Question for those who are XMRV+

[JAXintheCity]

Hi All!

I'm new here... though not new to the world of ME/CFS.

I was wondering if anyone who tested positive for XMRV, has also tested in the past for re-activated/high titers of EBV, HHV6-A, M. Pneumonia, CMV, candida etc?

This question might have already come up (or be in the wrong place) so I apologize if so!

JAX

 

[VillageLife]

I read somewhere that the WPI said, that only 10% of xmrv positives were testing positive for the other viruses.

 

[sphynx on roundabouts]

I read somewhere that the WPI said, that only 10% of xmrv positives were testing positive for the other viruses.

Do you remember where you found that information? Sounds interesting but I really though it would be much higher than that.

 

[Sunshine]

Hi All!

I'm new here... though not new to the world of ME/CFS.

I was wondering if anyone who tested positive for XMRV, has also tested in the past for re-activated/high titers of EBV, HHV6-A, M. Pneumonia, CMV, candida etc?

Hi Jax. Yes I have got another virus, but only the single not multiple.

Having said that.... note that most ME/CFS patients do not have access to tests (blocked by state health care) or cannot afford to pay for testing so they simply do not know. This includes people who are XMRV+

Also note that people can and do pick up other infections/re-activate them, especially when in a relapsed state. So when XMRV+ people report back they may have zero or a single infection, when were they last tested and were they in a better period of health? etc etc.

Ideally people with ME/CFS (XMRV+ or not) need to be monitored at least once every 6 months for the sort of things you are asking about, sadly this is not the case and so it's left to the private health care sector. Due to long term disablity and induced poverty from this, funds may be so short ME/CFS patients are only able to test once every 5-10 years E.g. 've not had Candida or other infections seen in the immuno suppressed tested for..... What people need who are XMRV+ is to be monitored by a doctor, instead of by the psych lobby who 'detect' their belief of a XMRV+ blood test result!

 

[VillageLife]

Do you remember where you found that information? Sounds interesting but I really though it would be much higher than that.

No sorry, i dont remember where I heard it....but it was 10%

 

[grant107]

I had reactivation of the zoster virus twice. I had reactivation of CMV when I first got sick. I no longer get tested for viruses.

 

[KC22]

I see Dr. Lerner. His theory is that the retrovirus knocks the system down and that's how all the other viruses are able to manifest. Also, I have read and I can't say where that Dr. Mikovitz believes this theory, too. However, if you are taking anti-virals, it is hard to detect XMRV. I have all the things you mentioned except candida. I haven't been tested for XMRV yet. I am waiting for a reliable and cheaper test. If they start offering treatment, then I will definitely get tested.

 

[JAXintheCity]

Yeah, when I was first diagnosed (in 2000) I tested positive to HIGH reactivated titers of EBV and HHV6-A.

I got tested again in 2007, and while my HHV6-A had gone down, my EBV went up....and in addition, I had reactivated titers of M. Pneumonia and a Candidaisis (sp).

I haven't tested yet for XMRV, because I don't have a doctor at this point. Luckily, I went on new insurance on Sept. 1st and made an appointment with a highly rated doctor in Philadelphia. Of course, having such good reviews -- I don't have an appointment till November!

I'm a little nervous to bring up testing for XMRV, though... too many bad experiences with doctors. Was just wondering, being a retrovirus and all, if the activated titers of viruses and XMRV can be related.

JAX

 

[Sunshine]

Was just wondering, being a retrovirus and all, if the activated titers of viruses and XMRV can be related. JAX

They would be directly related, yes.

ME/CFS patients activate other common infections the non immune supressed can keep at bay. Retroviruses are known to do this, to allow 'co-infections' to flourish.
The fact ME/CFS patients are found to have an exogenous retrovirus fits in perfectly with the symptoms patients report and the method they claim to get viruses by, and the associations patients make with 'germs' making them worse.

Didn't we have a quote here once saying that Dr Daniel Peterson (correct me if I'm wrong) said the average person has 5 or 7 viruses, but the average ME/CFS patient has 50?
It was something along those lines and a huge difference. Being he is a world expert on ME/CFS I go with what he says, him and Cheney.

Think of how we report we deal with viruses to our doctors. E.g. an ME/CFS Patient may say 'I was getting a bit better until I got a cold off my sister and 'bam' relapse'. That's a good time to get tested and look for HHV-6/EBV/CMV/etc.. Yet a psych would say you haven't gotton worse, you're somatizing. You got a bit better but your mind attributed increased symptoms to a virus. LOL!!! Seriously. And you'd need mind rehabilitaition with CBT to stop 'medicalising' your CFS. Arhjhjhjjhjh.

Myra McSure found 0% XMRV in CFS on behalf of Wessely, how could they possibly allow themselves to find anything in ME/CFS if spending decades that viral attribution is the epitome of a hysteric. XMRV blows their 'theories' on people with 'mal-adaptive' behavioural responses out of the window.

I'd bet a large amount of money at the bookies within 5 years XMRV/MULV is proven to cause immune supression and brain disease in people who were once called ME/CFS patients. Unfortunately, I'm broke.

 

[JAXintheCity]

[/QUOTE]I'd bet a large amount of money at the bookies within 5 years XMRV/MULV is proven to cause immune supression and brain disease in people who were once called ME/CFS patients. Unfortunately, I'm broke. [/QUOTE]


LOL, me too! I'd live on spaghetti...but it makes my CFS symptoms flare!

 

[LJS]

I am XMRV+, have high levels of EBV, extremely high levels of HHV-6, positive for M. Pneumonia, and CDC positive with Lyme (has now gone negative after one year of IV antibiotics).

 

[heapsreal]

Hi LJS, does it help if you treat these infections.

Also does anyone get regular immune system tests like lymphocyte sub set tests done, although doesnt pick up specific infection can tell us if our immune system is trying to fight something. In australia it is hard to find a lab(i havent found one yet) that gives titre values of herpes infections like ebv, cmv. I havent been tested for xmrv but aleays have elevated lymphocytes which have come down when on antivirals.

I am XMRV+, have high levels of EBV, extremely high levels of HHV-6, positive for M. Pneumonia, and CDC positive with Lyme (has now gone negative after one year of IV antibiotics).

 

[Xandoff]

I just sent my blood in two weeks ago for both the XMRV Virus culture and Serology as

I have never been tested for any thing pertaining to CFS but have had all the other tests that Doctors run that come back okay or borderline. My GP is myred in the CDC deifinition of CFS (Child abuse and maladaptive behavior to stress). I am gratefull as she does treat me for my pain and other area's but she is IMMUNE to anthing CFS.

Has anybody had the two tests I ordered? It's weird to say & pray that I will be positive. I am hoping it will open some doors for me which seem nailed shut right now.

I don't see Doctors as the bad guys, they are too busy to follow this stuff. Heaven knows I would not know anything about this if I did not have it. It is depressing to have your Doctor view you as a drug seeker and a hypochondriac even though they have watched you detioriate.

They get frustrated and jaded to my repeated requests for tests they do not want to run. I told my Doctor it's not her Insurance Money, it's mine. That went over like a Led Balloon.

Some days I feel like a led balloon. I can hardly wait to get the results. It will be my XMRV on line-GED!

"WEAKNESS IS TIRING, BUT STRENGTH IS EXHAUSTING"...Charles Dickens Nicholas Nicklebee

 

[LJS]

Hi LJS, does it help if you treat these infections.

Also does anyone get regular immune system tests like lymphocyte sub set tests done, although doesnt pick up specific infection can tell us if our immune system is trying to fight something. In australia it is hard to find a lab(i havent found one yet) that gives titre values of herpes infections like ebv, cmv. I havent been tested for xmrv but aleays have elevated lymphocytes which have come down when on antivirals.

It has helped treating Lyme and the use of some antivirals but never a substainal difference, I am still unable to work. Treating the Lyme took away almost all the pain I was having. I did a full immune system workup a few years ago, I forget the results but a few things were off, I remember my T-Cell (T lymphocytes) count was very high.