karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Has anyone done a blood test for XMRV?
My doctor(not LLMD) wants me to do a blood test which is now on the market. He is treating CFS patients regularly and obviously believes in this test.
Posts: 1834 | From US | Registered: Oct 2008
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posted
You can get the test done through your regular doctor. He should be able to figure out what to do. There is no treatment available right now anyway.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
karenl,
If it did come back positive, what would he be treating you with?
Just curious. I'm assuming if he is bothering to do the test, he must have something in mind to give you if it's positive.
The thing that has been holding me back from getting tested for XMRV is that I don't know of any doctors that have treatment that they can tell me will help it, if I do have it.
I did test positive for Lyme and babs and bart, so I figure that is for me personally the most likely candidate(s) right now causing my fatigue.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Discussions about testing here: http://forums.aboutmecfs.org/forumdisplay.php?f=57 note that the person (patient2)who went to a doctor doing some sort of homeopathic injections (Joey knows more about that, see his blog pathogensoup.blogspot.com) actually tested indeterminate, so it seems like that does help for this virus. She started treatment before there a was knowledge about xmrv, and got tested now recently)
Posts: 366 | From Europe | Registered: Nov 2008
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posted
Just wanted to add that I got the XMRV PCR and viral culture done by VIP Dx and I'm positive for the viral culture (which means they found virus inside the cells.)
Not sure what I think of this virus yet, as replication of the initial study results and treatment options will take at least 1 year to get off the ground and possibly several years to get a series of antiretroviral cocktails and testing refined to the point of having a cheap FDA-approved test for the virus.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
Several people have tested completely negative or only positive to the viral culture. XMRV is far from established in its role in CFS, but I am convinced retroviruses have a big role in the initial incline village outbreak of CFS and other CFS patients that have the same biomarkers.
FWIW, I've treated lyme and co-infections with long-term antibiotics and biophotons (bionic 880) with little improvement in symptoms. All my classic CFIDS symptoms remain.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I don't know your full history, m0joey, but maybe you didn't have Lyme...?
I have been ill for many years & I don't think my Lyme diagnosis was accurate.
I'm not sure about XMRV & I'm not really interested in testing for it at this time. I'm going to see how things develop for a bit. I do think this may be a big piece of the puzzle for people who seem to be chronically ill.
At least it gives some hope that there may be a cure or at least pulls CFS out of the thinking that it's a psychological disorder...
Each case seems to be unique from what I have observed. If it does boil down to a retrovirus - all the treatments we may be doing may turn out to be worthless...
Just something I'm considering.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
mOjoey, I thought the Bionic 880 made a huge recovery for you. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
It is sad to see how many of us just can't seem to shake our illness. I know many ppl with LD get treated and move on; but there seems to be a percentage of us that just can't over come it.
Makes me wonder what else we all have. Maybe it is XMRV, maybe not. I would be interested in being tested if more was known about what to do about it.
Sparkle it would be just devastating if all this treatment turns out to be worthless. But for now, its all I got.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
karenl - Someone named Stephen (I think StephenP) just posted a thread on this a couple of weeks ago. Will try to bring it up if I have time, otherwise, you can do a search. All kinds of good info.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
sutherngrl - Yes, I'm very aware of this... I know exactly how you feel.
I see what people are going through - especially with the "it gets worse before it gets better" routine. I've been though it.
There seems to be a subset of us that are not getting better. I do have hope that something will work. I just don't know if it's anything that we have been doing.
If it is a retrovirus - we have to rethink everything. I don't know if herbs, supplements, rife, alternative treatments, etc. can reverse damage from a retrovirus.
XMRV may not be the only one, either. There could be many of them that are still undiscovered.
I'm trying something now with amino acids & supplements but I'm not sure if it's going to work. We may have to wait until they come up with a drug that is effective for the specific damage being done.
I'm not a scientist - so, that's as technical as I can be about it. It's really quite complex.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Sorry it took me so long to post results here: I am positive for XMRV culture, neg for PCR from VIPdx (the only test I would trust at this point).
The neg PCR is trivial since their revised test kit does not even include it. A positive culture is enough to establish viral presence, latent or not.
I do believe this is the lynchpin for me, because of my high IL-8 count (the only elevated cytokine, and also the one most highly correlated with XMRV) , very low NK cell count and NK cell cytotoxicity (instead of infecting the T-cells primarily--think HIV--XMRV seems to target NK cells).
To touch on the bionic question above: yes it helped lower my infections and symptoms, but only about 10-20%. My WBC never came back up from low 4's and NK cell also didn't revive. That screams retrovirus.
The trouble now is treatment. I am doing neural therapy with isopathy and haptens, which I believe can be effective against retroviruses as well as rebooting the cells similar to AI and KPU, but the jury is still out. If I am symptomatically recovered I will retest xmrv culture post-treatment.
I'm also keeping my eye on the development of a XMRV nosode by homeopathic companies. I will definitely treat this with the Bionic when this happens. I would definitely pursue electromagnetic treatment (maybe F165 and SC1 if Bionic doesn't help) and other energetic options before I take a antiretroviral drug for life.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
@m0joey, where do you get the thing about XMRV and NK cells from? It's interesting. As we know, CD57 is one of many NK cells...
Posts: 275 | From Home | Registered: May 2007
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posted
"After that small flurry of retroviral studies didn't pan out the scientific community mostly begged off the viral hunt in ME/CFS. Part of the reason was just our bad luck. HIV was killing people by attacking T-helper cells, the masterminds of the late immune response. T cells were and are a hot item in the medical research community, and for good reason; it's the late immune response that is primarily responsible for finally knocking down a pathogen. ME/CFS patients T-cells showed little evidence of substantial dysfunction; ergo infection was probably not the problem in chronic fatigue syndrome.
The natural killer cells in the early or innate immune response are, however, severely affected in ME/CFS. The early early immune response is responsible for identifying pathogens and engaging them a holding action until the cytotoxic T-cells come to the rescue. Natural killer cells weren't getting much respect back then but they are now and a new class of drugs aimed at the early immune response will reportedly hit the market in the next couple of years. If AIDS wipes out T-helper cells, it may be that XMRV in ME/CFS patients knocks out natural killer cells; AIDS and ME/CFS patients may suffer from a similar problem but in different parts of the immune system."
"Ground Zero In the Immune System
Natural killer cells may be ground zero in the immune dysfunction found in chronic fatigue syndrome (ME/CFS). These cells, which man the first lines of our immune response, troll the body looking for invaders and infected cells and destroying them and then raising the alert. Again and again studies have found dysfunctional natural killer cells in ME/CFS. Anecdotal reports from the WPI indicating that the natural killer cells in ME/CFS patients are loaded with this virus suggest a possible cause to one of the most significant dysfunctions in this illness."
Once the innate immune response research got cranking it took some remarkable findings in the late 1990's and the early 2000's regarding the RNase L enzyme and ME/CFS to eventually to turn Dr. Mikovits head toward Dr. Silvermans work on XMRV." --
posted
CD57 is a subclass of NK cells, but is used more as a diagnostic marker (and an unreliable one at that) for lyme, not ME/CFS. FWIW, mine was very low-normal (60), and definitely provided further evidence my innate immunity was shot.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
To answer your question, the moderators moved my post to the general, and activism. So you will have to look there for the new Columbia study on XMRV and the connection to lyme and CFS.
Sorry, they asked me not to post it in medical as they said it was not medical?
Posts: 1009 | From NJ | Registered: Aug 2009
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