and seal the bag because I wasn't sure how that was supposed to go. It was then placed with other outgoing packages for pick-up and next day delivery.

You should have your blood drawn in the afternoon to insure that it's not more than 24 hours before it arrives in Reno. Also, make sure the phlebotomist who draws your blood writes your name (matching the requisition), your date of birth and the date and time of collection clearly on the label of the tube. That's all there is to it. I did not leave it to the lab to call FEDEX, I delivered it to FEDEX myself. Also, I used the tracking number on my copy of the airbill to check online to see that my package arrived in Reno, so it was not necessary to email VIPDx to confirm delivery.

Concerning your XMRV/MLV status. I really feel that the testing for this thing is in it's infancy and that as testing methods and protocols are improved, the rate of positives in "our disease" will go up, way up. I don't think the science is showing that the place where this retrovirus likes to congregate in great numbers is the blood, and therefore, the blood may not be the best thing to test to look for this thing. Blood is just the most convenient way to look for it, that's all. It's like looking for your lost keys under the street light because you can see better there, even though you dropped them under a tree 200 feet away in the shadows.

I think that as the technology and science evolve, the number of people with "our disease" who test negative will end up being less than 5%, so fret not. I think we're going to see much more accurate testing on the scene at some point in the relatively near future, and once causation is established, this more accurate testing should be covered by insurance. I only hope that it doesn't turn out that the best tissue to test is something uncomfortable or risky to access, such as cerebral spinal fluid which would require a lumbar puncture. I underwent one of those once and I'm not eager to repeat it, but it was necessary at the time. If it does turn out that this is how we have to be tested but the rate of false negatives is only 5%, I'd take the leap if I had to, I think. I would be reluctant, but I would do it if it meant that if positive, I could be treated and have a better life.
 

Lynn

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I also took my blood draw straight to FedEx to ship to VIP. I called VIP yesterday as it has been 4 weeks since I sent the sample. They told me it will probably be another 2 weeks.

Lynn
 

Stone

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I also took my blood draw straight to FedEx to ship to VIP. I called VIP yesterday as it has been 4 weeks since I sent the sample. They told me it will probably be another 2 weeks.
Oh good! Then maybe mine will only be a few more weeks
 

serg1942

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Hi guys,

I am one of the maaaaaaaaaaaaaaaaaaaaany PWCs waiting for the VIPdx XMRV tests results...and I don't want even to think of the possibility of being XMRV-...

I am from Spain, and these were my main concerns:

- Is VIPdx looking for the secuencies of the rest of MLVs found by Alter, Lo, et al.? if not, do the XMRV env antibodies form just in response to XMRV, or also in response to the rest of MLVs?

- Is XMRV present also in Europe?

- I am what I call: "toxic CFS", i.e., I was poisoned by amalgam fillings, and years after suffering a huuuuuge Hg poisoning I suddenly fell sick--No mononucleosis, or "super flue", or infection symptoms before the oneset of the illness...just a sudden crash...So, What about the "toxic PWCs"? Are we XMRV+ anyway?

So far I only have the answer to my second question: YES, XMRV is being found in Europe and also in Spain (good!)

I have no idea about the other two questions...So, for those of you who are XMRV+, would any of you define yourself as what I call "toxic CFSs"???

Thank you and cheers for those XMRV-, as I' m sure we'll figure out what's going on!
Sergio
 

ukxmrv

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Sergio, XMRV is certainly in the UK but I don't know how many other European countries. We have a lab sending to VIP dx every week with private tests. People do come here from other european countries for testing but I don't know who and where.

I'm not a toxic patient, sorry. Acute viral onset. Not aware of any UK toxic XMRV+ people but early days and I hope one of them will make themselves known, now that you have asked.

VIP dx told me that yes, they have included the same MLV's as per Dr Alter, Lo et al in the new tests.

The UK patients who had an earlier negative result through VIP dx are being retested using the new one.

XMRV+
 

dannybex

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Maybe you fit a sub set of cfs mono group like the ones that dr lerner has had some success treating.
I agree with Heapsreal. If you have EBV and HHV-6 you seem like a perfect candidate...

You can be deathly ill and still be XMRV-negative. Many patients have gotten a lot better on Valcyte and other antivirals.

Julia Rachel and her son are two such patients. Her son was ready for HOSPICE care a year or so ago, and is now doing well enough to attend college part time.

Here's a link to her blog:

http://vlgonvalcyte.wordpress.com/

She also posts her on PR. And there are posts about Lerner and other docs using antivirals.
 

heapsreal

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I dont think there is enough proper standard testing to put people into sub groups which i think alot of us belong too. The herpes infection sub group of cfs just wont go away, it keeps popping up. I think it needs further investigation. Theres also the lyme , mycoplasma group , retrovirial group and the poor buggers that have a bit of everything. If your negative to xmrv, it could be a good thing, i think our concerns of being xmrv negative is that we are going to get thrown in with the psycho babblers, but theres enough evidence to suggest everything i have said can cause cfs, docs just need to test the lot. I think montoyas study on all the infections will produce some interesting answers, anyone heard much on his new study of late.

I agree with Heapsreal. If you have EBV and HHV-6 you seem like a perfect candidate...

You can be deathly ill and still be XMRV-negative. Many patients have gotten a lot better on Valcyte and other antivirals.

Julia Rachel and her son are two such patients. Her son was ready for HOSPICE care a year or so ago, and is now doing well enough to attend college part time.

Here's a link to her blog:

http://vlgonvalcyte.wordpress.com/

She also posts her on PR. And there are posts about Lerner and other docs using antivirals.