Xmrv Retrovirus Testing - Who Is Going To Order/do This?

[iheartcats]

I called and ordered my kit - http://www.vipdx.com/. It's about a month wait for it to be shipped out this is so popular.

I feel as if I need to know. I have CFS symptoms and POTS.

They are not affiliated with insurance companies, though, so I know my insurance will pay little if anything.

PCR Test: $400 (Live Virus)

Latent Virus Test: $500

or

Both Tests: $650

I'm going to discuss with my PCP if we want one or both. Since it's so expensive and will likely be out of pocket, I don't want to spend more than I must. Would ours most likely be latent? Latent would not show the active virus, correct?

I'm so torn. It's very $$$ but what if this is actually something that really helps?

Also, please discuss the pros and cons of this test. I was hoping it'd be a test you could just get done at a local lab, but it's more involved than that. I've never dealt with something like this before.

(Maybe I should ask for the test for Christmas. HAHAHA).

[sarahmarie43]

Merry Christmas, you have XMRV!

I have also wondered (but not yet researched) how to be tested for this. I was also hoping it would be simpler and less expensive, but perhaps since it is still being studied it may be a while before it becomes more of a standard lab test.

It's too bad that there is such a price on health...

I also have CFS and POTS, and I know that my POTS is caused by EDS, but even when my BP is "stable", I am still absolutely exhausted. And if we do have the virus and there is a way to treat it, it would absolutely be worth any amount of money to feel better.

Let us know if you end up completing the test. I'm hoping for a clinical trial in my area that tests for it, because then it would be free, but I have no idea how far off they are on that.

I guess I need to do some reading.

[erik]

I can completely relate to the desire to know if XMRV is present or not. After that, and I am not diminishing the value in that... what would be a treatment? Is there something borrowed from AIDS management that would apply? Or just a simple anti-viral? I don't know anything about "retro virus" stuff. I took an anti-viral for a shingles thing years ago and had no bad reaction... I'd be willing to try it experimentally regardless of XMRV status (I also seemed to get better from doxycycline a while back, even without actual evidence of bacterial infection... and plan on trying that again). Would there be a logical treatment awaiting us for XMRV or would that be another huge step for researchers... like curing AIDS (which they'll likely focus on first)?

[iheartcats]

I can completely relate to the desire to know if XMRV is present or not. After that, and I am not diminishing the value in that... what would be a treatment? Is there something borrowed from AIDS management that would apply? Or just a simple anti-viral? I don't know anything about "retro virus" stuff. I took an anti-viral for a shingles thing years ago and had no bad reaction... I'd be willing to try it experimentally regardless of XMRV status (I also seemed to get better from doxycycline a while back, even without actual evidence of bacterial infection... and plan on trying that again). Would there be a logical treatment awaiting us for XMRV or would that be another huge step for researchers... like curing AIDS (which they'll likely focus on first)?

My PCP mentioned the possibilities of trying anti-virals to treat it, if I do have it...and looking for a clinical study testing the drugs. I believe word is still out on which meds can treat it, but there are studies being done.

What I don't know is if it CURES it or just REPRESSES it. I guess I can ask my PCP the theory on that next visit. I know HIV can't be cured at this time. And Viruses are still evil little beasts we have to deal with...I don't know if there's something that will kick it into remission enough to 'cure' someone if they have it?

Here's what I found online about the anti-virals:

"Unlike antibiotics, antiviral drugs do not destroy their target pathogen; instead they inhibit their development."

Here's an anti-viral study when tested with XMRV/Prostate cancer:

http://www.pnas.org/content/104/5/1655.abstract

(And HaHaHa - Merry Christmas, you have XMRV! ... I might steal that for my holiday cards).

[erik]

I see. I guess anti-viral hinders the virus but the body must then take it out completely if possible via immune response. Or it can tamp it down enough to suppress symptoms... I know a doctor here that takes powerful antibiotic for that purpose, for whatever reason it can't clear the infection but keeps it at bay, preventing him from going septic (again), yet never cures him, just keeps him alive!

I suppose if the virus were precipitating neural damage it could involve the long process of nerve regeneration after eliminating the threat. I've heard things can sometimes regenerate with time. Also, there are some "odd" drugs claimed to have neurprotective or neurogenerative effect... I think one of the anti-depressants is credited with this. Or there is that BDNF (brain derived neuroprotective factor) stuff, or whatever it's called. Hope some advances are made in those fields too.

If it's just changing some standard body process, then it's elimination could be a full cure perhaps. One can hope!

(And HaHaHa - Merry Christmas, you have XMRV! ... I might steal that for my holiday cards).

Might work for Halloween... for a trick-or-treat thing??? What would a "retrovirus costume" look like? Vira are mysterious little beasties! Hmm, maybe a cross between this cyber-squid lookin' thing (PICTURE) and an 80's rubik's cube (PICTURE)??? "Retro"... get it? Viva las 80's

[ramakentesh]

The article in the New York thingie said that they are already writing proposals to try a variety of anti retroviral medication (some of them being AIDS medications) and they believe that the XMRV virus will be easier to supress than other retroviruses.

Check out their site - its quite fascinating:

http://www.wpinstitute.org/

[EarthMother]

From that same site Rama mentions

http://www.wpinstitute.org/xmrv/xmrv_qa.html

They indicate that

"The WPI has developed a blood test for the detection of XMRV and we are currently negotiating an agreement with a clinical laboratory to allow for limited testing. These services will be made available as soon as possible and we will provide information on this site as to how the test can be requested. We cannot offer individual testing and results from our research lab. Please check back here for updates."

I'm hoping this is not the same limited testing that vipdx is doing for $400 a pop. While I have certainly paid out of pocket before for "specialized" testing ... my pocket book can no longer afford to do so and in this case I'm willing to watch the early adopters to see how this all pans out.

Keeping fingers crossed (and legs too, but that's just a vasovagal counter maneuver ;-)

[HopeSprings]

I would hope this test will be available to Dr's AND covered by insurance once the findings are more concrete? Wouldn't it be amazing if there was finally a blood test to diagnose this? I am desperate to know WHAT has been causing this!

[dsdmom]

The idea is that they can start studies now with current anti-retrovirals that are currently used on HIV patients. However, XMRV is a less complicated virus than HIV and there's hope that different, less toxic drugs could be devloped.

Cat lady, as far as the VIPdx test goes - I also am awaiting my test kit but I also spoke with the woman there for a while and found out that in a few months they will also be testing serology (antibodies) which will be important. It may pay off to wait a bit before being tested since you wouldn't want to pay $ twice. And really no treatment is going to be available right now unless your doc is going to throw you on AZT which I doubt.

[erik]

Yeah. I'd take a standard anti-viral (again) without much worry or hesitancy (though one should always worry a little no matter what you're taking).

I'd be hesitant to take a more "serious" anti-viral like I presume some of the HIV ones are. Then again, I don't know much about HIV/AIDS so I'm admittedly roaming the land of assumption here!

Anybody know of solid animal models for POTS and other dysautonomias. I bumped in to one study that listed some bad things used to induce O.I. or O.H. or something. Sorry to allude to the crueler side of medical research, but does XMRV itself (or a similar analog) infect animals that can be used to this effect?

[dsdmom]

Erik,

I think they are still trying to figure out causation - so do not know of any studies showing that infecting an animal with xmrv gives them cfs. Don't know how you would measure that really...

But that being said, I did come across something that said that "What's more, some characteristics of the virus match up with the syndrome's symptoms, she says. Viruses related to XMRV can cause blood vessels around the body to leak, a common symptom of CFS. Mikovits also notes that in mice, a protein that coats the shell of the virus causes the animals' nerves to degenerate. A class of immune cells called natural killer cells, which are thought to go wrong in CFS, are known to be susceptible to infection by the virus."

Maybe the nerves degenerating is akin to neuropathy?

[ramakentesh]

Fingers crossed is all I can say every time I read about this virus.

Vessel leakiness has been documented in POTS many times. As has nerve disfunction either from abnormal expression of norepinephrine receptors or abnormal expression of transporters.

When I took butchers broom I was AMAZED by how well I felt at first - it stops blood vessel leakiness - but it stopped working after a week or so and made me feel worse. Interesting.

I think we all deserve a break - im hoping that XMRV might be that break at least for some of us.

Even if some of us are XMRV free, if XMRV is shown to cause these problems then perhaps it follows that it might help understand why they occur.

[juliegee]

I "chatted" (via E-Mail)l with Dr, Rowe at Hopkins today about this. He's CAUTIOUSLY optimistic. He wants to see consistent findings across many labs that link this retrovirus with CFS. He's very hesitant to jump on the ant-viral bandwagon as a treatment until then, BUT agrees it warrants further investigation.

Julie

[ramakentesh]

Good point. Cautious optimism.

[ramakentesh]

There is an interesting discussion here:

http://www.virology.ws/2009/10/15/xmrv-and...tigue-syndrome/

the virus originally comes from mice LOL.

[ramakentesh]

Sorry to bump this but I wanted to point out that the catagory used for inclusion of this study were CFS patients who fit the 'Canadian' model:

The Canadian Clinical Case Definition is summarized as follows:

1. POST-EXERTIONAL MALAISE AND FATIGUE: There is a loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen. A pathologically slow recovery period (it takes more than 24 hours to recover). Symptoms exacerbated by stress of any kind. Patient must have a marked degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level. [Editor?s note: The M.E. Society prefers to use ?delayed recovery of muscle function,? weakness, and faintness rather than ?fatigue.? Further, we disagree that the muscle dysfunction and post-exertional sickness is ?unexplained.? See our Cardiac Insufficiency Hypothesis page and our Research-Based Subsets page for researchers? medical explanations on this website.]

2. SLEEP DISORDER: Unrefreshing sleep or poor sleep quality; rhythm disturbance.

3. PAIN: Arthralgia and/or myalgia without clinical evidence of inflammatory responses of joint swelling or redness. Pain can be experienced in the muscles, joints, or neck and is sometimes migratory in nature. Often, there are significant headaches of new type, pattern, or severity. [Editor?s note: neuropathic pain is a common symptom and should be added here as well.]

4. NEUROLOGICAL/COGNITIVE MANIFESTATIONS: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, difficulty with information processing, categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory disturbances, disorientation, and ataxia. There may be overload phenomena: informational, cognitive, and sensory overload -- e.g., photophobia and hypersensitivity to noise -- and/or emotional overload which may lead to relapses and/or anxiety.

5. AT LEAST ONE SYMPTOM OUT OF TWO OF THE FOLLOWING CATEGORIES:

AUTONOMIC MANIFESTATIONS: Orthostatic Intolerance: e.g., neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension, vertigo, light-headedness, extreme pallor, intestinal or bladder disturbances with or without irritable bowel syndrome (IBS) or bladder dysfunction, palpitations with or without cardiac arrhythmia, vasomotor instability, and respiratory irregularities. [Editor?s note: low plasma and/or erythrocyte volume should be added as another explanation for orthostatic intolerance in this disease. More cardiac symptoms should be listed such as left-side chest aches and resting tachycardias, which, in addition to low blood volume, have also been documented in the research.

NEUROENDOCRINE MANIFESTATIONS: loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery, and emotional lability.

IMMUNE MANIFESTATIONS: tender lymph nodes, sore throat, flu-like symptoms, general malaise, development of new allergies or changes in status of old ones, and hypersensitivity to medications and/or chemicals.

6. The illness persists for at least 6 months. It usually has an acute onset, but onset also may be gradual. Preliminary diagnosis may be possible earlier. The disturbances generally form symptom clusters that are often unique to a particular patient. The manifestations may fluctuate and change over time. Symptoms exacerbate with exertion or stress.

So basically a patient would be included only if they exhibited clinical evidence of orthostatic intolerance OR symptoms such as loss of tolerance to stress.

Im quite certain that many POTS patients would fit this classification.

[ana_22]

Rama- do yu have any info on whether this will be available in oz? i have rad you can order in the USA.

[kayjay]

I wonder what would happen in someone like me who has been sick for 11 years. I have had every symptom Ram mentions- but now things seem to be more chronic- less acute- interesting- Wonder if you can inhale this virus?

[firewatcher]

Please forgive my ignorance, I have not yet read any of the retro-virus articles.

My questions/concerns with this theory is that how many in the "normal and healthy" population ALSO have this virus circulating? If CFS and certain dysautonomias (POTS) are caused by a virus, it has been around a VERY long time, at least since the 1860's!(DaCosta's first mention of Soldier's Heart) Granted, a virus will mutate along the way, but after almost 150 years, you would think that there would be a far greater exposure than those would currently have POTS/CFS. Perhaps all this would lead to new treatments, perhaps even vaccines, but I am unsure about the virus being the root cause.

As for the terms of the Canadian study, I fit all the criteria except the last; my lymph nodes only swell when I'm sick.

Wouldn't it be cool if they found that a virus causes migraines! I'd take that anti-viral for the rest of my life!

[ramakentesh]

The RNA of the retrovirus in question was very similar in collections from different areas which would suggest that its a fairly new virus. Other retroviruses have significant regional mutations.

Such a similar RNA profile might also suggest contamination but you'd assume these guys would know what they are doing.

Even if its proven as a major cause of POTS or CFS it wont account for all types - as an example low flow POTs has been demonstrated to be caused by a genetic defect in angiotensin II metabolism.

[ana_22]

i think only 3% of healthy controls they tested, tested positive for the virus. not sure if it was that figure but it was under 10% for sure from what i remember reading.

[juliegee]

3.8% is what I read.